My Son with Aspergers

Why it took me so long to admit he was on the spectrum

We weren’t in denial, exactly, but we took our time coming around. We knew it was unusual for not-quite-three-year-olds to know so much about astronomy, to possess such an advanced vocabulary, to spend hours at a stretch spinning the lids of Tupperware containers. We thought this demonstrated the seeds of genius. And we weren’t wrong; the boy is extremely bright.

What we didn’t know, or didn’t want to know, is that these behaviors – the business with the Tupperware lids in particular – are red flags, signs that something may be (to use a fancy industry term) wrong.

Our son’s preschool teacher gave us the grim news. (She is kind and gentle and Danish, so the news was delivered kindly, gently, and with a Danish accent). We should have him evaluated, she told us. He might have a delay.

The A-word was never used. It was replaced by the more benign-sounding sensory issues. We liked the idea of sensory issues. Sensory issues are not listed in the DSM-IV. Sensory issues would not indelibly mark our son’s academic record. Sensory issues could be grown out of.

We had a meeting with our school district’s Social Services department. Huddled around the conference table were the district psychologist, a representative from the county, a parent advocate, the specialist who tested him for pragmatic speech, two teachers from his preschool, and us – all here for a single child who weighed less than forty pounds.

In the middle of the table was a box of tissues.

“He definitely needs services,” the psychologist, a red-faced man with round glasses and a penchant for mumbling in jargon, decided. “We just don’t know what. Does he need speech? Does he need OT? Does he need a SEIT? We don’t know.”

It was explained to us that, while our son spoke with a well-above-average vocabulary, it was his pragmatic use of the language that was the concern. It was explained to us that OT stood for occupational therapy, which he needed to help him with motor skills gross and fine. It was explained to us that SEIT was shorthand for special education itinerant teacher. It was recommended to us that our son be evaluated by a diagnostic pediatrician.

Again, no one used the A-word. No one corrected my wife when she said: “He has sensory issues. That’s all it is. I’m sure it’s just sensory issues.” But I could detect that the others at the table were keeping something from us. There was an elephant in the room, and its name began with an A.

The diagnostic pediatrician didn’t look like a doctor. If not for the stethoscope around her neck, I’d have taken her for a poetess. Our son spent almost two hours with her. He did puzzles and answered her questions, some eagerly, some dismissively. He played with a toy farmhouse.

Then the diagnostic pediatrician dropped the A-bomb. Actually, she dropped two; in her formal evaluation, she diagnosed him as “high-functioning autistic.” Then she deployed the second: what our son had, she said, is Asperger’s syndrome.

That night, we cried. We didn’t cry because he had what he had – what he had was an integral part of his personality, a personality we adored – we cried because we were worried about him. We cried because we were afraid that he’d grow up with a stigma attached to him. We cried because we didn’t want to spend the next fifteen years going to meetings with that psychologist. We cried because we loved him.

The next day, I looked up Asperger’s syndrome on Wikipedia. Although our son showed flashes of some of the behaviors associated with the disorder – the social skills delays, the advanced speech, even the interest in stars and planets – he did not exhibit the biggie: obsessive interests in arcane subjects.

“He doesn’t have it,” my wife said. “He can’t have it. He has a good sense of humor! He laughs! And he loves to cuddle – he’s a big mush!”

The doctor’s wrong, I decided. She’s wrong, and my wife is right; it’s sensory issues; that’s all.

I closed the Asperger’s page. It would be more than a year before I went back to it.

A good friend of mine has a son almost the exact same age as ours. Her son, too, had problems in his preschool. He, too, was diagnosed as “high-functioning autistic.” Overnight, my friend became an advocate for autism awareness. She went to meetings, she trained to be a parent advocate, she organized support groups, she even launched a website devoted to parents of kids on the spectrum.

I did not react this way. On the contrary, I avoided the subject completely. It’s not that I was ashamed – I love my son, and I think he’s brilliant and creative and cool as all get out – I just wasn’t ready to deal with it.

I didn’t want Asperger’s to dominate my life. I didn’t want one of those puzzle ribbon stickers on my car. I certainly didn’t want to talk about The Spectrum with anyone; the last thing I wanted to spend my free time doing, after parenting a boy with Asperger’s all day, was talk about Asperger’s.

I was curious, of course. I wanted to know what we were dealing with. But the subject filled me with such dread that I simply could not bring myself to investigate it. I let it sit there unopened, in the same way I do with my credit card bill. Then one day, a good year and a half after the visit to the diagnostic pediatrician, I decided to tear open the metaphorical credit card envelope and take a cold, hard look at the fine print.

At the time of his evaluation, our son did not yet have arcane interests. Now, he did. He was obsessed with states, with real estate listings, with Interstate highways, with pylons, with lamps (especially chandeliers), with floor plans. He talked about these areas of interest incessantly; sometimes it would be pylons, sometimes states, but it was always something that demanded his undivided attention.

And I admitted, begrudgingly, that the doctor had been right.

I dealt with the diagnosis in the only way I knew how: I wrote about it.

Writing required a great deal of research that was emotionally difficult for me – there were many moments when I had to take long walks around the SUNY New Paltz library to process all the data – but I needed to learn as much as I could about autistic spectrum disorder, to make the novel I was working on as informed as possible. This was vital; I wanted other parents to be able to profit from our experience.

Although the research process could be unpleasant, a lot of what I learned was comforting. For example: Asperger’s has only been on the books since the mid-’90s – the blink of an eye in terms of scientific development but long enough that my son will benefit from two decades of academic study. The spike in autism rates in the last ten years, while alarming, guarantees that our son won’t be alone in his struggles and that his teachers will be well-acquainted with spectrum disorders long before he makes it to their classrooms. Most of all, organizations like Aspies For Freedom – led by people like my friend – have established a support system that was unheard of just a generation ago.

One day my son will realize that he has Asperger’s. I worry about that day, but I’ve stopped worrying about other things. The two years of specialized early education have done wonders for him. He’s adjusting well to kindergarten, charming his teachers, making friends. He was even elected president of his class – an honor that, in true Asperger’s fashion, he found annoying. (“It’s so boring,” he whined). He has his off days, of course, as all aspies (and all six-year-olds) will. But we’re beyond proud of him – and more than a little relieved.

As for me, I still don’t like to talk about The Spectrum. I’m still not entirely comfortable with the A-words. I don’t attend support groups, I don’t scour the message boards on autism-related websites, and I’ll never put that puzzle ribbon sticker on my car. But every day I’m amazed by something my son says, does, or observes, and I feel blessed to be the father of such an original thinker – and such a sweet kid.

Comments

30 Responses to “My Son with Asperger’s: Why I couldn’t admit he was on the spectrum”

  1. My son has Aspergers too, and I also don’t like to talk about it too much. He was not diagnosed until age 9, so I don’ think 3 is late. It does take a while to accept the idea. It’s been over 2 years and I am still adjusting. I also never call him an Aspie. I don’t like that term. I say my son with Asperger’s. To me, that is just a part of what he is, not all he is.

  2. I love how the twitter link says “Why it took this mom so long to admit her son…” and links to 5 year old articles. Great post though.

  3. A good basic reference book: Dr. Robert Sears’ “The Autism Book.”

  4. Thanks for sharing this Greg. I linked to this post from my blog at AspergersExpert.blogspot.com

  5. I look forward to reading this more carefully. You might like my blog: nldthoughtsandfeelings.wordpress.com, about how I’ve dealt with these issues. I don’t have AS, but I have some related struggles due to NLD.

  6. As an Aspie diagnosed in my twenties, I have to say, I understand the relief of putting the puzzle together, though I wonder how different my life would have been if the diagnosis and autism-centered counseling had been available at an earlier age

  7. This is just damn gorgeous. What a lucky little guy to be born into this family.

  8. This was beautifully written. I, too, think your little boy is lucky to be born into your family. There’s little doubt he’ll be just fine if unconditional love and support is what makes the difference. Seems like Babble is upping its game this week. ‘Bout time!

  9. We had the A bomb dropped when my son was 4, and I got my son’s group of therapists at the time to discuss the diagnosis. None of them agreed with it, and the doctor who had given it to me was kind of insane, so I discarded the evaluation. Then I held him back in kindergarten and he has been thriving….sometimes. Some days are good, some are bad. He has obsessions, he likes routines, he has tantrums that are unbearable. And still I have nothing. I envy anyone who even gets a diagnosis for their child and then can secure help and assistance for them. I can not, and it’s not easy. Either way is easy.

  10. this was so nicely written — a pleasure to read.

  11. Thank you for this thoughtful article. I have just discovered that my husband has Asbergers and am now wondering about my 4 year old. We are currently in the sensory issues stage that you describe

  12. I’m a little confused as my son was diagnosed when he was 8 and all the reading I did said that kid were often diagnosed later than that … so to say age 3 or 4 or whenever this child was diagnosed is late – is just wrong. Also – Autism is not a dirty word or something to hide from .. the beauty of your child and that he has asperger’s is something to share (as you did here) because the more people that know about it and that you can be a wonderful person and still be autistic – the better. Having a diagnosis is opening a door to information, services, treatment. I wish my son was diagnosed earlier so we could have started specific services earlier. As it was he received services for developmental delays since the age of 3, but noone said anything about autism or aspergers until I pursued it when mainstream 3rd grade got to be too much.

  13. I know it must be difficult accepting the diagnosis for your son, but like a couple other commenters I can’t help but be relieved for him that it came so young. My 27-year-old brother is almost certainly dealing with Asperger’s, but because we grew up in an ignorant small town (and because my parents were in denial for far too long) he was simply labeled a “bad kid” and pumped full of ADHD drugs. As an adult, he’s worked hard to be able to maintain friendships and relationships, to hold a job. But because he has no diagnosis and therefore no community support system, he’s not really capable of living on his own. We can’t trust him to do things like manage his finances, or frankly anything that’s not related to his particular genre of music or Aikido. He will struggle and be dependent and people consider him weirdly socially inept for the rest of his life because he doesn’t have that magic diagnosis that let’s other people know that he’s different. Brilliant, loving, different. So thank heaven for that teacher who called out warning signs when she saw them. Your son will have a much stronger shot at a “normal” life than my brother ever will. Keep up the good work.

  14. I believe my friend’s daughter has high-functioning Aspergers. My friend sees her daughter as quirky and intelligent (she’s been reading since 3 yrs old, has all the state capitals memorized, taught herself 15 songs on piano at 4 etc…) with some social awkwardness.

    My friend is a good mother and tries to help her daughter work through some of her socially challenging “quirks,” and is very accepting of her daughter and her different ways, but she is very against the idea of labels and psychology. Do you think it’s beneficial to get a proper diagnosis, or can a child with Aspergers do okay with a caring, involved parent?

  15. I share your sentiments Mr. Olear. As a parent of a kid who carries the ASD label, I deal with it quietly, without bumper stickers or support groups. We have not needed to disclose the label to anyone outside of family and teachers. I am not hiding anything — I feel that primary function of the label is to get services. If I want people to understand something about my child, I try to be specific about whatever the issue might be. The label (and its Rain Main imagery) only serves to confuse people. I don’t find it helps me to understand him either — if I am enjoying my time with him and we are connecting in a good way, that’s when I feel like I understand him.

    My son got a diagnosis of PDD-NOS as a preschooler in 08. We took him to an autism specialist for diagnosis (world renowned, PhD, published author). This doctor said he definitely had an ASD. “Atypical” language development & perseverative speech were problems. Pragmatic language was his major weakness. This doctor would not call it Aspergers — yet. He had only diagnosed Aspergers before 1st grade a few times. He said that the ability to specially seek out and memorize information in areas of special interest is a critical element for an Aspergers diagnosis, and kids generally can’t do this before 1st grade.

    For what its worth, 3 years later, my son does not have unusual special interests. His interests have broadened slowly over time, and to the extent his interests are specialized and repetitious, they are typical of kids his age and reinforced by his social group (e.g., potty humor or nagging for the latest Lego thing). Do we credit early intervention or would he have outgrown some of his tendency to perseverate with time? I suspect a little of both, but we will never really know.

    Like you, I think my son is an incredible person. I am honest with myself about the social and language skills it takes to make it in this world, so we focus on these skills at home and make sure he gets outside services as appropriate. But to call his traits a “disorder” – traits that are so integral to who he IS as a person? I just can’t do it. I dread the day when I have to explain this all to him, and I only hope that by then this language of “diagnosis” and “disorder” will be replaced by something more enlightened and a little less defeating to the people who share the unique, aspie style of looking at the world.

  16. I don’t have to deal directly with this issue in our family but I do strive to understand what the issues and struggles are for the families with children who are “different”. Whilst I can sympathise with the fear of a parent facing up to the need for a diagnosis and help, I can’t help but feel that it doesn’t serve the best interests of the child. As friend I want openess, I want to understand and I want to help if I can. I don’t want to have to worry about offending anyone. I want to be able to help my children understand your children and how to engage them and develop friendships. And when a parent denies/ignores the assessment of the preschool teacher that their child needs some help I struggle with disbelief… especially when EVERYONE else can see something is not quite “right”. A 2 year old counting to 100? Obsessing over the foam number mats and freaking out if one is missing? Writing the names of foreign cities in chalk on my walls? Unfortunately true genius is less likely than being on the austism spectrum. Three years later and this child is considered aggressive and disliked by his peers. And sadly his parents are equally disliked for their insistence on remaining in denial and attributing poor behaviour to other children. Please don’t be those parents.

  17. Beautifully written. Thanks for sharing.

  18. good read!

  19. Thanks, everyone, for the comments and for reading the piece. Some of the comments ask questions that don’t make sense to answer up here in the thread; please do drop me a line if you’d like to, and I’ll be sure and get back. Thanks again. – Greg

  20. Very thoughtful article – thank you. @cathleenskinny would like this.

  21. How does one remove a comment? I posted through Facebook but it doesn’t look like I can remove or edit my comment.

  22. What I liked about this was your honesty that, as writers, we process things through our work. But, as parents, we don’t want to parent our kids through categories.

  23. I could relate to you writing. my daughter was diagnosed around age 4. thank you for sharing this.

  24. My oldest, 8yo, was diagnosed last year with Aspergers. He is my first child! I just thought we had a really smart kid. He is obsessed with airplanes. At 2 he could identify the make and model of an airplane as it flew through the sky (that’s a Southwest, Mommy! That one has winglets and a jet engine!). At 4 he could have been an honorary tour guide at the local flight museum–by far his favorite place to be. Last year I had to have a talk with him about why it isn’t good to draw swastikas on all his art at school (but Mom, German planes were BETTER in WWII! I’m just drawing the BEST planes!). He’s ADHD, also. The thing is, after a while I realized Aspergers is just another way to say “differently abled.” I always thought that was a copout, that “differently abled” label…but it’s for real. The kid makes straight A’s. His only issues are social–he has a hard time making friends because he really just doesn’t care what they have to say. He wants to talk about airplanes and make everyone as interested in them as he is, and doesn’t understand why we just aren’t. I called the Air Force recently…they said as long as he’s not dependent on daily medication he’ll still be eligible to be a fighter pilot, which is his dream. That was my biggest concern…his heart is so set on it, I would hate to have to tell him it’s not possible. My husband and I are struggling to decide whether to tell Punkin about the Aspergers yet, but we have told him about the ADHD. His teacher has been amazing with this, simply amazing. If he could have her the rest of his school years all would be well. But last year his teacher was constantly on him and he was always in trouble. Hopefully we won’t have that problem anymore now that there is a diagnosis.

  25. Or maybe your son isn’t on the spectrum. The diagnosis has broadened so much in past years. I have a son who has “senory issues” and speech delay, but I agree with what the late great Stanley Greenspan said. If a child has the essential drive for social communication and connection, it may be something that looks like ASD but is probably not ASD. Greenspan felt that too many kids were diagnosed based on secondary, rather than primary symptoms. I am not saying that is what happened with your son, but it is certainly worth it to take a look at the growing issue of overdiagnosis. 40% of kids diagnosed ASD no longer carry the diagnosis some years later. Is this because or erly intervention, or because of overidentification? I don’t know, but it is a question worth asking.

  26. Thanks alot – your ansewr solved all my problems after several days struggling

  27. my son and my journey took almost 12 years!!! here in australia we are behind in the Asperger/Autism awareness (it is changing) I knew there was “something” but no-one suggested Aspergers or Autism, there was suggestions he was just “naughty” ODD (oppositional Defiance Disorder)….gifted therefore bored, that I was a bad parent and “let him rule the roost” therefore all my fault and that he Was ADHD, none of these fit..
    I had him assessed for Aspergers and he didnt meet quite all of the criteria, therefore doesn’t have an official diagnosis, but I have finally come to realise with my research that he is. He actually self diagnosed after reading All cats have Aspergers (Kathy Hoopmann) he said this is me after reading it and to a far lesser extent All dogs have ADHD by the same author.

    I am still reeling, his father denies that there is any problem apart from the fact that I don’t discipline enough (needless to say we aren’t together)

    My biggest problem is not the Asperger but the Autism label (not sure why) am dealing with it day at a time….

    I also believe i have many Aspie traits and his father has most….. so this kid really had no chance….

    but he is an amazing, spirited child, who has an incredible knowledge and memory for computer games (current obsession) and Big bang theory ;-) lol

  28. Great post, Greg. And I say “great” because it often takes a great deal of bravery on the part of parents to face truths related to our children. I faced Jordan’s Aspergers differently. I was happy about his diagnosis. But then, his mom and I discovered Asperger’s before he was diagnosed. People said there was nothing wrong, but then, hey, spinning plastic hamburgers when you’re a baby is a little different. As well as Jordan’s obsessions with trains, planetary motion, escalators and so forth. It’s been a great journey to see Jordan become a college student, performer and an ice skating instructor. Thanks for reminding me that Asperger’s is often a difficult journey. It was. But isn’t always so.

  29. Thank you for this article. I have been considering the possibility that my son has autism or aspergers for some time and my son’s preschool teacher brought some of his social issues up to me just yesterday. Even though it wasn’t really a surprise, I spent most of yesterday crying…for the exact reasons you posted above. I know my son is a bright, loving child who will have friends, but I also know that he will not have the easy childhood every parent hopes for (though no child truly does). I cry for the worry and the love. Now I know I don’t cry alone.

  30. Thanks. My son is obviously not Aspergers. Perhaps doctors once thought that was his diagnosis – long before the diagnosis ever existed. My son was diagnosed in 1961, at a time when Bettelheim had convinced the world autism was caused by maternal rejection, and psychotherapy for mother was the treatment. Im sure the psychologists and psychiatrists involved were altruistic, caring, well-intentioned men, but it was a silly science. Mothers tried to defend themselves, but psychiatrists were doctors. and in those days doctors did not endure challenges to their authority gracefully. (Actually, many of them still dont.) The treatment was a long painful process for both the therapists and the mothers. Today, of course, both Freuds obsession with sex and the notion that mothers cause any mental illness have been abandoned.

    I recently read, The Big Short, by Michael Lewis. It is a true story about the sub-prime, mortgage collapse. In the book, Michael Burry, a neurologist, decides he lacks people skills and doesn’t want to be a doctor any more. So he takes a job on Wall Street, where he is astonished that everyone doesn’t recognize the housing bubble that is about to burst. He can’t believe other people don’t see the coming financial collapse. In the midst of it all, his son is diagnosed with Asperger’s Although he was never himself so diagnosed, Michael Burry decides Asperger’s also describes him – which explains his lack of people skills and his aversion to being a doctor. His non-conformity would also seem to explain his ability to recognize financial bubbles to which other people seem blind. He bets heavily against Wall Street and becomes a multi-millionaire.

    If this is a description of Aspergers, why would anyone consider it a handicap? I find it intriguing that parents often claim to share their childs autistic or Aspergers personality traits.

    Berthajane Vandegrift My story can be read at:
    http://30145.myauthorsite.com/