Autism is a Neurodevelopmental Disorder: Do you know what that means?

Although this blog is devoted to the topic of developmental phonological disorders, readers who follow my tweet feed might notice that I retweet information about autism. I have a professional interest in autism because it falls into the category of neurodevelopmental disorder as does phonological disorder. I have a personal interest as well because I am a parent of a young person “on the spectrum” as we say — I don’t consider myself to be an expert on the science of autism but I have a certain expertise nonetheless.

As a parent I find the endless stream of articles describing “hopeful treatments” to be interesting and irritating at the same time. There have been many recently as randomized control trial methodology has become more common in the field. Medical Daily proclaims the “power of group therapy” describing Hardan et al’s study in the Journal of Child Psychology and Psychiatry. Descriptions of Amy Wetherby’s study go so far as to tell us that it is possible to “curb or stop the symptoms of autism”. There was wide dissemination of a Lancet study claiming that early intervention would prevent autism even though there were no statistically significant effects in this trial with infants whose risk of autism was somewhat uncertain.

Now, don’t get me wrong. I actually think that all of the treatments described here are very good treatments, the best we have at the moment. It is just that I can’t quite figure out what it is that the journalists and researchers and publishers think we should be hopeful for. What does it mean to “curb or stop autism symptoms” anyway? The articles and the press releases are all so carefully written that it is difficult to accuse anyone of overstating their claims but maybe we should be concerned about what is not said rather than parsing the modifiers that are interspersed with the claims that are made in the headlines.

So let me say what I think is missing from these press releases. The thing about autism is that it is a neurodevelopmental disorder. That means that autism is DEVELOPMENTAL – you can no more cure autism than you can cure neurotypical development. Every parent struggles to help their child meet the challenges of everyday life but in the case of autism the struggle is much, much harder. Why is it harder? Well, that’s the NEURO part. A really important concept in brain development is experience expectancy. The neurotypical brain develops in a way that allows it to learn from and adapt to the changing environment that the child encounters as it grows older. This brain development requires very specific inputs from that environment in order to develop in this way. The relationship between brain development and experience with the environment is completely interdependent. Children with autism do not experience the environment like other children however even when they receive typical environmental inputs; furthermore, their brains tend to not develop in ways that help the child adapt to the changing environments and new challenges that all children face as they grow older. All the way through development there are these mismatches between what the brain is prepared to handle, the environment that the person is experiencing and the developmental challenges that the person is expected to surmount.

The studies that are reported with such fanfare in the media report outcomes that are measured exactly at the end of interventions that last for a matter of months. I believe that they help the children cope with the current challenge and they probably help the child and parent prepare for the next one coming up. How much hope they should offer for the longer term future is questionable. For the parent participant I hope they show that if you can win one battle, you are likely to win the next one — as long as you can maintain your stamina there is hope there — but don’t let down your guard because there be dragons ahead!

Recently there was a study in the media that did address the developmental nature of autism: this Canadian study published in JAMA Psychiatry described trajectories for children between the ages of 4 and 6 for autism symptoms and adaptive functioning. It is fascinating because it suggests that the predictors of outcomes for autism symptoms may be biological (e.g., female sex) whereas the predictors of outcomes for adaptive function may be environmental (e.g., early diagnosis leading presumably to earlier intervention) although this is complete conjecture on my part. What the study does show clearly is that autism symptoms and adaptive function are not coupled together. What I have found as my daughter has become an adult is that she has absolutely no patience with any attempt to change her autism symptoms —she very aggressively expects the rest of the world to adapt to those! But she works actively to adapt to the environment to meet her own needs for work and companionship and an acceptable level of anxiety and in that she is very successful.

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4 Comments

  1. One of my children is diagnosed with ASD/Bipolar/(formerly highly gifted/)LD. What has upset (and fascinated) me has been the decline in my child’s cognitive abilities across ages 5-18, as assessed with full psychoeducational testing on four occasions. With earlier, well-targeted interventions, as your article suggests, perhaps my child’s cognitive functioning could have been maintained? We’ll never know.
    My son’s atypical neurodevelopment, as evidenced by very poor (formally assessed) adaptive functioning skills, makes future planning problematic. Now 18 years old, we do not know when our son will realize his full developmental potential. Will he be 20? 22? 25?
    I relate well to your comment about parental ‘stamina’. I expect that outcomes for ASD individuals are, in part, determined by the ability of parents, caregivers and involved professionals to continuously adapt or modify the environment for the ASD child, in response to their immediate needs, and all the while gently eliciting increasingly adaptive behaviours from the child. Eventually (and with extraordinary effort and support) we strive for our ASD children to assume some of that work themselves – as you mention your daughter has. 🙂
    Hope – for me – implies some sense of direction. It would have been helpful to have had a better sense of how my child’s development was likely to unfold from the outset. His mental health diagnosis is certainly a complicating factor.

    Reply
    • Thank you very much for your comment. I agree that a sense of direction provides hope and that is where parent support groups are so important. In the 80s there were very few opportunities to imagine the future for our children but now children like my daughter and your son provide guideposts of a sort. Take care, Susan

      Reply
  2. Ellisha Blackburn

     /  February 5, 2015

    Hi Susan,
    As an SLP, parent of a child with ASD, and appreciative follower of your work, my ears perked up readily to hear what you have to say about autism as a neurodevelopmental disorder. This past year, at the SAC conference in Ottawa, where I heard you present, I also heard Megan Hodge talk eloquently about how we, as SLPs, need to think as neurodevelopmentalists. It was a watershed moment for me. Until that point, I hadn’t understood what all of the “neurodevelopmental soft signs” (drooling, motor coordination difficulties, as well as stuttering) could really help me see, especially for my son- that his brain is truly wired uniquely. This was incredibly comforting to me as a mother prone to self-blaming. While I fully recognize that environment (my parenting) has and continues to play a crucial role in his development, I clearly saw the role his brain was playing. Sometimes a limiting one, depending how we look at it. But what a fascinating brain he has! What a treasure this kid is. What a unique human being.

    Your daughter sounds like a determined young woman. And someone who gives hope to me, as a mom of a kid who has similar challenges.

    Thank you so much for sharing. I want to think more about what you have written. I very much appreciate your insights.

    Ellisha

    Reply
    • Dear Ellisha, thank you so much for your comment and for sharing about your son. I am happy to hear that you appreciate his unique brain. My daughter’s unique view of the world is also a source of joy to me. Even the small insights like suddenly realizing that she is right when she thinks that the other young people who are wearing pants with holes in the knees (in -20 weather) are weird whereas she is sensibly wearing a ski mask from November though March! I also appreciate hearing that you found Megan’s presentation and mine helpful at the SAC conference. Take care, Susan

      Reply

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