Earlier this week news reports presented a study describing children who supposedly “grew out of autism.” There’s been a lot of talk about what really happens, and whether people can “grow out” of being autistic as they get older. The authors of the story call that an “optimal outcome.”
I’ve written this essay in response to the many queries I got, asking for my take on that news. Well, here it is . . .
In my book BE DIFFERENT I describe the process by which we can learn how to compensate for ways autism disables us, and by doing so, emerge in part or in whole from disability.
Psychologists say we learn adaptive strategies, and some of them work very well indeed for those of us with the cognitive resources to make full use of them. I’ve certainly seen how they helped in my own life. I was disabled as a child, but no one would call me disabled today. I’m independent and function, as are many autistic people.
But that’s the thing . . . I’m still autistic. What about the kids in the study?
They ranged in age from teens to twenty-one. All were screened for autism using the gold-standard ADOS tool, and their scores were deemed below the threshold. Yet they too had been disabled as children, and all had received formal autism diagnoses before age five. There were thirty-four of them in the study.
What the study found is that those kids – as they grew up – improved so much in functionality that they no longer qualified for an ASD diagnosis even though they were well above threshold as kids.
The study does not really say “they grew out of being autistic;” rather it says they no longer have diagnosable symptoms. In fact the authors make this same point, saying the people may still have symptoms that escaped detection or were sub-clinical.
We don’t yet have a brain imaging test for autism, so we can’t look in their brains and say how they might have changed. It’s all speculation, but I’ll bet they didn’t change much. I don’t believe you outgrow autistic brain differences.
Yet I do believe we can outgrow autistic disability. The degree to which we succeed varies but most of us get better as we age. In addition, recent studies suggest that our brains may develop in a more typical direction much later in life – even in middle age – and that may help older people like me.
Furthermore, I think this study gives real and legitimate hope to any family raising a kid with autism because it highlights the great improvements that are possible for some of us. If you have a five year old with autism, I’d think that would be very comforting to read.
At the same time, we should be careful not to read too much into this. As the authors say, the kids who emerged most fully were relatively mildly affected to begin with, and they started out with good IQ scores. Kids who start out more disabled may progress just as far, but their different starting point might still leave them with significant disability as adults.
I’ll offer another point of perspective. All the same tools used for the kids in this study have been used on me. I’ve been tested repeatedly with the most recent round being last August. In that ADOS screening, I was still above the ASD diagnostic threshold. In the facial recognition tests, I was also well above threshold. In the social function, I was above threshold.
The thirty-four kids in the study therefore tested less disabled than me, and I am not really disabled in daily life. But my differences still show up on the tests. What does that suggest? Some of us do an excellent job of masking disability, especially in middle age.
Hopeful as that sounds - be cautioned! Any of us can suffer setbacks at any time. Successful as I seem, life circumstances could change for me in an instant, and I too could find myself crippled by the same autism that makes me seem exceptional today. The past does not always predict the future, and even though I say we generally get better, there can still be setbacks.
The takeaway from that: Any of us may need supports at any time of life. Even people like me - seemingly independent and successful.
Another takeaway: If my life is a guide, it suggests smart people will fool the testers, while remaining autistic. Using myself as an example, no reasonable psychologist would suggest I should be evaluated for autism if I appeared in his office for depression, marriage counseling, whatever. Yet when I participate in autism studies and am screened by blind evaluators, I come up on the spectrum every time.
And more importantly - when I am tested in some of these cutting edge studies that look for patterns of autism in brain imaging, plasticity, or other "hard" parameters . . . I am in the same autistic group. So my adaptation gets visibly better while the internal differences seem to remain the same.
In my case all the science says I am autistic as always, but it shows less and less the older and wiser I get. My guess is the kids in this study were more mildly affected than me and are examples of the same thing. I have no way to be certain, of course, but that's my suspicion. That's in no way a criticism of the study; just an opinion from a middle aged autistic with some experience of the science.
In the final analysis, I choose to stand by my own phrase: many of us emerge from disability as we get older. Whether we emerge in whole, in part, or whether we go back and forth depends on many things including life circumstances and where we ourselves start out. I've said that for years. While the phrase popularized by this study - outgrowing autism - sounds hopeful, I do not in my heart believe it's real. Looking like everyone else is not the same as outgrowing autism - even when tests don't show disability at that moment.
So what’s the conclusion? Take hope, I say, because I’ve always said we get better with age, and this study affirms it even if I do take issue with its catchphrase. Also take hope because the kids in this study all test BETTER that me, in terms of not having traits of disability, and I’ve done pretty well. At the same time, try to be realistic in your thinking. This study highlights some individuals who adapted remarkably well. Not everyone will succeed to that degree. Be happy with what you are, they are, and we are, knowing life is a never ending process of change and growth and we autistic people are part of it just as you are.
John Elder Robison
PS - - -my newest book - RAISING CUBBY - is coming March 12. Order your copy here