Why We Chose Not to Diagnose Our Son With Asperger’s Syndrome

Why we chose not to diagnose our son with asperger's syndrome

 

  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 might 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.

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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 is 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 that 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.

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 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 would not accept the breast as a pacifier.  In addition, when he nursed, he would stiffen his legs and his body was oddly rigid.  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.  I was able to use a baby swing with some success and practice baby-wearing 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, 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. 

 father and son

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 began to see A become calmer at home.  While his older brother followed me around the house practically all day, there were numerous times each day that I would 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.  

But while A could carry on a perfectly logical adult conversation about paleontology or astronomy by the age of 3.5, his schooling wasn’t going so well.  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 and 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.  

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, 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 that I was dealing with much more than a fussy toddler.

Partly because of A’s struggles in the preschool setting that year, I chose not to teach preschool again and instead focus 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 year old preschool program, he did surprisingly well.  He attended three days per 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 as 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 had 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 could not 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, 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.  

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I felt quite opposed to sending him to public for Kindergarten the next year, however.  I knew that it would not be a good fit.  I knew that there was something different about my child.  But, I knew that 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.  His ability to communicate was far too advanced for that.  He didn’t have ADHD.  He, in fact, had a calm demeanor and intense 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.

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 there was nothing that he could tell me about my concerns that A might not fit well into a traditional classroom setting.  Because of A’s late September birthday, he would be nearly 6 years old when entering Kindergarten, so holding him back a year wasn’t an option either.  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.

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That same summer, I began my studies in Marriage and Family Therapy.  Not long into my course of study, I began to learn 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 quite well.

Here are the the DSM IV Diagnostic Criteria for 299.80 Asperger’s Disorder (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 and had the opportunity to work directly with (and even diagnose a few) children with Asperger’s syndrome, I knew for certain that A was one of them.  It was then that all of 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 things to be a certain way, his obliviousness to social cues and so much more all started to make sense!  I felt relief and a deep sadness all at once.

I took my concerns to my pediatrician who agreed with my assessment of A.  However, at that time, the latest Diagnostic and Statistical Manual was being formed and there was talk of Asperger’s syndrome being removed for the next version!  My pediatrician and I agreed that since A wasn’t attending school and didn’t need an Individualized Education Plan (IEP) that it was unnecessary to diagnose him with Asperger’s syndrome.

It sounds so simple, right?  The DSM-5 says Asperger’s isn’t a diagnosis, so we don’t diagnosis him.  Done!  But it wasn’t that simple.  The decision to forego a diagnosis was a heart-wrenching one.  After years of loving this child who had forced me to think outside of the box to parent him and had stretched me to nearly breaking so many times, I finally had validation that my intuition and observations had been right.  Something was different about my son!  His unique way of being in the world wasn’t as unique as I had 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 that 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 that he’s perfect despite his quirks and that 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!

Instead of making excuses for him, though, I’m teaching him.  I’m showing him, gently, in real life social situations, how to respond to others.  When he meets someone for the first time, even at 10 years old, 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.  

I know that removing Asperger’s from the DSM-5 has caused heartache for many parents of Asperger’s children.  It’s as if the special needs of our beautiful Aspies’ have been forgotten.  (For the children with more severe Asperger’s, an “autism spectrum” diagnosis still exists and they will be covered by that.)  But we haven’t forgotten!  We can still help them, we just have to be more diligent and more creative 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!)

It’s possible to be an amazing Aspie without carrying around a diagnosis as a life-long crutch to explain away socially awkward behavior.  My son is doing it and he’s growing nicely into the person that he was put on this earth to be.  I’m proud of him and I’m proud of myself and my husband for accepting him for who he is and for finding ways to help him navigate in a world that sometimes seems to him to be “quirky”!

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Allison, founder of Our Small Hours, is a full-time working and home schooling mother of three. By sharing information about her passions, (parenting, home schooling, marriage, mindful living, natural wellness and real food) Allison hopes to inspire others to live their best lives and to make the most of their small hours.

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7 thoughts on “Why We Chose Not to Diagnose Our Son With Asperger’s Syndrome

  1. If I were going through the school system now, I have little doubt that I would be diagnosed with Aspergers. I fit nearly all the “textbook” markers. I am now a functioning adult, with a job, and a small, but great circle of friends. My closest friends get to see the “weird” parts of me that I have managed to camouflage in ordinary social interactions, and appreciate me all the more for letting them see that side of me. I have even managed to maintain a relationship for more than half my life at this point. It is more than possible to go through life without a diagnosis, especially now that he is getting to an age where he will be able to advocate for himself. As long as you continue to teach and guide him, he will be more than fine, he will thrive. Good for you and him.

  2. Hi Allison, my son was diagnosed as having Aspergers like traits at three. Mainly because he toe walked, had a really high IQ and did not give much eye contact. We worked with him on social skills continuously. By the time he finished 2nd grade they decided he was not on the spectrum anymore. He stopped toe walking and gives eye contact now. He is still a super sweet, affectionate, smart, and quirky 11 year old boy. Don’t worry, your son will keep improving over time. All the kids I’ve seen have. They are different but that makes them beautiful to me!

  3. I believe I am an Aspie, too :) I didn’t realize it until I searched for a dx of my son’s condition. He appears to be Aspie, as well, and we may start OT. He’s just got his quirks, as do I… and amazingly; call it “assortative mating”, his father does, as well. We’re a happy spectrum family that hasn’t sought official diagnosis. I do feel it may just be easier to be like ‘We’re Aspies, ignore us’ Hahah. I have few friends but I have what I need. The key is finding what you love and rolling with it. Makes job placement easier, friends with similar interests, etc. Someone you can talk endlessly ‘to’ (not with :P) about your interests. People stare at my anxiety ‘tics’ when I get really nervous and stressed. And I feel their eyes on me. Sometimes I wanna just go full-on hand flapping, pacing, and tell them all I am autistic. But I don’t. I just get through it, and the urge goes away, and the fear subsides and we roll on. :) GL to your son! There are many of us out there, we can and will learn how to relate to others. I scripted myself at work after a couple years and people really took well to it! I wasn’t being fake, just relating how they like to communicate. #1 I say is, ask people about themselves. They like that. Smile. And say ‘have a good day’, or ‘was great to see you’. End of. It gave me a lot of confidence to play the part. I will continue to teach my son what I’ve picked up on. Our high intelligence allows us to do so. My son’s father has not had quite as good of an experience in the work force, but I firmly believe he could be taught to relate if he HAD to. That’s another story, though ;)

  4. Thank you for sharing this. My son, too, is a little off, and we are avoiding any formal diagnosis. You articulated so well what/who the diagnosis would be for. Love to find others who are avoiding this medicalization of our children. Grateful to be able to homeschool and let him be the person he is.

  5. My daughter has an Aspergers diagnosis and was diagnosed at the age of 12. I knew there were some social issues but thank God she was has always been in regular classes and is doing well. As far as social skill she was bit late and we taught her many things. I have to tell you that our school district has worked with her and continues to help when needed. I have come to the conclusion that if a child seems like they are ignoring me or don’t speak I don’t pass judgement because that was my child and many people thought she was “weird.” Our pediatrician that my girl was shy and if they are shy they don’t like to talk. I use to used that term shy to explain it.
    I’m glad I found this post because I can relate and will tell you that A is going to be fine! He has a fabulous family that is teaching him and supporting him and that’s the best medicine.

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