Why We Chose Not to Diagnose Our Son With Autism Spectrum Disorder/Asperger’s Syndrome
Head’s up! This is a monster-sized article. It’s nearly 4,000 words long. So, if you’re not interested in the backstory, where I talk about the signs that led me to realize something was different about my son, you can click here to skip to the 5 Reasons We Didn’t Diagnose Our Son With ASD.
If you want to read the whole article now, grab a snack or a drink, get comfy, and let’s get started.
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First, a Story Time – My Healing Rainbow Baby Experience
My middle son (we’ll call him A) slid into the world effortlessly two days past his due date. A is my rainbow baby – the first baby born after a miscarriage. My previous pregnancy ended at 13 weeks with no warning.
As you can imagine, I was on pins and needles during the first trimester of my pregnancy with A. I was afraid to get too attached. Additionally, I experienced all-day nausea for most of the pregnancy. It was my most difficult pregnancy by far. By contrast, my labor with him was easy and his birth became a healing experience for me after a difficult labor with his older brother and the miscarriage of my second pregnancy.
Something Is Different. Something’s Not Quite Right.
A was born in the morning and that evening my husband returned home to care for our oldest son, leaving me and A alone for the first time. My darling newborn had been pretty quiet so far and was the picture of health. However, that night in the hospital would mark the first time of many that I would say to myself about A, “Something is different. Something’s not quite right.”
Within minutes of my husband’s departure, A began to cry. As a nursing mother who knew full well the natural remedy for a sad baby, I attempted to breastfeed him. He struggled to latch and my futile tries to help him only seemed to make him more upset.
His cries were piercing and I was quickly becoming agitated by the sound and by my inability to soothe him. Finally, in the wee hours of the morning, after a night of no sleep and a sickening feeling of helplessness and inability, I called the nurse to take my son to the nursery.
Now you have to understand- I practice attachment parenting. Sending my baby to the nursery to be cared for by a stranger was a heartbreaking choice for me. Here I was, a strong earth mother with more than two years of parenting experience and I couldn’t soothe my brand new baby. His older brother had been a high needs, fussy baby, so crying was no problem! But this time something was . . . different.
Does My Baby Have Anxiety?
After two days in the hospital, I brought my newest bundle home and we began our lives as a family of four. A, who is named after two of his great-grandfathers, reintroduced us to the world of sleepless nights, diaper changes, and baby sleep smiles.
For A, nursing was not the big deal it had been for his brother. He was able to learn to latch sooner and he rarely nursed for comfort. While big brother D had nursed for 45 minutes at a time every two hours, A nursed only when hungry and wouldn’t accept the breast as a pacifier. In addition, when he nursed, he’d stiffen his legs and his body was oddly rigid. (He continued this way of nursing until he weaned at 25 months.) It was as if nursing made him anxious.
Because D had been a comfort nurser, I really only had one tool in my box to soothe an upset baby. Fortunately, I was able to use a baby swing for A with some success. I practiced babywearing with a simple ring sling for longer periods, but eventually A would become frustrated in the sling and the crying would resume.
My husband, on the other hand, seemed to have a magical touch with A. When he’d come home from work in the evenings or on the weekends, he’d relax in the recliner and A would lay peacefully on his chest. It was a much needed break for me and the two of them developed a special bond that had been a struggle for my husband to maintain with my oldest, who was a hopeless mama’s boy in his first few years.
The Boy Who Knows Things
As A moved through his first year of life, hitting his physical and cognitive milestones right on target, he was a quiet, but curious baby. Somewhere around 20 months of age, I noticed A was now calmer at home, though still somewhat anxious in public.
While his older brother followed me around the house practically all day, there were numerous times each day that I’d have to go find A. Usually he was playing quietly with his trains. Often, he was sorting them by color or size. Sometimes he was lining them up.
One family friend noted, “He’s so aware and serious. He looks so wise.” Indeed, as he grew into a toddler and preschooler we would jokingly call him, “the boy who knows things.” And he did. He would state answers instead of asking questions. His vocabulary astounded us time and again.
Is it Autism or Sensory Issues?
Although A could carry on a perfectly logical adult conversation about paleontology or astronomy by the age of 3.5, school was his least favorite place to be. When A was 2.5 years old, I worked as a preschool teacher and was able to bring him with me each day.
While he was technically too young to be in my class, he screamed uncontrollably when left in his own class, so I simply brought him with me. He wouldn’t let me out of his sight.
When I took over a bible-study childcare class on an additional day, he wouldn’t even let me put him down. He cried in my arms for the entire two hours.
This behavior away from home was in stark contrast to how calm and quiet he was at home. It took me several weeks to realize the connection between his clinging and crying and the preschool redesign, which resulted in every room being painted in mercilessly bright colors.
Although I felt his behavior was extreme compared to the behavior of other children his age, I didn’t know exactly what to tell my pediatrician. In the back of my mind, I wondered if A might have sensory issues that made it difficult to function in a room with brightly colored walls, loud children, constant movement, and too much touching. In addition, the fact that he hadn’t eaten solid food regularly until he was ten months old and that he spent a great deal of time each day fighting a bowel movement made me painfully aware that something was off.
Eventually, a fellow preschool teacher and mom saw my struggles and told me that A’s issues looked nearly identical to her son’s. Her son had sensory issues and when she told me her story, I knew I was dealing with much more than a fussy toddler.
The Trouble with Preschool
Partly because of A’s struggles in the preschool setting that year, I chose not to teach preschool again the next year and instead focused on keeping him closer to home. (And his younger brother was born around that time, as well.) However, when he was old enough to be enrolled in the 3-day-per-week, 3-year-old preschool program, he did surprisingly well.
He attended all three days each week and never once protested! He loved his teacher and, having a September birthday, he was one of the oldest children in the class. His adult-like manner of conversing was attributed to his being older than the other children and for a year I was able to see him as more similar to other children than he was different.
The next year, when we enrolled him in the four-year-old preschool program, the wheels began to come off a little. My sweet boy, who’d been so happy to attend preschool three times a week the year before, now balked at the four-day-a-week program. He begged me not to make him go, though he couldn’t provide a reason for not wanting to be there.
He loved his teacher, he enjoyed most of his classmates – all except those who were overly talkative or touched him too much. After a few weeks, I stopped trying to cajole him into attending preschool. Instead, I made a plan with the preschool director and his preschool teacher to send him only 2-3 days per week and the rest of the year went smoothly.
I felt quite opposed to sending him to public school for Kindergarten the next year, however. I intuitively knew it wouldn’t be a good fit.
I knew there was something different about my child. But, I knew in order to get him into the environment that was best for him he’d need a diagnosis. But what on earth could he be diagnosed with?
He wasn’t autistic (I thought.) His ability to communicate was far too advanced for that.
He didn’t have ADHD. He, in fact, had a calm demeanor and excellent focus and was too young for that diagnosis anyway. I simply couldn’t put my finger on what was not quite right about my sweet little boy.
5 Reasons We Chose Not to Diagnose Our Son with Asperger’s Syndrome/Autism Spectrum Disorder
(The reasons are in no particular order. They were each important factors in our decision.)
We Are a Homeschooling Family
I took my concerns to my pediatrician who made sure that A was on target cognitively and physically. He acknowledged that A was struggling with sensory issues and encopresis, but he wasn’t willing to say for sure that A wouldn’t fit well into a traditional classroom setting.
He’d only say that A’s preschool experience was probably a good indicator of what we could expect from him in Kindergarten – cognitively and physically ahead of his peers, but frustrated by the noise and constant interaction that school demands.
Because of A’s late September birthday, he’d be nearly 6 years old when entering Kindergarten, so holding him back a year wasn’t an option. That summer my husband and I made the decision to begin homeschooling our children. To this day, A is the only one of our children who has never attended public school.
When we decided to homeschool we held off on pursuing a formal diagnosis. We wanted to wait and see how A progressed from age six to seven and then talk to our pediatrician if we still had concerns.
I know for certain if A had attended Kindergarten we’d have had no choice but to have him diagnosed. His special needs would’ve been undeniable under the pressure of a bright, noisy classroom five long days each week.
Homeschooling allows A to work at his own pace. It gives him the calm, quiet environment that he needs to be a happy and healthy boy. Because we had the emotional and material resources to homeschool, it was a no-brainer for us to teach A at home.
I Have Clinical Experience With ASD Children
The same summer we began homeschooling, I began graduate studies in Marriage and Family Therapy. Not long into my course of study, I learned more about childhood diagnoses – autism spectrum disorders in particular – and it opened my eyes to a spectrum disorder called Asperger’s Syndrome.
Although I had read about Asperger’s before, A wasn’t old enough for an official diagnosis, so I had passed over mentioning it to his pediatrician. The more I read about Asperger’s the clearer it became to me that my dear son was indeed on the mild end of the autism spectrum and that he fit the criteria for Asperger’s syndrome.
This was the DSM IV Diagnostic Criteria for 299.80 Asperger’s Disorder at the time. (source)
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects
(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
When I began my clinical training in marriage and family therapy I had the opportunity to work directly with (and even diagnose a few) children with Autism Spectrum Disorder. I knew for certain that A was one of them. It was undeniable to me after seeing ASD in a clinical setting.
It was then that all the struggles we faced when he was a baby and a toddler started to make sense. His quirkiness, his mannerism, his intense focus, his need for strict routine, his obliviousness to social cues, and so much more all clicked into place! I felt relief and a deep sadness all at once.
Soon I would realize I didn’t need a diagnosis to tell me what I already knew about my son. I knew the course of action we needed to take.
Nothing really changed in how we parented and taught A once we knew he met the criteria for Asperger’s. We’d always tailored our parenting style to meet the needs of each of our children as individuals and so we continued to do the same. We’d always known that A had different (or special, if you will) needs than our oldest and youngest son. (And we knew they had different needs from each other.)
I’d learned strategies as a therapist that continue to help me parent and teach A today.
His Pediatrician Agreed a Formal Diagnosis Was Unnecessary
When I first realized A was on the spectrum I took my concerns to my pediatrician, who agreed with my assessment of A. However, at the time, the latest Diagnostic and Statistical Manual was being formed (DSM-V) and there was talk of Asperger’s syndrome being removed as a diagnosis.
My pediatrician and I agreed that since A wasn’t attending school and didn’t need an Individualized Education Plan (IEP), it was unnecessary to diagnose him with Asperger’s syndrome.
I talked with the clinical director at the therapy practice where I worked. She agreed with my pediatrician. Unless we wanted to pursue therapy for A and wanted insurance to cover it we really didn’t need a diagnosis.
I Needed Him to Have a Diagnosis More Than He Actually Needed a Diagnosis
It sounds so simple, right? The DSM-5 says Asperger’s isn’t a diagnosis, so we don’t diagnosis him.
But it wasn’t that simple. The decision to forego a diagnosis was a heart-wrenching one. After years of loving this child, who’d forced me to think outside of the box to parent him and who’d stretched me to nearly breaking so many times, I finally had validation that my intuition and observations were right. Something was different about my son!
His unique way of being in the world wasn’t as unique as I’d felt it was. We weren’t alone in parenting a child like him. He wasn’t alone in his way of being.
Part of me wanted a diagnosis. I wanted to be able to easily explain why A sometimes (seemingly) rudely ignored adults when they were talking to him. I wanted to be able to explain the odd tantrums he still had at 7 years old. I wanted to be able to explain his tics and his narrow interests and his pedantic speech patterns. I wanted an excuse for his bluntly honest comments.
See, I needed that diagnosis for him way more than he did. He didn’t need an excuse to be himself. I needed an excuse to explain him to a world that didn’t understand him. He didn’t need a diagnosis to grow into who he was meant to be. I needed a diagnosis so that I could feel sorry for him and for myself. And so, I decided not to pursue the diagnosis.
I still fight the urge (and sometimes fail to resist it) to tell people, “Oh, you know, he has Asperger’s” when he says or does something that unsettles others. I still want people to know he’s perfect despite his quirks and he can’t help the way his brain is wired. I can’t stomach the thought of people writing him off as weird and not taking the time to get to know this incredibly smart and interesting kid!
But, that’s my problem to sort out within myself. A diagnosis for my child isn’t going to magically move me past my hang ups.
I Have Confidence in Our Ability to Teach Him How to Thrive
Instead of making excuses for him, I put my focus into teaching him. I show him, gently, in real life social situations, how to respond to others. When he meets someone for the first time, I help him know what to do. I teach him the expected script. I give him the words to respond when he freezes.
I stand beside him while he pays for his own purchases and I remind him to tell the cashier thank you. My husband shows him how to break down a menu into parts and disregard the unnecessary sections to make deciding on his order less overwhelming.
We give him a script to kindly tell his little brother that he wants to stop playing and be alone for a while without rudely blurting out that he’s done and wandering off abruptly.
He doesn’t need a diagnosis to learn how to live in the world. He needs his family to model expected behavior and his parents to take the time every single day to teach him the things he doesn’t grasp automatically. He needs our patience and our understanding. He needs us to explain why the majority of people behave and react the way they do. He needs us to tell him why following social norms of interaction is beneficial to him. He needs to know the benefits of safe and healthy relationships and how to tell if someone is taking advantage of him. A diagnosis wouldn’t change how we teach him about the world.
Should You Seek Diagnosis for your Child on the Autism Spectrum?
Real quick answer – I can’t answer that question for you. I wrote this article to tell you about my experience and to tell you what considerations we had when making our decision to not formally diagnose our son.
This article isn’t meant to persuade anyone to seek or not seek a diagnose for their child.
I Think My Child Has Asperger’s, but Asperger’s Isn’t a Diagnosis Anymore. What Do I Do?
I know the removal of Asperger’s from the DSM has caused frustration for many parents of Asperger’s children. It’s as if the special needs of our children have been forgotten. But we haven’t forgotten! We can still help them, we just have to be more diligent now that Asperger’s isn’t a diagnosis anymore.
And, I’m here to tell you that it can be done. If you have a child who is dealing with mild Asperger’s but who might not be covered under the new DSM-5 autism diagnosis, you may have to work a little harder to get your child help.
If your child isn’t doing well in a school setting, discuss it with his or her teacher and pediatrician. There may be special services available for your child in his or her school or through your community.
Never stop teaching your child how interaction among neurotypical people works. I’ve found that my son is pretty good at parroting the scripts that he knows are expected by most people, whether or not he actually understands the necessity of them. (Look, sometimes I don’t either! I can’t blame him!)
For the children with more severe Asperger’s, an “autism spectrum” diagnosis still exists. Please talk with your child’s doctor or therapist.
A Brief Word About Asperger’s Controversies
Yes, I know Asperger’s Syndrome isn’t a diagnosis anymore. Did you read the whole article?
Yes, I know about the controversy surrounding Hans Asperger. Yes, I have an opinion about Hans Asperger and whether we should continue to use his name to describe high-functioning people on the autism spectrum.
No, I won’t share my opinion. No matter my opinion or yours, the medical community has made the decision to stop calling Asperger’s by that name, so there is no point continuing the discussion. In my opinion.
Yes, I’ve heard of allism. I appreciate satire. That’s as far as it goes for me.
No, I don’t have an opinion on Autism Speaks. I’m not familiar enough with the organization to have formed an opinion.
I’ll say two things about the only Autism Speaks controversy I’m currently aware of: I’m not a fan of “the sky is falling” sentiments and it’s easy for me to see both sides of most arguments. You can interpret that in the way that is most comfortable for you.
If you email me or @ me on social media to ask those questions, I won’t answer them. I will know you didn’t read the whole article where I already answered.
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