The Autism Mom’s Survival Guide (for Dad’s, too!): Creating a Balanced and Happy Life While Raising a Child with Autism by Susan Senator, eBook 2011 Edition; an Extended Review with < My Thoughts > by Sara Luker
(6% indicates location in the Kindle version of the book, instead of page numbers.)
Excerpts from this book…
6% No one has a perfect life! …autism was not all of what Nat was.
Autism parents must cope with the negative perceptions and stereotypes and seek ways to be happier and find that happiness with their children and on their own.
In Nat’s early days, my feelings were a chaotic mess. Often I felt ashamed of him because he was so different from the children around him.
In the early days, nothing in my life remained clear. Or when I did reach some understanding of Nat or autism, it would just as quickly disappear, because he would change again. I thought that this was unique to me, but with years of therapy and growing up, I finally understood that all parents feel that way.
10% Even though the autism community can be very supportive, a lifeline, it is just as true that the autism community can be its own worst enemy. I learned this again and again as an autism mother.
< My Thoughts > “The autism community can be very supportive, a lifeline, or its own worst enemy…”
Specifically about Parent Support Groups, this is what I found in the literature. I found that as Susan says, it can be helpful or not so much. Granted, while groups seem like a good idea to help new parents, or ‘first responders’, connect with other parents in order to access information and services; but it can also become a place of negativity.
Clifford & Minnes (2013), say that “many participants valued the experience as it made them feel as though they were not alone.” Authors also caution that, in order for it to be helpful, the success is based upon parents’ expectations and needs.
Some parents interviewed say that the group would have been more helpful to them if they had met people with similar experience; especially parents with older children or those with children higher up on the spectrum, like Asperger’s. They did concede that the group helped them towards feelings of greater acceptance, increased empowerment, and learning more about what was out there in the community.
This brings about the thought that one must do their homework just to find the best parent support group for them. Such as, a group of parents with similar needs and living in a similar setting. This article also mentions that online groups may be the answer for those who find it difficult to travel in person to a meeting location. Or, for those who want to share the experience with other people involved in the care of the child. Nothing is simple, right?
Bennett (2015) tells us when support groups are a ‘bad’ idea. It’s not the ‘idea’ which is bad, but the group which does not have a leader, or the leader in not “creating an atmosphere where it’s safe to unload and vent and talk about what doesn’t feel good.”
She reminds us that the purpose of a support group is to help “get you through a rough spot in your life so you can the graduate from the group.” And that all “participants should take responsibility for moving forward and making their lives better.” Sage advice.
10% …it is within our power to reduce a lot of the suffering we experience. We can do this by remembering to take care of ourselves, by figuring out how to have more fun with our kids, by nurturing our marriages, and most important, by shifting our attitudes about autism.
< My Thoughts > Please refer to her book for more of this valuable list of ideas and resources on the subject “… how to get started shifting your attitude.”
12% Autism care is done largely by feel, by trial-and-error more than anything else. In autism treatment, it seems like the New Age meets the Dark Ages.
(6% indicates location in the Kindle version of the book, instead of page numbers.)
Excerpts from this book…
6% No one has a perfect life! …autism was not all of what Nat was.
Autism parents must cope with the negative perceptions and stereotypes and seek ways to be happier and find that happiness with their children and on their own.
In Nat’s early days, my feelings were a chaotic mess. Often I felt ashamed of him because he was so different from the children around him.
In the early days, nothing in my life remained clear. Or when I did reach some understanding of Nat or autism, it would just as quickly disappear, because he would change again. I thought that this was unique to me, but with years of therapy and growing up, I finally understood that all parents feel that way.
10% Even though the autism community can be very supportive, a lifeline, it is just as true that the autism community can be its own worst enemy. I learned this again and again as an autism mother.
< My Thoughts > “The autism community can be very supportive, a lifeline, or its own worst enemy…”
Specifically about Parent Support Groups, this is what I found in the literature. I found that as Susan says, it can be helpful or not so much. Granted, while groups seem like a good idea to help new parents, or ‘first responders’, connect with other parents in order to access information and services; but it can also become a place of negativity.
Clifford & Minnes (2013), say that “many participants valued the experience as it made them feel as though they were not alone.” Authors also caution that, in order for it to be helpful, the success is based upon parents’ expectations and needs.
Some parents interviewed say that the group would have been more helpful to them if they had met people with similar experience; especially parents with older children or those with children higher up on the spectrum, like Asperger’s. They did concede that the group helped them towards feelings of greater acceptance, increased empowerment, and learning more about what was out there in the community.
This brings about the thought that one must do their homework just to find the best parent support group for them. Such as, a group of parents with similar needs and living in a similar setting. This article also mentions that online groups may be the answer for those who find it difficult to travel in person to a meeting location. Or, for those who want to share the experience with other people involved in the care of the child. Nothing is simple, right?
Bennett (2015) tells us when support groups are a ‘bad’ idea. It’s not the ‘idea’ which is bad, but the group which does not have a leader, or the leader in not “creating an atmosphere where it’s safe to unload and vent and talk about what doesn’t feel good.”
She reminds us that the purpose of a support group is to help “get you through a rough spot in your life so you can the graduate from the group.” And that all “participants should take responsibility for moving forward and making their lives better.” Sage advice.
10% …it is within our power to reduce a lot of the suffering we experience. We can do this by remembering to take care of ourselves, by figuring out how to have more fun with our kids, by nurturing our marriages, and most important, by shifting our attitudes about autism.
< My Thoughts > Please refer to her book for more of this valuable list of ideas and resources on the subject “… how to get started shifting your attitude.”
12% Autism care is done largely by feel, by trial-and-error more than anything else. In autism treatment, it seems like the New Age meets the Dark Ages.
< My Thoughts > “…by trial-and-error…”
I believe that autism is like a kaleidoscope of change. Just when you think you have your finger on the pulse of things… it changes. That’s why, in my opinion, programs and interventions are so unpredictable.
In the classroom (as well as at home) I try to follow the advice I received from one of my professors… which goes something like this –
“Know your child… give that child every opportunity to learn, based on what you know about him/her… change-up what isn’t working… or, come back to it later, but never, never give up.”
This works for children of all ages and in all stages of life. As the changes occur. It’s up to you to adjust to what you are seeing at that point and change accordingly. In all its glory… or not.
Life with autism is always on the move… sometimes two steps forward or three steps back. Keep your eye on the goal and celebrate the little achievements. Smiles.
12% Ned and I were desperate to do something, so we focused on getting Nat into a beneficial school program, guided only by our doctor’s very general, sphinx-like words: “No one can tell you which approach to choose, but you’ll know when a program is working for him.”
< My Thoughts > Oh gads!!! Is he saying that you might as well flip a coin?
13% We moved Nat from school to school in a perpetual panic to get things exactly right for him, not knowing that this was possibly an unattainable goal. We thought of little else, even though we had two other children in our family. We eventually chose a private school that used behavioral techniques.
Although its repetitious drilling and positive reinforcement with candy, tickles, and praise were at odds with our own free-and-easy parenting style, the caring and intensely animated teachers made the program very attractive. The school also trained me in the use of reward systems. M & M’s when Nat used the toilet or played pretend for a given length of time.
< My Thoughts > “…behavioral techniques.”
I admit that I get very excited when changes in behavioral techniques appear on the horizon. The unfortunate thing is that we don’t always hear about them because they are so new… somewhat yet unproven… or, because they have to push their way to forefront of the established group. Ugh!
Schreibman, et al. (2015), tell us that “…early applications of Naturalistic Developmental Behavioral Interventions (NDBI) found that generalization improved substantially as a result of teaching in the context of naturally occurring activities.” In other words, children with autism learned more rapidly when there was a natural reward rather than an arbitrary one (Remember… our kids are ‘concrete thinkers’).
NDBI behavior reward for example, when like this. The child is shown a car and asked to say “car”; then upon saying “car”, receives the requested car, instead of a potato chip… or, other ‘preferred food’ reward (which is used in other more traditional methods, such as Applied Behavior Analysis (ABA).
Why does this work faster with children with autism, because our kids are ‘concrete’ thinkers. Wouldn’t you question why someone gave you a potato chip after saying the word car? Hmmm?
A word about ‘concrete thinkers’… Concrete thinkers take your words literally. So, if I say ‘concrete thinking’ the concrete thinker sees in their mind… a block of concrete sitting there thinking. Okay, I’m taking this too far… but not really.
A young child tries to understand by visualizing what you are saying. If you try to explain why your voice is coming out garbled, you might say it’s because you have a ‘frog in your throat’. So if your child looks horrified… you know what they are visualizing. Smiles.
So, this is a naturalistic twist on the conditional learning approach. Sicile-Kira (2014) explains the traditional basis for Applied Behavioral Analysis (ABA) this way… “B. F. Skinner is the grandfather of ABA. Thanks to his study of “operant conditioning” he developed the theory that all behaviors are learned. What happens before and after the behavior occurs, shapes our actions and explains whether or not those actions are repeated.
The original ‘Will work for food'... idea. Smiles. Also, ABA is known as the Lovvas method.
Parents can readily implement these strategies in their home at mealtime and bath time, as well as in outdoor activities, such as going to the park. This method, of using things found in the child’s environment, is less costly for… and was shown to work better with… children who were ‘poor responders’, or who failed to learn how to ‘imitate’ tasks, in other programs.
The authors say that “this ‘family friendly’ approach tended to increase the quantity and quality of early learning experiences for the child, by reinforcing ‘naturally’ desired behavior.
13% Within a few months, we could see that this strategy was working in terms of gently leading him into a more diverse skill set, especially in the school environment.
However, we were still dealing with Nat’s passivity in most activities. Sometimes he would still seem so lost, smiling or laughing charmingly to himself but never letting us in on the joke.
< My Thoughts > “…dealing with Nat’s passivity…”
A very important one, but sort of an strange one. I wanted to share with you, that there have been times when this kind of ‘passivity’ was erroneously considered to be the hallmark of a successful intervention.
But no, not really! What has really happened, is that the child has left us… you know, like Elvis has left the building. Teachers however inadvertently, see a sign of success. “Wow… s/he isn’t tantrumming.” “S/he even seems to like what we are doing.” “See, s/he’s smiling!” Nope! S/he’s gone ‘some other place’. She’s gone passive. Smiles.
13% We heard of a doctor who was having some success treating his autistic patients’ social difficulties with a class of antidepressants known a SSRIs.….
< My Thoughts > “ … (starting) a class of antidepressants…”
First, SSRIs are selective serotonin re-uptake inhibitors or serotonin-specific reuptake inhibitors are a class of drugs that are typically used as antidepressants in the treatment of major depressive disorder and anxiety disorders. They are one of the commonly prescribed drugs for treating depression. SSRIs affect the chemicals that nerves in the brain use to send messages to one another; according to www.medicinenet.com.
Well, to my mind, this is another ‘slippery slope’. How do you know what will work? Do you have any idea how expensive these drugs are? (Try for samples from the doctor first… at least for the trial period to see if they have the effect you want. I say this because the insurance companies won’t approve some drugs without a fight!)
Then, there is finding the therapeutic dose (which could require a larger dose, or a more frequent dose for your child than the typical child). And… the side effects it causes, which may undo any good achieved. Then… when do you increase the current dosage, or do you introduce another med to enhance what you have already?
Don’t get me wrong. I firmly believe in ‘better living through chemistry’. Sonny has a potpourri of drugs, morning and night (some with food… some without). Seriously, if he misses a dose he goes immediately into a seizure… for which we have another drug… this one is given rectally. Round and round we go! Smiles.
13% We thought this might give Nat that extra boost. And indeed, after using Zoloft for about a year, Nat’s language ability developed exponentially. By the time he was ten, he was occasionally expressing his desires and telling jokes. We were beside ourselves with joy.
We acted swiftly, moving him from his small classroom to a more academically challenging, mainstream type of classroom (with typically developing students and a regular curriculum).
We thought that all we had to do was help him continue on this new trajectory, set into motion by the Zoloft.
13% We did not realize until it was too late that sometimes you don’t get more by doing more.
14% In retrospect, Ned and I were guilty of the same mistake made by so many autism parents: pushing too hard, stretching our kid and everyone around him to the point of distortion.
24% Perhaps finding a balance between chasing therapies, on the one hand, and accepting and simply enjoying one’s child, and one’s life, on the other, eventually allows parents to slow down the frenzied search and alleviate some of these depressive symptoms.
< My Thoughts > “…finding a balance between chasing therapies.”
Cascio (2015), writes a paper which addresses how Italian professionals view behavioral interventions; both in Italy and in the U.S. He claims that the ‘rigidity’ appears the in interventions, also with the professionals who treat them. This profound statement includes views of both countries and lists “behavioral therapy models as… dietary, biomedical and neurodiverse.”
He believes that part of the problem lies in the fact that persons with autism include “six classifications:Autistic Disorder, Rett’s Syndrome, Other Childhood Disintegrative Disorders, Asperger’s Syndrome, Other Pervasive Developmental Disorders, and Pervasive Developmental Disorders, Unspecified.” He states that in addition to this, “The cause of autism has been and still is much researched and discussed, but no consensus exists.” In other words, ‘one-size’ therapy does not fit all.
Added to this, he thinks that the profession of psychiatry, by definition, must transition patients at age 18 from a childhood diagnosis to an adulthood diagnosis and treatment. This means transition them regardless of the mental age of the patient, some of whom may remain forever in the ‘infantile’ range. Therefore, this could become part of the ‘rigidity’ the author talks about if the profession requires a hand-over at age 18.
However, perhaps ‘fresh eyes’ and recent knowledge of the latest effective medications for adults could bring much needed relief for many 18 year-olds with autism. Just a thought!
< My Thoughts > “…the latest effective medications…”
I thought it was important here to say this about that… I found a recent journal article written by Vorstman, et al. (2014) which informs us that the scientific community is working hard to investigate the intriguing underlying genetic causes of autism. They say that the ‘etiology’, or cause, set of causes, or manner of causation of autism is yet unknown. What they do know is that autism is caused by “abnormal neurodevelopmental and neurobiological mechanisms.”
Geneticists are trying to locate the “genes associated with autism.” Then they will determine if “that specific genetic target is ‘druggable’, a challenge within itself.” The authors go on to caution that chances are “no single drug can conceivably be beneficial to all autism patients.” That while it is important to develop suitable pharmaceuticals to eliviate core symptoms of autism, it is equally as important to insure the safety of these compounds and their potential severe side effects.
24% Dr. O’Brien’s research found that the group of moms who tended not to get depressed had “a tendency to focus on how the child is doing day-to-day; they get pleasure out of what’s happening now instead of what the child might have been… they are dealing with both the positive and the negative”… at the same time.
26% Progress toward peace of mind may have more to do with a parent’s ability to let go of the need to change his or her child. As one preschool teacher wisely said, “You need to let your child develop his struggle muscle.”
< My Thoughts > “…let your child develop his struggle muscle” gets a ‘like’ from me, as a teacher! But as Sonny’s mom, I also know that ‘struggle’ leads to ‘frustration’ and ‘frustration’ often leads to a ‘tantrum’ or to depression. Then, out in the community you have to pick your battles If developing Sonny’s ‘struggle muscle’ means making him wait in line for something he already has in his hand, or waiting at a strange table for food he may or may not want… then, I may think twice about developing his ‘struggle muscle’. Smiles.
7% There is nothing I want more than to relieve those early days… and enjoying Nat just as he was. I wish that I had known enough to get him into Early Intervention, to start him in some kind of hard-core intensive preschool to boost his development and skills.
I wish I could have been whole enough to embrace every Nat-ism, to be proud of his differences, and to accept his unique, atypical development and way of doing things. I think a lot of autism parents come to feel that way.
< My Thoughts > “…a lot of autism parents come to feel that way.”
In this study, Chambres, et al. (2008), found that “parents report that their children with autism are often judged as undisciplined and rude.”
“As a general rule, people with autism, especially children with autism, have a ‘‘normal’’ physical appearance. By contrast, their social behaviors fail to conform to social norms.”
“Their social difficulties show up in many everyday situations.”
“Onlookers in situations like these may point indignantly at what they consider to be blatant manifestations of bad manners.” Oh, and don’t forget ‘bad parenting’… Smiles.
“The child they studied had none of the problematic behaviors that were typically autistic, such as rocking or hand flapping.”
“Therefore, one can assume that children with autism are misjudged because they are mistaken for typically developing children.”
Because those outsider “judgments were based on the standard of a person with a disability, which involves limited capacities.” Or, the child shows recognizable signs such the child with Down syndrome or cerebral palsy.
Chambres, et al. felt that their study raised the question as to “…how would one proceed in telling typically developing children about a classmate having autism, or about being on campus, or in class with them?” And also, “…how would one tell observers of a child with autism having a ‘supermarket meltdown’, about what is happening. Do you really want to put a sign on your child that says… “I have autism”?
7% In the focus of her study of autism mothers, Dr. O’Brien studied close to seventy families and found a high incidence of depressive symptoms among the mothers, a condition she attributed to the phenomenon of “ambiguous loss,” whereby a parent, mothers in particular, feel a massive, shapeless grief about their child’s disorder.
She states that it is more than depression as a phase of the grieving process… because the child has not passed away. “You still have a child,” she says. The depression is because “he or she is not the child you thought or hoped you had.”
8% The strongest recommendation that came out of Dr. O’Brien’s study was her advice to mothers “to take care of themselves… rather than waiting for something to change in their children.”
If your earliest experience with autism is not very negative, you may be able to have a more optimistic, accepting view of your child… and yourself… from the beginning.
…some parents actually feel liberated and positive right away, just knowing what it is that they are dealing with…
9% When we have a name for something that has confused and troubled us, we feel powerful, in control. Labeling can also help you face something – but it may be that you are facing it from a position of complete ignorance.
Finding out who Nat is and knowing what to do for him – have been a lifelong mission… just like dealing with who I really am and what to do for me. I think we have to not only parent our children… but parent ourselves.
< My Thoughts > “Finding out ‘who’ Nat is and knowing what to do for him…”
Garnett, et al. (2013), write about a new profiling tool. A new questionaire which helps parents more clearly identify their child’s autism symptoms. The attempt for this new profiling is to better “insure that ‘intervention’ is uniquely designed for the individual on the basis of the profile based on 5 sub-scales.”
This new profile still covers the Psychiatric DSM5 manual of autism domains of five sub-sets –
While the questionnaire format is still used for parental responses, it better clarifies the parental point-of-view by asking more pointed questions. Here is what the Garnett article reveals about the new questions asked –
1. Understanding & expressing emotions: Does the child read the signs of boredom, embarrassment, sadness/happiness in others?
2. Fact orientation: Is the child very interested in facts, data, and cataloguing information?
3. Sensory sensitivity: Does the child show distress in the environment; with lights, sounds, temperature, or other factors?
4. Social communication: Does the child say what he thinks; ask embarrassing questions, make-up his own rules and expect everyone else to obey them?
5. Rigidity: Do minor changes cause extreme distress? Must the child be forewarned of any changes in routine or setting?
One thing that Sonny exhibits stress with is when we take a different route to a well-known destination. Or, if our route takes us past a store or building that he loves/hates to go into. Screaming… head-banging on the window… pulling and tearing at everything within reach.
Yep, we usually pull over and try to figure out what to do next. Just stopping the car and putting the jazz station on the radio seems to help. Smiles.
2% Having a child on the autism spectrum can bring many hardships, no question. But in terms of the parenting experience, how much of the struggle – how much of the grief, depression, and despair is due to our children’s actual impairments, and how much is due to our own level of misinformation and confusion… and the lack of actual support… our perspective on this disorder makes all the difference.
< My Thoughts > “…how much is due to our own level of misinformation and confusion?”
How much is due to our perspective as parents. This is huge, I think, because according to an article by Jane Johnson, managing editor of Autism Research Institute (2013), “parents are stretched beyond their limits.” She quotes another author Fingerman (2011) who says, “Parents are only as happy as their unhappiest child.”
She goes on to say that the three most stressful factors are –
She says that, “Subjective parental pain and consequent stress went unobserved.”
Parents report that it’s not just that autism is ‘aggravating’, but the stress accumulation builds because, “My child rarely does things for me that make me feel good.”
< My Thoughts > “Progress toward peace of mind…”
In her book, Susan tells how different parents found their “peace of mind.”
NancyBea focuses on fine-tuning Henry’s medication and his education program, along with the use of visuals and highly organized schedule.
Kim says her kids love amusement parks and carousels… they love to spin. …we never let autism trap us in our home.
For Cathy, an ‘aupair’ solution was a godsend. Of course, not everyone can afford that… but, perhaps you can find a local college student, guy or gal, to board with you. (Maybe even someone who is studying child behavior or in a teacher education program.)
For some it’s belly dancing, for others is continuing with hobbies they love (painting, cartooning, & doodling). There are those who write poetry, join competitions and escape for awhile.
Rebecca and Beth enjoy scrapbooking… alone, creating, recharging. Then later sharing with the family who love to see what they’ve done with their pictures.
Alastair has built a nursery with a huge collection of bonsai trees. His wife gave up smoking and began running marathons.
Bonnie is “so into having and caring for Beta fish that my family has threatened intervention…”
Eileen discovered motorcycling as her way of coping and creating balance. “It is so much fun to play dress up… put on my leathers and my biggest earrings and go for a ride along the ocean…”
Susan reminded me that spiritual grounding can be an important aspect of self-care. “I go to yoga class and to Zen meditation…”
Amy feels like she’s accomplished something when she feels sweat pouring down my face… I have burned four hundred calories with exhausting exercise. Revitalized by a hot shower and renewed spirit.
55% The sun will come up tomorrow and we will still have autism within our family. I can choose how I live it.
81% We do not have to trade ourselves for our children, or our happiness for our children’s happiness. Even something as confounding and difficult as autism in the family is not the end of a happy life. Once we understand that, we will get there and it will all be OK.
82% One day you will feel that something inside you has shifted, lightened. When you look at your child, you no longer see a mass of problems, a broken thing to be fixed; you see you kid, just your kid.
One day you will know that it’s just your life, warts, autism, and all. And you can’t wait to start living it to its fullest. Once you know this…you have just won the game.
End of excerpts from this book.
===============
REFERENCES used in < My Thoughts > are:
Bennett, S. (2015). Mommy Mental Health; https://www.psychologytoday.com/.../when-support-groups-are-bad-idea
Cascio, M. A. (2015). Rigid Therapies, Rigis Minds: Italian Professionals’ Perspectives on Autism Interventions; Culture Medicine & Psychiatry; 39:235-253.
Chambres, P., Auxiette, A., Vansingle, C., Gil, S. (2008). Adult Attitudes Toward Behaviors of a Six-year-old Boy with Autism; Journal of Autism Developmental Disorders; 38:1320-1327.
Clifford, T. & Minnes, P. (2013). Logging On: Evaluating an Online Support Group for Parents of Children with Autism Spectrum Disorders; Journal of Autism Developmental Disorders; 43:1662-1675.
Garnett, M., Attwood, T. Peterson, C., Kelley, A. (2013). Autism Spectrum Conditions Among Children and Adolescents: A New Profiling Tool; Australian Journal of Psychology; 65:206-213.
O’Brien, Marion (2007). Ambiguous Loss in Families of Children with Autism Spectrum Disorders. Family Relations; Vol. 56 Issue 2, p135-146.
Schreibman, L., Dawson, G., Stahmen, A., Landa, R., Rogers, S., McGee, G., et al. (2015). Naturalistic Developmental Behavioral Interventions; Journal of Autism Developmental Disorders; 45:2411-2428.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Vorstman, J., Spooren, W., Persico, A., Collier, D. Aigner, S., Jagasia, R., Glennon, J., Buitelaar, J. (2014). Using Genetic Findings in Autism for the Development of New Pharmaceutical Compounds; Psychopharmacology, Vol 231: Issur 6, p. 1063-1078.
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Here is an additional LINK to Susan's latest book ~ Autism Adulthood...
I believe that autism is like a kaleidoscope of change. Just when you think you have your finger on the pulse of things… it changes. That’s why, in my opinion, programs and interventions are so unpredictable.
In the classroom (as well as at home) I try to follow the advice I received from one of my professors… which goes something like this –
“Know your child… give that child every opportunity to learn, based on what you know about him/her… change-up what isn’t working… or, come back to it later, but never, never give up.”
This works for children of all ages and in all stages of life. As the changes occur. It’s up to you to adjust to what you are seeing at that point and change accordingly. In all its glory… or not.
Life with autism is always on the move… sometimes two steps forward or three steps back. Keep your eye on the goal and celebrate the little achievements. Smiles.
12% Ned and I were desperate to do something, so we focused on getting Nat into a beneficial school program, guided only by our doctor’s very general, sphinx-like words: “No one can tell you which approach to choose, but you’ll know when a program is working for him.”
< My Thoughts > Oh gads!!! Is he saying that you might as well flip a coin?
13% We moved Nat from school to school in a perpetual panic to get things exactly right for him, not knowing that this was possibly an unattainable goal. We thought of little else, even though we had two other children in our family. We eventually chose a private school that used behavioral techniques.
Although its repetitious drilling and positive reinforcement with candy, tickles, and praise were at odds with our own free-and-easy parenting style, the caring and intensely animated teachers made the program very attractive. The school also trained me in the use of reward systems. M & M’s when Nat used the toilet or played pretend for a given length of time.
< My Thoughts > “…behavioral techniques.”
I admit that I get very excited when changes in behavioral techniques appear on the horizon. The unfortunate thing is that we don’t always hear about them because they are so new… somewhat yet unproven… or, because they have to push their way to forefront of the established group. Ugh!
Schreibman, et al. (2015), tell us that “…early applications of Naturalistic Developmental Behavioral Interventions (NDBI) found that generalization improved substantially as a result of teaching in the context of naturally occurring activities.” In other words, children with autism learned more rapidly when there was a natural reward rather than an arbitrary one (Remember… our kids are ‘concrete thinkers’).
NDBI behavior reward for example, when like this. The child is shown a car and asked to say “car”; then upon saying “car”, receives the requested car, instead of a potato chip… or, other ‘preferred food’ reward (which is used in other more traditional methods, such as Applied Behavior Analysis (ABA).
Why does this work faster with children with autism, because our kids are ‘concrete’ thinkers. Wouldn’t you question why someone gave you a potato chip after saying the word car? Hmmm?
A word about ‘concrete thinkers’… Concrete thinkers take your words literally. So, if I say ‘concrete thinking’ the concrete thinker sees in their mind… a block of concrete sitting there thinking. Okay, I’m taking this too far… but not really.
A young child tries to understand by visualizing what you are saying. If you try to explain why your voice is coming out garbled, you might say it’s because you have a ‘frog in your throat’. So if your child looks horrified… you know what they are visualizing. Smiles.
So, this is a naturalistic twist on the conditional learning approach. Sicile-Kira (2014) explains the traditional basis for Applied Behavioral Analysis (ABA) this way… “B. F. Skinner is the grandfather of ABA. Thanks to his study of “operant conditioning” he developed the theory that all behaviors are learned. What happens before and after the behavior occurs, shapes our actions and explains whether or not those actions are repeated.
The original ‘Will work for food'... idea. Smiles. Also, ABA is known as the Lovvas method.
Parents can readily implement these strategies in their home at mealtime and bath time, as well as in outdoor activities, such as going to the park. This method, of using things found in the child’s environment, is less costly for… and was shown to work better with… children who were ‘poor responders’, or who failed to learn how to ‘imitate’ tasks, in other programs.
The authors say that “this ‘family friendly’ approach tended to increase the quantity and quality of early learning experiences for the child, by reinforcing ‘naturally’ desired behavior.
13% Within a few months, we could see that this strategy was working in terms of gently leading him into a more diverse skill set, especially in the school environment.
However, we were still dealing with Nat’s passivity in most activities. Sometimes he would still seem so lost, smiling or laughing charmingly to himself but never letting us in on the joke.
< My Thoughts > “…dealing with Nat’s passivity…”
A very important one, but sort of an strange one. I wanted to share with you, that there have been times when this kind of ‘passivity’ was erroneously considered to be the hallmark of a successful intervention.
But no, not really! What has really happened, is that the child has left us… you know, like Elvis has left the building. Teachers however inadvertently, see a sign of success. “Wow… s/he isn’t tantrumming.” “S/he even seems to like what we are doing.” “See, s/he’s smiling!” Nope! S/he’s gone ‘some other place’. She’s gone passive. Smiles.
13% We heard of a doctor who was having some success treating his autistic patients’ social difficulties with a class of antidepressants known a SSRIs.….
< My Thoughts > “ … (starting) a class of antidepressants…”
First, SSRIs are selective serotonin re-uptake inhibitors or serotonin-specific reuptake inhibitors are a class of drugs that are typically used as antidepressants in the treatment of major depressive disorder and anxiety disorders. They are one of the commonly prescribed drugs for treating depression. SSRIs affect the chemicals that nerves in the brain use to send messages to one another; according to www.medicinenet.com.
Well, to my mind, this is another ‘slippery slope’. How do you know what will work? Do you have any idea how expensive these drugs are? (Try for samples from the doctor first… at least for the trial period to see if they have the effect you want. I say this because the insurance companies won’t approve some drugs without a fight!)
Then, there is finding the therapeutic dose (which could require a larger dose, or a more frequent dose for your child than the typical child). And… the side effects it causes, which may undo any good achieved. Then… when do you increase the current dosage, or do you introduce another med to enhance what you have already?
Don’t get me wrong. I firmly believe in ‘better living through chemistry’. Sonny has a potpourri of drugs, morning and night (some with food… some without). Seriously, if he misses a dose he goes immediately into a seizure… for which we have another drug… this one is given rectally. Round and round we go! Smiles.
13% We thought this might give Nat that extra boost. And indeed, after using Zoloft for about a year, Nat’s language ability developed exponentially. By the time he was ten, he was occasionally expressing his desires and telling jokes. We were beside ourselves with joy.
We acted swiftly, moving him from his small classroom to a more academically challenging, mainstream type of classroom (with typically developing students and a regular curriculum).
We thought that all we had to do was help him continue on this new trajectory, set into motion by the Zoloft.
13% We did not realize until it was too late that sometimes you don’t get more by doing more.
14% In retrospect, Ned and I were guilty of the same mistake made by so many autism parents: pushing too hard, stretching our kid and everyone around him to the point of distortion.
24% Perhaps finding a balance between chasing therapies, on the one hand, and accepting and simply enjoying one’s child, and one’s life, on the other, eventually allows parents to slow down the frenzied search and alleviate some of these depressive symptoms.
< My Thoughts > “…finding a balance between chasing therapies.”
Cascio (2015), writes a paper which addresses how Italian professionals view behavioral interventions; both in Italy and in the U.S. He claims that the ‘rigidity’ appears the in interventions, also with the professionals who treat them. This profound statement includes views of both countries and lists “behavioral therapy models as… dietary, biomedical and neurodiverse.”
He believes that part of the problem lies in the fact that persons with autism include “six classifications:Autistic Disorder, Rett’s Syndrome, Other Childhood Disintegrative Disorders, Asperger’s Syndrome, Other Pervasive Developmental Disorders, and Pervasive Developmental Disorders, Unspecified.” He states that in addition to this, “The cause of autism has been and still is much researched and discussed, but no consensus exists.” In other words, ‘one-size’ therapy does not fit all.
Added to this, he thinks that the profession of psychiatry, by definition, must transition patients at age 18 from a childhood diagnosis to an adulthood diagnosis and treatment. This means transition them regardless of the mental age of the patient, some of whom may remain forever in the ‘infantile’ range. Therefore, this could become part of the ‘rigidity’ the author talks about if the profession requires a hand-over at age 18.
However, perhaps ‘fresh eyes’ and recent knowledge of the latest effective medications for adults could bring much needed relief for many 18 year-olds with autism. Just a thought!
< My Thoughts > “…the latest effective medications…”
I thought it was important here to say this about that… I found a recent journal article written by Vorstman, et al. (2014) which informs us that the scientific community is working hard to investigate the intriguing underlying genetic causes of autism. They say that the ‘etiology’, or cause, set of causes, or manner of causation of autism is yet unknown. What they do know is that autism is caused by “abnormal neurodevelopmental and neurobiological mechanisms.”
Geneticists are trying to locate the “genes associated with autism.” Then they will determine if “that specific genetic target is ‘druggable’, a challenge within itself.” The authors go on to caution that chances are “no single drug can conceivably be beneficial to all autism patients.” That while it is important to develop suitable pharmaceuticals to eliviate core symptoms of autism, it is equally as important to insure the safety of these compounds and their potential severe side effects.
24% Dr. O’Brien’s research found that the group of moms who tended not to get depressed had “a tendency to focus on how the child is doing day-to-day; they get pleasure out of what’s happening now instead of what the child might have been… they are dealing with both the positive and the negative”… at the same time.
26% Progress toward peace of mind may have more to do with a parent’s ability to let go of the need to change his or her child. As one preschool teacher wisely said, “You need to let your child develop his struggle muscle.”
< My Thoughts > “…let your child develop his struggle muscle” gets a ‘like’ from me, as a teacher! But as Sonny’s mom, I also know that ‘struggle’ leads to ‘frustration’ and ‘frustration’ often leads to a ‘tantrum’ or to depression. Then, out in the community you have to pick your battles If developing Sonny’s ‘struggle muscle’ means making him wait in line for something he already has in his hand, or waiting at a strange table for food he may or may not want… then, I may think twice about developing his ‘struggle muscle’. Smiles.
7% There is nothing I want more than to relieve those early days… and enjoying Nat just as he was. I wish that I had known enough to get him into Early Intervention, to start him in some kind of hard-core intensive preschool to boost his development and skills.
I wish I could have been whole enough to embrace every Nat-ism, to be proud of his differences, and to accept his unique, atypical development and way of doing things. I think a lot of autism parents come to feel that way.
< My Thoughts > “…a lot of autism parents come to feel that way.”
In this study, Chambres, et al. (2008), found that “parents report that their children with autism are often judged as undisciplined and rude.”
“As a general rule, people with autism, especially children with autism, have a ‘‘normal’’ physical appearance. By contrast, their social behaviors fail to conform to social norms.”
“Their social difficulties show up in many everyday situations.”
“Onlookers in situations like these may point indignantly at what they consider to be blatant manifestations of bad manners.” Oh, and don’t forget ‘bad parenting’… Smiles.
“The child they studied had none of the problematic behaviors that were typically autistic, such as rocking or hand flapping.”
“Therefore, one can assume that children with autism are misjudged because they are mistaken for typically developing children.”
Because those outsider “judgments were based on the standard of a person with a disability, which involves limited capacities.” Or, the child shows recognizable signs such the child with Down syndrome or cerebral palsy.
Chambres, et al. felt that their study raised the question as to “…how would one proceed in telling typically developing children about a classmate having autism, or about being on campus, or in class with them?” And also, “…how would one tell observers of a child with autism having a ‘supermarket meltdown’, about what is happening. Do you really want to put a sign on your child that says… “I have autism”?
7% In the focus of her study of autism mothers, Dr. O’Brien studied close to seventy families and found a high incidence of depressive symptoms among the mothers, a condition she attributed to the phenomenon of “ambiguous loss,” whereby a parent, mothers in particular, feel a massive, shapeless grief about their child’s disorder.
She states that it is more than depression as a phase of the grieving process… because the child has not passed away. “You still have a child,” she says. The depression is because “he or she is not the child you thought or hoped you had.”
8% The strongest recommendation that came out of Dr. O’Brien’s study was her advice to mothers “to take care of themselves… rather than waiting for something to change in their children.”
If your earliest experience with autism is not very negative, you may be able to have a more optimistic, accepting view of your child… and yourself… from the beginning.
…some parents actually feel liberated and positive right away, just knowing what it is that they are dealing with…
9% When we have a name for something that has confused and troubled us, we feel powerful, in control. Labeling can also help you face something – but it may be that you are facing it from a position of complete ignorance.
Finding out who Nat is and knowing what to do for him – have been a lifelong mission… just like dealing with who I really am and what to do for me. I think we have to not only parent our children… but parent ourselves.
< My Thoughts > “Finding out ‘who’ Nat is and knowing what to do for him…”
Garnett, et al. (2013), write about a new profiling tool. A new questionaire which helps parents more clearly identify their child’s autism symptoms. The attempt for this new profiling is to better “insure that ‘intervention’ is uniquely designed for the individual on the basis of the profile based on 5 sub-scales.”
This new profile still covers the Psychiatric DSM5 manual of autism domains of five sub-sets –
- Social/emotional reciprocity
- Non-verbal communication
- Developing/maintaining relationships
- Excessive/ritualistic/stereotypical/repetitive behaviors
- Unusual reactivity to sensory input
While the questionnaire format is still used for parental responses, it better clarifies the parental point-of-view by asking more pointed questions. Here is what the Garnett article reveals about the new questions asked –
1. Understanding & expressing emotions: Does the child read the signs of boredom, embarrassment, sadness/happiness in others?
2. Fact orientation: Is the child very interested in facts, data, and cataloguing information?
3. Sensory sensitivity: Does the child show distress in the environment; with lights, sounds, temperature, or other factors?
4. Social communication: Does the child say what he thinks; ask embarrassing questions, make-up his own rules and expect everyone else to obey them?
5. Rigidity: Do minor changes cause extreme distress? Must the child be forewarned of any changes in routine or setting?
One thing that Sonny exhibits stress with is when we take a different route to a well-known destination. Or, if our route takes us past a store or building that he loves/hates to go into. Screaming… head-banging on the window… pulling and tearing at everything within reach.
Yep, we usually pull over and try to figure out what to do next. Just stopping the car and putting the jazz station on the radio seems to help. Smiles.
2% Having a child on the autism spectrum can bring many hardships, no question. But in terms of the parenting experience, how much of the struggle – how much of the grief, depression, and despair is due to our children’s actual impairments, and how much is due to our own level of misinformation and confusion… and the lack of actual support… our perspective on this disorder makes all the difference.
< My Thoughts > “…how much is due to our own level of misinformation and confusion?”
How much is due to our perspective as parents. This is huge, I think, because according to an article by Jane Johnson, managing editor of Autism Research Institute (2013), “parents are stretched beyond their limits.” She quotes another author Fingerman (2011) who says, “Parents are only as happy as their unhappiest child.”
She goes on to say that the three most stressful factors are –
- Concern over the permanency of the condition
- Poor acceptance of autistic behaviors by society and often of other family members.
- The very low levels of social support received by parents.
She says that, “Subjective parental pain and consequent stress went unobserved.”
Parents report that it’s not just that autism is ‘aggravating’, but the stress accumulation builds because, “My child rarely does things for me that make me feel good.”
< My Thoughts > “Progress toward peace of mind…”
In her book, Susan tells how different parents found their “peace of mind.”
NancyBea focuses on fine-tuning Henry’s medication and his education program, along with the use of visuals and highly organized schedule.
Kim says her kids love amusement parks and carousels… they love to spin. …we never let autism trap us in our home.
For Cathy, an ‘aupair’ solution was a godsend. Of course, not everyone can afford that… but, perhaps you can find a local college student, guy or gal, to board with you. (Maybe even someone who is studying child behavior or in a teacher education program.)
For some it’s belly dancing, for others is continuing with hobbies they love (painting, cartooning, & doodling). There are those who write poetry, join competitions and escape for awhile.
Rebecca and Beth enjoy scrapbooking… alone, creating, recharging. Then later sharing with the family who love to see what they’ve done with their pictures.
Alastair has built a nursery with a huge collection of bonsai trees. His wife gave up smoking and began running marathons.
Bonnie is “so into having and caring for Beta fish that my family has threatened intervention…”
Eileen discovered motorcycling as her way of coping and creating balance. “It is so much fun to play dress up… put on my leathers and my biggest earrings and go for a ride along the ocean…”
Susan reminded me that spiritual grounding can be an important aspect of self-care. “I go to yoga class and to Zen meditation…”
Amy feels like she’s accomplished something when she feels sweat pouring down my face… I have burned four hundred calories with exhausting exercise. Revitalized by a hot shower and renewed spirit.
55% The sun will come up tomorrow and we will still have autism within our family. I can choose how I live it.
81% We do not have to trade ourselves for our children, or our happiness for our children’s happiness. Even something as confounding and difficult as autism in the family is not the end of a happy life. Once we understand that, we will get there and it will all be OK.
82% One day you will feel that something inside you has shifted, lightened. When you look at your child, you no longer see a mass of problems, a broken thing to be fixed; you see you kid, just your kid.
One day you will know that it’s just your life, warts, autism, and all. And you can’t wait to start living it to its fullest. Once you know this…you have just won the game.
End of excerpts from this book.
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REFERENCES used in < My Thoughts > are:
Bennett, S. (2015). Mommy Mental Health; https://www.psychologytoday.com/.../when-support-groups-are-bad-idea
Cascio, M. A. (2015). Rigid Therapies, Rigis Minds: Italian Professionals’ Perspectives on Autism Interventions; Culture Medicine & Psychiatry; 39:235-253.
Chambres, P., Auxiette, A., Vansingle, C., Gil, S. (2008). Adult Attitudes Toward Behaviors of a Six-year-old Boy with Autism; Journal of Autism Developmental Disorders; 38:1320-1327.
Clifford, T. & Minnes, P. (2013). Logging On: Evaluating an Online Support Group for Parents of Children with Autism Spectrum Disorders; Journal of Autism Developmental Disorders; 43:1662-1675.
Garnett, M., Attwood, T. Peterson, C., Kelley, A. (2013). Autism Spectrum Conditions Among Children and Adolescents: A New Profiling Tool; Australian Journal of Psychology; 65:206-213.
O’Brien, Marion (2007). Ambiguous Loss in Families of Children with Autism Spectrum Disorders. Family Relations; Vol. 56 Issue 2, p135-146.
Schreibman, L., Dawson, G., Stahmen, A., Landa, R., Rogers, S., McGee, G., et al. (2015). Naturalistic Developmental Behavioral Interventions; Journal of Autism Developmental Disorders; 45:2411-2428.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Vorstman, J., Spooren, W., Persico, A., Collier, D. Aigner, S., Jagasia, R., Glennon, J., Buitelaar, J. (2014). Using Genetic Findings in Autism for the Development of New Pharmaceutical Compounds; Psychopharmacology, Vol 231: Issur 6, p. 1063-1078.
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Here is an additional LINK to Susan's latest book ~ Autism Adulthood...
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