KNOW AUTISM, KNOW YOUR CHILD with < My Thoughts > by Sara Luker 2024
UNIT 2 – Why Is It Autism?
CHAPTER 2 – Denial & Misdiagnosis
APPENDIX B LATEST ASD FINDINGS
CHAPTER 3 – Doctors & Direction
APPENDIX C DEVELOPMENTAL SCREENINGS
PLEASE READ DISCLAIMER –
UNIT 2 – Why Is It Autism?
CHAPTER 2 – Denial & Misdiagnosis
APPENDIX B LATEST ASD FINDINGS
CHAPTER 3 – Doctors & Direction
APPENDIX C DEVELOPMENTAL SCREENINGS
PLEASE READ DISCLAIMER –
CHAPTER 2 – DENIAL & MISDIAGNOSIS
DENIAL
Stagliano, K. & McCarthy, J. (2010) – One summer, my sister Michele was visiting from Texas. Her son Colin was four years old. We only saw each other once or twice a year, so this was her first opportunity to spend time with my girls since the previous summer.
“Mia has autism,” my sister said hysterically. “How could you not know?” “How dare she say that!” I was immediately angry. She was shattering my carefully built wall of denial. Now, I realize it took a great deal of love and courage for her to drop that on me.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), an ‘Intellectual Disability’ (ID) is a chronic condition involving impairments in intellectual functioning, and deficits in adaptive functioning, present during developmental periods. Stating that Autism Spectrum Disorder (ASD) is a pervasive developmental disability defined as persistent deficits in social communication; plus, exhibiting a pattern of restricted or repetitive behavior, interests, or activities.
When it is not obvious to the practitioners whether ID or ASD is prevalent, the DSM-5 is said to help identify if the diagnosis should be ID with ASD symptoms. Or, ASD as comorbid, or with, or having features of ID. They also conclude that being bi-lingual and/or of female gender may be influence misclassification of symptoms.
< My Thoughts > “…female gender may be influence misclassification…”
Often, girls seem to wait and watch. Appearing to be natural communicators, socializers, and imitators which may somehow ‘temper’ their more subtle autism symptoms. The literature shows that girls are better at camouflaging their behavior, which helps them fit in.
Perhaps society is more accepting of their ‘diva’ performances because while inappropriate and irritating, they are somewhat entertaining. But, as girls become older, those with milder indications, higher intellect, or higher on the spectrum, such as ‘Asperger’s’, may be found to have passive-aggressive behavior tendencies, eating disorders, depression, or other disorders.
Mandy, W. (2013) explains that the current diagnostic criteria and diagnostic tests miss girls, because those criteria were mainly derived from studying the disorder in males. What’s more, the female autism phenotype may be especially difficult to detect in those with average and above average intelligence.
Wolff, J., Dimian, A., et al. (2019) say that atypical behavior responses to external stimuli are a common feature of ASD. Children with autism can have unusual interests in sensory aspects of the environment. For example, they say that a child may exhibit distress in a noisy classroom, but show no reaction to a loud vacuum. Another example would be a child insensitive to a wide range of visual and auditory stimuli, but showing a marked reaction to being lightly touched.
Kedar, I. (2012) – Imagine being stuck in an educational program, year after year, that is designed for preschooler who learns slowly.
You are lonely, though surrounded by people, and you know that this will be your entire life if you do not gain a means to communicate more than your basic needs. But no one is teaching you how.
You are bored, frustrated, angry, misunderstood and more than a little hopeless. You turn to repetitive behaviors, or ‘stims’ which create a sensory drug-like experience that takes you away from the pain but makes the situation so much worse by pulling you farther from reality.
< My Thoughts > “…’stims’…”
‘Stims’ are ‘stereotypic’ behaviors. ‘Stims’ is an abbreviation for ‘stimming’, also known as, ‘self-stimulatory’ behavior. This usually refers to hand-flapping, rocking, spinning, or other repetitious behaviors and/or sounds which help those with neurological disorders ‘cope’ with the stressors they are experiencing.
Cariello, C. (2015) can tell you that her son Jack has a tendency to do what’s called perseverating; he focuses repetitively on random subjects, sometimes for months – car colors, license plates, and even repeatedly asked people what shampoo people use.
In school, he’s prone to huge meltdowns and tantrums. Self-stimulation; when Jack ‘stims’ he looks as though he’s possessed, as if someone else has control of his body. Common self-stimulation practices include things like hand-flapping and humming. Jack tends to gallop across the room with his fingers in his mouth, grunting or loudly clearing his throat. We call it his “zoomies.”
Over the course of seven years, Jack had changed so much from that initial list of autism symptoms; he is a different boy entirely. He is extremely affectionate and loving; for example, he can finish my sentences and read nonverbal cues (such as a warning look from me) from across the room.
< My Thoughts > “…He is extremely affectionate and loving…”
One of the main reasons an older student I knew had been ‘disqualified’ for services was because sometimes he seemed ‘friendly’, and ‘affectionate’. He also had more typical language and conversation than many on the spectrum. By the time they become adolescents, children on the milder side of the spectrum see being friendly as a way to ‘manipulate’ their surroundings. No one has ever said that a child with autism couldn’t be manipulative and crafty! Besides their surprising language and lengthy conversations, are always about his/her interests, like the computer games they play. Typically, they are ‘perseverating’ about their favorite things and special interests!
Engel, R. (2019) thinks back saying – We knew things were wrong with Henry at the very beginning. We didn’t know what was wrong for a long time. We didn’t find out the degree to which our son had a problem until his diagnosis later on. But we knew from the beginning things weren’t exactly right.
He says that it can feel very lonely when you go down the street and you see other children behaving normally. We were hoping Henry would grow out of it.
Then when diagnosed with Rett Syndrome, a genetic condition, we realized he’s not going to get over it. Henry’s life and our lives are never going to be like that; ‘normal’.
Now holding our newborn Theo, it’s such a difference; it’s like we have never done this before. Such a difficult realization knowing that our new son will soon surpass his big brother.
We are bracing ourselves for the day when our 1-month-old baby Theo is going to do more than our 4-year-old Henry.
< My Thoughts > “…he’s not going to get over it.
Children with Rett Syndrome may seem fine as newborns, then in the early stages of infancy, they begin to exhibit autistic-like behaviors. Symptoms may include walking on their toes, a wide-based gait, constant sleeping and breathing problems; consistent teeth grinding, but difficulty chewing, slowed growth, seizures, and/or cognitive disabilities.
Note: Sadly, Richard Engel, chief foreign correspondent for NBC News, announced on Thursday that his 6-year-old son Henry, diagnosed with Rett syndrome as an infant, has died. In a tweet posted on Aug. 18, 2022, Engel wrote: "Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle.”
Deweerdt, S. (2019) details Rett Syndrome as a ‘progressive disorder of autism’. That it is usually caused from gene mutation on the ‘X’ chromosome, and usually found in girls. A syndrome, much like autism, it is not always noticeable at birth. But unlike children with autism, they have autonomic nervous system problems which may lead to fatal breathing abnormalities.
Davide-Rivera, J. (2013) exclaims that as a child – When they noticed me walking on tip-toes, they made me a ballerina. When I twirled round and round, I was only dancing.
Edelson, S., Ph.D. (2016) reports – Toe-walking is quite common in young children 3 years and younger. However, when children 5 years and older are still walking on their toes this is often associated with neurological immaturity.
A dysfunctional vestibular system, is a common problem in autism. The vestibular system prepares the brain with feedback between the brain and the body’s motion and position. Therapeutic interventions such as therapeutic swings, and prism glasses are available to help this problem; as are exercises and/or surgery for the Achilles tendon. Edelson cautions that the parents should consider whether or not the toe-walking is a safety issue when determining the cost, severity or effectiveness of treatment.
Bright Tots Editor (2019) believes that being ‘always on the move, frequently twirling, spinning, running round & round’ can be ‘stereotyped’ behavior. When one spins, twirls, and/or runs around, these may be sensory stimulating sensations needed to establish the rhythmical motions which help to impose order and control on one’s self and the environment. Seemingly bizarre to those around them, this activity can occur when one is either agitated, aroused, happy, and/or excited.
Davide-Rivera, J. continues that – Everything was my fault! No one recognized my autism; no one saw that I had Asperger’s syndrome. How could they? “Aspies” did not exist; not yet.
< My Thoughts > “…Aspies did not exist; not yet.”
The term ‘Aspie’ is said to have first been used by Liane Holliday Willey in her book Pretending to be Normal (1999). Wendy Larson also used the term in her book titled, Friendship: The Aspie Way (2006). Some with Asperger’s syndrome see it as an affectionate term; while others may have decided that it is a derogatory term.
Mandy, W. (2013) goes on to imply that it seems autism manifests more subtly in females and therefore, is often misdiagnosed. For example, as an anxiety or personality disorder. Repetitive behaviors in females with autism present in more socially normative ways, and females with the disorder could have a greater capacity to compensate for their difficulties than males. Added to that, the previous diagnostic tool, the DSM-4 (1994) said almost nothing about the female autism phenotype.
Reflecting this, Mandy, W. includes a brief DSM-5 (2013) subsection on ‘Gender-related diagnostic issues’ that says: In clinical samples of females with autism, they tend to be more likely to show an accompanying intellectual disability. This suggests that girls without accompanying intellectual disability or language delays. But these may go unrecognized, perhaps because of the more subtle manifestation of social and communication difficulties.
Web M.D. (2018) reveals that today, Asperger’s Syndrome (AS) is technically no longer a diagnosis on its own. Now, in the DSM-5 (2013), AS is part of the broader category of ‘autism spectrum disorder’ (ASD). AS is now considered to be what doctors call ‘high-functioning’ autism, meaning that the symptoms are less severe.
< My Thoughts > “…symptoms are less severe.”
Symptoms are less severe; therefore, parents, clinicians, and educators don’t seem to notice the kaleidoscope of worrisome conditions bothering those children. Also, they may require less support to function in ‘everyday’ home, school, and community settings. My thought is that, in those cases, denial and misdiagnosis are quite understandable, but of course, NOT acceptable.
DENIAL
Stagliano, K. & McCarthy, J. (2010) – One summer, my sister Michele was visiting from Texas. Her son Colin was four years old. We only saw each other once or twice a year, so this was her first opportunity to spend time with my girls since the previous summer.
“Mia has autism,” my sister said hysterically. “How could you not know?” “How dare she say that!” I was immediately angry. She was shattering my carefully built wall of denial. Now, I realize it took a great deal of love and courage for her to drop that on me.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), an ‘Intellectual Disability’ (ID) is a chronic condition involving impairments in intellectual functioning, and deficits in adaptive functioning, present during developmental periods. Stating that Autism Spectrum Disorder (ASD) is a pervasive developmental disability defined as persistent deficits in social communication; plus, exhibiting a pattern of restricted or repetitive behavior, interests, or activities.
When it is not obvious to the practitioners whether ID or ASD is prevalent, the DSM-5 is said to help identify if the diagnosis should be ID with ASD symptoms. Or, ASD as comorbid, or with, or having features of ID. They also conclude that being bi-lingual and/or of female gender may be influence misclassification of symptoms.
< My Thoughts > “…female gender may be influence misclassification…”
Often, girls seem to wait and watch. Appearing to be natural communicators, socializers, and imitators which may somehow ‘temper’ their more subtle autism symptoms. The literature shows that girls are better at camouflaging their behavior, which helps them fit in.
Perhaps society is more accepting of their ‘diva’ performances because while inappropriate and irritating, they are somewhat entertaining. But, as girls become older, those with milder indications, higher intellect, or higher on the spectrum, such as ‘Asperger’s’, may be found to have passive-aggressive behavior tendencies, eating disorders, depression, or other disorders.
Mandy, W. (2013) explains that the current diagnostic criteria and diagnostic tests miss girls, because those criteria were mainly derived from studying the disorder in males. What’s more, the female autism phenotype may be especially difficult to detect in those with average and above average intelligence.
Wolff, J., Dimian, A., et al. (2019) say that atypical behavior responses to external stimuli are a common feature of ASD. Children with autism can have unusual interests in sensory aspects of the environment. For example, they say that a child may exhibit distress in a noisy classroom, but show no reaction to a loud vacuum. Another example would be a child insensitive to a wide range of visual and auditory stimuli, but showing a marked reaction to being lightly touched.
Kedar, I. (2012) – Imagine being stuck in an educational program, year after year, that is designed for preschooler who learns slowly.
You are lonely, though surrounded by people, and you know that this will be your entire life if you do not gain a means to communicate more than your basic needs. But no one is teaching you how.
You are bored, frustrated, angry, misunderstood and more than a little hopeless. You turn to repetitive behaviors, or ‘stims’ which create a sensory drug-like experience that takes you away from the pain but makes the situation so much worse by pulling you farther from reality.
< My Thoughts > “…’stims’…”
‘Stims’ are ‘stereotypic’ behaviors. ‘Stims’ is an abbreviation for ‘stimming’, also known as, ‘self-stimulatory’ behavior. This usually refers to hand-flapping, rocking, spinning, or other repetitious behaviors and/or sounds which help those with neurological disorders ‘cope’ with the stressors they are experiencing.
Cariello, C. (2015) can tell you that her son Jack has a tendency to do what’s called perseverating; he focuses repetitively on random subjects, sometimes for months – car colors, license plates, and even repeatedly asked people what shampoo people use.
In school, he’s prone to huge meltdowns and tantrums. Self-stimulation; when Jack ‘stims’ he looks as though he’s possessed, as if someone else has control of his body. Common self-stimulation practices include things like hand-flapping and humming. Jack tends to gallop across the room with his fingers in his mouth, grunting or loudly clearing his throat. We call it his “zoomies.”
Over the course of seven years, Jack had changed so much from that initial list of autism symptoms; he is a different boy entirely. He is extremely affectionate and loving; for example, he can finish my sentences and read nonverbal cues (such as a warning look from me) from across the room.
< My Thoughts > “…He is extremely affectionate and loving…”
One of the main reasons an older student I knew had been ‘disqualified’ for services was because sometimes he seemed ‘friendly’, and ‘affectionate’. He also had more typical language and conversation than many on the spectrum. By the time they become adolescents, children on the milder side of the spectrum see being friendly as a way to ‘manipulate’ their surroundings. No one has ever said that a child with autism couldn’t be manipulative and crafty! Besides their surprising language and lengthy conversations, are always about his/her interests, like the computer games they play. Typically, they are ‘perseverating’ about their favorite things and special interests!
Engel, R. (2019) thinks back saying – We knew things were wrong with Henry at the very beginning. We didn’t know what was wrong for a long time. We didn’t find out the degree to which our son had a problem until his diagnosis later on. But we knew from the beginning things weren’t exactly right.
He says that it can feel very lonely when you go down the street and you see other children behaving normally. We were hoping Henry would grow out of it.
Then when diagnosed with Rett Syndrome, a genetic condition, we realized he’s not going to get over it. Henry’s life and our lives are never going to be like that; ‘normal’.
Now holding our newborn Theo, it’s such a difference; it’s like we have never done this before. Such a difficult realization knowing that our new son will soon surpass his big brother.
We are bracing ourselves for the day when our 1-month-old baby Theo is going to do more than our 4-year-old Henry.
< My Thoughts > “…he’s not going to get over it.
Children with Rett Syndrome may seem fine as newborns, then in the early stages of infancy, they begin to exhibit autistic-like behaviors. Symptoms may include walking on their toes, a wide-based gait, constant sleeping and breathing problems; consistent teeth grinding, but difficulty chewing, slowed growth, seizures, and/or cognitive disabilities.
Note: Sadly, Richard Engel, chief foreign correspondent for NBC News, announced on Thursday that his 6-year-old son Henry, diagnosed with Rett syndrome as an infant, has died. In a tweet posted on Aug. 18, 2022, Engel wrote: "Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle.”
Deweerdt, S. (2019) details Rett Syndrome as a ‘progressive disorder of autism’. That it is usually caused from gene mutation on the ‘X’ chromosome, and usually found in girls. A syndrome, much like autism, it is not always noticeable at birth. But unlike children with autism, they have autonomic nervous system problems which may lead to fatal breathing abnormalities.
Davide-Rivera, J. (2013) exclaims that as a child – When they noticed me walking on tip-toes, they made me a ballerina. When I twirled round and round, I was only dancing.
Edelson, S., Ph.D. (2016) reports – Toe-walking is quite common in young children 3 years and younger. However, when children 5 years and older are still walking on their toes this is often associated with neurological immaturity.
A dysfunctional vestibular system, is a common problem in autism. The vestibular system prepares the brain with feedback between the brain and the body’s motion and position. Therapeutic interventions such as therapeutic swings, and prism glasses are available to help this problem; as are exercises and/or surgery for the Achilles tendon. Edelson cautions that the parents should consider whether or not the toe-walking is a safety issue when determining the cost, severity or effectiveness of treatment.
Bright Tots Editor (2019) believes that being ‘always on the move, frequently twirling, spinning, running round & round’ can be ‘stereotyped’ behavior. When one spins, twirls, and/or runs around, these may be sensory stimulating sensations needed to establish the rhythmical motions which help to impose order and control on one’s self and the environment. Seemingly bizarre to those around them, this activity can occur when one is either agitated, aroused, happy, and/or excited.
Davide-Rivera, J. continues that – Everything was my fault! No one recognized my autism; no one saw that I had Asperger’s syndrome. How could they? “Aspies” did not exist; not yet.
< My Thoughts > “…Aspies did not exist; not yet.”
The term ‘Aspie’ is said to have first been used by Liane Holliday Willey in her book Pretending to be Normal (1999). Wendy Larson also used the term in her book titled, Friendship: The Aspie Way (2006). Some with Asperger’s syndrome see it as an affectionate term; while others may have decided that it is a derogatory term.
Mandy, W. (2013) goes on to imply that it seems autism manifests more subtly in females and therefore, is often misdiagnosed. For example, as an anxiety or personality disorder. Repetitive behaviors in females with autism present in more socially normative ways, and females with the disorder could have a greater capacity to compensate for their difficulties than males. Added to that, the previous diagnostic tool, the DSM-4 (1994) said almost nothing about the female autism phenotype.
Reflecting this, Mandy, W. includes a brief DSM-5 (2013) subsection on ‘Gender-related diagnostic issues’ that says: In clinical samples of females with autism, they tend to be more likely to show an accompanying intellectual disability. This suggests that girls without accompanying intellectual disability or language delays. But these may go unrecognized, perhaps because of the more subtle manifestation of social and communication difficulties.
Web M.D. (2018) reveals that today, Asperger’s Syndrome (AS) is technically no longer a diagnosis on its own. Now, in the DSM-5 (2013), AS is part of the broader category of ‘autism spectrum disorder’ (ASD). AS is now considered to be what doctors call ‘high-functioning’ autism, meaning that the symptoms are less severe.
< My Thoughts > “…symptoms are less severe.”
Symptoms are less severe; therefore, parents, clinicians, and educators don’t seem to notice the kaleidoscope of worrisome conditions bothering those children. Also, they may require less support to function in ‘everyday’ home, school, and community settings. My thought is that, in those cases, denial and misdiagnosis are quite understandable, but of course, NOT acceptable.
MISDIAGNOSIS
Ventola, P., Kleinman, J., et al. (2006) claim a study of children who have failed to be diagnosed with ‘autism’, may have ‘something else’. Something that is consistent with impairments in socialization skills, joint attention skills and some aspects of communication, play, and sensory processing. Going on to say that these children have developmental delays, but are ‘less’ impaired than those who met the criteria for Autism Spectrum Disorder (ASD). They conclude that these children seem more adaptable than the ASD children, although they share the same behavioral differences.
They say the fact that children and adults out there are sometimes misdiagnosed, over-diagnosed, or who have missed being diagnosed altogether is understandable. Autism follows many developmental trajectories from low to high functioning, as the term ‘spectrum’ indicates. With the new DSM-5 (2013), the shift is to ‘specificity’ within each subcategory.
In other words, the ‘autism spectrum’ now includes subcategories, which in turn have their own spectrums. These ‘subcategories’ can more readily lead to matching the most appropriate and most effective ‘treatment’ for that child’s specific diagnosis. Thus, allowing the family to more easily qualify for coverage by designated competent providers, and not the financially overwhelmed parent. But if the chosen ‘treatment’ is NOT an ‘accepted’ program, which meets the ‘gold standard’ matching the diagnosis, then neither state funded programs nor insurance will pay for it.
< My Thoughts > “…subcategories…their own spectrums…”
Subcategories with their own spectrums, added to the DSM core autism categories, gives one a clearer glimpse of the complexity involved when identifying a child’s Autism Spectrum Disorder symptoms and current trajectory.
Johnson, I. (2014) shares that hopefully, through my experiences I can show you that it is okay to have some doubts about whether or not your child needs assistance.
Kedar, I. (2012) believes that all parents of autistic children hope that inside, behind all the impossible behaviors, exists a normal child struggling to get out. I remember being saddened to read from more than one well-respected source, that this hope was foolhardy. That to believe this might be so, was to be in denial. That parents needed to accept that behind their child’s autistic behaviors lay an autistic soul.
Apparently, it is okay to drill normalcy into someone, but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body. These theories cost us dearly.
Cohen (2011) recalls beginning to see the danger that comes with trying to “remove” his autism. What will he believe about himself as a human being, as a person with worth in the world? I also think of my own needs in all of this, because I should.
It’s our society that pronounces Ezra disordered, a system of mental health that determines a clear line between people’s neurology and defines whether a person is right or wrong. He has to fit this mold to be considered worthwhile, something I’m quite sure he’ll never do.
< My Thoughts > “…I also think of my own needs…”
Know autism, know your child, and know yourself.
Pedersen A., Pettygrove, S., et al. ((2017) tell us that often times Intellectual Disability (ID) and Autism Spectrum Disorder (ASD) seem to overlap, causing potential diagnostic confusion.
Cademy, L. (2013) confides – I am a parent and I have Asperger’s. I have a child with Pervasive Developmental Disorder-Not-Otherwise Specified (PDD-NOS) and I have stories to tell.
Some schools have wonderful programs for children on the Autism Spectrum, but your child will only receive services if labeled as having a condition listed in the current DSM.
“I am not a fan of labels, especially because ‘NLD’ is not listed in the book. So, in this case, a precise label is worse than useless.” Some people think that the DSM-5 committee could do a better job of separating autism spectrum disorders from non-spectrum disorders, which they now list as “language disorders, intellectual disabilities, attention deficit hyperactivity disorders, and anxiety disorders.”
< My Thoughts > “…‘NLD’ is not listed in the book.”
When Liz mentions ‘not listed in the book’ she is probably referring to the American Psychiatric Association; Diagnostic & Statistical Manual of Mental Disorders (4th Edition). The DSM-5 (2013) was published the same year as her book, so if the latest revision (DSM-5) had been used, it may have helped her child receive an earlier NLD diagnosis. But, may still be left to clinical interpretation.
Coplan, J. (2010) calls children who are atypical, but not really autistic, ‘NLD’; Non-verbal Learning Disability. Continuing, Coplan, J. says NLDs may also have poor fine motor right/left coordination, and trouble with understanding ‘personal space’.
< My Thoughts > “…‘NLD’…”
This doesn’t mean they are non-verbal, as our Sonny is, because he’s unable to verbalize language, but he can vocalize and make sounds. NLDs have difficulty with conversational language, and have their own separate diagnostic symptoms.
Staff Writers (2022) say that a child with Autism, depending on the DSM-5 Level of Severity, usually has difficulty with age-appropriate spoken language. While the child with NVLD, has a strong range of developmentally-appropriate vocabulary & language skills.
But, poor spatial skills, paired with good language skills, are the essential features required in the diagnosis of Non-Verbal Learning Disability (NVLD). for this reason, it is often undiagnosed or misdiagnosed until noticed by teachers when the student is having difficulty with grade-level school performance. At that time, students may then be referred to additional professionals for observation & testing.
Cademy, L. (2013) cautions that if you know your child with ‘mild’ symptoms will need school learning accommodations, have a ‘professional’ write a diagnosis of Asperger’s or High Functioning Autism (HFA).
School records are destroyed upon graduation and are not released outside the school, so the misdiagnosis won’t haunt your child later in life.
< My Thoughts > “…misdiagnosis won’t haunt your child…”
Remember, your child’s labels, such as – HFA is a term for High Functioning Autism, and NLD for Non-verbal Learning Disorder, can be removed from records when they reach a certain age. Check with your state for their statutes.
Note: More about (IEP) Individualized Education Program Accommodations in UNIT 6 Chapter 3.
Ha, V., Whittaker, A., et al.(2012) remind us that ‘misdiagnosis’ was prevalent in the late 1900’s and early 2000’s. Now, in addition, ‘over-diagnosis’ is the ‘great concern’ of parents and some professionals. But, lack of ‘early identification’ does not serve us well either.
They say that in their country, Vietnam, health service providers are forced to adopt a realistic response in order to meet the needs of the children and parents seeking assessment and diagnosis.
Yes, Ha, V. and associates say that autism is ‘global’. But there are only a few private autism intervention centers in Hanoi, and these are just available to a minority of wealthier families. Added to that, they caution us ~ a rushed diagnosis, with assessment tools used from Western countries, sometimes results in an inaccurate diagnostic label.
Nevertheless, services were not available without autism identification and due to marginalized services, the ‘count’ may be low. They believe that a more accurate count is necessary for the country to provide necessary assessments, diagnostic, and therapeutic services to all those in need.
Moore, C. (2008) asks – How much difference does a ‘label’ make? Some parents don’t want their child considered ‘handicapped.’ I think autism is exactly that, a ‘handicap’. A difference that disadvantages you when playing the ‘game of life’. I don’t like the ‘disabled’ label because that suggests you were once ‘abled’, but now you are not. I don’t like autism referred to as a ‘disease’ either, because it’s not catching.
Hinds, M. (2014) says – We openly use the word ‘autistic’ at home. I have never hidden it from them, nor have their teachers. Having my boys ‘labeled’ has many practical advantages. None of the sources of help would have been available to me if the boys had not been formally diagnosed. And, it helps me explain why 4-year-old Sam is still in nappies. Or, why big brother George sometimes twiddles his fingers in front of his eyes.
< My Thoughts > “…it helps me explain…”
Misdiagnosis can result in your child receiving unnecessary or inappropriate services. Over-diagnosis can also have negative consequences. Some tests provide overlapping information and that’s okay when clinicians will know how to sort everything out. And, when trying to get to know the child behind the autism, or prioritizing interventions, it helps to understand that s/he may be showing symptoms of more than one problem, challenge, or disorder.
Sonny’s mental age is 2-3 years old; he is non-verbal and has profound autism. He has a sweet personality and tries very hard to learn new skills. Like a ‘non-extinguishing trick firecracker, his brain is continually firing off seizures. Tragically, when he has undergone severe seizure activity, he may lose well established skills, thus losing some of his independence.
His seizure activity has led to ‘misdiagnosis’ over the years. Typically, he can be right in the middle of something he has done many times and suddenly he looks at you as if he doesn’t know what he’s doing. He doesn’t know who you are, or where he is. Sometimes he knows a seizure is coming and he’ll lead us to his suppository medication. Afterwards, we tell him, “Hey, that was a just a seizure, you’re okay now.” That seems to satisfy him and we guide him back to his activity, unless he wants to go to bed to recover.
According to Crumrine, P. (2001), ‘Atypical absence seizures’ look as if the person has just ‘checked-out’ for a second or two. During which, they will not respond to environmental stimuli. An ‘atonic seizure’ is a brief loss of posture. It looks like a head nod or a more observable fall to the ground, stumbling as knees give out. She also describes this Lennox-Gastaut Syndrome (LGS) as having at least two seizure types, including ‘tonic’, ‘atonic’, and/or ‘atypical absence seizures’; along with ‘cognitive impairment’ and often times, lack of the ability to learn language, or to become verbal.
< My Thoughts > “…along with…”
For Sonny, having autism and LGS is like being stuck in the ‘terrible twos’. He laughs, makes noises, sounds and grunts. But can never utter words. We were told that the frontal lobe of his brain had never formed completely. Toilet training wasn’t successful until age 13 years, due to gross and fine motor skill deficits.
Acting one way one minute and another way the next, his behavior is confusing. At times his seizures may look as if he is frozen in time, staring, suddenly jolting, stumbling or changing his gait, and/or tantrumming and running in every direction, at once trying to escape what he is experiencing.
You can understand why Sonny was originally misdiagnosed with ADHD, OCD, SIBs, behavior disorder, panic disorder, elopement disorder, cognitive disorder, speech disorder, eating disorder, and so on. Everything it turns out, but ‘epilepsy’, and autism.
Ali, D. (2015) adds – Make certain that it’s the ‘right’ diagnosis. There's no ‘slam dunk’ to diagnosis. Some kids are identified through the school system and not through a clinician. But your child should always get a diagnosis from a developmental pediatrician or a neurologist with a specialty in autism.
REFERENCES: UNIT 2 – Why Is It Autism? –
CHAPTER 2 – DENIAL & MISDIAGNOSIS
Ali, D. (2015). How to Handle Your Child’s Autism Diagnosis; Retrieved online from –http://www.parents.com/health/autism/symptoms/handling-your-childs-autism-diagnosis/
Bright Tots Editor (2019). Stereotype Behavior; Retrieved online from – http://brighttots.com/Autistic_behaviors.html/
Cademy, L. (2013). The Aspie Parent: the First Two Years, A Collection of Posts from the Aspie Parent Blog; eBook Edition.
Cariello, C. (2015). What Color is Monday? How Autism Changed One Family for the Better; eBook Edition.
Crumrine, P. (2001). Lennox-Gaustaut Syndrome; Journal of Child Neurology; V17:1.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal; eBook Edition.
Coplan, J. (2010). Not Quite Autism: At the Borderland of ASD; Retrieved online from – https://www.psychologytoday.com/
Davide-Rivera, J. (2013). Twirling Naked in the Streets & No One Noticed: Growing Up with Autism; eBook Edition.
Deweerdt, S. (2019). Rett Syndrome’s Link to Autism; Retrieved online from – https://www.spectrumnews.org/news/rett-syndromes-link-to-autism-explained
DSM-4 (1994). Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition; Publishers, The American Psychiatric Association (APA), Washington, DC.
DSM-5 (2013). Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition; Publishers, The American Psychiatric Association (APA), Washington, DC.
Edelson, S., Ph.D. (2016). Toe-walking; Retrieved online from – https://www.autism.coqm/symptoms_toe_walking/
Engel, R. (2019). On Assignment with Richard Engel on MSNBC. Retrieved online from – https://people.com/parents/richard-engel-new-baby-son-rett-syndrome-differences-exclusive.
Ha, V., Whittaker, A., et al.(2012). Assessment & Diagnosis of Autism Spectrum Disorder in Hanoi, Vietnam; Journal of Child & Family Studies; V26, p1334-1344.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Johnson, I. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism; eBook Edition.
Mandy, W. (2013). DSM-5 May Better Serve Girls with Autism; Senior Lecturer in clinical psychology, University College London. Retrieved online from –
https://www.spectrumnews.org/opinion/dsm-5-may-better-serve-girls-with-autism/.
Moore, C. (2008). Thoughts About the Autism Label: A Parental View; Journal of Philosophy of Education; V42:3-4.
Pedersen A., Pettygrove, S., et al. (2017). DSM Criteria that Best Differentiate Intellectual Disability from Autism Spectrum Disorder; Journal of Child Psychiatry Human Development; V48: 537-545.
Staff Writers (2022). What Are the Three Levels of Autism; Retrieved online from – https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233
Stagliano, K., & McCarthy, J. (2010). All I Can Handle, and I Am No Mother Teresa: A Life Raising Three Daughters with Autism; eBook Edition.
Ventola, P., Kleinman, J., et al. (2006). Differentiating Between Autism Spectrum Disorders and Other Developmental Disabilities in Children Who Failed a Screening Instrument for ASD; Journal of Developmental Disorders: V37:425-436.
Web M.D. Staff Writer (2018). Asperger’s Syndrome: Symptoms, Tests, Diagnosis; Retrieved online from – https://www.webmd.com/brain/autism/mental-health-aspergers-syndrome
Wolff, J., Dimian, A., et al. (2019). A longitudinal study of parent-reported sensory responsiveness in toddlers at-risk for autism; Journal of Child Psychology & Psychiatry; V60:3, p314-324.
APPENDIX B – LATEST ASD FINDINGS
Latest ASD Findings, with < My Thoughts > by Sara Luker
World Health Organization (WHO) Staff Writers (2022) emphasize that the health-care needs of people with autism are complex and require a range of integrated services, that include health promotion, care and rehabilitation. Collaboration between the health sector and other sectors, particularly education, employment and social care, is important.
As you may already understand, Autism Spectrum Disorder (ASD) is a developmental neurological disorder which according to Researchers at Kobe University (2022), “remains largely unexplained, despite the rapidly increasing number of patients” diagnosed with autism.
Kobe University Researchers (2022) report a recent study, which revealed abnormalities in ‘blood cells’ during fetal development, may result in ‘immune’ abnormalities in the brain and gut. But they say that “the essential mechanisms behind these immune abnormalities have yet to be determined.”
Drake, K. (2021) believes in the speculation of some scientists that ‘gene variants’ are linked to autism. Although each autism case is unique, they also share common characteristics.
Buxbaum, J. (2014) claims that “genetic variation likely accounts for roughly 60 percent of the liability for autism, with common variants comprising the bulk of its genetic architecture.” Buxbaum also comments that “within a given family, the mutations could be a critical determinant that leads to the manifestation of Autism Spectrum Disorder (ASD) in a particular family member.”
< My Thoughts > “…within a given family…”
When trying to fathom how one’s child within a given family can be discovered to have autism, many reasons must be examined. Contained in this writing, I have attempted to gather what I consider to be ‘hopeful’ views and reasons of others who have gone before us.
Wigler, M. (2022) claims that there is more than a ‘random’ chance that a family with an autistic child will also have siblings with autism. But that in large families, only ‘one’ child may show signs of autism. This could possibly be due to the combination of both the child’s ‘inherited genes, and ‘sporadic gene combinations.’ In his ‘unified theory of autism’, the complex developmental neurological disorder of autism is made possible through both these ‘inherited genes, and ‘sporadic gene combinations’ and/or the destruction or damaging of genes through ‘environmental insults’ or ‘spontaneous mutations’. He also wants us to know that while girls may not show symptoms, they can still be carriers of autism. Thus, putting their future children at-risk and making it seem that autism appears more often in boys.
Chaste, P. & Leboyer, M. (2012) say that research shows autism is a complex disorder resulting from the combination of genetic and environmental factors.” That “siblings showing impairment within families is best explained by shared genes, as opposed to a shared environment.” One study estimates the heritability of autism to be 55%. And, there has been a huge effort in research to try to unravel the underlying genetic factors, within families.
Karmiloff-Smith, A. (2010) has been quoted, over time, as believing that “too much brain growth, followed by too much synaptic pruning” leads to the pattern which appears in the autistic brain, and that this ‘over-pruning’ can cause ‘autism traits’ to appear when the child reaches 18 months of age.
< My Thoughts > “…‘autism traits’ to appear…”
While some say that ‘autism traits’ appear when the child reaches 18 months of age, more recent findings consider the appearance age to be closer to 36 months. Or, show when a child is presented with certain behavioral demands in environmental, social, and/or preschool settings. Often, when a child cannot meet these demands, s/he retreats, withdraws, or ‘acts out’. But chances are that they do not want to ‘give you a bad time’; they are ‘having a bad time!’
Other studies report strong evidence of exposure to toxins. Including ‘environmental insults’, during the unfolding of the ‘neurodevelopmental processes’. There have been higher concentrations of heavy metals found in the blood, urine, hair, brain, or teeth of children with autism; as compared with controls. Cited toxins were solvents, toxic waste sites, air pollutants, pesticides, and heavy metals.
< My Thoughts > “…exposure to toxins.”
This doesn’t explain the higher risk for autism in boys, than in girls. Nor, does it define whether these exposures, if detrimental, are experienced by the mother during the gestational period; or by the child during the developmental period. So many questions remain unanswered.
Gilberg, M. (2020) gives us an idea of what his world is like. “I felt I was trapped between two worlds. I could only describe it as having a brain that was half autistic and half neurotypical. I believe from my own life experience that you can actually have a brain that is both.”
He continues, “I felt too ‘normal’ in much autistic company and too ‘autistic’ in neurotypical company. When I have taken Autism inventories or rating scales I routinely score just over the ‘autistic’ line.”
< My Thoughts > “…‘autistic’ line.”
This brings to mind ‘the line in the sand’ analogy made by Yale Child Study Center researcher, K. Chawarska. She claims that when discerning autism from an innate developmental problem or a problem of regression, it is like trying to ‘draw a line’ in shifting sand. For instance, before losing a skill can be considered to be ‘regression’, some believe that a child must be proficient in that skill for at least 3 months, prior to losing it.
Yet another analogy that autism signs (lines) are illusive may be when symptoms are compared to spotting something under the lamppost. It is said that we usually clearly see only that which is illuminated in a bright pool of the streetlight. We rarely see the subtle things which lurk in the dark shadows. As subtle as not sharing or returning a smile.
Others consider in the early descriptions of autism as a ‘great divide’ between those with autism symptoms, and those without. Sometimes however subtly, a child's behavior provides ‘faint’ clues to social ineptness, or developmental delays, it remains there. But, the tendency of teachers and/or parents is to forget, or explain away a missing behavior.
Svoboda, E. (2020) explains that at a year old patient, Ethan Loyola, during this early developmental period, had been given several courses of antibiotics to treat an ear infection. He was left with painful diarrhea. Soon after that, he was diagnosed with Autism.
While not clear evidence of linking 'gut' problems with autism, Ethan's digestive issues continued as he grew older. His father finally took him to Arizona State University, near his home, where Ethan was enrolled in a micro biotic transfer therapy used to successfully recolonize his gut. Studies show that children with autism have a mix of gut microbes which are distinct from those of children without autism.
Scientists say that targeting gut microbes are thought to disrupt neurodevelopment, thus effecting behavior, in children with Autism. But they conclude, “…we need more evidence, overall.”
REFERENCES: APPENDIX B – LATEST FINDINGS
Advocates of Autistic Self-Advocacy Network (ASAN) (2022). May Update; Retrieved online from –https://autisticadvocacy.org
Buxbaum, J. (2014). Most Genetic Risk for Autism resides with a Common Variation; Retrieved online from – https://www.nature.com/articles/ng.3039
Chaste, P. & Leboyer, M. (2012). Autism Risk Factors; Dialogues Clinical Neuroscience; Sept. V14(3), P281-292.
Drake, K. (2021). Autism Research: Recent Findings; Retrieved online from – www.medicalnewstoday.com/
Gilberg, M. (2020). Stuck Between Two Worlds: Having a Brain that is Half Autistic & Half Neurotypical; Retrieved online from – https://www.drakeinstitute.com/
Karmiloff-Smith, A. (2010). Neuroimaging of the developing brain; taking developing seriously. Retrieved online from – https://pubmed.ncbi.nlm.nih.gov/20496384/
Kobe University Researchers (2022). Does Autism Begin in the Womb? Retrieved online from –
https://www.kobe-u.ac.jp/research_at_kobe_en/NEWS/
Svoboda, E. (2020). Autism & the Gut; Retrieved online from – www.nature.com/articles/d41586-020-00198-y
Takumi, Toru (2022). Does Autism Begin in the Womb? Research Breakthrough May Lead to New Treatment Strategies; Retrieved online from – https://scitechdaily.com/does-autism-begin-in-the-womb-research-breakthrough-may-lead-to-new-treatment-strategies/
WHO Staff Writers (2022). World Health Organization Comprehensive mental health action plan 2013–2030; Retrieved online from – https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Wigler, M. (2022). A Unified Theory of Autism – Big Think; Retrieved online from – https://bigthink.com/videos/a-unified-theory-of-autism
CHAPTER 3 – DOCTORS & DIRECTION
Ventola, P., Kleinman, J., et al. (2006) claim a study of children who have failed to be diagnosed with ‘autism’, may have ‘something else’. Something that is consistent with impairments in socialization skills, joint attention skills and some aspects of communication, play, and sensory processing. Going on to say that these children have developmental delays, but are ‘less’ impaired than those who met the criteria for Autism Spectrum Disorder (ASD). They conclude that these children seem more adaptable than the ASD children, although they share the same behavioral differences.
They say the fact that children and adults out there are sometimes misdiagnosed, over-diagnosed, or who have missed being diagnosed altogether is understandable. Autism follows many developmental trajectories from low to high functioning, as the term ‘spectrum’ indicates. With the new DSM-5 (2013), the shift is to ‘specificity’ within each subcategory.
In other words, the ‘autism spectrum’ now includes subcategories, which in turn have their own spectrums. These ‘subcategories’ can more readily lead to matching the most appropriate and most effective ‘treatment’ for that child’s specific diagnosis. Thus, allowing the family to more easily qualify for coverage by designated competent providers, and not the financially overwhelmed parent. But if the chosen ‘treatment’ is NOT an ‘accepted’ program, which meets the ‘gold standard’ matching the diagnosis, then neither state funded programs nor insurance will pay for it.
< My Thoughts > “…subcategories…their own spectrums…”
Subcategories with their own spectrums, added to the DSM core autism categories, gives one a clearer glimpse of the complexity involved when identifying a child’s Autism Spectrum Disorder symptoms and current trajectory.
Johnson, I. (2014) shares that hopefully, through my experiences I can show you that it is okay to have some doubts about whether or not your child needs assistance.
Kedar, I. (2012) believes that all parents of autistic children hope that inside, behind all the impossible behaviors, exists a normal child struggling to get out. I remember being saddened to read from more than one well-respected source, that this hope was foolhardy. That to believe this might be so, was to be in denial. That parents needed to accept that behind their child’s autistic behaviors lay an autistic soul.
Apparently, it is okay to drill normalcy into someone, but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body. These theories cost us dearly.
Cohen (2011) recalls beginning to see the danger that comes with trying to “remove” his autism. What will he believe about himself as a human being, as a person with worth in the world? I also think of my own needs in all of this, because I should.
It’s our society that pronounces Ezra disordered, a system of mental health that determines a clear line between people’s neurology and defines whether a person is right or wrong. He has to fit this mold to be considered worthwhile, something I’m quite sure he’ll never do.
< My Thoughts > “…I also think of my own needs…”
Know autism, know your child, and know yourself.
Pedersen A., Pettygrove, S., et al. ((2017) tell us that often times Intellectual Disability (ID) and Autism Spectrum Disorder (ASD) seem to overlap, causing potential diagnostic confusion.
Cademy, L. (2013) confides – I am a parent and I have Asperger’s. I have a child with Pervasive Developmental Disorder-Not-Otherwise Specified (PDD-NOS) and I have stories to tell.
Some schools have wonderful programs for children on the Autism Spectrum, but your child will only receive services if labeled as having a condition listed in the current DSM.
“I am not a fan of labels, especially because ‘NLD’ is not listed in the book. So, in this case, a precise label is worse than useless.” Some people think that the DSM-5 committee could do a better job of separating autism spectrum disorders from non-spectrum disorders, which they now list as “language disorders, intellectual disabilities, attention deficit hyperactivity disorders, and anxiety disorders.”
< My Thoughts > “…‘NLD’ is not listed in the book.”
When Liz mentions ‘not listed in the book’ she is probably referring to the American Psychiatric Association; Diagnostic & Statistical Manual of Mental Disorders (4th Edition). The DSM-5 (2013) was published the same year as her book, so if the latest revision (DSM-5) had been used, it may have helped her child receive an earlier NLD diagnosis. But, may still be left to clinical interpretation.
Coplan, J. (2010) calls children who are atypical, but not really autistic, ‘NLD’; Non-verbal Learning Disability. Continuing, Coplan, J. says NLDs may also have poor fine motor right/left coordination, and trouble with understanding ‘personal space’.
< My Thoughts > “…‘NLD’…”
This doesn’t mean they are non-verbal, as our Sonny is, because he’s unable to verbalize language, but he can vocalize and make sounds. NLDs have difficulty with conversational language, and have their own separate diagnostic symptoms.
Staff Writers (2022) say that a child with Autism, depending on the DSM-5 Level of Severity, usually has difficulty with age-appropriate spoken language. While the child with NVLD, has a strong range of developmentally-appropriate vocabulary & language skills.
But, poor spatial skills, paired with good language skills, are the essential features required in the diagnosis of Non-Verbal Learning Disability (NVLD). for this reason, it is often undiagnosed or misdiagnosed until noticed by teachers when the student is having difficulty with grade-level school performance. At that time, students may then be referred to additional professionals for observation & testing.
Cademy, L. (2013) cautions that if you know your child with ‘mild’ symptoms will need school learning accommodations, have a ‘professional’ write a diagnosis of Asperger’s or High Functioning Autism (HFA).
School records are destroyed upon graduation and are not released outside the school, so the misdiagnosis won’t haunt your child later in life.
< My Thoughts > “…misdiagnosis won’t haunt your child…”
Remember, your child’s labels, such as – HFA is a term for High Functioning Autism, and NLD for Non-verbal Learning Disorder, can be removed from records when they reach a certain age. Check with your state for their statutes.
Note: More about (IEP) Individualized Education Program Accommodations in UNIT 6 Chapter 3.
Ha, V., Whittaker, A., et al.(2012) remind us that ‘misdiagnosis’ was prevalent in the late 1900’s and early 2000’s. Now, in addition, ‘over-diagnosis’ is the ‘great concern’ of parents and some professionals. But, lack of ‘early identification’ does not serve us well either.
They say that in their country, Vietnam, health service providers are forced to adopt a realistic response in order to meet the needs of the children and parents seeking assessment and diagnosis.
Yes, Ha, V. and associates say that autism is ‘global’. But there are only a few private autism intervention centers in Hanoi, and these are just available to a minority of wealthier families. Added to that, they caution us ~ a rushed diagnosis, with assessment tools used from Western countries, sometimes results in an inaccurate diagnostic label.
Nevertheless, services were not available without autism identification and due to marginalized services, the ‘count’ may be low. They believe that a more accurate count is necessary for the country to provide necessary assessments, diagnostic, and therapeutic services to all those in need.
Moore, C. (2008) asks – How much difference does a ‘label’ make? Some parents don’t want their child considered ‘handicapped.’ I think autism is exactly that, a ‘handicap’. A difference that disadvantages you when playing the ‘game of life’. I don’t like the ‘disabled’ label because that suggests you were once ‘abled’, but now you are not. I don’t like autism referred to as a ‘disease’ either, because it’s not catching.
Hinds, M. (2014) says – We openly use the word ‘autistic’ at home. I have never hidden it from them, nor have their teachers. Having my boys ‘labeled’ has many practical advantages. None of the sources of help would have been available to me if the boys had not been formally diagnosed. And, it helps me explain why 4-year-old Sam is still in nappies. Or, why big brother George sometimes twiddles his fingers in front of his eyes.
< My Thoughts > “…it helps me explain…”
Misdiagnosis can result in your child receiving unnecessary or inappropriate services. Over-diagnosis can also have negative consequences. Some tests provide overlapping information and that’s okay when clinicians will know how to sort everything out. And, when trying to get to know the child behind the autism, or prioritizing interventions, it helps to understand that s/he may be showing symptoms of more than one problem, challenge, or disorder.
Sonny’s mental age is 2-3 years old; he is non-verbal and has profound autism. He has a sweet personality and tries very hard to learn new skills. Like a ‘non-extinguishing trick firecracker, his brain is continually firing off seizures. Tragically, when he has undergone severe seizure activity, he may lose well established skills, thus losing some of his independence.
His seizure activity has led to ‘misdiagnosis’ over the years. Typically, he can be right in the middle of something he has done many times and suddenly he looks at you as if he doesn’t know what he’s doing. He doesn’t know who you are, or where he is. Sometimes he knows a seizure is coming and he’ll lead us to his suppository medication. Afterwards, we tell him, “Hey, that was a just a seizure, you’re okay now.” That seems to satisfy him and we guide him back to his activity, unless he wants to go to bed to recover.
According to Crumrine, P. (2001), ‘Atypical absence seizures’ look as if the person has just ‘checked-out’ for a second or two. During which, they will not respond to environmental stimuli. An ‘atonic seizure’ is a brief loss of posture. It looks like a head nod or a more observable fall to the ground, stumbling as knees give out. She also describes this Lennox-Gastaut Syndrome (LGS) as having at least two seizure types, including ‘tonic’, ‘atonic’, and/or ‘atypical absence seizures’; along with ‘cognitive impairment’ and often times, lack of the ability to learn language, or to become verbal.
< My Thoughts > “…along with…”
For Sonny, having autism and LGS is like being stuck in the ‘terrible twos’. He laughs, makes noises, sounds and grunts. But can never utter words. We were told that the frontal lobe of his brain had never formed completely. Toilet training wasn’t successful until age 13 years, due to gross and fine motor skill deficits.
Acting one way one minute and another way the next, his behavior is confusing. At times his seizures may look as if he is frozen in time, staring, suddenly jolting, stumbling or changing his gait, and/or tantrumming and running in every direction, at once trying to escape what he is experiencing.
You can understand why Sonny was originally misdiagnosed with ADHD, OCD, SIBs, behavior disorder, panic disorder, elopement disorder, cognitive disorder, speech disorder, eating disorder, and so on. Everything it turns out, but ‘epilepsy’, and autism.
Ali, D. (2015) adds – Make certain that it’s the ‘right’ diagnosis. There's no ‘slam dunk’ to diagnosis. Some kids are identified through the school system and not through a clinician. But your child should always get a diagnosis from a developmental pediatrician or a neurologist with a specialty in autism.
REFERENCES: UNIT 2 – Why Is It Autism? –
CHAPTER 2 – DENIAL & MISDIAGNOSIS
Ali, D. (2015). How to Handle Your Child’s Autism Diagnosis; Retrieved online from –http://www.parents.com/health/autism/symptoms/handling-your-childs-autism-diagnosis/
Bright Tots Editor (2019). Stereotype Behavior; Retrieved online from – http://brighttots.com/Autistic_behaviors.html/
Cademy, L. (2013). The Aspie Parent: the First Two Years, A Collection of Posts from the Aspie Parent Blog; eBook Edition.
Cariello, C. (2015). What Color is Monday? How Autism Changed One Family for the Better; eBook Edition.
Crumrine, P. (2001). Lennox-Gaustaut Syndrome; Journal of Child Neurology; V17:1.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal; eBook Edition.
Coplan, J. (2010). Not Quite Autism: At the Borderland of ASD; Retrieved online from – https://www.psychologytoday.com/
Davide-Rivera, J. (2013). Twirling Naked in the Streets & No One Noticed: Growing Up with Autism; eBook Edition.
Deweerdt, S. (2019). Rett Syndrome’s Link to Autism; Retrieved online from – https://www.spectrumnews.org/news/rett-syndromes-link-to-autism-explained
DSM-4 (1994). Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition; Publishers, The American Psychiatric Association (APA), Washington, DC.
DSM-5 (2013). Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition; Publishers, The American Psychiatric Association (APA), Washington, DC.
Edelson, S., Ph.D. (2016). Toe-walking; Retrieved online from – https://www.autism.coqm/symptoms_toe_walking/
Engel, R. (2019). On Assignment with Richard Engel on MSNBC. Retrieved online from – https://people.com/parents/richard-engel-new-baby-son-rett-syndrome-differences-exclusive.
Ha, V., Whittaker, A., et al.(2012). Assessment & Diagnosis of Autism Spectrum Disorder in Hanoi, Vietnam; Journal of Child & Family Studies; V26, p1334-1344.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Johnson, I. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism; eBook Edition.
Mandy, W. (2013). DSM-5 May Better Serve Girls with Autism; Senior Lecturer in clinical psychology, University College London. Retrieved online from –
https://www.spectrumnews.org/opinion/dsm-5-may-better-serve-girls-with-autism/.
Moore, C. (2008). Thoughts About the Autism Label: A Parental View; Journal of Philosophy of Education; V42:3-4.
Pedersen A., Pettygrove, S., et al. (2017). DSM Criteria that Best Differentiate Intellectual Disability from Autism Spectrum Disorder; Journal of Child Psychiatry Human Development; V48: 537-545.
Staff Writers (2022). What Are the Three Levels of Autism; Retrieved online from – https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233
Stagliano, K., & McCarthy, J. (2010). All I Can Handle, and I Am No Mother Teresa: A Life Raising Three Daughters with Autism; eBook Edition.
Ventola, P., Kleinman, J., et al. (2006). Differentiating Between Autism Spectrum Disorders and Other Developmental Disabilities in Children Who Failed a Screening Instrument for ASD; Journal of Developmental Disorders: V37:425-436.
Web M.D. Staff Writer (2018). Asperger’s Syndrome: Symptoms, Tests, Diagnosis; Retrieved online from – https://www.webmd.com/brain/autism/mental-health-aspergers-syndrome
Wolff, J., Dimian, A., et al. (2019). A longitudinal study of parent-reported sensory responsiveness in toddlers at-risk for autism; Journal of Child Psychology & Psychiatry; V60:3, p314-324.
APPENDIX B – LATEST ASD FINDINGS
Latest ASD Findings, with < My Thoughts > by Sara Luker
World Health Organization (WHO) Staff Writers (2022) emphasize that the health-care needs of people with autism are complex and require a range of integrated services, that include health promotion, care and rehabilitation. Collaboration between the health sector and other sectors, particularly education, employment and social care, is important.
As you may already understand, Autism Spectrum Disorder (ASD) is a developmental neurological disorder which according to Researchers at Kobe University (2022), “remains largely unexplained, despite the rapidly increasing number of patients” diagnosed with autism.
Kobe University Researchers (2022) report a recent study, which revealed abnormalities in ‘blood cells’ during fetal development, may result in ‘immune’ abnormalities in the brain and gut. But they say that “the essential mechanisms behind these immune abnormalities have yet to be determined.”
Drake, K. (2021) believes in the speculation of some scientists that ‘gene variants’ are linked to autism. Although each autism case is unique, they also share common characteristics.
Buxbaum, J. (2014) claims that “genetic variation likely accounts for roughly 60 percent of the liability for autism, with common variants comprising the bulk of its genetic architecture.” Buxbaum also comments that “within a given family, the mutations could be a critical determinant that leads to the manifestation of Autism Spectrum Disorder (ASD) in a particular family member.”
< My Thoughts > “…within a given family…”
When trying to fathom how one’s child within a given family can be discovered to have autism, many reasons must be examined. Contained in this writing, I have attempted to gather what I consider to be ‘hopeful’ views and reasons of others who have gone before us.
Wigler, M. (2022) claims that there is more than a ‘random’ chance that a family with an autistic child will also have siblings with autism. But that in large families, only ‘one’ child may show signs of autism. This could possibly be due to the combination of both the child’s ‘inherited genes, and ‘sporadic gene combinations.’ In his ‘unified theory of autism’, the complex developmental neurological disorder of autism is made possible through both these ‘inherited genes, and ‘sporadic gene combinations’ and/or the destruction or damaging of genes through ‘environmental insults’ or ‘spontaneous mutations’. He also wants us to know that while girls may not show symptoms, they can still be carriers of autism. Thus, putting their future children at-risk and making it seem that autism appears more often in boys.
Chaste, P. & Leboyer, M. (2012) say that research shows autism is a complex disorder resulting from the combination of genetic and environmental factors.” That “siblings showing impairment within families is best explained by shared genes, as opposed to a shared environment.” One study estimates the heritability of autism to be 55%. And, there has been a huge effort in research to try to unravel the underlying genetic factors, within families.
Karmiloff-Smith, A. (2010) has been quoted, over time, as believing that “too much brain growth, followed by too much synaptic pruning” leads to the pattern which appears in the autistic brain, and that this ‘over-pruning’ can cause ‘autism traits’ to appear when the child reaches 18 months of age.
< My Thoughts > “…‘autism traits’ to appear…”
While some say that ‘autism traits’ appear when the child reaches 18 months of age, more recent findings consider the appearance age to be closer to 36 months. Or, show when a child is presented with certain behavioral demands in environmental, social, and/or preschool settings. Often, when a child cannot meet these demands, s/he retreats, withdraws, or ‘acts out’. But chances are that they do not want to ‘give you a bad time’; they are ‘having a bad time!’
Other studies report strong evidence of exposure to toxins. Including ‘environmental insults’, during the unfolding of the ‘neurodevelopmental processes’. There have been higher concentrations of heavy metals found in the blood, urine, hair, brain, or teeth of children with autism; as compared with controls. Cited toxins were solvents, toxic waste sites, air pollutants, pesticides, and heavy metals.
< My Thoughts > “…exposure to toxins.”
This doesn’t explain the higher risk for autism in boys, than in girls. Nor, does it define whether these exposures, if detrimental, are experienced by the mother during the gestational period; or by the child during the developmental period. So many questions remain unanswered.
Gilberg, M. (2020) gives us an idea of what his world is like. “I felt I was trapped between two worlds. I could only describe it as having a brain that was half autistic and half neurotypical. I believe from my own life experience that you can actually have a brain that is both.”
He continues, “I felt too ‘normal’ in much autistic company and too ‘autistic’ in neurotypical company. When I have taken Autism inventories or rating scales I routinely score just over the ‘autistic’ line.”
< My Thoughts > “…‘autistic’ line.”
This brings to mind ‘the line in the sand’ analogy made by Yale Child Study Center researcher, K. Chawarska. She claims that when discerning autism from an innate developmental problem or a problem of regression, it is like trying to ‘draw a line’ in shifting sand. For instance, before losing a skill can be considered to be ‘regression’, some believe that a child must be proficient in that skill for at least 3 months, prior to losing it.
Yet another analogy that autism signs (lines) are illusive may be when symptoms are compared to spotting something under the lamppost. It is said that we usually clearly see only that which is illuminated in a bright pool of the streetlight. We rarely see the subtle things which lurk in the dark shadows. As subtle as not sharing or returning a smile.
Others consider in the early descriptions of autism as a ‘great divide’ between those with autism symptoms, and those without. Sometimes however subtly, a child's behavior provides ‘faint’ clues to social ineptness, or developmental delays, it remains there. But, the tendency of teachers and/or parents is to forget, or explain away a missing behavior.
Svoboda, E. (2020) explains that at a year old patient, Ethan Loyola, during this early developmental period, had been given several courses of antibiotics to treat an ear infection. He was left with painful diarrhea. Soon after that, he was diagnosed with Autism.
While not clear evidence of linking 'gut' problems with autism, Ethan's digestive issues continued as he grew older. His father finally took him to Arizona State University, near his home, where Ethan was enrolled in a micro biotic transfer therapy used to successfully recolonize his gut. Studies show that children with autism have a mix of gut microbes which are distinct from those of children without autism.
Scientists say that targeting gut microbes are thought to disrupt neurodevelopment, thus effecting behavior, in children with Autism. But they conclude, “…we need more evidence, overall.”
REFERENCES: APPENDIX B – LATEST FINDINGS
Advocates of Autistic Self-Advocacy Network (ASAN) (2022). May Update; Retrieved online from –https://autisticadvocacy.org
Buxbaum, J. (2014). Most Genetic Risk for Autism resides with a Common Variation; Retrieved online from – https://www.nature.com/articles/ng.3039
Chaste, P. & Leboyer, M. (2012). Autism Risk Factors; Dialogues Clinical Neuroscience; Sept. V14(3), P281-292.
Drake, K. (2021). Autism Research: Recent Findings; Retrieved online from – www.medicalnewstoday.com/
Gilberg, M. (2020). Stuck Between Two Worlds: Having a Brain that is Half Autistic & Half Neurotypical; Retrieved online from – https://www.drakeinstitute.com/
Karmiloff-Smith, A. (2010). Neuroimaging of the developing brain; taking developing seriously. Retrieved online from – https://pubmed.ncbi.nlm.nih.gov/20496384/
Kobe University Researchers (2022). Does Autism Begin in the Womb? Retrieved online from –
https://www.kobe-u.ac.jp/research_at_kobe_en/NEWS/
Svoboda, E. (2020). Autism & the Gut; Retrieved online from – www.nature.com/articles/d41586-020-00198-y
Takumi, Toru (2022). Does Autism Begin in the Womb? Research Breakthrough May Lead to New Treatment Strategies; Retrieved online from – https://scitechdaily.com/does-autism-begin-in-the-womb-research-breakthrough-may-lead-to-new-treatment-strategies/
WHO Staff Writers (2022). World Health Organization Comprehensive mental health action plan 2013–2030; Retrieved online from – https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Wigler, M. (2022). A Unified Theory of Autism – Big Think; Retrieved online from – https://bigthink.com/videos/a-unified-theory-of-autism
CHAPTER 3 – DOCTORS & DIRECTION
MISDIAGNOSIS
Ventola, P., Kleinman, J., et al. (2006) claim a study of children who have failed to be diagnosed with ‘autism’, may have ‘something else’. Something that is consistent with impairments in socialization skills, joint attention skills and some aspects of communication, play, and sensory processing. Going on to say that these children have developmental delays, but are ‘less’ impaired than those who met the criteria for Autism Spectrum Disorder (ASD). They conclude that these children seem more adaptable than the ASD children, although they share the same behavioral differences.
They say the fact that children and adults out there are sometimes misdiagnosed, over-diagnosed, or who have missed being diagnosed altogether is understandable. Autism follows many developmental trajectories from low to high functioning, as the term ‘spectrum’ indicates. With the new DSM-5 (2013), the shift is to ‘specificity’ within each subcategory.
In other words, the ‘autism spectrum’ now includes subcategories, which in turn have their own spectrums. These ‘subcategories’ can more readily lead to matching the most appropriate and most effective ‘treatment’ for that child’s specific diagnosis. Thus, allowing the family to more easily qualify for coverage by designated competent providers, and not the financially overwhelmed parent. But if the chosen ‘treatment’ is NOT an ‘accepted’ program, which meets the ‘gold standard’ matching the diagnosis, then neither state funded programs nor insurance will pay for it.
< My Thoughts > “…subcategories…their own spectrums…”
Subcategories with their own spectrums, added to the DSM core autism categories, gives one a clearer glimpse of the complexity involved when identifying a child’s Autism Spectrum Disorder symptoms and current trajectory.
Johnson, I. (2014) shares that hopefully, through my experiences I can show you that it is okay to have some doubts about whether or not your child needs assistance.
Kedar, I. (2012) believes that all parents of autistic children hope that inside, behind all the impossible behaviors, exists a normal child struggling to get out. I remember being saddened to read from more than one well-respected source, that this hope was foolhardy. That to believe this might be so, was to be in denial. That parents needed to accept that behind their child’s autistic behaviors lay an autistic soul.
Apparently, it is okay to drill normalcy into someone, but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body. These theories cost us dearly.
Cohen (2011) recalls beginning to see the danger that comes with trying to “remove” his autism. What will he believe about himself as a human being, as a person with worth in the world? I also think of my own needs in all of this, because I should.
It’s our society that pronounces Ezra disordered, a system of mental health that determines a clear line between people’s neurology and defines whether a person is right or wrong. He has to fit this mold to be considered worthwhile, something I’m quite sure he’ll never do.
< My Thoughts > “…I also think of my own needs…”
Know autism, know your child, and know yourself.
Pedersen A., Pettygrove, S., et al. ((2017) tell us that often times Intellectual Disability (ID) and Autism Spectrum Disorder (ASD) seem to overlap, causing potential diagnostic confusion.
Cademy, L. (2013) confides – I am a parent and I have Asperger’s. I have a child with Pervasive Developmental Disorder-Not-Otherwise Specified (PDD-NOS) and I have stories to tell.
Some schools have wonderful programs for children on the Autism Spectrum, but your child will only receive services if labeled as having a condition listed in the current DSM.
“I am not a fan of labels, especially because ‘NLD’ is not listed in the book. So, in this case, a precise label is worse than useless.” Some people think that the DSM-5 committee could do a better job of separating autism spectrum disorders from non-spectrum disorders, which they now list as “language disorders, intellectual disabilities, attention deficit hyperactivity disorders, and anxiety disorders.”
< My Thoughts > “…‘NLD’ is not listed in the book.”
When Liz mentions ‘not listed in the book’ she is probably referring to the American Psychiatric Association; Diagnostic & Statistical Manual of Mental Disorders (4th Edition). The DSM-5 (2013) was published the same year as her book, so if the latest revision (DSM-5) had been used, it may have helped her child receive an earlier NLD diagnosis. But, may still be left to clinical interpretation.
Coplan, J. (2010) calls children who are atypical, but not really autistic, ‘NLD’; Non-verbal Learning Disability. Continuing, Coplan, J. says NLDs may also have poor fine motor right/left coordination, and trouble with understanding ‘personal space’.
< My Thoughts > “…‘NLD’…”
This doesn’t mean they are non-verbal, as our Sonny is, because he’s unable to verbalize language, but he can vocalize and make sounds. NLDs have difficulty with conversational language, and have their own separate diagnostic symptoms.
Staff Writers (2022) say that a child with Autism, depending on the DSM-5 Level of Severity, usually has difficulty with age-appropriate spoken language. While the child with NVLD, has a strong range of developmentally-appropriate vocabulary & language skills.
But, poor spatial skills, paired with good language skills, are the essential features required in the diagnosis of Non-Verbal Learning Disability (NVLD). for this reason, it is often undiagnosed or misdiagnosed until noticed by teachers when the student is having difficulty with grade-level school performance. At that time, students may then be referred to additional professionals for observation & testing.
Cademy, L. (2013) cautions that if you know your child with ‘mild’ symptoms will need school learning accommodations, have a ‘professional’ write a diagnosis of Asperger’s or High Functioning Autism (HFA).
School records are destroyed upon graduation and are not released outside the school, so the misdiagnosis won’t haunt your child later in life.
< My Thoughts > “…misdiagnosis won’t haunt your child…”
Remember, your child’s labels, such as – HFA is a term for High Functioning Autism, and NLD for Non-verbal Learning Disorder, can be removed from records when they reach a certain age. Check with your state for their statutes.
Note: More about (IEP) Individualized Education Program Accommodations in UNIT 6 Chapter 3.
Ha, V., Whittaker, A., et al.(2012) remind us that ‘misdiagnosis’ was prevalent in the late 1900’s and early 2000’s. Now, in addition, ‘over-diagnosis’ is the ‘great concern’ of parents and some professionals. But, lack of ‘early identification’ does not serve us well either.
They say that in their country, Vietnam, health service providers are forced to adopt a realistic response in order to meet the needs of the children and parents seeking assessment and diagnosis.
Yes, Ha, V. and associates say that autism is ‘global’. But there are only a few private autism intervention centers in Hanoi, and these are just available to a minority of wealthier families. Added to that, they caution us ~ a rushed diagnosis, with assessment tools used from Western countries, sometimes results in an inaccurate diagnostic label.
Nevertheless, services were not available without autism identification and due to marginalized services, the ‘count’ may be low. They believe that a more accurate count is necessary for the country to provide necessary assessments, diagnostic, and therapeutic services to all those in need.
Moore, C. (2008) asks – How much difference does a ‘label’ make? Some parents don’t want their child considered ‘handicapped.’ I think autism is exactly that, a ‘handicap’. A difference that disadvantages you when playing the ‘game of life’. I don’t like the ‘disabled’ label because that suggests you were once ‘abled’, but now you are not. I don’t like autism referred to as a ‘disease’ either, because it’s not catching.
Hinds, M. (2014) says – We openly use the word ‘autistic’ at home. I have never hidden it from them, nor have their teachers. Having my boys ‘labeled’ has many practical advantages. None of the sources of help would have been available to me if the boys had not been formally diagnosed. And, it helps me explain why 4-year-old Sam is still in nappies. Or, why big brother George sometimes twiddles his fingers in front of his eyes.
< My Thoughts > “…it helps me explain…”
Misdiagnosis can result in your child receiving unnecessary or inappropriate services. Over-diagnosis can also have negative consequences. Some tests provide overlapping information and that’s okay when clinicians will know how to sort everything out. And, when trying to get to know the child behind the autism, or prioritizing interventions, it helps to understand that s/he may be showing symptoms of more than one problem, challenge, or disorder.
Sonny’s mental age is 2-3 years old; he is non-verbal and has profound autism. He has a sweet personality and tries very hard to learn new skills. Like a ‘non-extinguishing trick firecracker, his brain is continually firing off seizures. Tragically, when he has undergone severe seizure activity, he may lose well established skills, thus losing some of his independence.
His seizure activity has led to ‘misdiagnosis’ over the years. Typically, he can be right in the middle of something he has done many times and suddenly he looks at you as if he doesn’t know what he’s doing. He doesn’t know who you are, or where he is. Sometimes he knows a seizure is coming and he’ll lead us to his suppository medication. Afterwards, we tell him, “Hey, that was a just a seizure, you’re okay now.” That seems to satisfy him and we guide him back to his activity, unless he wants to go to bed to recover.
According to Crumrine, P. (2001), ‘Atypical absence seizures’ look as if the person has just ‘checked-out’ for a second or two. During which, they will not respond to environmental stimuli. An ‘atonic seizure’ is a brief loss of posture. It looks like a head nod or a more observable fall to the ground, stumbling as knees give out. She also describes this Lennox-Gastaut Syndrome (LGS) as having at least two seizure types, including ‘tonic’, ‘atonic’, and/or ‘atypical absence seizures’; along with ‘cognitive impairment’ and often times, lack of the ability to learn language, or to become verbal.
< My Thoughts > “…along with…”
For Sonny, having autism and LGS is like being stuck in the ‘terrible twos’. He laughs, makes noises, sounds and grunts. But can never utter words. We were told that the frontal lobe of his brain had never formed completely. Toilet training wasn’t successful until age 13 years, due to gross and fine motor skill deficits.
Acting one way one minute and another way the next, his behavior is confusing. At times his seizures may look as if he is frozen in time, staring, suddenly jolting, stumbling or changing his gait, and/or tantrumming and running in every direction, at once trying to escape what he is experiencing.
You can understand why Sonny was originally misdiagnosed with ADHD, OCD, SIBs, behavior disorder, panic disorder, elopement disorder, cognitive disorder, speech disorder, eating disorder, and so on. Everything it turns out, but ‘epilepsy’, and autism.
Ali, D. (2015) adds – Make certain that it’s the ‘right’ diagnosis. There's no ‘slam dunk’ to diagnosis. Some kids are identified through the school system and not through a clinician. But your child should always get a diagnosis from a developmental pediatrician or a neurologist with a specialty in autism.
REFERENCES: UNIT 2 – Why Is It Autism? –
CHAPTER 2 – DENIAL & MISDIAGNOSIS
Ali, D. (2015). How to Handle Your Child’s Autism Diagnosis; Retrieved online from –http://www.parents.com/health/autism/symptoms/handling-your-childs-autism-diagnosis/
Bright Tots Editor (2019). Stereotype Behavior; Retrieved online from – http://brighttots.com/Autistic_behaviors.html/
Cademy, L. (2013). The Aspie Parent: the First Two Years, A Collection of Posts from the Aspie Parent Blog; eBook Edition.
Cariello, C. (2015). What Color is Monday? How Autism Changed One Family for the Better; eBook Edition.
Crumrine, P. (2001). Lennox-Gaustaut Syndrome; Journal of Child Neurology; V17:1.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal; eBook Edition.
Coplan, J. (2010). Not Quite Autism: At the Borderland of ASD; Retrieved online from – https://www.psychologytoday.com/
Davide-Rivera, J. (2013). Twirling Naked in the Streets & No One Noticed: Growing Up with Autism; eBook Edition.
Deweerdt, S. (2019). Rett Syndrome’s Link to Autism; Retrieved online from – https://www.spectrumnews.org/news/rett-syndromes-link-to-autism-explained
DSM-4 (1994). Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition; Publishers, The American Psychiatric Association (APA), Washington, DC.
DSM-5 (2013). Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition; Publishers, The American Psychiatric Association (APA), Washington, DC.
Edelson, S., Ph.D. (2016). Toe-walking; Retrieved online from – https://www.autism.coqm/symptoms_toe_walking/
Engel, R. (2019). On Assignment with Richard Engel on MSNBC. Retrieved online from – https://people.com/parents/richard-engel-new-baby-son-rett-syndrome-differences-exclusive.
Ha, V., Whittaker, A., et al.(2012). Assessment & Diagnosis of Autism Spectrum Disorder in Hanoi, Vietnam; Journal of Child & Family Studies; V26, p1334-1344.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Johnson, I. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism; eBook Edition.
Mandy, W. (2013). DSM-5 May Better Serve Girls with Autism; Senior Lecturer in clinical psychology, University College London. Retrieved online from –
https://www.spectrumnews.org/opinion/dsm-5-may-better-serve-girls-with-autism/.
Moore, C. (2008). Thoughts About the Autism Label: A Parental View; Journal of Philosophy of Education; V42:3-4.
Pedersen A., Pettygrove, S., et al. (2017). DSM Criteria that Best Differentiate Intellectual Disability from Autism Spectrum Disorder; Journal of Child Psychiatry Human Development; V48: 537-545.
Staff Writers (2022). What Are the Three Levels of Autism; Retrieved online from – https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233
Stagliano, K., & McCarthy, J. (2010). All I Can Handle, and I Am No Mother Teresa: A Life Raising Three Daughters with Autism; eBook Edition.
Ventola, P., Kleinman, J., et al. (2006). Differentiating Between Autism Spectrum Disorders and Other Developmental Disabilities in Children Who Failed a Screening Instrument for ASD; Journal of Developmental Disorders: V37:425-436.
Web M.D. Staff Writer (2018). Asperger’s Syndrome: Symptoms, Tests, Diagnosis; Retrieved online from – https://www.webmd.com/brain/autism/mental-health-aspergers-syndrome
Wolff, J., Dimian, A., et al. (2019). A longitudinal study of parent-reported sensory responsiveness in toddlers at-risk for autism; Journal of Child Psychology & Psychiatry; V60:3, p314-324.
APPENDIX B – LATEST ASD FINDINGS
Latest ASD Findings, with < My Thoughts > by Sara Luker
World Health Organization (WHO) Staff Writers (2022) emphasize that the health-care needs of people with autism are complex and require a range of integrated services, that include health promotion, care and rehabilitation. Collaboration between the health sector and other sectors, particularly education, employment and social care, is important.
As you may already understand, Autism Spectrum Disorder (ASD) is a developmental neurological disorder which according to Researchers at Kobe University (2022), “remains largely unexplained, despite the rapidly increasing number of patients” diagnosed with autism.
Kobe University Researchers (2022) report a recent study, which revealed abnormalities in ‘blood cells’ during fetal development, may result in ‘immune’ abnormalities in the brain and gut. But they say that “the essential mechanisms behind these immune abnormalities have yet to be determined.”
Drake, K. (2021) believes in the speculation of some scientists that ‘gene variants’ are linked to autism. Although each autism case is unique, they also share common characteristics.
Buxbaum, J. (2014) claims that “genetic variation likely accounts for roughly 60 percent of the liability for autism, with common variants comprising the bulk of its genetic architecture.” Buxbaum also comments that “within a given family, the mutations could be a critical determinant that leads to the manifestation of Autism Spectrum Disorder (ASD) in a particular family member.”
< My Thoughts > “…within a given family…”
When trying to fathom how one’s child within a given family can be discovered to have autism, many reasons must be examined. Contained in this writing, I have attempted to gather what I consider to be ‘hopeful’ views and reasons of others who have gone before us.
Wigler, M. (2022) claims that there is more than a ‘random’ chance that a family with an autistic child will also have siblings with autism. But that in large families, only ‘one’ child may show signs of autism. This could possibly be due to the combination of both the child’s ‘inherited genes, and ‘sporadic gene combinations.’ In his ‘unified theory of autism’, the complex developmental neurological disorder of autism is made possible through both these ‘inherited genes, and ‘sporadic gene combinations’ and/or the destruction or damaging of genes through ‘environmental insults’ or ‘spontaneous mutations’. He also wants us to know that while girls may not show symptoms, they can still be carriers of autism. Thus, putting their future children at-risk and making it seem that autism appears more often in boys.
Chaste, P. & Leboyer, M. (2012) say that research shows autism is a complex disorder resulting from the combination of genetic and environmental factors.” That “siblings showing impairment within families is best explained by shared genes, as opposed to a shared environment.” One study estimates the heritability of autism to be 55%. And, there has been a huge effort in research to try to unravel the underlying genetic factors, within families.
Karmiloff-Smith, A. (2010) has been quoted, over time, as believing that “too much brain growth, followed by too much synaptic pruning” leads to the pattern which appears in the autistic brain, and that this ‘over-pruning’ can cause ‘autism traits’ to appear when the child reaches 18 months of age.
< My Thoughts > “…‘autism traits’ to appear…”
While some say that ‘autism traits’ appear when the child reaches 18 months of age, more recent findings consider the appearance age to be closer to 36 months. Or, show when a child is presented with certain behavioral demands in environmental, social, and/or preschool settings. Often, when a child cannot meet these demands, s/he retreats, withdraws, or ‘acts out’. But chances are that they do not want to ‘give you a bad time’; they are ‘having a bad time!’
Other studies report strong evidence of exposure to toxins. Including ‘environmental insults’, during the unfolding of the ‘neurodevelopmental processes’. There have been higher concentrations of heavy metals found in the blood, urine, hair, brain, or teeth of children with autism; as compared with controls. Cited toxins were solvents, toxic waste sites, air pollutants, pesticides, and heavy metals.
< My Thoughts > “…exposure to toxins.”
This doesn’t explain the higher risk for autism in boys, than in girls. Nor, does it define whether these exposures, if detrimental, are experienced by the mother during the gestational period; or by the child during the developmental period. So many questions remain unanswered.
Gilberg, M. (2020) gives us an idea of what his world is like. “I felt I was trapped between two worlds. I could only describe it as having a brain that was half autistic and half neurotypical. I believe from my own life experience that you can actually have a brain that is both.”
He continues, “I felt too ‘normal’ in much autistic company and too ‘autistic’ in neurotypical company. When I have taken Autism inventories or rating scales I routinely score just over the ‘autistic’ line.”
< My Thoughts > “…‘autistic’ line.”
This brings to mind ‘the line in the sand’ analogy made by Yale Child Study Center researcher, K. Chawarska. Previously described in UNIT 2 – Why Is It Autism? – CHAPTER 1 – DIAGNOSIS & DSM-5. She claims that when discerning autism from an innate developmental problem or a problem of regression, it is like trying to ‘draw a line’ in shifting sand. For instance, before losing a skill can be considered to be ‘regression’, some believe that a child must be proficient in that skill for at least 3 months, prior to losing it.
Yet another analogy that autism signs (lines) are illusive may be when symptoms are compared to spotting something under the lamppost. It is said that we usually clearly see only that which is illuminated in a bright pool of the streetlight. We rarely see the subtle things which lurk in the dark shadows. As subtle as not sharing or returning a smile.
Others consider in the early descriptions of autism as a ‘great divide’ between those with autism symptoms, and those without. Sometimes however subtly, a child's behavior provides ‘faint’ clues to social ineptness, or developmental delays, it remains there. But, the tendency of teachers and/or parents is to forget, or explain away a missing behavior.
Svoboda, E. (2020) explains that at a year old patient, Ethan Loyola, during this early developmental period, had been given several courses of antibiotics to treat an ear infection. He was left with painful diarrhea. Soon after that, he was diagnosed with Autism.
While not clear evidence of linking 'gut' problems with autism, Ethan's digestive issues continued as he grew older. His father finally took him to Arizona State University, near his home, where Ethan was enrolled in a micro biotic transfer therapy used to successfully recolonize his gut. Studies show that children with autism have a mix of gut microbes which are distinct from those of children without autism.
Scientists say that targeting gut microbes are thought to disrupt neurodevelopment, thus effecting behavior, in children with Autism. But they conclude, “…we need more evidence, overall.”
REFERENCES: APPENDIX B – LATEST FINDINGS
Advocates of Autistic Self-Advocacy Network (ASAN) (2022). May Update; Retrieved online from –https://autisticadvocacy.org
Buxbaum, J. (2014). Most Genetic Risk for Autism resides with a Common Variation; Retrieved online from – https://www.nature.com/articles/ng.3039
Chaste, P. & Leboyer, M. (2012). Autism Risk Factors; Dialogues Clinical Neuroscience; Sept. V14(3), P281-292.
Drake, K. (2021). Autism Research: Recent Findings; Retrieved online from – www.medicalnewstoday.com/
Gilberg, M. (2020). Stuck Between Two Worlds: Having a Brain that is Half Autistic & Half Neurotypical; Retrieved online from – https://www.drakeinstitute.com/
Karmiloff-Smith, A. (2010). Neuroimaging of the developing brain; taking developing seriously. Retrieved online from – https://pubmed.ncbi.nlm.nih.gov/20496384/
Kobe University Researchers (2022). Does Autism Begin in the Womb? Retrieved online from –
https://www.kobe-u.ac.jp/research_at_kobe_en/NEWS/
Svoboda, E. (2020). Autism & the Gut; Retrieved online from – www.nature.com/articles/d41586-020-00198-y
Takumi, Toru (2022). Does Autism Begin in the Womb? Research Breakthrough May Lead to New Treatment Strategies; Retrieved online from – https://scitechdaily.com/does-autism-begin-in-the-womb-research-breakthrough-may-lead-to-new-treatment-strategies/
WHO Staff Writers (2022). World Health Organization Comprehensive mental health action plan 2013–2030; Retrieved online from – https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Wigler, M. (2022). A Unified Theory of Autism – Big Think; Retrieved online from – https://bigthink.com/videos/a-unified-theory-of-autism
CHAPTER 3 – DOCTORS & DIRECTION
Ventola, P., Kleinman, J., et al. (2006) claim a study of children who have failed to be diagnosed with ‘autism’, may have ‘something else’. Something that is consistent with impairments in socialization skills, joint attention skills and some aspects of communication, play, and sensory processing. Going on to say that these children have developmental delays, but are ‘less’ impaired than those who met the criteria for Autism Spectrum Disorder (ASD). They conclude that these children seem more adaptable than the ASD children, although they share the same behavioral differences.
They say the fact that children and adults out there are sometimes misdiagnosed, over-diagnosed, or who have missed being diagnosed altogether is understandable. Autism follows many developmental trajectories from low to high functioning, as the term ‘spectrum’ indicates. With the new DSM-5 (2013), the shift is to ‘specificity’ within each subcategory.
In other words, the ‘autism spectrum’ now includes subcategories, which in turn have their own spectrums. These ‘subcategories’ can more readily lead to matching the most appropriate and most effective ‘treatment’ for that child’s specific diagnosis. Thus, allowing the family to more easily qualify for coverage by designated competent providers, and not the financially overwhelmed parent. But if the chosen ‘treatment’ is NOT an ‘accepted’ program, which meets the ‘gold standard’ matching the diagnosis, then neither state funded programs nor insurance will pay for it.
< My Thoughts > “…subcategories…their own spectrums…”
Subcategories with their own spectrums, added to the DSM core autism categories, gives one a clearer glimpse of the complexity involved when identifying a child’s Autism Spectrum Disorder symptoms and current trajectory.
Johnson, I. (2014) shares that hopefully, through my experiences I can show you that it is okay to have some doubts about whether or not your child needs assistance.
Kedar, I. (2012) believes that all parents of autistic children hope that inside, behind all the impossible behaviors, exists a normal child struggling to get out. I remember being saddened to read from more than one well-respected source, that this hope was foolhardy. That to believe this might be so, was to be in denial. That parents needed to accept that behind their child’s autistic behaviors lay an autistic soul.
Apparently, it is okay to drill normalcy into someone, but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body. These theories cost us dearly.
Cohen (2011) recalls beginning to see the danger that comes with trying to “remove” his autism. What will he believe about himself as a human being, as a person with worth in the world? I also think of my own needs in all of this, because I should.
It’s our society that pronounces Ezra disordered, a system of mental health that determines a clear line between people’s neurology and defines whether a person is right or wrong. He has to fit this mold to be considered worthwhile, something I’m quite sure he’ll never do.
< My Thoughts > “…I also think of my own needs…”
Know autism, know your child, and know yourself.
Pedersen A., Pettygrove, S., et al. ((2017) tell us that often times Intellectual Disability (ID) and Autism Spectrum Disorder (ASD) seem to overlap, causing potential diagnostic confusion.
Cademy, L. (2013) confides – I am a parent and I have Asperger’s. I have a child with Pervasive Developmental Disorder-Not-Otherwise Specified (PDD-NOS) and I have stories to tell.
Some schools have wonderful programs for children on the Autism Spectrum, but your child will only receive services if labeled as having a condition listed in the current DSM.
“I am not a fan of labels, especially because ‘NLD’ is not listed in the book. So, in this case, a precise label is worse than useless.” Some people think that the DSM-5 committee could do a better job of separating autism spectrum disorders from non-spectrum disorders, which they now list as “language disorders, intellectual disabilities, attention deficit hyperactivity disorders, and anxiety disorders.”
< My Thoughts > “…‘NLD’ is not listed in the book.”
When Liz mentions ‘not listed in the book’ she is probably referring to the American Psychiatric Association; Diagnostic & Statistical Manual of Mental Disorders (4th Edition). The DSM-5 (2013) was published the same year as her book, so if the latest revision (DSM-5) had been used, it may have helped her child receive an earlier NLD diagnosis. But, may still be left to clinical interpretation.
Coplan, J. (2010) calls children who are atypical, but not really autistic, ‘NLD’; Non-verbal Learning Disability. Continuing, Coplan, J. says NLDs may also have poor fine motor right/left coordination, and trouble with understanding ‘personal space’.
< My Thoughts > “…‘NLD’…”
This doesn’t mean they are non-verbal, as our Sonny is, because he’s unable to verbalize language, but he can vocalize and make sounds. NLDs have difficulty with conversational language, and have their own separate diagnostic symptoms.
Staff Writers (2022) say that a child with Autism, depending on the DSM-5 Level of Severity, usually has difficulty with age-appropriate spoken language. While the child with NVLD, has a strong range of developmentally-appropriate vocabulary & language skills.
But, poor spatial skills, paired with good language skills, are the essential features required in the diagnosis of Non-Verbal Learning Disability (NVLD). for this reason, it is often undiagnosed or misdiagnosed until noticed by teachers when the student is having difficulty with grade-level school performance. At that time, students may then be referred to additional professionals for observation & testing.
Cademy, L. (2013) cautions that if you know your child with ‘mild’ symptoms will need school learning accommodations, have a ‘professional’ write a diagnosis of Asperger’s or High Functioning Autism (HFA).
School records are destroyed upon graduation and are not released outside the school, so the misdiagnosis won’t haunt your child later in life.
< My Thoughts > “…misdiagnosis won’t haunt your child…”
Remember, your child’s labels, such as – HFA is a term for High Functioning Autism, and NLD for Non-verbal Learning Disorder, can be removed from records when they reach a certain age. Check with your state for their statutes.
Note: More about (IEP) Individualized Education Program Accommodations in UNIT 6 Chapter 3.
Ha, V., Whittaker, A., et al.(2012) remind us that ‘misdiagnosis’ was prevalent in the late 1900’s and early 2000’s. Now, in addition, ‘over-diagnosis’ is the ‘great concern’ of parents and some professionals. But, lack of ‘early identification’ does not serve us well either.
They say that in their country, Vietnam, health service providers are forced to adopt a realistic response in order to meet the needs of the children and parents seeking assessment and diagnosis.
Yes, Ha, V. and associates say that autism is ‘global’. But there are only a few private autism intervention centers in Hanoi, and these are just available to a minority of wealthier families. Added to that, they caution us ~ a rushed diagnosis, with assessment tools used from Western countries, sometimes results in an inaccurate diagnostic label.
Nevertheless, services were not available without autism identification and due to marginalized services, the ‘count’ may be low. They believe that a more accurate count is necessary for the country to provide necessary assessments, diagnostic, and therapeutic services to all those in need.
Moore, C. (2008) asks – How much difference does a ‘label’ make? Some parents don’t want their child considered ‘handicapped.’ I think autism is exactly that, a ‘handicap’. A difference that disadvantages you when playing the ‘game of life’. I don’t like the ‘disabled’ label because that suggests you were once ‘abled’, but now you are not. I don’t like autism referred to as a ‘disease’ either, because it’s not catching.
Hinds, M. (2014) says – We openly use the word ‘autistic’ at home. I have never hidden it from them, nor have their teachers. Having my boys ‘labeled’ has many practical advantages. None of the sources of help would have been available to me if the boys had not been formally diagnosed. And, it helps me explain why 4-year-old Sam is still in nappies. Or, why big brother George sometimes twiddles his fingers in front of his eyes.
< My Thoughts > “…it helps me explain…”
Misdiagnosis can result in your child receiving unnecessary or inappropriate services. Over-diagnosis can also have negative consequences. Some tests provide overlapping information and that’s okay when clinicians will know how to sort everything out. And, when trying to get to know the child behind the autism, or prioritizing interventions, it helps to understand that s/he may be showing symptoms of more than one problem, challenge, or disorder.
Sonny’s mental age is 2-3 years old; he is non-verbal and has profound autism. He has a sweet personality and tries very hard to learn new skills. Like a ‘non-extinguishing trick firecracker, his brain is continually firing off seizures. Tragically, when he has undergone severe seizure activity, he may lose well established skills, thus losing some of his independence.
His seizure activity has led to ‘misdiagnosis’ over the years. Typically, he can be right in the middle of something he has done many times and suddenly he looks at you as if he doesn’t know what he’s doing. He doesn’t know who you are, or where he is. Sometimes he knows a seizure is coming and he’ll lead us to his suppository medication. Afterwards, we tell him, “Hey, that was a just a seizure, you’re okay now.” That seems to satisfy him and we guide him back to his activity, unless he wants to go to bed to recover.
According to Crumrine, P. (2001), ‘Atypical absence seizures’ look as if the person has just ‘checked-out’ for a second or two. During which, they will not respond to environmental stimuli. An ‘atonic seizure’ is a brief loss of posture. It looks like a head nod or a more observable fall to the ground, stumbling as knees give out. She also describes this Lennox-Gastaut Syndrome (LGS) as having at least two seizure types, including ‘tonic’, ‘atonic’, and/or ‘atypical absence seizures’; along with ‘cognitive impairment’ and often times, lack of the ability to learn language, or to become verbal.
< My Thoughts > “…along with…”
For Sonny, having autism and LGS is like being stuck in the ‘terrible twos’. He laughs, makes noises, sounds and grunts. But can never utter words. We were told that the frontal lobe of his brain had never formed completely. Toilet training wasn’t successful until age 13 years, due to gross and fine motor skill deficits.
Acting one way one minute and another way the next, his behavior is confusing. At times his seizures may look as if he is frozen in time, staring, suddenly jolting, stumbling or changing his gait, and/or tantrumming and running in every direction, at once trying to escape what he is experiencing.
You can understand why Sonny was originally misdiagnosed with ADHD, OCD, SIBs, behavior disorder, panic disorder, elopement disorder, cognitive disorder, speech disorder, eating disorder, and so on. Everything it turns out, but ‘epilepsy’, and autism.
Ali, D. (2015) adds – Make certain that it’s the ‘right’ diagnosis. There's no ‘slam dunk’ to diagnosis. Some kids are identified through the school system and not through a clinician. But your child should always get a diagnosis from a developmental pediatrician or a neurologist with a specialty in autism.
REFERENCES: UNIT 2 – Why Is It Autism? –
CHAPTER 2 – DENIAL & MISDIAGNOSIS
Ali, D. (2015). How to Handle Your Child’s Autism Diagnosis; Retrieved online from –http://www.parents.com/health/autism/symptoms/handling-your-childs-autism-diagnosis/
Bright Tots Editor (2019). Stereotype Behavior; Retrieved online from – http://brighttots.com/Autistic_behaviors.html/
Cademy, L. (2013). The Aspie Parent: the First Two Years, A Collection of Posts from the Aspie Parent Blog; eBook Edition.
Cariello, C. (2015). What Color is Monday? How Autism Changed One Family for the Better; eBook Edition.
Crumrine, P. (2001). Lennox-Gaustaut Syndrome; Journal of Child Neurology; V17:1.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal; eBook Edition.
Coplan, J. (2010). Not Quite Autism: At the Borderland of ASD; Retrieved online from – https://www.psychologytoday.com/
Davide-Rivera, J. (2013). Twirling Naked in the Streets & No One Noticed: Growing Up with Autism; eBook Edition.
Deweerdt, S. (2019). Rett Syndrome’s Link to Autism; Retrieved online from – https://www.spectrumnews.org/news/rett-syndromes-link-to-autism-explained
DSM-4 (1994). Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition; Publishers, The American Psychiatric Association (APA), Washington, DC.
DSM-5 (2013). Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition; Publishers, The American Psychiatric Association (APA), Washington, DC.
Edelson, S., Ph.D. (2016). Toe-walking; Retrieved online from – https://www.autism.coqm/symptoms_toe_walking/
Engel, R. (2019). On Assignment with Richard Engel on MSNBC. Retrieved online from – https://people.com/parents/richard-engel-new-baby-son-rett-syndrome-differences-exclusive.
Ha, V., Whittaker, A., et al.(2012). Assessment & Diagnosis of Autism Spectrum Disorder in Hanoi, Vietnam; Journal of Child & Family Studies; V26, p1334-1344.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Johnson, I. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism; eBook Edition.
Mandy, W. (2013). DSM-5 May Better Serve Girls with Autism; Senior Lecturer in clinical psychology, University College London. Retrieved online from –
https://www.spectrumnews.org/opinion/dsm-5-may-better-serve-girls-with-autism/.
Moore, C. (2008). Thoughts About the Autism Label: A Parental View; Journal of Philosophy of Education; V42:3-4.
Pedersen A., Pettygrove, S., et al. (2017). DSM Criteria that Best Differentiate Intellectual Disability from Autism Spectrum Disorder; Journal of Child Psychiatry Human Development; V48: 537-545.
Staff Writers (2022). What Are the Three Levels of Autism; Retrieved online from – https://www.verywellhealth.com/what-are-the-three-levels-of-autism-260233
Stagliano, K., & McCarthy, J. (2010). All I Can Handle, and I Am No Mother Teresa: A Life Raising Three Daughters with Autism; eBook Edition.
Ventola, P., Kleinman, J., et al. (2006). Differentiating Between Autism Spectrum Disorders and Other Developmental Disabilities in Children Who Failed a Screening Instrument for ASD; Journal of Developmental Disorders: V37:425-436.
Web M.D. Staff Writer (2018). Asperger’s Syndrome: Symptoms, Tests, Diagnosis; Retrieved online from – https://www.webmd.com/brain/autism/mental-health-aspergers-syndrome
Wolff, J., Dimian, A., et al. (2019). A longitudinal study of parent-reported sensory responsiveness in toddlers at-risk for autism; Journal of Child Psychology & Psychiatry; V60:3, p314-324.
APPENDIX B – LATEST ASD FINDINGS
Latest ASD Findings, with < My Thoughts > by Sara Luker
World Health Organization (WHO) Staff Writers (2022) emphasize that the health-care needs of people with autism are complex and require a range of integrated services, that include health promotion, care and rehabilitation. Collaboration between the health sector and other sectors, particularly education, employment and social care, is important.
As you may already understand, Autism Spectrum Disorder (ASD) is a developmental neurological disorder which according to Researchers at Kobe University (2022), “remains largely unexplained, despite the rapidly increasing number of patients” diagnosed with autism.
Kobe University Researchers (2022) report a recent study, which revealed abnormalities in ‘blood cells’ during fetal development, may result in ‘immune’ abnormalities in the brain and gut. But they say that “the essential mechanisms behind these immune abnormalities have yet to be determined.”
Drake, K. (2021) believes in the speculation of some scientists that ‘gene variants’ are linked to autism. Although each autism case is unique, they also share common characteristics.
Buxbaum, J. (2014) claims that “genetic variation likely accounts for roughly 60 percent of the liability for autism, with common variants comprising the bulk of its genetic architecture.” Buxbaum also comments that “within a given family, the mutations could be a critical determinant that leads to the manifestation of Autism Spectrum Disorder (ASD) in a particular family member.”
< My Thoughts > “…within a given family…”
When trying to fathom how one’s child within a given family can be discovered to have autism, many reasons must be examined. Contained in this writing, I have attempted to gather what I consider to be ‘hopeful’ views and reasons of others who have gone before us.
Wigler, M. (2022) claims that there is more than a ‘random’ chance that a family with an autistic child will also have siblings with autism. But that in large families, only ‘one’ child may show signs of autism. This could possibly be due to the combination of both the child’s ‘inherited genes, and ‘sporadic gene combinations.’ In his ‘unified theory of autism’, the complex developmental neurological disorder of autism is made possible through both these ‘inherited genes, and ‘sporadic gene combinations’ and/or the destruction or damaging of genes through ‘environmental insults’ or ‘spontaneous mutations’. He also wants us to know that while girls may not show symptoms, they can still be carriers of autism. Thus, putting their future children at-risk and making it seem that autism appears more often in boys.
Chaste, P. & Leboyer, M. (2012) say that research shows autism is a complex disorder resulting from the combination of genetic and environmental factors.” That “siblings showing impairment within families is best explained by shared genes, as opposed to a shared environment.” One study estimates the heritability of autism to be 55%. And, there has been a huge effort in research to try to unravel the underlying genetic factors, within families.
Karmiloff-Smith, A. (2010) has been quoted, over time, as believing that “too much brain growth, followed by too much synaptic pruning” leads to the pattern which appears in the autistic brain, and that this ‘over-pruning’ can cause ‘autism traits’ to appear when the child reaches 18 months of age.
< My Thoughts > “…‘autism traits’ to appear…”
While some say that ‘autism traits’ appear when the child reaches 18 months of age, more recent findings consider the appearance age to be closer to 36 months. Or, show when a child is presented with certain behavioral demands in environmental, social, and/or preschool settings. Often, when a child cannot meet these demands, s/he retreats, withdraws, or ‘acts out’. But chances are that they do not want to ‘give you a bad time’; they are ‘having a bad time!’
Other studies report strong evidence of exposure to toxins. Including ‘environmental insults’, during the unfolding of the ‘neurodevelopmental processes’. There have been higher concentrations of heavy metals found in the blood, urine, hair, brain, or teeth of children with autism; as compared with controls. Cited toxins were solvents, toxic waste sites, air pollutants, pesticides, and heavy metals.
< My Thoughts > “…exposure to toxins.”
This doesn’t explain the higher risk for autism in boys, than in girls. Nor, does it define whether these exposures, if detrimental, are experienced by the mother during the gestational period; or by the child during the developmental period. So many questions remain unanswered.
Gilberg, M. (2020) gives us an idea of what his world is like. “I felt I was trapped between two worlds. I could only describe it as having a brain that was half autistic and half neurotypical. I believe from my own life experience that you can actually have a brain that is both.”
He continues, “I felt too ‘normal’ in much autistic company and too ‘autistic’ in neurotypical company. When I have taken Autism inventories or rating scales I routinely score just over the ‘autistic’ line.”
< My Thoughts > “…‘autistic’ line.”
This brings to mind ‘the line in the sand’ analogy made by Yale Child Study Center researcher, K. Chawarska. Previously described in UNIT 2 – Why Is It Autism? – CHAPTER 1 – DIAGNOSIS & DSM-5. She claims that when discerning autism from an innate developmental problem or a problem of regression, it is like trying to ‘draw a line’ in shifting sand. For instance, before losing a skill can be considered to be ‘regression’, some believe that a child must be proficient in that skill for at least 3 months, prior to losing it.
Yet another analogy that autism signs (lines) are illusive may be when symptoms are compared to spotting something under the lamppost. It is said that we usually clearly see only that which is illuminated in a bright pool of the streetlight. We rarely see the subtle things which lurk in the dark shadows. As subtle as not sharing or returning a smile.
Others consider in the early descriptions of autism as a ‘great divide’ between those with autism symptoms, and those without. Sometimes however subtly, a child's behavior provides ‘faint’ clues to social ineptness, or developmental delays, it remains there. But, the tendency of teachers and/or parents is to forget, or explain away a missing behavior.
Svoboda, E. (2020) explains that at a year old patient, Ethan Loyola, during this early developmental period, had been given several courses of antibiotics to treat an ear infection. He was left with painful diarrhea. Soon after that, he was diagnosed with Autism.
While not clear evidence of linking 'gut' problems with autism, Ethan's digestive issues continued as he grew older. His father finally took him to Arizona State University, near his home, where Ethan was enrolled in a micro biotic transfer therapy used to successfully recolonize his gut. Studies show that children with autism have a mix of gut microbes which are distinct from those of children without autism.
Scientists say that targeting gut microbes are thought to disrupt neurodevelopment, thus effecting behavior, in children with Autism. But they conclude, “…we need more evidence, overall.”
REFERENCES: APPENDIX B – LATEST FINDINGS
Advocates of Autistic Self-Advocacy Network (ASAN) (2022). May Update; Retrieved online from –https://autisticadvocacy.org
Buxbaum, J. (2014). Most Genetic Risk for Autism resides with a Common Variation; Retrieved online from – https://www.nature.com/articles/ng.3039
Chaste, P. & Leboyer, M. (2012). Autism Risk Factors; Dialogues Clinical Neuroscience; Sept. V14(3), P281-292.
Drake, K. (2021). Autism Research: Recent Findings; Retrieved online from – www.medicalnewstoday.com/
Gilberg, M. (2020). Stuck Between Two Worlds: Having a Brain that is Half Autistic & Half Neurotypical; Retrieved online from – https://www.drakeinstitute.com/
Karmiloff-Smith, A. (2010). Neuroimaging of the developing brain; taking developing seriously. Retrieved online from – https://pubmed.ncbi.nlm.nih.gov/20496384/
Kobe University Researchers (2022). Does Autism Begin in the Womb? Retrieved online from –
https://www.kobe-u.ac.jp/research_at_kobe_en/NEWS/
Svoboda, E. (2020). Autism & the Gut; Retrieved online from – www.nature.com/articles/d41586-020-00198-y
Takumi, Toru (2022). Does Autism Begin in the Womb? Research Breakthrough May Lead to New Treatment Strategies; Retrieved online from – https://scitechdaily.com/does-autism-begin-in-the-womb-research-breakthrough-may-lead-to-new-treatment-strategies/
WHO Staff Writers (2022). World Health Organization Comprehensive mental health action plan 2013–2030; Retrieved online from – https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Wigler, M. (2022). A Unified Theory of Autism – Big Think; Retrieved online from – https://bigthink.com/videos/a-unified-theory-of-autism
CHAPTER 3 – DOCTORS & DIRECTION
DOCTORS
Ming, X., Hashim, A., et al. (2011) found that in the United States the majority of families with autistic children do not receive specialty referrals from their primary care physician. This is because pediatricians are the ones to coordinate referrals to specialists; such as – developmental pediatricians, child neurologists, psychologists, geneticists, gastroenterologists, allergists/immunologists, and child psychiatrists; as well as early intervention and school programs. In fact, several specialists may need to be seen, due to the child experiencing several disorders at once. Ming, et al. tell us that one of the reasons that families fail to have the referral they need to ‘move on’ towards diagnosis and intervention, is because of ‘outdated’ beliefs.
< My Thoughts > “because of ‘outdated’ beliefs…”
These ‘outdated’ beliefs could stem from the physician’s training focus, or lack thereof, about autism. Perhaps, the ‘medical model’ they follow doesn’t include screening for developmental disorders. And, included in the equation could be the lack of trained specialists in their geographical area, which are available for referral. Then, there is the matter of the necessary insurance coverage, private or otherwise, to pay for all of these service referrals.
Barron, J. (2011) asks if this could be the way kids act at this age – a ‘phase’ of some sort? But it wasn’t a phase, I knew that.
Why did my baby cry so much? Eat so much? The pediatrician looked at me benevolently and pointed out that my baby was growing, and growing normally, and had rosy cheeks.
< My Thoughts > “The pediatrician looked at me benevolently…”
Some professionals say the Autism rates are up only because doctors are screening more. What? Parents say that the doctors they are seeing are listening but don’t ‘hear’ when they have concerns about their child’s ‘odd’ behavior. I know that as a parent I have been told, “Oh mom, calm down.” I felt as if I were alone in a giant tube, with my world shifting and changing and tossing me about in all directions! Family and doctors were rationalizing his symptoms in a new way with every twist and turn. Yet, there is no mention of autism.
Siri, K. (2015) declares that if your pediatrician isn’t seeing what you see, don’t wait for him/her to come around. If your child is under the age of three, contact your state’s early childhood intervention program and ask for an evaluation. You can also visit a developmental pediatrician or clinical psychologist trained in diagnosing Autism Spectrum Disorder.
Don’t ignore your inner ‘parent voice’. If you think professionals are off-base, don’t dismiss your instinct because you’re ‘just’ a parent and he/she is a highly esteemed professional. Get another opinion.
< My Thoughts > “…Get another opinion.”
This time, we finally have the doctor’s undivided attention. I’m nervous because Sonny is not objecting to being in this strange new place. Where are the tantrums? Where is his ‘Attila the Hun’ menacing behavior? Acting like a peaceful little angel, he sits looking so small, in a big chair; looking around the room, making eye contact with these strangers.
This is how ‘autism’ behavior sometimes works, to make you look like the one with the problem. This is why the professionals need our patience and understanding, too. Because, when you try to convince the ‘doubters’, that something is terribly wrong, your very ‘autistic’ child disappears.
My son’s doctor actually said to me, as Sonny sat waiting peacefully – “It doesn’t seem that he needs anything, but I would be glad to prescribe something for you, Mom.” Give me strength! If I have mentioned this before, it’s because it has happened before, several times.
Siri, K. continues saying that parents of autistic children need to adopt the mentalities of both a ‘researcher’ and a ‘warrior’. As both ‘general’ and ‘soldier’ in this fight. You must take ownership of all aspects of treatment, education, therapy, and organization as if preparing for battle.
Your pediatrician can recommend a specialist. And, remember once your child has an official diagnosis they are entitled to Medicaid, which has both pros and cons. Your child can qualify for Supplemental Security Income (SSI), but both this and the Medicaid benefits will only go so far. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like STOMP and Autism Salutes (also military). The Individuals with Disabilities Education Act (IDEA) Part C states that families are to receive services regardless of their ability to pay.
< My Thoughts > “…Your pediatrician can recommend a specialist…”
Know the protocol. Determine what your insurance company requires to change to a developmental pediatrician; such as, getting referrals, and/or seeing private pay professionals on ‘their list’. We found out the hard way when we were told – "If Sonny had been referred to someone on our ‘provider list’, services would have been paid for by us. Now, after-the-fact, you will have to pay $1,000 out-of-pocket." And, Medicaid has a payment protocol, too. They can ask for several months’ notice, in advance of providing for services or arranging payment for services.
Note: More about Insurance in UNIT 6 Chapter 2.
Colson, E., & Colson, C. (2010) say, when we brought Max to the doctor’s office, we would ask – “Why is he crying all the time?” “Why is he throwing up all the time?” “Why doesn’t he sleep?” At four months something was really bothering me, Max wasn’t making eye contact. The doctors said to “wait and see.”
I had to get past the barriers of insurance companies, medical bureaucracy and waiting lists before we could see the specialists who might give me an answer to Max’s language and developmental delays. Weeks and months went by.
< My Thoughts > “The doctors said to “wait and see.”
Weeks and months go by as you ‘wait and see’.
This makes life impossible, especially if there are the chronic ear problems that children with autism may have from a very early age. Stevens (2011) exclaims, when David wasn’t howling, he was adorable. The whole neighborhood was painfully aware that David had suffered a series of ear infections. The screams that signaled physical pain were even more piercing, even more relentless, than his usual howls of protest at the injustices of his existence.
Every ear infection had been chased away with antibiotics, but the infection always seemed to come back worse than before. It was plausible that David’s hearing was clogged, our general practitioner agreed. He might have a condition called ‘glue ear’, where the eardrum was blocked with mucus.
That could make him indifferent to sounds and slow to talk. It appeared to explain all our baby’s problems. And ‘glue ear’ was simple to fix: tiny plug-busters, or grommets, would be inserted into the bungs to clear them.
Barton, M., Dumont-Mathieu, T., et al. (2012) say obvious developmental signs of concern are ‘accelerated’ head growth or other markers consistent with growth problems. But there may be subtle ‘behavioral’ signs which are missed until they fail to develop completely. Early signs of social communication and age-appropriate behaviors supportive of social reciprocity may be missed.
Physicians may feel that parent concerns are considered unnecessary, especially for ‘first-time’ parents. Often, ‘developmental delay’ screening is not offered before 18 – 24 months. And, insurance companies will not pay for frequent or repeated testing, only for routine surveillance, especially to under-served/minority populations. Also, the healthcare provider must use validated testing tools/instruments and measures which correlate with the measures required in the DSM-5; that their insurance company recognizes.
Ming, X., Hashim, A., et al. (2011) found that in the United States the majority of families with autistic children do not receive specialty referrals from their primary care physician. This is because pediatricians are the ones to coordinate referrals to specialists; such as – developmental pediatricians, child neurologists, psychologists, geneticists, gastroenterologists, allergists/immunologists, and child psychiatrists; as well as early intervention and school programs. In fact, several specialists may need to be seen, due to the child experiencing several disorders at once. Ming, et al. tell us that one of the reasons that families fail to have the referral they need to ‘move on’ towards diagnosis and intervention, is because of ‘outdated’ beliefs.
< My Thoughts > “because of ‘outdated’ beliefs…”
These ‘outdated’ beliefs could stem from the physician’s training focus, or lack thereof, about autism. Perhaps, the ‘medical model’ they follow doesn’t include screening for developmental disorders. And, included in the equation could be the lack of trained specialists in their geographical area, which are available for referral. Then, there is the matter of the necessary insurance coverage, private or otherwise, to pay for all of these service referrals.
Barron, J. (2011) asks if this could be the way kids act at this age – a ‘phase’ of some sort? But it wasn’t a phase, I knew that.
Why did my baby cry so much? Eat so much? The pediatrician looked at me benevolently and pointed out that my baby was growing, and growing normally, and had rosy cheeks.
< My Thoughts > “The pediatrician looked at me benevolently…”
Some professionals say the Autism rates are up only because doctors are screening more. What? Parents say that the doctors they are seeing are listening but don’t ‘hear’ when they have concerns about their child’s ‘odd’ behavior. I know that as a parent I have been told, “Oh mom, calm down.” I felt as if I were alone in a giant tube, with my world shifting and changing and tossing me about in all directions! Family and doctors were rationalizing his symptoms in a new way with every twist and turn. Yet, there is no mention of autism.
Siri, K. (2015) declares that if your pediatrician isn’t seeing what you see, don’t wait for him/her to come around. If your child is under the age of three, contact your state’s early childhood intervention program and ask for an evaluation. You can also visit a developmental pediatrician or clinical psychologist trained in diagnosing Autism Spectrum Disorder.
Don’t ignore your inner ‘parent voice’. If you think professionals are off-base, don’t dismiss your instinct because you’re ‘just’ a parent and he/she is a highly esteemed professional. Get another opinion.
< My Thoughts > “…Get another opinion.”
This time, we finally have the doctor’s undivided attention. I’m nervous because Sonny is not objecting to being in this strange new place. Where are the tantrums? Where is his ‘Attila the Hun’ menacing behavior? Acting like a peaceful little angel, he sits looking so small, in a big chair; looking around the room, making eye contact with these strangers.
This is how ‘autism’ behavior sometimes works, to make you look like the one with the problem. This is why the professionals need our patience and understanding, too. Because, when you try to convince the ‘doubters’, that something is terribly wrong, your very ‘autistic’ child disappears.
My son’s doctor actually said to me, as Sonny sat waiting peacefully – “It doesn’t seem that he needs anything, but I would be glad to prescribe something for you, Mom.” Give me strength! If I have mentioned this before, it’s because it has happened before, several times.
Siri, K. continues saying that parents of autistic children need to adopt the mentalities of both a ‘researcher’ and a ‘warrior’. As both ‘general’ and ‘soldier’ in this fight. You must take ownership of all aspects of treatment, education, therapy, and organization as if preparing for battle.
Your pediatrician can recommend a specialist. And, remember once your child has an official diagnosis they are entitled to Medicaid, which has both pros and cons. Your child can qualify for Supplemental Security Income (SSI), but both this and the Medicaid benefits will only go so far. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like STOMP and Autism Salutes (also military). The Individuals with Disabilities Education Act (IDEA) Part C states that families are to receive services regardless of their ability to pay.
< My Thoughts > “…Your pediatrician can recommend a specialist…”
Know the protocol. Determine what your insurance company requires to change to a developmental pediatrician; such as, getting referrals, and/or seeing private pay professionals on ‘their list’. We found out the hard way when we were told – "If Sonny had been referred to someone on our ‘provider list’, services would have been paid for by us. Now, after-the-fact, you will have to pay $1,000 out-of-pocket." And, Medicaid has a payment protocol, too. They can ask for several months’ notice, in advance of providing for services or arranging payment for services.
Note: More about Insurance in UNIT 6 Chapter 2.
Colson, E., & Colson, C. (2010) say, when we brought Max to the doctor’s office, we would ask – “Why is he crying all the time?” “Why is he throwing up all the time?” “Why doesn’t he sleep?” At four months something was really bothering me, Max wasn’t making eye contact. The doctors said to “wait and see.”
I had to get past the barriers of insurance companies, medical bureaucracy and waiting lists before we could see the specialists who might give me an answer to Max’s language and developmental delays. Weeks and months went by.
< My Thoughts > “The doctors said to “wait and see.”
Weeks and months go by as you ‘wait and see’.
This makes life impossible, especially if there are the chronic ear problems that children with autism may have from a very early age. Stevens (2011) exclaims, when David wasn’t howling, he was adorable. The whole neighborhood was painfully aware that David had suffered a series of ear infections. The screams that signaled physical pain were even more piercing, even more relentless, than his usual howls of protest at the injustices of his existence.
Every ear infection had been chased away with antibiotics, but the infection always seemed to come back worse than before. It was plausible that David’s hearing was clogged, our general practitioner agreed. He might have a condition called ‘glue ear’, where the eardrum was blocked with mucus.
That could make him indifferent to sounds and slow to talk. It appeared to explain all our baby’s problems. And ‘glue ear’ was simple to fix: tiny plug-busters, or grommets, would be inserted into the bungs to clear them.
Barton, M., Dumont-Mathieu, T., et al. (2012) say obvious developmental signs of concern are ‘accelerated’ head growth or other markers consistent with growth problems. But there may be subtle ‘behavioral’ signs which are missed until they fail to develop completely. Early signs of social communication and age-appropriate behaviors supportive of social reciprocity may be missed.
Physicians may feel that parent concerns are considered unnecessary, especially for ‘first-time’ parents. Often, ‘developmental delay’ screening is not offered before 18 – 24 months. And, insurance companies will not pay for frequent or repeated testing, only for routine surveillance, especially to under-served/minority populations. Also, the healthcare provider must use validated testing tools/instruments and measures which correlate with the measures required in the DSM-5; that their insurance company recognizes.
DIRECTION
Staff Writer Web MD (2015) helps parents decide how to get, and what to say, to a 'new' doctor.
(Note: In most cases, you must have a doctor’s referral before the insurance company will cover your child’s visit to a ‘new’ doctor.)
Call your child’s current doctor’s office and ask to speak to the nurse or the office manager. Say, “Our last visit was on ________, but since that time I have become concerned about my child’s development. I would like to make a ‘special’ appointment to see the doctor for this reason.”
Be prepared to tell them what your developmental concerns are. You may want to start with things that will get their attention, if they are possibly not familiar seeing patients with developmental delays. Say – “My child is not eating nor sleeping the way s/he was, a few months ago.”
Give them an example – Turns head and refuses to eat/drink, only wants bottle/breast. Sleeps for an hour at a time during the night, and then wakes up startled and fussy when s/he used to sleep through the night. Start with something that will draw their attention to a body function that would not be ‘normal’ for any child at your child’s age.
When you get that appointment, be prepared to elaborate about ‘concerning behavior’ which you are or are NOT seeing in your child. List things that s/he used to do that you don’t see any more. Give examples of these things, with specific dates and times. Explain the ‘developmental delays’ you are seeing. “My child doesn’t babble nor show an interest in anything. S/he doesn’t smile nor make any faces nor play ‘peek-a-boo’ anymore. S/he doesn’t respond when we say his/her name.
Use a phone app, make a video of things to prove your point. These episodes viewed on your phone can show the doctor how your child is acting throughout the day/night. 'Seeing is believing' for someone new to your child.
When contacting doctor’s offices, keep track of the people you have talked to, the date and time that you called. Finally, if you don’t get the response that you are looking for, then try calling the National Dissemination Center for Children with Disabilities. Or, www.hhs.gov (U.S. Department of Health & Human Services). Another exacting source may be to try your state’s Attorney General’s office. Let them know you are looking for a pediatrician who specializes in ‘Developmental Delays’ or has an Autism Specialty.
Your elementary school board of education or local college may have some contact information. Check to see if there is a local or online Autism Support Group. Ask for doctor recommendations. Look for organizations in your area that may have ‘play groups’ or other activities for children with ‘delays’. Try to talk to parents of school children with autism about doctors in the community. If you are a parent who has been in the military, that is another source for information and recommendations. you may want to ask your insurance company who is on their Provider’s List that deals with pediatric developmental delay specialties.
< My Thoughts > "...doctors in the community."
Unfortunately, once you do connect with a concerned and caring provider you may begin to feel that everything is ‘your’ fault. Their line of questioning isn’t always sensitive. You may feel you are being ‘interrogated’. That the ‘burden of proof of your concerns’ is on you. And, it sort of is up to you to give the clinician the evidence needed to write a 'specialist referral'.
Besides being prepared to ‘show & tell’ everything about your child, you will most likely be asked about ‘your’ personal health and legal/illicit drug record. Because, it seems that some thoughts about ‘causes’ of autism still includes studies of a woman’s pre and post childbirth; as you will read in the next excerpt from Case-Lo, C. (2015).
Case-Lo, C. (2015) thought about causes of autism includes studies of women with pro-inflammatory conditions – such as rheumatoid arthritis, asthma, diabetes, obesity, and celiac disease are at greater risk of having kids with autism. The suggestion is that they may have used painkillers which caused problems. Also, that the brains of infants with autism show effects of inflammation.
Autism and related conditions have a complex array of symptoms, ranging from highly functional to severely disabling characteristics. They include – sensory sensitivity, social anxiety, communication difficulties, and repetitive behaviors. She says that research suggests that ASDs may be the result of ‘patches of disorganization’ in the neocortex of the brain. This presents an intriguing avenue of investigation into the impact of inflammation on the cause and course of autism.
< My Thoughts > “…causes of autism…”
When looking for the causes of autism, it seems researchers look in as many places as possible.
Often times, they look at the mother as the ‘main’ contributing suspect. Maybe because of the mother’s ‘mitochondrial’ DNA. This idea seems to be gaining scientific interest.
The problem is that by searching to place ‘blame’ or find ‘cause’, parents may begin to blame one another. Blaming one another has been given as one of the main reasons for parents of children with autism divorcing, separating, or moving apart.
Starr, B. (2013) states that our deoxyribonucleic acid (DNA) is packaged in 23 pairs of chromosomes; the genetic information which makes up our genes. We receive one pair of chromosomes, genetic information, from our mom, and one pair of chromosomes, genetic information, from our dad, thus making up our 46 chromosomes. Therefore, 50% of our DNA is from our biological mother and 50% of our DNA is from our biological father.
Staff Writer, Elemy (2021) explains that researchers have found fast-acting acetaminophen in the cord blood of pregnant mothers. But, not enough studies have been conducted to prove the damaging effects of prescribed and/or illicit drug use, during pregnancy. There are some European studies which indicate that some medication uses in pregnancy, especially cocaine and opioids, can lead to autism in the child.
One study which seems ‘blurred’ as to causation is that of drugs used for ‘depression’. It seems that depression in the mother, if going untreated, may also cause unwanted chemical reactions in the fetus. Other studies claim that chemical toxins persist in the air we breathe, and the water we drink.
Known environmental risks, they also say, are mercury, lead, pesticides, and endocrine-disrupting chemicals, including phthalates.
< My Thoughts > “…endocrine-disrupting chemicals, including phthalates.”
These chemicals are found in a wide range of products, including – plastics, personal care items like lotions and nail polish, vinyl flooring, toys, and even some food packaging.
Dutta, S. S. (2024) did a review on a new study about maternal cannabis use disorder linked to higher autism risk in children, from Psychiatry Research. She discloses this study found that –
The use of cannabis has significantly increased over the past two decades due to the legalization of medicinal and recreational cannabis use. In fact, cannabis has become the most commonly used illicit drug during pregnancy, due to the shifts in illicit drug policies in the United States and other countries.
Rubensteirn, E., Young, J., et al. (2018) reveal the report on maternal ‘opioid & oxytocin’ use before and/or during pregnancy and its relationship to ‘autism features’ in children. Multiple education and healthcare providers who serve children with, or at-risk for ASD have reported that maternal use of either prescribed or illicit pain medication for injuries, back pain, migraines, or other problems increase the odds that their children will present with ASD or Autism-like symptoms.
REFERENCES: UNIT 2 – Why Is It Autism? – CHAPTER 3 – DOCTORS & DIRECTION
Barron, J. (2011). There’s a Boy in Here: Emerging from the Bonds of Autism; eBook Edition.
Barton, M., Dumont-Mathieu, T., et al. (2012). Screening Screening Young Children for Autism Spectrum Disorders in Primary Practice; Journal of Autism & Developmental Disorders; V42: p1165-1174.
Case-Lo, C. (2015). What’s the Connection Between Autism & Inflammation?; Retrieved online from –healthline.com/
Colson, E., & Colson, C. (2010). Dancing With Max: A Mother and Son Who Broke Free; eBooks Edition.
Dutta, S. S. (2024). Maternal cannabis use disorder linked to higher autism risk in children, study finds. Psychiatry Research. Retrieved online from – www.news-medical.net
Ming, X., Hashim, A., et al. (2011). Access to specialty care in autism spectrum disorders: a pilot study of referral source; Health Services Research; V11:99, p1-6.
Rubensteirn, E., Young, J., et al. (2018). Brief Report: Maternal Opioid Prescription for Preconception through Pregnancy & the Odds of Autism Spectrum Disorder & Autism Features in Children; Journal of Autism & Developmental Disorders; V49:1, p376-382.
Siri, K. (2015). 1,001 Tips for the Parents of Autistic Boys; eBook Edition.
Staff Writer, Elemy (2021). What Drugs & Chemicals are Linked to Autism? Retrieved online from – https://elemy.wpengine.com/autism-causes/drugs-and-chemicals
Staff Writer Web MD (2015). What to do Next: How to Get a Specialist; Retrieved online from – www.webmd/
Starr, B. (2013). Relatedness: Understanding Genetics; Retrieved online from – https://genetics.thetech.org/
Stevens, C. & Stevens, N. (2011). A Real Boy: How Autism Shattered Our Lives & Made a Family from the Pieces; eBook Edition.
APPENDIX C – DEVELOPMENTAL SCREENING –
DEVELOPMENTAL SCREENING – What are the guidelines? Assignment for National University; Unit 4.2 (end of Lecture 4.2; 2013.)The standardized guidelines developed for the diagnosis of autism actually involve two levels of screening for autism. ‘Level one’ screening, which should be performed for all children coming to a physician for well-child check-ups during their first two years of life, should check for the following developmental deficits:
The ‘second level’ of screening should be performed if a child is identified in the first level of screening as developmentally delayed. The ‘second level’ of screening is a more in-depth diagnosis and evaluation that can differentiate autism from other developmental disorders. The ‘second level’ of screening may include more formal diagnostic procedures by clinicians skilled in diagnosing autism, including medical history, neurological evaluation, genetic testing, metabolic testing, electrophysiologic testing (i.e., CT scan, MRI, PET scan), psychological testing, among others.
Genetic testing involves an evaluation by a medical geneticist (a physician who has specialized training and certification in clinical genetics), particularly as there are several genetic syndromes which may cause autism, including Fragile-X, untreated phenylketonuria (PKU), neurofibromatosis, tuberous sclerosis, Rett syndrome, as well as a variety of chromosome abnormalities.
A geneticist can determine whether the autism is due to a genetic disorder, or has no known genetic cause. If a genetic disorder is diagnosed, there may be other health problems involved. The chance for autism to occur in a future pregnancy would depend on the syndrome found. For example, PKU is an autosomal recessive disorder with a reoccurrence risk of one in four, or 25 percent, chance, while tuberous sclerosis is an autosomal dominant disorder, with a reoccurrence risk of 50 percent.
Screening for ASDs is the first step of an ongoing process of
identification. It is especially critical for clinicians to understand
this when working with families from diverse backgrounds,
particularly when their primary language is not English or
when they have different views on child development since it
may require more persistent follow up in such circumstances to
keep families engaged.
Getting started:
■ Explain to the family that you routinely screen and
observe young children for healthy development.
■ Ask general questions about the child’s communication
skills and social interactions, but it is also important to
ask specific questions about how their child is doing by
using a screening tool.
■ It is equally important to ask questions about the
family’s understanding of and expectations for child
development. This could provide a wealth of information
and set the stage for mutual communication about child
development in general and the child’s development
specifically.
■ Remember that in some families, questions about a child’s
skills may go unanswered, since they may feel the questions are intrusive.
Some families may view screening as “looking for trouble”
or feel that things clinicians think are problems are not
an issue. Still for other families, their responses may shed
light on their ability, background or resources. Thus,
communicating slowly and clearly while listening carefully
and fully engaging families produces the best results
Approximately 1 in 54 children in the United States has an autism
spectrum disorder; according to the CDC (2020).
❑ The American Academy of Pediatrics (AAP)
recommends ongoing surveillance and ASD-specific
screening at 18 and 24 months or whenever there is
concern.
❑ Autism screening tools, such as the M-CHAT, are
more accurate when used in conjunction with clinical
judgment.
❑ Children with autism from minority backgrounds are
often diagnosed at a later age than other children
❑ The concepts of screening, early identification and
early intervention may be unfamiliar for families
from diverse backgrounds. For many families,
these concepts are culturally bound and they may
perceive that their children will be stigmatized in their
communities by participating in these practices.
DISCLAIMER (2024) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker;
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of any of this material indicates your acceptance of this disclaimer.
This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.
Staff Writer Web MD (2015) helps parents decide how to get, and what to say, to a 'new' doctor.
(Note: In most cases, you must have a doctor’s referral before the insurance company will cover your child’s visit to a ‘new’ doctor.)
Call your child’s current doctor’s office and ask to speak to the nurse or the office manager. Say, “Our last visit was on ________, but since that time I have become concerned about my child’s development. I would like to make a ‘special’ appointment to see the doctor for this reason.”
Be prepared to tell them what your developmental concerns are. You may want to start with things that will get their attention, if they are possibly not familiar seeing patients with developmental delays. Say – “My child is not eating nor sleeping the way s/he was, a few months ago.”
Give them an example – Turns head and refuses to eat/drink, only wants bottle/breast. Sleeps for an hour at a time during the night, and then wakes up startled and fussy when s/he used to sleep through the night. Start with something that will draw their attention to a body function that would not be ‘normal’ for any child at your child’s age.
When you get that appointment, be prepared to elaborate about ‘concerning behavior’ which you are or are NOT seeing in your child. List things that s/he used to do that you don’t see any more. Give examples of these things, with specific dates and times. Explain the ‘developmental delays’ you are seeing. “My child doesn’t babble nor show an interest in anything. S/he doesn’t smile nor make any faces nor play ‘peek-a-boo’ anymore. S/he doesn’t respond when we say his/her name.
Use a phone app, make a video of things to prove your point. These episodes viewed on your phone can show the doctor how your child is acting throughout the day/night. 'Seeing is believing' for someone new to your child.
When contacting doctor’s offices, keep track of the people you have talked to, the date and time that you called. Finally, if you don’t get the response that you are looking for, then try calling the National Dissemination Center for Children with Disabilities. Or, www.hhs.gov (U.S. Department of Health & Human Services). Another exacting source may be to try your state’s Attorney General’s office. Let them know you are looking for a pediatrician who specializes in ‘Developmental Delays’ or has an Autism Specialty.
Your elementary school board of education or local college may have some contact information. Check to see if there is a local or online Autism Support Group. Ask for doctor recommendations. Look for organizations in your area that may have ‘play groups’ or other activities for children with ‘delays’. Try to talk to parents of school children with autism about doctors in the community. If you are a parent who has been in the military, that is another source for information and recommendations. you may want to ask your insurance company who is on their Provider’s List that deals with pediatric developmental delay specialties.
< My Thoughts > "...doctors in the community."
Unfortunately, once you do connect with a concerned and caring provider you may begin to feel that everything is ‘your’ fault. Their line of questioning isn’t always sensitive. You may feel you are being ‘interrogated’. That the ‘burden of proof of your concerns’ is on you. And, it sort of is up to you to give the clinician the evidence needed to write a 'specialist referral'.
Besides being prepared to ‘show & tell’ everything about your child, you will most likely be asked about ‘your’ personal health and legal/illicit drug record. Because, it seems that some thoughts about ‘causes’ of autism still includes studies of a woman’s pre and post childbirth; as you will read in the next excerpt from Case-Lo, C. (2015).
Case-Lo, C. (2015) thought about causes of autism includes studies of women with pro-inflammatory conditions – such as rheumatoid arthritis, asthma, diabetes, obesity, and celiac disease are at greater risk of having kids with autism. The suggestion is that they may have used painkillers which caused problems. Also, that the brains of infants with autism show effects of inflammation.
Autism and related conditions have a complex array of symptoms, ranging from highly functional to severely disabling characteristics. They include – sensory sensitivity, social anxiety, communication difficulties, and repetitive behaviors. She says that research suggests that ASDs may be the result of ‘patches of disorganization’ in the neocortex of the brain. This presents an intriguing avenue of investigation into the impact of inflammation on the cause and course of autism.
< My Thoughts > “…causes of autism…”
When looking for the causes of autism, it seems researchers look in as many places as possible.
Often times, they look at the mother as the ‘main’ contributing suspect. Maybe because of the mother’s ‘mitochondrial’ DNA. This idea seems to be gaining scientific interest.
The problem is that by searching to place ‘blame’ or find ‘cause’, parents may begin to blame one another. Blaming one another has been given as one of the main reasons for parents of children with autism divorcing, separating, or moving apart.
Starr, B. (2013) states that our deoxyribonucleic acid (DNA) is packaged in 23 pairs of chromosomes; the genetic information which makes up our genes. We receive one pair of chromosomes, genetic information, from our mom, and one pair of chromosomes, genetic information, from our dad, thus making up our 46 chromosomes. Therefore, 50% of our DNA is from our biological mother and 50% of our DNA is from our biological father.
Staff Writer, Elemy (2021) explains that researchers have found fast-acting acetaminophen in the cord blood of pregnant mothers. But, not enough studies have been conducted to prove the damaging effects of prescribed and/or illicit drug use, during pregnancy. There are some European studies which indicate that some medication uses in pregnancy, especially cocaine and opioids, can lead to autism in the child.
One study which seems ‘blurred’ as to causation is that of drugs used for ‘depression’. It seems that depression in the mother, if going untreated, may also cause unwanted chemical reactions in the fetus. Other studies claim that chemical toxins persist in the air we breathe, and the water we drink.
Known environmental risks, they also say, are mercury, lead, pesticides, and endocrine-disrupting chemicals, including phthalates.
< My Thoughts > “…endocrine-disrupting chemicals, including phthalates.”
These chemicals are found in a wide range of products, including – plastics, personal care items like lotions and nail polish, vinyl flooring, toys, and even some food packaging.
Dutta, S. S. (2024) did a review on a new study about maternal cannabis use disorder linked to higher autism risk in children, from Psychiatry Research. She discloses this study found that –
The use of cannabis has significantly increased over the past two decades due to the legalization of medicinal and recreational cannabis use. In fact, cannabis has become the most commonly used illicit drug during pregnancy, due to the shifts in illicit drug policies in the United States and other countries.
Rubensteirn, E., Young, J., et al. (2018) reveal the report on maternal ‘opioid & oxytocin’ use before and/or during pregnancy and its relationship to ‘autism features’ in children. Multiple education and healthcare providers who serve children with, or at-risk for ASD have reported that maternal use of either prescribed or illicit pain medication for injuries, back pain, migraines, or other problems increase the odds that their children will present with ASD or Autism-like symptoms.
REFERENCES: UNIT 2 – Why Is It Autism? – CHAPTER 3 – DOCTORS & DIRECTION
Barron, J. (2011). There’s a Boy in Here: Emerging from the Bonds of Autism; eBook Edition.
Barton, M., Dumont-Mathieu, T., et al. (2012). Screening Screening Young Children for Autism Spectrum Disorders in Primary Practice; Journal of Autism & Developmental Disorders; V42: p1165-1174.
Case-Lo, C. (2015). What’s the Connection Between Autism & Inflammation?; Retrieved online from –healthline.com/
Colson, E., & Colson, C. (2010). Dancing With Max: A Mother and Son Who Broke Free; eBooks Edition.
Dutta, S. S. (2024). Maternal cannabis use disorder linked to higher autism risk in children, study finds. Psychiatry Research. Retrieved online from – www.news-medical.net
Ming, X., Hashim, A., et al. (2011). Access to specialty care in autism spectrum disorders: a pilot study of referral source; Health Services Research; V11:99, p1-6.
Rubensteirn, E., Young, J., et al. (2018). Brief Report: Maternal Opioid Prescription for Preconception through Pregnancy & the Odds of Autism Spectrum Disorder & Autism Features in Children; Journal of Autism & Developmental Disorders; V49:1, p376-382.
Siri, K. (2015). 1,001 Tips for the Parents of Autistic Boys; eBook Edition.
Staff Writer, Elemy (2021). What Drugs & Chemicals are Linked to Autism? Retrieved online from – https://elemy.wpengine.com/autism-causes/drugs-and-chemicals
Staff Writer Web MD (2015). What to do Next: How to Get a Specialist; Retrieved online from – www.webmd/
Starr, B. (2013). Relatedness: Understanding Genetics; Retrieved online from – https://genetics.thetech.org/
Stevens, C. & Stevens, N. (2011). A Real Boy: How Autism Shattered Our Lives & Made a Family from the Pieces; eBook Edition.
APPENDIX C – DEVELOPMENTAL SCREENING –
DEVELOPMENTAL SCREENING – What are the guidelines? Assignment for National University; Unit 4.2 (end of Lecture 4.2; 2013.)The standardized guidelines developed for the diagnosis of autism actually involve two levels of screening for autism. ‘Level one’ screening, which should be performed for all children coming to a physician for well-child check-ups during their first two years of life, should check for the following developmental deficits:
- no babbling, pointing, or gesturing by age 12 months
- no single words spoken by age 18 months
- no two-word spontaneous (non-echolalic, or not merely repeating the sounds of others) expressions by age 24 months
- loss of any language or social skills at any age
The ‘second level’ of screening should be performed if a child is identified in the first level of screening as developmentally delayed. The ‘second level’ of screening is a more in-depth diagnosis and evaluation that can differentiate autism from other developmental disorders. The ‘second level’ of screening may include more formal diagnostic procedures by clinicians skilled in diagnosing autism, including medical history, neurological evaluation, genetic testing, metabolic testing, electrophysiologic testing (i.e., CT scan, MRI, PET scan), psychological testing, among others.
Genetic testing involves an evaluation by a medical geneticist (a physician who has specialized training and certification in clinical genetics), particularly as there are several genetic syndromes which may cause autism, including Fragile-X, untreated phenylketonuria (PKU), neurofibromatosis, tuberous sclerosis, Rett syndrome, as well as a variety of chromosome abnormalities.
A geneticist can determine whether the autism is due to a genetic disorder, or has no known genetic cause. If a genetic disorder is diagnosed, there may be other health problems involved. The chance for autism to occur in a future pregnancy would depend on the syndrome found. For example, PKU is an autosomal recessive disorder with a reoccurrence risk of one in four, or 25 percent, chance, while tuberous sclerosis is an autosomal dominant disorder, with a reoccurrence risk of 50 percent.
Screening for ASDs is the first step of an ongoing process of
identification. It is especially critical for clinicians to understand
this when working with families from diverse backgrounds,
particularly when their primary language is not English or
when they have different views on child development since it
may require more persistent follow up in such circumstances to
keep families engaged.
Getting started:
■ Explain to the family that you routinely screen and
observe young children for healthy development.
■ Ask general questions about the child’s communication
skills and social interactions, but it is also important to
ask specific questions about how their child is doing by
using a screening tool.
■ It is equally important to ask questions about the
family’s understanding of and expectations for child
development. This could provide a wealth of information
and set the stage for mutual communication about child
development in general and the child’s development
specifically.
■ Remember that in some families, questions about a child’s
skills may go unanswered, since they may feel the questions are intrusive.
Some families may view screening as “looking for trouble”
or feel that things clinicians think are problems are not
an issue. Still for other families, their responses may shed
light on their ability, background or resources. Thus,
communicating slowly and clearly while listening carefully
and fully engaging families produces the best results
Approximately 1 in 54 children in the United States has an autism
spectrum disorder; according to the CDC (2020).
❑ The American Academy of Pediatrics (AAP)
recommends ongoing surveillance and ASD-specific
screening at 18 and 24 months or whenever there is
concern.
❑ Autism screening tools, such as the M-CHAT, are
more accurate when used in conjunction with clinical
judgment.
❑ Children with autism from minority backgrounds are
often diagnosed at a later age than other children
❑ The concepts of screening, early identification and
early intervention may be unfamiliar for families
from diverse backgrounds. For many families,
these concepts are culturally bound and they may
perceive that their children will be stigmatized in their
communities by participating in these practices.
DISCLAIMER (2024) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker;
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of any of this material indicates your acceptance of this disclaimer.
This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.