Monday, April 13, 2015

Guest post: ADHD or ASD?

My oldest child is eight years old. He is funny, super-smart, and charming. He once made up a song about how much he loves me.

He has also recently been diagnosed with ADHD.

You see, ever since he was very young, I knew there was something different about him. I was just finishing my second year of medical school, and he was my first child. But I knew. In infancy, he stared at objects of interest with an intensity of focus that was mesmerizing. When he began to speak, he spoke eloquently (seriously!) and argued his points with logic well before the age of 2. He never joined in group activities, but observed them solemnly and seriously. He slept poorly. He had explosive, long-lasting, inconsolable tantrums about everything from transitions to meals to seams in his socks. He had severe separation anxiety at school drop-off, which lasts to this day. He had (has) exquisite sensory sensitivities. He remains a slave to routine and ritual (and reacts poorly indeed when things change). He can talk for hours about black holes and superheroes. He clearly loves his siblings and his parents, but all interactions must be on his terms.

I thought – I still think – that he has an ASD. Asperger's. It's him to a T.

I could write for pages and pages about my son and his symptoms and his birth and neonatal course and December birthday and GI problems and build my case to you – fellow physicians and mothers – as to why I am so sure that ADHD is the wrong diagnosis. But at the end of the day, in my mind, the letters don't really matter. All I want is someone out there to help us better parent our child. The way he relates with the world is not "neurotypical", that is for certain. But how can I help him, who he is, grow and thrive and make his way in peace and confidence in this world? My husband and I have done a lot which I think has been very good for our son. But we were at an impasse. We took him to the pediatrician because we were looking for help. Guidance.

So now we have this diagnosis. Maybe it is accurate, maybe not. I am truly not writing this as an argument one way or another for his actual diagnosis. The essence of my post relates to my own reaction to hearing the diagnosis. I just thought: no. Not that. NO. I would have accepted "ASD" – I suspected it. I may have accepted some kind of anxiety disorder. Or – no diagnosis! That's just who he is, and here's how we can help you. That would have worked. But ADHD… I absolutely balked. Why?

I feel that in popular media, ASD is portrayed as a diagnosis which is blameless. Autism support groups, parent groups, blogs, articles, and fundraising abound. There are supports for parents, and children can receive evidence-based treatment (at least in my province). We have specific screening tools in Ontario, for use at the 18 month well child visit, specifically to screen for ASD. And don't get me wrong – rightfully so. Early intervention works and should be promoted. Also, I'm NOT saying parents of children with ASD have it easy. Not at all.

Now I contrast with ADHD. I feel that ADHD is portrayed more as blame-able (i.e. on the parents) and less "real." ADHD is often the butt of jokes or widely derided as an "excuse" for poor behaviour. I do not know of any screening for ADHD that is done in routine well-child visits. I do not see articles or blogs about parenting a child with ADHD. I don't hear about ADHD research fundraising activities. I'm not saying they don't exist. But I do not think that they are as "out there" in popular media.

I am not a pediatrician, nor a psychiatrist, but I understand that both ASD and ADHD are considered neurodevelopmental disorders which arise through an interplay between genetics and "environment" (that lovely catchall for everything from prenatal exposure to substance X to pollutants to diet and so on). I do not think the medical community considers one or the other of these diagnoses to be the parents "fault." But I do think, that deep down (and I am ashamed to say this), I am afraid of my son being diagnosed with ADHD. Afraid of the looks. The blame. The rolled eyes. The label. Afraid of the consequences of starting him on medication – or not doing so. Afraid of possible misdiagnosis and its consequences. Afraid of grandparents finding out and having to deal with the inevitable questioning and doubt. Afraid that I will feel less sympathetic, more frustrated, less supported, more alone. Simply afraid.

I know that my child is who he is, despite any diagnosis or lack thereof. I know that one diagnosis is not "better" than any other. Diagnosis won't change who he is. I want to be clear that I am not saying I want or favour a certain diagnosis for my child. Nor am I implying any judgement of any of your children with these diagnoses, or you! Rather, I write to explore my own reaction to this situation, and to consider the reasons behind it, even though in doing so, I seem to have uncovered my own fears and biases.

What do you think of when you meet a child with ADHD? The child might be a patient, a niece or nephew, a classmate or friend of your child. How does that differ from your feelings when you meet a child with ASD? Are you more or less sympathetic? Understanding? Willing to forgive / accept / work with the child's behaviours?

I want to parent my child as best as I can. I want what we all want – I want him to feel loved, confident, and secure. I want him to thrive. I know that the letters won't change who he is. Despite my fears, I also know that the letters won't change who I see, as his mother: a very unique and special child with some incredible talents and some special challenges to work with. The question is: will the letters change what others see?


  1. Those symptoms are also typical of your average gifted kid. Not saying there is a misdiagnosis, but with just those symptoms listed adhd wouldn't be my first guess, especially with the ability to focus. They describe my daughter, but she doesn't have the other symptoms of adhd.

    1. Adding:
      Giftedness has its own sets of complications, and it is often misdiagnosed as ADHD, especially if the kid is grossly underplaced in school. It's hard to sit still when you're bored to death, and it's easy for a GP to prescribe medication.

      That doesn't mean that the extreme of giftedness is ADHD. They are two different things that have overlapping symptoms and many things that work for getting a gifted kid to calm down often don't work for getting an ADHD kid to calm down (ex. challenging the kid). And a kid can be both gifted and have ADHD (meaning they're 2e or twice exceptional), and the ADHD often has to be treated prior to the giftedness being treated.

      I am in no way saying that the OP's kid has been misdiagnosed. BUT if she copied that paragraph of symptoms on the Davidson's Gifted forum, she'd get a resounding, "absolutely, here's what we did that helped." Presumably she had a specialist go through with the full set of diagnostic tools and there's other symptoms not listed that were deciding factors in the diagnosis. If she hasn't seen a specialist, then she should and should also look into other possible diagnoses (the spirited child book below is also good, and there's another book on "overexcitabilities"-- those would suggest that there's not actually a problem with that list of "symptoms"!) to make sure the kid is getting appropriate treatment rather than inappropriate.

  2. Sounds like the perfect description of a "spirited child". Have you read that book?

  3. I am currently waiting to get my kid into a developmental ped. It seems like the initial screening tools are focused on ADHD. Having read some general literature out there about ADHD and ASD, I'm not so sure I agree with them being separate spheres, maybe different spots on the continuum of human behavior. Also non-drug approaches focused on sensory challenges should help no matter which diagnosis it is. Stimulants probably aren't the right choice though.

  4. I like what J.B. says about them just being different spots on a continuum. I have a relative with two boys, one diagnoses ASD, the other ADHD, but they could be two peas in a pod. I think it's just luck of the draw, one doctor's inclination over another that they have different labels.

  5. I think you have it backwards. When I meet a kid with ADHD, I think that there's a reasonable chance that it's misdiagnosed because it's such a common diagnosis these days, but generally I think that they're just a rambunctious kid and will probably do fine with medications and proper treatment.  But if I hear that a kid has an autism spectrum disorder, I tend to think that they have major problems, and I probably would be a little bit more wary of them. I think that diagnosis has much more stigma attached to it.

    For the record, when I typed "parenting a child" into Google, it auto completed with ADHD before ASD. So I'm thinking you could probably find a few articles on it.

  6. I don't tend to think of a value judgment being put on either set of letters. What does differ, though, is the associated set of accommodations/modifications/interventions that are helpful and successful at school, at home, and with peers. Either way, he's still your lovable kid who wrote a song about how much he loves you, but the correct set of letters would help you know what to do from here.

    I'm curious as to how the ADHD was diagnosed - Interview? Checklist? A good comprehensive neuropsychological evaluation with a clinician who knows about ADHD and ASD (and other things) and can do some hypothesis testing to rule in/out possible diagnoses using direct assessment? There IS direct assessment to be done for both sets of letters.

    Lesley Hart, Yale Academic Skills Clinic

  7. Hi KC, Let me share our experience as it may pertain to yours. You know my son has a diagnosis of ASD. Our pediatrician first suspected it in him at age 18 months, due to lack of eye contact and no words at all. So we had an evaluation done in the developmental pediatrics dept. of a major children's specialty hospital. We waited months for the day-long evaluation, which was conducted by a developmental pediatrician and a child psychologist team. It was hours and hours. Our son, who was 2 1/2 at the time, handled it pretty well, because they handled HIM very well. You don't mention how the diagnosis of ADHD was made for your son. I know that in our case, we were in a lot of denial about an autism spectrum diagnosis; we did NOT want to hear it. So the super-specialized, rigorous eval was what we needed to be able to accept this and move forward. In your case, sounds like you need to know you have the right diagnosis, because you are clearly not buying the ADHD dx. He may be on the spectrum, and Asperger's sounds possible. The main reasons to have the correct diagnosis made, in my mind, is to 1) better understand how to relate to him and guide him in life and 2) qualify for the services that will help your son function in the world. In our case, our son is almost five, and has been in a special needs program through our public school system since age three. He's receiving speech and occupational therapy. He's doing great. But the major thing is we now "belong" to a diverse group of families who can share their experiences and lessons learned with us, so we can better deal with our son. His behavior is not as mysterious and confusing anymore. Challenging at times, but we know we're not alone; there are myriad resources, groups, websites, books, et cetera. Lastly, after reading some of these comments, I have to share: one of the most difficult and painful things about managing a child with autism is managing the people who doubt the diagnosis, who say things like "Oh, my kid does that sometimes, it's totally normal" or, "He's such a happy/funny/lovable kid, are you SURE he has autism?" or "Why make a big deal out of the fact that he's different? It doesn't matter if he bites his toenails in public, leave him be" et cetera...Even better are the ones who start lecturing us about some diet that will cure him… I haven't learned how to educate these folks, but I do try to turn them off, and move on. Again, my goal is to help my son to function in the world- to THRIVE in the world. Sounds like that's what you're doing too. Hope this helps KC, and do keep us posted.

  8. There are tests for ADHD that can paint a pretty good picture of the challenges for a true ADHD mind. And stimulants CAN help, if the diagnosis is solid. Lots of people fight against them but I've seen them do really good things for kids life experiences.

    I'm part of a long line of ADHD minds. Parents, siblings, partner, kids, you name it, we've got it. It doesn't look the same in all of us but there are enough common threads to identify it as a family heritage. As such, I've been prepping my kids for their interaction with the world from this unique perspective for a long time. I *understand* my kids and their struggles and that makes a big difference.

    It sounds to me like you are struggling to understand your child and worrying about how he will be received, whether a diagnosis is going to make things better or harder for him. You want to minimize his pain, and that is exactly how you should be feeling. I don't take offense at all to your assumptions about ADHD and your process of worrying about your son. You have started a thoughtful process that can only help him. Good for you.

    I will tell you, hyper focus on topics of interest, poor reading of social cues (though not an inability or disinterest in socializing) and sensory issues are possible expressions of ADHD. Whatever his diagnosis, there are ways to support transitions, encourage social interactions and manage sensory issues. You and your family need and deserve all the help you can get.

    Find an excellent developmental pediatrician, get lots of testing done - ask really specific questions and find community support - in real life or online. As for what relatives and classmates and whoever else thinks - I find it helpful to think of my kids as if they were patients - their diagnosis is PHI - I don't reveal unless it is necessary and I request explicit confidentiality from people I tell and I get permission from my kids as often as I can. No one needs to know this information to teach, befriend or love your son, if you don't want them to know. What they do need are strategies and advice, that is going to be more valuable to him than a label.

  9. And to follow up about the comment on giftedness...Your Child's Brain has a couple of good overview chapters on ADHD and autism. And traits that can be beneficial can become maladaptive at some point. Which is where the disorders come in.

    My concern about stimulants is that when ADHD is diagnosed there is a tendency to offer stimulants. Which may not reflect the complexity of what was described. Particularly when anxiety is mixed in (our case, not sure if in the OPs) I'd want to look at that very very carefully.

  10. I don't do pediatrics. My patients start at age 12. But we have enough adolescents to see lots of ADD/ADHD and an occasional Asperger's. For me, your first paragraph spells Aspergeri's. But I agree with the prior comments that you need a developmental pediatrician to sort out. Is this Asperger's with some ADHD on top, or is it Asperger's with just some personality quirks. You need the diagnosis to work on proper management. From your description I don't see stimulants as an answer.
    In our community I see the reverse of attitudes you describe. Asperger's is accepted as a legitimate biological entity with support of 5K races for research money, individualized educational plans, etc. On the other hand, ADD/ADHD is looked at a little skeptically as a diagnosis that the parents see giving their kids an edge academically, especially with stimulant medication.

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  12. I don't do pediatrics. My patients start at age 12. But we have enough adolescents to see lots of ADD and ADHD. And an occasional Asperger's. To me, your first paragraph spells Asperger's. I agree with the other comments, that you need a developmental pediatrician to sort out: Asperger's with some ADHD on top, or Asperger's with just some personality quirks on top. In any case, I don't see stimulants as the immediate answer.
    In reference to which is more acceptable: in our community Asperger's is seen as a biologic origin disease, with community support of 5K charity races for research and individualized educational plans. ADD/ADHD is looked at a little skeptically as a diagnosis sometimes sought after by parents to give their kids an academic edge with extra time for exams, special quiet rooms for exams, and stimulant medication.


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