Know Autism – Know Your Child: with < My Thoughts > by Sara Luker  2023
UNIT 2 – Why Is It Autism?
     UNIT 2 – INTRODUCTION
     UNIT 2 – CHAPTER 1 – Diagnosis & DSM-5 Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition; published in 2013 by the American Psychiatric Association (APA)
     UNIT 2 – CHAPTER 2 – Denial & Misdiagnosis
     UNIT 2 – CHAPTER 3 – Doctors & Direction Unit 1 – REFERENCES
 
     UNIT 2 – REFERENCES
     UNIT 2 – APPENDICES: 
              APPENDIX A SCREENING ASSESSMENTS
             APPENDIX B LATEST 2022 FINDINGS
​             APPENDIX C ​DEVELOPMENTAL SCREENINGS
 
PLEASE READ DISCLAIMER –

---

Unit 2 – Why Is It Autism? Diagnosis & DSM-5
 
INTRODUCTION – WHY IS IT AUTISM? Diagnosis & DSM-5
 
The resounding theme throughout this writing is to ‘know your child and know autism’. There are no blood tests to identify an Autism Spectrum Disorder (ASD) diagnosis. Instead, doctors must look at the patient’s developmental and biological history to begin choosing a path to diagnosis. There are many observational types of developmental screening tests used by professionals in the field. Professionals such as the Developmental Pediatrician, Child Neurologist, Child Psychologist, Speech / Language Pathologist, or qualified Occupational Therapist.
 
Clinicians are looking for unusual patterns in the individual’s communication, social interaction, interests and activities, as compared to a typically developing person. Autism identification is made when a qualified clinician makes a diagnosis which meets the standards as defined in the latest Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition, DSM-5 (2013). Candidly doctors have said, “With all of the individual differences and seemingly constantly changing patterns we see a child go through developmentally, we often have difficultly deciding how to move forward. And then, if we do decide that the individual may be on the Autism Spectrum, difficultly deciding what is the clinically appropriate next step.”
 
So much of the child’s diagnosis depends on parents and caregiver reporting. In mild cases of Autism, parents aren’t always aware that anything is truly wrong with their child, even when compared to their siblings. Autism awareness has helped the world understand the importance of parent reporting, early identification, and early intervention.
 
Physicians now have more training than in the past, but still most screening tests rely heavily upon parent and caregiver reporting. ‘Denial’ still continues to loom large everywhere. Then, there is always a chance for ‘no’ diagnosis or ‘misdiagnosis’, due to the worldwide lack of available clinically trained developmental specialists; plus ‘gaps’ in critical information from parents and providers.
 
The Centers for Disease Control & Prevention (CDC) declares that “developmental screening for autism can be done by a number of professionals in health care, community, and school settings.’ Suggesting that families, depending on the child’s age, start with the current healthcare provider or school professionals.
 
< My Thoughts >   “…depending on the child’s age.”
 
So much of the child’s diagnosis depends on the accuracy of parents and caregiver reporting. Autism ‘signs and symptoms’ fall on a spectrum, from mild to profound. As an individual’s age changes, as settings change, and as there are available interventions, the child’s ‘needs’ may change. One may move up or down the autism trajectory. So, consider ‘who’ the person is, their age (infant, toddler, young child, school-age child, adolescent, young adult, older adult) and their ‘needs’ at the time, before finding the appropriate professional to consult. Ask for corresponding ‘service’ referrals to qualified persons.    
 
Becerra-Culqui, et al. (2018) believe that specific developmental concerns can distinguish between an early versus a later diagnosis of ASD. In the United States, legislation is in place to address the needs of children with developmental delays before the age of 3 years; along with an early intervention program available under Part C of IDEA (the Individuals with Disabilities Education Act (IDEA) Part C, stating that the families are to receive services, regardless of their ability to pay). Early diagnosis can lead to the early intervention, essential for minimizing delays and optimizing development. Parents are more often able to identify nonverbal social communication delays leading to an ASD diagnosis, before the age of three; although speech and language delay is no longer listed as a necessary ‘primary feature’ in the 2013, DSM-5.

Consistently, parents were asked, “Who was the first person to mention the possibility of your young child having ASD?” Response was – “the first person was a parent, or other family member, and/or pediatrician.” As compared to children who were later diagnosed at 3-5 years, generally by the child’s pediatrician or classroom teacher.

Concerns with the timing of the diagnosis may determine a choice of starting with a ‘short-term’ intervention, as well as deciding what the family should do to support the child while they waited.

< My Thoughts >             “…while they waited…”

The impact of the symptoms on the child and the family may also be a deciding factor, as to the timing and the nature of the interventions considered; as well as the actions taken while they waited. A ‘short-term’ intervention may be needed immediately, especially if the child is at risk for hurting self, or others.

Hart (2011) exclaims – We brought Ewan home on a Saturday afternoon, and by Monday I was on the phone with the pediatrician’s office. I explained to the doctor that Ewan would stare up at me with those wide dark eyes for hours on end. He would stare at the ceiling fan, the blinds, the shadows on the wall, anything but the backs of his eyelids. The receptionist said, “Well, you must have eaten a lot of fish when you were pregnant with that little one.” “What?”  “You think the reason why he’s not sleeping is because he’s smart?”
 
The next few weeks were a bit of a blur, as it is for all new mothers and fathers. My husband was not in a position to take a few weeks off, so he was back to work already, and this mother was stuck at home with our sleepless wonder. My only comfort was consulting a pediatrician’s guide to raising infants and toddlers. 
 
Pouring over the book chapters again and again, there was nothing that came even remotely close to explaining or describing my son. So, I bought a second, and a third book. Nothing there either. The answers wouldn’t come from a book; I was truly on my own with this child.
 
< My Thoughts >             “…I was truly on my own with this child.”
 
For so long, parents and pediatricians both have had an almost impossible task of unraveling the mystery of each child’s autism. Then, when a staff member makes an unprofessional comment (you must have eaten a lot of fish when you were pregnant…), that just adds to the confusion.
 
Each child presents autism in an individual way. That is why some have compared autism to ‘snowflakes’, because as no two snowflakes are said to be alike, no two cases of autism are ever alike. Hopefully, with the many references in this book, you will find your ‘truth’, see your ‘trajectory’, and find a ‘visible path’ to take.
 
So many times, in the past, clinicians found children with autism have also had learning and digestive difficulties. But a child with learning disabilities and/or digestive difficulties may or may NOT have autism. The same holds true for believing that many other disorders also signal ‘autism’ – such as mental deficits, speech or hearing difficulties, weak immune systems, and so on. There are other conditions which may have ‘autism-like’ symptoms. Know your child. Know their autism.
 
Cettina (2017) “A label changed our life.” For some, the autism ‘label’ is a godsend. For others, it is stigmatizing and just one professional’s opinion – and sometimes even a probable misdiagnosis. Those in favor of ‘labeling’ point out that the best treatment starts early. The sooner that you pinpoint (label) your child’s needs, the faster you can find the necessary support or even medication. There is also relief in being able to ‘blame’ a medical diagnosis. There is relief in getting help.
 
Cademy (2013) confides that the subject of ‘labels’ is alluded to in many books and may have been overlooked by those new to Autism. Labels can be scary, but usually your child’s Asperger’s Syndrome (AS) label can be removed from records when appropriate, as they reach a certain age. Check the laws for your state on this, if you have ‘early labeling’ concerns.
 
​Merchent (2007) shares – I was afraid an ‘autism’ label would influence people’s expectations of my son and his behavior. Afraid that it would become a self-fulfilling prophecy.
 
At this point in time, I had taken Clay to anyone I thought might be able to help –

• Two pediatricians
• Osteopath
• Homeopath
• Ear, nose, and throat specialist (ENT)
• Allergist
• Naturopath
• Emotional healer
• Herbalist
• Speech therapist
• Occupational therapist
• Immune disorder specialist

The osteopath and herbalist were the only ones who seemed to be helping. All the others said they could help, but we didn’t see any results.
 
With the strict allergy diet, and removal of incoming aluminum, Clay’s head-banging and toe-walking had almost stopped, but he still wasn’t speaking. He was cranky, sickly, and not sleeping well.
 
< My Thoughts >             “…strict allergy diet, and removal of incoming aluminum…”
 
Allergy diets and removal of incoming aluminum are NOT considered to be ‘evidence-based’ interventions to symptoms of autism. They are considered to be Complementary & Alternative Medicine (CAMs).
 
Note: More about Complementary & Alternative Medicine (CAMs) in UNIT 7 chapters.
 
Park (2015) provides us with the latest information from scientists zeroing in on the best ways to diagnose autism. Genetic testing can be done which specifically looks at abnormalities in the chromosomes. This extensive genetic testing is called whole-exome sequencing. But scientist Scherer says that “…if we use only one technology, we could miss some important information.” Therefore, they choose to also use brain scans, and conventional behavioral evaluations, along with genetic testing,
 
Some believe that ‘behavioral’ evaluative testing can be the first step because working with genetic counselors to do genetic testing first, can be very expensive. The final necessary step is to obtain a more detailed evaluation. Children, more than ever are showing complex autism symptoms. Professionals feel that it will take as many factors as possible to accurately identify and begin the most appropriate and effective interventions.
 
< My Thoughts >             “…accurately identify and begin…”
 
Accurately identifying and beginning treatment as early as possible is the resounding mantra, in the world of autism. The problem is finding those qualified clinicians who have zeroed in on the best testing; then, having found interventions which have zeroed in on matching the child’s needs with the best treatments.
 
Or, finding qualified professionals using the ‘best practices’ and/or ‘evidence-based’ practices. This is a challenge within itself. Added to that, everything is extremely costly and if it is a relatively new field or procedure, insurance companies may not want to help families finance it. Getting an accurate diagnosis, though, is the critical first step towards finding your child’s future independence and wellbeing.
 
Note: More about Insurance and Resources in UNIT 6.
 
Farmer & Reupert (2013) quote a parent as saying, “I feel as if I now understand what it’s like in my son’s world. I now know what Autism is.” When parents have an explanation of their child’s behavior and possible thinking, they are better able to accept that picture of their child. It’s very important for parents to accept the possibilities and expectations for their children, because treatment and intervention depends greatly on parent reports and observation.
 
< My Thoughts >             “…that picture of their child.”
 
Parents may become convinced that special treatments and/or interventions will ‘cure’ the autism. But, to date there are NO cures, and there are NO specific ‘autism’ blood tests. Real 'data' may be found from assessments, much of which relies on ‘parent reporting’ information on questionnaires; parent responses which are open to interpretation by a technician.
 
To complicate things, the child’s developmental trajectory may take a zig-zagging course over time. Severe symptoms may even seem to abate or disappear periodically. This becomes especially difficult in separating these changes from the results of any therapies the child is engaged in. Sometimes therapy results overlap. And, sometimes it seems as if the ‘picture’ is just never really clear or complete. But, getting an accurate diagnosis is the critical first step towards finding your child’s future independence and wellbeing.
 
REFERENCES: UNIT 2; CHAPTER 1 ~ INTRODUCTION
 
Becerra-Culqui, T, Lynch, F., et al. (2018). Parental First Concerns & Timing of Autism Spectrum Disorder Diagnosis; Journal of Autism & Developmental Disorders; V48, p3367-3376.

Cademy, L. (2013). The Aspie Parent: the First Two Years, A Collection of Posts from the Aspie Parent Blog; eBook Edition.
 
Cettina, T. (2017). Special Needs Children: Should I Label My Kid?; Retrieved online from: http://www.parenting.com/article/special-needs-children on 6/26/17/
 
Farmer, J., & Reupert, A. (2013). Understanding Autism & Understanding My Child with Autism; Australian Journal of Rural Health; V21:1, p20-17.
 
Hart, A. (2011). Brains, Trains & Video Games: Living the Autism Life; eBook Edition.
 
Merchent, T. (2007). He’s Not Autistic, But: How We Pulled Our Son from the Mouth of the Abyss; eBook Edition.
 
Park, A. (2015). Researchers Zero In On The Best Way To Diagnose Autism; TIME USE, LLC; Retrieved online from – https://time.com/4017909/diagnosing-autism/

UNIT 2 – Why Is It Autism? – CHAPTER 1 – DIAGNOSIS & DSM-5
 
DIAGNOSIS & DSM-5
 
Autism Symptom Disorder (ASD) is defined in the Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition (DSM-5). The DSM-5, published in 2013 by the American Psychiatric Association (APA) is considered to be the principal authority used in the United States to specify the classification and classification codes of mental disorders.
 
Myers, et al. (2018) inform us that increases in the numbers of new ASD case identification is used in geographical areas, as needed for identifying and planning of educational, social, and medical services which are expected to be needed. They also evaluate trends over time, according to total special education and developmental services conducted.

< My Thoughts >             “…used in the United States to specify…”, “…educational, social, and medical services…”
 
In the United States, data from geographical areas is used to evaluate trends over time. Thus, identifying and planning for future educational, social, and medical services. Hopefully, if the data shows an increase in autism diagnoses, then new community healthcare providers and educational settings will be provided, allowing more services for those individuals with autism.
 
Such data may also influence that when a child is from a ‘marginalized’ area, they will likely be considered ‘disadvantaged’, and the reason for their developmental delay. This may or may not be factual, but it should be helpful if parents are aware of this possible mindset when receiving or questioning a diagnosis.
 
Retrieved online from Elsevier (2021), is a study which first appeared in Biological Psychiatry, by its authors Whittle, S. and Rakesh, D.  Studying the brain scans of over 7,000 children, ages 9 -10, found clear differences in brain regions. Magnetic Resonance Imagining (MRI) brain scans, identified the amount of or lack of ‘functional activity’, connecting one region of the brain to the other.

These identified brain differences were in children who were considered to be from disadvantaged areas. Neighborhoods with multiple risk factors, such as pollution, crime, and lower-quality schools and healthcare.

< My Thoughts >    “…disadvantaged areas.”

Also, these geographical areas lack both community gardens and after-school enrichment programs. There also seems to be little or no access to healthcare. And, no public transportation connecting more advantaged neighborhoods with necessary services, or grocery stores, well supplied with fresh produce.

DSM-5 Diagnostic Criteria – Retrieved online from – Interagency Autism Coordinating Committee; United States Department of Health & Human Services; aka IACC; include specifying in the diagnostic criteria –
​

• Autism Spectrum Disorder
• Social (Pragmatic) Communication Disorder
• Severity Levels for Autism Spectrum Disorder

 
Developmental milestones, for the above, and also including developmental ‘regression’ is considered important to diagnose, during or beyond the 18-month well-baby visit.
 
< My Thoughts >             “…including developmental ‘regression’…”
 
When considering developmental ‘regression’, beyond 18-months, the idea of whether its autism ‘onset’, sudden ‘regression’, or whether ‘signs’ of autism have always been there is the conundrum. You may never really know, but what is important is meeting the child’s immediate needs. Get them the help they are asking for; in the only way they know how.

Note: Valuable LINKs to IACC | Interagency Autism Coordinating Committee – https://iacc.hhs.gov and https://iacc.hhs.gov/about-iacc/subcommittees/resources/dsm5-diagnostic-cr iteria.shtml/

Ming, et al. (2011) advise that ASD is most often diagnosed between the ages of 2-3 years old; saying that the older child may NOT respond to obvious social cues, body language, or facial expressions. S/he may NOT smile when happy, or laugh at a joke. The child may speak in a flat, robotic kind of way.
 
Other subtle indicators of concern may be that the child dislikes change, or wants to eat the same food, repeatedly; or that they are having trouble in school. There are other neurological disorders that can affect children, like Rett syndrome, or other ‘genetic’ disorders, but they are rare. Present at birth, Rett syndrome is a neurological genetic disorder that causes severe muscle movement disability.
 
Note: More about Rett Syndrome in Unit 2, Chapter 2.
 
Dobbs (2017) decides that ‘regression’ could be described as ‘streetlights and tiny things’ – One challenge in spotting autism’s onset is what scientists call the ‘streetlight effect’. The human tendency to look for things where we can most easily see them (whatever’s visible beneath the proverbial lamppost) even though what we seek may lie elsewhere; off in the shadows, or even in the dark.
 
He shares that Sally Ozonoff (2015) has long held to be true that regression is a ‘subtype’ of autism. Studying autism, she recalls that accepting ‘regression’ meant accepting the ‘great divide’; believing that children abruptly lose their learned skills. But, in the decades since, she believes that those once clear ‘regression’ boundaries have seemed to have faded.
 
< My Thoughts >             “…clear ‘regression’ boundaries…”
 
Those once clear ‘regression’ boundaries may seemed to have faded. Especially when considering making a diagnosis of ‘regression’, the traditional boundary becomes even more ambiguous. Was the child always somewhere on the autism spectrum, but the differences just weren’t that visible? Or, is this a ‘late onset’ occurrence which now looks like ‘more’ than a developmental delay, but is a definite loss of skills – ‘regression’.
 
Hayes (2020) says that historically when a diagnosis is made, it is like ‘drawing a line in the sand’. While, the world of ‘autism’ takes place outside the traditional medical field, clinicians must find that space between the fields where ‘autism’ boundaries lie.
 
Often, the line between the ‘lay’ person’s and the ‘medical’ person’s real expertise is blurred. The reason they feel, is that the parents expect the clinicians will ‘know’ everything about autism; and the medical persons rely on the parents to share everything they ‘know’ about their child’s autism. Thus, the expectation is that a carefully defined line will be drawn and a clear ‘autism’ diagnosis will be made.
 
< My Thoughts >             “…‘like drawing a line in the sand’…”
 
Yale Child Study Center researcher, K. Chawarska 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 have been proficient in that skill for at least 3 months, prior to losing it. Video diaries of the child may aid in determining onset.
 
Piven (2015) – My take on ‘regression’ is that it’s a misnomer, that autism has always been there. Believing that you would have seen those ‘signs’ of autism early on, if you knew what to look for.
 
Brodie (2013) began suspecting regression when his son Scott stopped making eye contact and no longer responded to his name. At 25-months-old, he lost his ability to engage in imaginative play and lost the few words he once used. Now, Scott would spin himself or objects. Started wiggling his fingers in front of his eyes, watched the same one or two videos, forwarding and rewinding them over and over.
 
While Brignell, et al. (2015) explain autism’s different trajectories, such as –

• Early developmental delays with no loss of skills.
• Early delays, plus loss of skills.
• No early delays and no skill loss, but ‘plateauing’ showing no gains.
• ‘Regression’ with no delays before showing a clear loss of skills.

 
Some say that all children go through both delays and learning spurts. They call it the natural ‘over-pruning’ a child’s brain does to make room for new growth. Others think of autism emerging as a dynamic multifaceted version of brain development. 
 
Thomas, M. & Davis (2016) present a new hypothesis of the underlying cause of autistic spectrum disorders (ASD). This ‘over-pruning’ perspective explains the lack of exact timing in the manifestation of the disorder. Proposing that autism is a result of the ‘over-pruning’ of brain connectivity early in a child’s development. An overly-aggressive synaptic pruning as an ‘exaggerated phase’ of brain development, in infancy and early childhood. Thus, explaining how unaffected or mildly at-risk siblings may differ in their inheritance of autism genes.

Johnson (2014) says that discovering your child  has autism may come in the most subtle ways. It’s in the little things. When your two-year-old doesn’t look at you as you enter a room. When your three-year-old still isn’t speaking in intelligible, complete sentences. When everyone else’s children are playing together, and your daughter is under a tree, digging for who knows what. When a frustrated teenage swimming instructor says, “Lady, I think there’s something wrong with your kid.” That’s when you start to realize.

When Sophie was a baby and even a toddler, we would enter a restaurant and she would talk to everyone. I used to say she never met a stranger. She was the social butterfly I supposed that my child would be, at 12 months. Exactly what I thought she would be. 
 
And then something changed.
 
It was a gradual realization, too, as it often is.
 
At first, I made excuses, as I think most parents do.
 
Sophie chooses to ignore me because she is a little diva. She doesn’t want to play with the other kids because she is too sophisticated for them. She doesn’t speak in complete sentences because I always know what she wants, and I let her get away with pointing. She’s just a little different and that’s okay. If the pediatrician wasn’t losing any sleep over it, I wasn’t going to either.
 
Then, Sophie started pre-school. The differences in Sophie were apparent immediately to the staff, particularly the director. But, some of the things they said Sophie “couldn’t” or “wouldn’t” do at school, she was doing at home.
 
The teachers were very concerned and my concern was growing by the minute. And yet, still, I waited. I was pregnant with Ariel, Sophie’s little sister. I was working a lot. These are the excuses I used.
 
Much as you want to know what is going on with your baby, you also don’t want to know. And, if you don’t know if something is true or not, you can always hope that it isn’t. Finally, when Sophie was two-and-a-half, we decided to have her evaluated.
 
< My Thoughts >   “…you can always hope that it isn’t.
 
But if it is autism, then it’s time to choose a direction.
 
Ambersley (2013) – Our family has chosen the path of ‘autism light’, which enables and engages our son Aaron so that he can set goals, live his dreams, and exceed expectations at his pace and on his terms.
The psychologist who evaluated my son shared with me that with a lot of patients, he can immediately tell that, ‘the lights are out and nobody’s home’. That very profound statement that had me thinking, if the lights are out, what does it take to turn the lights on?
 
Autism is very unpredictable when looking ahead into the future. It is rather difficult to determine which of those autistic challenges and tendencies will stick with him for a lifetime and which, with help, will gradually disappear. Real change is possible and inevitable when corrective action is taken. I knew that finding a pediatrician was very important to building a history with treating Aaron. That allowed our son to have a great foundation to build on. The best gift we could ever provide to our son was ‘early intervention’.
 
< My Thoughts >             “…corrective action is taken.”
 
Often, finding a Developmental Pediatrician means first taking your child to the general practitioner that is on your insurance provider list. Next, convince that practitioner to refer you to a developmental specialist. Following the correct protocol is very important, unless you have a house to mortgage. And, be certain to take evidence with you. A simple video made on your phone, of your child acting in ways that don’t seem to have any explainable function; such as hurting themselves, or less dangerous, but ‘unpurposeful’ behavior. When the doctor finally sees the things which concern you, it can lead to an accurate diagnosis.
 
According to the Centers for Disease Control & Prevention (CDC), there should be concern, if by 18 months the child –
​

• Doesn’t point or show things to others
• Doesn’t walk
• Doesn’t know what familiar things are for
• Doesn’t copy others
• Doesn’t gain new words
• Doesn’t have at least 6 words
• Doesn’t mind when caregiver leaves or returns
• Doesn’t use skills s/he once had

The American Academy of Pediatrics (AAP) recommends that children be screened for autism between 18 and 24 months, or whenever a parent or provider is concerned. Retrieved online from – https://www.cdc.gov/ncbddd/actearly/milestones/milestones-18mo.html/
 
The AAP also recommends ongoing surveillance after an initial ASD-specific screening. Autism screening tools, such as the M-CHAT, are considered 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 marginalized cultural backgrounds. For many families, these concepts are culturally bound, leading to the perception that if their children participate they will be stigmatized in their communities.
 
Effectively serving school-age students with autism spectrum disorders (ASD) requires a professional who possesses specialized knowledge, skills, and understanding. When students with ASD are from culturally or linguistically diverse (CLD) families, the professionals assessing and providing services to the students need the additional dimension of how their cultural and linguistic differences may affect identification, assessment, and treatment strategies. Retrieved online from – National University Graduate Program Lecture Notes: Developmental Screening Assignment for Unit 4.2 (end of Lecture 4.2; 2013).

Wong & Heriot (2007) know that parents with whom they have encountered, when receiving an autism diagnosis, mostly maintain a hopeful outlook for their child’s future. This attitude enables them to more easily pursue treatment options, and to cope with the day-to-day challenges and the stress involved. Mothers especially, they say, hold a sense of reaching the child and accepting the diagnosis, at the same time. This study showed that even if parents’ optimism was unrealistic, they continued to hold an overall ‘hopeful’ view of the future for their child. 
 
< My Thoughts >             “…sense of reaching the child.”
​
Many, many fathers as well as mothers hold that same sense of commitment. The ‘sense of reaching their child’ no matter what it takes. Fathers have lost their jobs due to time-off. Some have changed their careers to obtain better family insurance. Still holding a sense of future ‘good’ news, in the face of receiving an autism diagnosis, Parents have made untold sacrifices for their child with autism.
​
Whiffen (2009) – “So Mrs. Whiffen,” she pauses and smiles, “I am happy to tell you that Clay does NOT currently meet the DSM-V diagnostic criteria for a diagnosis on the autism spectrum. He is well below the cutoff for autism on the ADI-R and ADOS tests.”
 
Dr. Gale begins, “Clay is a charming boy and I believe the test results accurately reflect his current levels of neurocognitive and neurobehavioral functioning.” She takes out her notebook, “On the neurocognitive analysis,” she continues, “his subscale scores and core domain score consistently ranged from average to above average.” I feel a rush of excitement.
 
“He does,” she continues, “demonstrate patterns of relative weakness across areas of social interaction, pragmatic language, interests, and behavior. However, none of Clay’s observed qualitative differences are significant enough to meet the criteria for a diagnosis of autism. It is my professional opinion that Clay could be considered a candidate for placement in a mainstream kindergarten classroom.”
 
We make the twisty canyon drive home with the windows down and the radio up. “We’re free!” I shout above the roar of the wind. “We’re free!”
 
“Clay, we kept fighting, buddy. We never gave up. We did it!”
 
< My Thoughts >             “We did it!”
 
Even children without developmental issues go through periods of plateauing, when they seem to take a break from growing and/or learning. Or, they unexpectedly begin accelerating in growth and learning. When this does happen, one would hope that both the parents and the educators would still keep a careful eye on that child’s patterns of strengths and relative weaknesses. And, that there will be routine and careful ‘follow-ups’ to all ‘interventions’ and developmental changes.
 
Note: More about previously mentioned ASD assessments, such as – M-Chat, ADI-R, & ADOS in Units 1 & 4.
 
Piven (2015) fears that several things may interfere with a child’s clear and accurate autism diagnosis. For instance, relying on the misinterpretation or subjectivity of parent reporting, and the possible misinterpretation of data results.
 
Healthline Staff Writer (2020) clarifies that a Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition (DSM-4) diagnosis of Pervasive Developmental Disorder-Not-Otherwise Specified (PDD-NOS) was given in the past if a person was determined to have some autism symptoms. But they did NOT meet the full diagnostic criteria for conditions such as autistic disorder and/or Asperger’s syndrome.
 
< My Thoughts >             “…did NOT meet the full diagnostic criteria…”
 
When a child, adolescent, or adult received a diagnosis based on the 1994 American Psychiatric Association (APA), DSM - 4th Edition, they may have to ‘requalify’ for a new diagnosis under the latest 2013 DSM - 5th Edition. This could affect many things, such as educational services and insurance eligibility qualifications.
 
Thrive Works Staff Writer (2019) states that the purpose of the DSM-5 revision of the DSM-4 was said to improve diagnostic efficacy, accuracy, and consistency when diagnosing mental disorders. A general overview of the diagnostic criteria for Autism Spectrum Disorder (ASD), per the DSM-5 is – Persistent (i.e., regular) deficits in social communication and social interaction across multiple contexts (criterion A).
 
This can include developmental problems with:
 
• Social-emotional reciprocity (e.g., back and forth conversation).
• Nonverbal communicative behaviors (e.g., abnormalities in eye contact and body language).
• Developing, maintaining, and understanding social (age-appropriate) relationships.
 
Autism spectrum disorder (ASD) criteria for diagnosis also requires that the person show –
 
• Restricted, repetitive patterns of behavior, interests, or activities such as stereotyped or repetitive motor movements.
• Ritualized patterns or inflexible adherence to routines.
• Highly restricted, fixated interests that are abnormal in their intensity or focus.
• And/or hyper/hypo reactivity to sensory input (Criterion B).
 
Other ASD criteria also include these symptoms –
 
• Must be present in the individual’s early developmental period.
• Must cause clinically significant impairment in social, occupational, or other important areas of current functioning.
• Are NOT better explained by intellectual disability (e.g., intellectual developmental disorder) or global developmental delay (Criterion C through E).
 
‘Severity specifiers’ are given for social communication impairments (Criterion A) and restricted repetitive patterns of behavior (Criterion B). Severity for both Criterion A and B are listed at three different levels:
 
• Level 1 – requiring support
• Level 2 – requiring substantial support
• Level 3 – requiring very substantial support
 
Note: The revision DSM-5 replaced the previous edition, the DSM-4 which now has the ‘severity level’ indicated, as well as for which impairment (e.g., social communication and/or repetitive patterns of behavior). For example, a ‘severity level’ of needs ‘intense’ support for deficits in social communication, but only designated as needing ‘moderate’ support for restrictive repetitive behaviors.
 
< My Thoughts >               “…revision DSM-5 replaced the previous edition, the DSM-4.”
 
This DSM-5 diagnostic ‘criteria’ replacement was accepted as a clarification of the previous version, DSM-4. This new interpretation created classification changes, and in some cases, resulted in disqualification of prior eligibilities. One of the reasons given was that conditions previously thought of as needing short-term intervention, medication and therapies, now reclassified, necessitating a more in-depth diagnostic look.
 
This can be very helpful when deciding upon the appropriate ‘intervention’, without overdoing ‘support’ in areas where it may be layered into a more or less substantial support.
​

(This child seems to be engaging in ’typically purposeless’ autistic behavior. Often,, they will also be prone on the floor, repeatedly spinning a toy.
 
Fedele (2018) feels that people who are prone to ‘restrictive repetitive’ behaviors (RRBs) have learned to cope through a wide range of behaviors; such as obsessions, ritual and insistence on sameness, and layers of other persistent manifestations.

In nursing, when I first began working with people with autism, people across the spectrum, I learned to recognize cues that they were having some sort of difficulty. They would retreat into Restrictive Repetitive Behaviors (RRBs), experiencing anxiety without the necessary therapeutic tools or training to solve the problem any other way.

Also, I learned to induce them to learn new tasks by first playing my ukulele. And, by taking a large chunk of the task, and breaking it into smaller pieces of the whole. Registered Nurses can take up the nursing challenge by learning to understand and work with the autism population. Saying that this sometimes takes years.

Barnes (2014) tells us – My name is Elizabeth and I am an Autism Mom. Our son, who we will call the Navigator, is nine and was diagnosed on the Autism Spectrum at the age of seven. Before his diagnosis, I had heard of Autism – non-verbal children who don’t like to be touched, who rocked, and who ritually lined things up. My son had none of these characteristics, so when he started having difficulties in pre-school interacting with other children, transitioning from one play area to the next, following instructions from teachers and staff, I didn’t initially think “neurological disorder.”
 
Then came a call from his first-grade teacher: “I am not a doctor or psychologist, but I spent 15 years in Special Education, and I think your son may have Asperger’s.” One of the American Psychiatric Association descriptions is that, “symptoms are not fully recognized until social demands exceed the child’s capacity.”
 
After testing by both the school and privately, he was diagnosed to be high-functioning on the Autism spectrum; Asperger’s. He receives special education services through the school.
 
Within a year after the diagnosis, I quit my full-time job to stay home and provide him structure and support. It was a relief to no longer feel like his behavioral issues were the result of bad parenting, or something we were doing wrong.
 
There is no one thing, or even series of things that work all the time, or are even discernible as a pattern. There is a need for constant analysis and creativity, which is exhausting and sometimes seemingly fruitless. Now when he melts down or perseverates I can (most of the time) calmly help him through it and not cry afterwards (most of the time).
 
< My Thoughts >               “…need for constant analysis and creativity…”
 
This Barnes excerpt says so much. It tells us so candidly how Elizabeth felt that she needed to change her identity from ‘everyday’ mom to ‘Autism’ mom.
 
Bent, et al. (2016) believe that access to specific autism intervention and funding services are largely dependent on an exact diagnosis of ASD. Changes to the DSM-5 diagnosis criteria may therefore have a substantial impact on access to, or continuation of services. They noted that data had been ‘de-identified’ (personal information identifying ‘study participants’, between 2010 and 2015, has been electronically removed) for the 32,100 children aged under 7 years utilized in this study.

Suggesting that the more stringent DSM-5 criteria may be responsible for the seemingly ‘downtrend’ in recent diagnoses. Another reason may be the recent inclusion of – sensory interests, sensitivity, aversions, and removal of language difficulties from the core DSM-5 criteria. In all regards, the authors remind us that program eligibility criteria require the diagnose to be confirmed, exactly. The DSM-5 criteria must be designated by a pediatrician, psychiatrist, or qualified multidisciplinary team which includes a psychologist and speech pathologist. They suggest that more cases may be identified as clinicians become familiar with the new protocol, thus resulting in longer waiting time for anxious parents. 
    
< My Thoughts >               “…more cases may be identified…”
 
As more cases are identified, there is a need for constant analysis, creativity, and patience as a parent of a child with autism. Also, as an experienced special education teacher with a heavily increasing caseload of students with autism, this is so true. Added to that – There is no one solution or even series of solutions, or educational programs which will work every time for every child. Parents working with teachers as well as the multidisciplinary team will succeed.
 
Kim, et al. (2018) disclose that fundamental questions regarding the classification of the disorder remain unresolved. Added to that are the meaningful differences between parent and teacher reports regarding the child’s behavior. The need for collecting more in-depth data.
 
They site Initial Parent and Teacher Reports which begin by using vague descriptive words or phrases, such as –
 
Acting peculiar …
Doesn’t do well…
Not interested…
Unaware of…
Inappropriate response to…
Acts or reacts strangely…
Upsets easily…
Strange fascination for…
Excessive preoccupation with…
 
< My Thoughts >             “…more in-depth data.”
 
In the new DSM-5, more ‘in-depth’ impairment criteria for autism classifies symptoms by also including such things as –

• Presence of symptoms in the child’s early developmental period.
• Significant impairment in important areas of functioning; social, occupational.
• NOT better explained by a specific intellectual disability.
• Has ‘severity specifiers’ as to the degrees of support each impairment requires; 1) Needs support 2) needs substantial support 3) needs very substantial support.​

Thus, a clarified diagnosis could include one impairment needing Level 1 support, where a more severe impairment would require a Level 2, or Level 3 support.
 
Thomas, R., et al. (2016) think that most developmental problems are readily evident at the 18-month ‘well-baby’ visit. But these authors say that family physicians or pediatricians do NOT always know if the problem they’re seeing is due to the child’s environment, possibly inadequate parenting skills, or clinical screening problems.
 
< My Thoughts >               “…developmental problems…”
 
Hopefully, developmental problems being seen by clinicians should be referred to a developmental specialist. Alarmingly, I have discovered that many generations of children have never experienced a scheduled ‘Well-Child’ visit by a pediatrician, but only are taken to see a doctor if they are sick. Sometimes this is due to the ‘insurance’ coverage, or lack thereof. Or, a multitude of resource, cultural, philosophical, and misinformation reasons.
 
According to the CDC, scheduling Well-Child visits with the child’s pediatrician at 18 months and 24 months should be considered essential. These visits determine how s/he is meeting developmental milestones. The following questions may be asked –

• Any behaviors that are unusual or repetitive?
• Does s/he have trouble with eye contact?
• Does s/he interact with people & share experiences?
• Does s/he respond when someone tries to get their attention?
• Is the tone of his/her voice ‘flat’?
• Does s/he understand other people’s actions?
• Is s/he ‘sensitive’ to light, noise, or temperature?
• Any problems with sleep or digestion?
• Does s/he tend to get annoyed or angry?

Parent and/or caregiver responses are very important in any child’s screening. If there are concerns, your doctor should be referring you to a developmental specialist. Without the primary doctor’s referral, insurance companies most certainly will refuse to pay for a specialist’s services.
 
Thrum, et al. (2007) a child is considered ‘non-verbal’ when they have passed the eighteen-month mark and have no language. Most children at this age would have “5 or more words used spontaneously on a daily basis.” There are also other given predictors of receptive language, such as a child responding to simple commands.
 
< My Thoughts >               “…predictors…”
 
As a classroom teacher, before spending time teaching/learning new skills, one must determine if the child will be successful at learning this skill. Within a predictable measure, you may be able to determine if the child has ‘receptive language’. Will the child have the cognitive ability which allows them to process what is being said, to devote the sustained effort to focus, concentrate, and/or develop new skills?
 
An example of this would be if the child responds to simple commands such as, “Sit down”, “Stand up”, “Come here”. One must be careful here NOT to assume that if the child doesn’t respond to “Please stop,” that it’s because they don’t know what you are saying or don’t have receptive language. As it happens, the autistic child is NOT likely to ‘stop’ stimming, or eating dirt, or participating in other sensory needs when asked to. Sometimes ‘signing’ ‘stop’ will help.
 
Conti-Ramsden, et al. (2012) contribute that when a general pattern of stable language growth is not maintained; along with the child being nonverbal, that is a ‘predictor’. Also, when there seems to be ‘poor’ engagement in the world, that should be considered.
 
If the only thing stable is that the child has NOT shown gains in the area of verbal or nonverbal skills, then it becomes urgent to investigate further. They suggest looking at levels of performance across all developmental domains, as compared with typically developing children, in the same age group.
 
With the clarification that nonverbal skills are the ability to have both ‘expressive’ and ‘receptive’ language. Nonverbal communication includes the use of appropriate body language, facial expressions, eye contact, and general friendly responsiveness. Also, it is important to understand that if the child starts out with delayed language, but begins to develop skills on a more normal trajectory, then there may need to be the consideration or investigation of possible ‘plateauing’ and/or declining of developing skills.
 
< My Thoughts >     “…’plateauing’ and/or declining of developing skills…”
 
For instance, when a child is working hard to develop new motor skills, such as walking, or becoming toilet trained, they may seem to become less aware of their communication skills. As previously mentioned, determining ‘exactly’ what is going on during a child’s developmental period, may be difficult.
 
When Sonny is trying to learn something new, he acts as if he doesn’t understand what you are saying to him. His ‘receptive language’ seems to be missing. But, of course it’s quite good. And, we know by now that his first reaction to ‘change’ is often a ‘negative’ one.
 
Then, when he wants something, instead of using ‘expressive language’, signing or using his device he tantrums or drags us to what he wants. We may say softly, “Use your words.” Or, we just play along, cueing him to his new skill as much as he will tolerate, then while he seems to be processing everything, we wait it out until he is ready. Once he learns his new skill, to the best of his ability, then its business as usual. Usually.
 
Cademy (2013) shares her collection of terms which she calls Alphabet Soup –
 
Aspie and AS – are both short for Asperger’s Syndrome, condition where the brain is wired differently than normal. In severe cases, this rewiring can cause autism, but most Aspies are able to be productive members of our modern world, if seen as a bit quirky…
 
NLD – stands for Non-verbal Learning Disorder. The main distinction is that people with NLD have problems decoding any and all non-verbal information, while Aspies can have excellent visual learning patterns. 
 
PDD/NOS –  is short for Pervasive Development Disorder. NOS – Not Otherwise Specified. In plain English, this means a person doesn’t have NLD, or Asperger’s, but definitely has something like them.
 
On the spectrum – a blanket term for anyone who has any autism spectrum condition, mild or severe or anything in between.
 
NT – neurotypical, the term used for people who are not on the spectrum.
 
Gifted, GT – lots of people with Asperger’s are smarter than average, either in a few areas or overall. The term Gifted refers to anyone of above average intelligence.
 
Twice Exceptional, 2E –  2E simply means a person is both Gifted and has some other issue, usually a learning difference such as AS (Autism Spectrum), ADHD (Attention Deficit Hyperactivity Disorder), or similar.
 
Cademy notes: NLD is not listed in the DSM-4 book. So some schools, which may have wonderful programs for Asperger’s, refuse to help kids with NLD.
 
< My Thoughts >                       “…NLD is not listed in the DSM-4 book…”
 
The latest Diagnostic and Statistical Manual of Mental Disorders (DSM-5) may consider NLD under “Other Neurodevelopmental Disorders”, as it now includes Asperger’s in the ASD spectrum, which would also qualify that student IF they were retested under the DSM-5..
 
REFERENCES: UNIT 2 – Why Is It Autism? –
CHAPTER 1 – DIAGNOSIS & DSM-5
 
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
 
Barnes, E. (2014). Building in Circles: The Best of Autism Mom; eBook edition.
 
Bent, C., Barbaro, J., et al. (2016). Change in Autism Diagnoses Prior to and Following the Introduction of DSM-5; Journal of Autism & Developmental Disorders; V47, p163-171.  
 
Brignell, A., Williams, K., et al. (2015). Regression in Autism Spectrum Disorder; Journal of Pediatrics & Child Health; V51:1, p61-64.
 
Brodie, P. (2013). Second Hand Autism; eBook Edition.
 
Cademy, L. (2013). The Aspie Parent: the First Two Years, A Collection of Posts from the Aspie Parent Blog; eBook Edition.
 
Conti-Ramsden, G., St.Clair, et al. (2012). Developmental Trajectories of Verbal & Nonverbal Skills in Individuals with a History of Specific Language Impairment: From Childhood to Adolescence; Journal of Speech, Language & Hearing Research; V55, p1716-1735.
 
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.
 
Dobbs, D. (2017). Rethinking regression in autism: The loss of abilities that besets some toddlers with autism is probably less sudden and more common than anyone thought; Retrieved online from – https://www.spectrumnews.org/features/deep-dive/rethinking-regression-autism/
 
Elsevier (2021). Childhood Disadvantage Affects Brain Connectivity; Retrieved online from Elsevier – https://neurosciencenews.com/

Fedele, R., (2018). Working Life: Tackling the Challenges of Autism; Nursing & Midwifery Journal; V25:8, p24-24.

Hayes, J. (2020). Drawing a Line in the Sand: Affect & Testimony Autism Assessment Teams in the UK; Sociology of Health & Illness; College of Medicine & Health, University of Exeter, Exeter, UK.
 
Healthline Staff Writer (2020). Autism: PDD-NOS; Retrieved online from – https://www.healthline.com/health/autism/pdd-nos/

Johnson, I. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
 
Kim, H., Keifer, C., et al. (2018). Structural Hierarchy of Autism Spectrum Disorder Symptoms: An Integrative Framework; Journal of Child Psychology & Psychiatry; V59:1, p30-38.
 
Ming, X., et al. (2011). Access to specialty care in autism spectrum disorders: a pilot study of referral source; Health Services Research; V11:99, p1-6.
 
Myers, S., et al. (2018). Autism Spectrum Disorder: Incidence and Time Trends Over Two Decades in a Population-Based Birth Cohort; Journal of Autism & Developmental Disorders; V49, p1455-1474.
 
Ozonoff, S., et al. (2015). Diagnostic Stability In Young Children At-risk For Autism Spectrum Disorder: A Baby Siblings Research Consortium Study; Journal of Child Psychology & Psychiatry; V56:9, p988-998.
 
Piven, J. (2015). On the Misapplication of the Broad Autism Phenotype Questionnaire in a Study of Autism; Journal of Autism Developmental Disorders; V44, p2077-2078.
 
Thomas, M. & Davis, R. (2016). The Over-Pruning Hypothesis of Autism; Developmental Science; V19:2, p284-305.

Thomas, R., et al. (2016). Rates of detection of developmental problems at the 18 month well-baby visit; CHILD: Care, Health, & Development, V42:3, p382-393.
 
Thrive Works Staff Writer (2019). DSM-5 Assessment Coding: Autism Spectrum Disorder; Retrieved online from – https://thriveworks.com/blog/dsm-5-assessment-coding-autism-spectrum-disorder/

Thrum, A., Lord, C., et al. (2007). Predictors of Language Acquisition in Preschool Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V37:9.
 
Whiffen, L. (2009). A Child’s Journey Out of Autism: One Family’s Story of Living in Hope and Finding a Cure; eBook Edition.
 
Wong, M., & Heriot, S. (2007). Vicarious Futurity in Autism & Childhood Dementia; Journal of Autism Developmental Disorders; V37, p1833-1841.

UNIT 2 – Why Is It Autism? – 
CHAPTER 2 – Why Is It Autism? – Denial & Misdiagnosis
REFERENCES: UNIT 2 – Why Is It Autism? – CHAPTER 2 – DENIAL & MISDIAGNOSIS
UNIT 2 – Why Is It Autism? – APPENDICES
                APPENDIX A – SCREENING ASSESSMENTS
                APPENDIX B – LATEST 2022 FINDINGS
                APPENDIX C – DEVELOPMENTAL SCREENING

CHAPTER 2 – DENIAL & MISDIAGNOSIS
 
DENIAL
 
Stagliano & McCarthy (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 (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, 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 (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 (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 (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 (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 (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, 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 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 (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 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 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 (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 (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 your child, know yourself, and know autism.

Pedersen, et al. (2017) tell us that often times Intellectual Disability (ID) and Autism Spectrum Disorder (ASD) seem to overlap, causing potential diagnostic confusion.
 
Cademy (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 (2010) calls children who are atypical, but not really autistic, ‘NLD’; Non-verbal Learning Disability. Continuing, Coplan 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) says 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 (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, 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 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 (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 (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 (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 (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 A – SCREENING ASSESSMENTS
 
Possible Autism SCREENING ASSESSMENTS which could be encountered –
 
Autism Diagnostic Interview-Revised
Autism Diagnostic Observation Schedule-2nd Edition
Bedrosian’s Discourse Skills Checklist
Bishop’s Child Communication Checklist
Bodfish Repetitive Behavior Scale‑Revised
Bricker and Squires Ages and Stages Questionnaire
Cohen’s Pervasive Developmental Disorders Behavior Inventory
Constantino’s Social Responsiveness Scale
Delis–Kaplan Executive Function System
Dunn’s Peabody Picture Vocabulary Test
Krug’s Autism Behavior Checklist
Medical/neurological evaluation is mandatory
Mullen Scales of Early Learning
Neuropsychological assessment
Praxis, Dunn’s sensory profile, and activities of daily living.
Rimland’s Autism Treatment Evaluation Checklist
Robin’s Modified Checklist for Autism in toddlers (18–36 Mon)
Rutter’s Social Communication Questionnaire (older than 4 years).
Schopler’s Childhood Autism Rating Scale
Sparrow’s Vineland Adaptive Behavior Scales
Wing’s Diagnostic Interview for Social and Communication Disorders
 
APPENDIX B – LATEST 2022 FINDINGS
 
Latest 2022 Findings on Autism, 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 (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 (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 (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 & Leboyer (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 (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 (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 (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 microbiotic 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: UNIT 2 – Why Is It Autism? –
CHAPTER 2 – DENIAL & MISDIAGNOSIS
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.

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. (2010). 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, et al. (2011) say 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 (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 (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 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 & Colson (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, et al. (2012) says 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); Next Step – What to do and what to say to the 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 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.
 
At that first 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.
 
< My Thoughts >              “Be prepared to elaborate…”
 
Unfortunately, once you do connect with a concerned and caring provider you may begin to feel that everything is ‘your’ fault. The line of questioning isn’t always sensitive. And, you may feel you are being ‘interrogated’. That the ‘burden of proof’ is on you.
 
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 includes studies of a woman’s pre and post childbirth; as you will read in the next excerpt from Case-Lo’s (2015).
 
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.
 
Case-Lo’s (2015) thoughts 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.
 
Rubenstein, et al. (2018) discuss 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.
 
Starr (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.
 
Note: APPENDIX B – Latest 2022 Findings on Autism, with < My Thoughts > by Sara Luker
 
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., et al. (2012). 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.
 
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 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.
 
UNIT 2 – Why Is It Autism? –

CHAPTER 3 – DOCTORS & DIRECTION

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 (2023) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2023
 
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.