Thursday, January 17, 2013

Can We Outgrow Autism?




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

25 comments:

Lorigertzauthor said...

John, Your point of view is right on! Like a fingerprint, autism is custom appointed. Every different person gets their own individualized bells and whistles. Studies like these, that are comparative in nature offer hope but can also sometimes be divisive. Each of our children is different. As humans, we are no more likely to be developmentally comparative then we are to be emotionally or psychologically comparative. We can hold hope that our children will grow out of that which causes them distress but they will in fact grow whatever direction they are destined to... and their associations and their understandings will be formed around that growth. In any diagnosis, there must be holistic acceptance and with that comes the exceptionality we witness in just becoming comfortable, forgiving and accepting of what is. These studies give hope. Yes. But,what comparative studies don't take into consideration is that each one of us takes our own path to a destination that suits us best. I can't wait to read Cubby!

Unknown said...

Excellent post. I agree with your views in this area. Adaptability and compensation is real, but what you said about setbacks occurring at any time and needing supports is very important. I have seen it in action in my own family. Thanks for writing this.

Unknown said...

Great post.

Russell said...

Explains why so many don't think I present as a "Classic Autistic". I was 45 when I had someone who had been a Psychologist identify me as being an Aspie.

I've learnt enough adaptive strategies in order to present for the vast majority of the time as "normal"....until I'm stressed, tired or have the loud, bright random happen.

Unknown said...

As we use coping mechanisms meant to make us appear NT, the internal stress grows, the exhaustion builds up and the meltdowns can be spectacular (albeit out of public sight.) The behaviors/skills we learn to "pass" changes others perceptions of us but do not change us. Public life may go better (somewhat) and the NTs feel less threatened but, at the end of the day, we are the same.

JL Wolk said...

Great post, John, I totally agree with all of your thoughts. Lorigertzauthor, I love what you said about autism being "custom appointed". So true. People ask me if my son (20 yrs old) has "outgrown" Asperger's. People who didn't know him in his rhythmic rocking, hand flapping, tantrumming, repetetive vocalization days find it hard to believe he is different. We feel blessed that his differences and his ways of adapting seem to have been mostly positive for his success in life on most levels. Interesting thing though...a young man with Asperger's who my son had never met said to my son after a few minutes of conversation, "You're on the spectrum, aren't you?" So perhaps to neurotypicals someone can seem to have "outgrown" autism", but maybe not to another with autism...

Bev said...

Ah-Ha **
** “Some children who do well become quite independent as adults but have significant anxiety and depression and are sometimes suicidal,” said Dr. Fred Volkmar, the director of the Child Study Center at the Yale University School of Medicine.
That, because of the new study, is about to change.

http://www.nytimes.com/2013/01/17/health/some-with-autism-diagnosis-can-recover-study-finds.html?ref=health&_r=0&pagewanted=print

Dan Stevenson said...

I would have to say I have gotten worse as I got older. When I was a child my parents had to force me out of the house. They made me play with the other kids on our street. By the time I was a teenager I never sought out friends, but I seemed to attract people in school who liked me because I was “different.” My weird sense of humor helped me make friends. While in my twenties, I started hanging out with people who would be considered my fellow outcasts and weirdoes. I sought these people out. Now that I am in my forties, I do whatever I can to avoid any type of social activity. I feel I am worse than when I was a child. Now I have anxiety attacks when I am in large groups of people. It sends me rushing to the bathroom or out of the building to try to prevent my anxiety attack with breathing techniques. My last two jobs were nightmares. I was constantly running to the bathroom to prevent the anxiety attack. Lucky for me my co-workers just thought they were bathroom emergencies. I have unusually high blood pressure, so the anxiety attacks would cause my blood pressure to spike to unusually high levels throughout the day. The ending result caused me to have an enlarged heart and damaged my kidneys. My social anxiety issues have severely decreased my quality of life. Every time I go in for a job interview I start to sweat, stammer, and have bad eye contact. Needless to say I have been jobless since 2009.

Valerie said...

John, i wonder if these kids testing better than you might have to do with the early intervention they likely have been receiving?
Love the post and the comments - all are right on.

Dan Stevenson said...

Early detection of autism is extremely important for a child’s development. I was not diagnosed until I was forty. They thought when I was five that I was learning disabled, so they dumped me in special education. The entire time I told the teachers I was not learning disabled. I received no help for my autism, with the exception to some speech therapy. I asked too many questions so the teacher wanted me medicated. Thank god my parents refused to allow them to dope me up. The teachers kept telling me I was learning disabled and needed to be medicated. When I went in for my evaluation for autism, they found no signs of learning disabilities. I pretty much was under educated when they put me in special education. When I asked to take college prep courses the guidance counselor pretty much laughed at me and said those courses aren’t for special education students. When they told me that I quit studying, there was no point in me doing well. I did well enough to graduate. Without studying my grades would start off in the nineties then end up in the seventies and high sixties. They finally took me out of the special education classes in eleventh grade. I asked to take college prep courses and they told me no, because it was too late for me to take them and I would not be able to handle them because of the special education classes I took before.

Karin Gudrun said...

"Yet I do believe we can outgrow autistic disability." I think you are so right, and I love the way you put it. Very nice. Thank you. Because autistic people have to adapt to their "disabilities" they can compensate in ways that make the disability part "go away" is how I take this.

Karin Gudrun said...
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Karin Gudrun said...
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Kate Mia said...

Neuroplasticity is an awesome identified human adaptive mechanism, however there are no specific brain differences that predict all cases of autism, so it would be difficult to measure the changes in the brain associated with adaptation and potential loss of meeting diagnostic criteria.

The measures used in the study were much more extensive than the ADOS or facial recognition test, as neither of these measures fully assess the symptoms associated with Autism. They also are not identified as accurately measuring either overall severity or potential effective disability in everyday functioning.

However, the VABS measure used assessed functioning levels in daily life. One could not determine their level of disability as compared to your level of disability based on the ADOS and facial recognition tests alone. You could have scored higher on the VABS test if you were assessed, considering your reported levels of daily functioning.

It should be no surprise that people close to these thresholds in childhood, achieve adaptations above the thresholds later in life.

You and Temple Grandhin do not have invisible disabilities; it is obvious in your videos and her videos that both of you are still substantially impaired in non-verbal communication.

There is no indication of this in many other individuals in the public arena claiming a diagnosis who come across as not distinguishable from the general population, however non-verbal impairments are currently not a mandatory requirement for a diagnosis, nor is any measure required to assess Autism other than the DSM5 manual and a qualified professional.

http://sfari.org/news-and-opinion/viewpoint/2012/how-do-we-measure-autism-severity

Kate Mia said...

Correction to previous comment (DSMIV not DSM5). Also, wanted to mention that I enjoy the positive constructive tone of your posts and interaction with others on this site.

John Makin said...

I must agree with your comments at the latter end of your blog, John.
I was born in 1950, before there was any knowledge of Asperger's/autism. I had problems but learned to function reasonably well and went on to have a successful career in IT. At the age of 41, however , I suffered a a bad fall and head injuries while mountaineering.
Fortunately I recovered from the physical injuries but was left with Post Traumatic Stress Disorder.
I tried my best to cope with that but at age 45 I was retired with ill Health, being unable to cope and have been unable to work since.

At the age of 60 I was diagnosed with Aasperger's Syndrome and have since discovered just what you surmised, that the PTSD destroyed many of my coping mechanisms, leaving the Asperger's to come to the fore unchecked.

We do learn coping and some will learn well and that can, of course, in certain individuals, lead to them no longer displaying any symptoms. Yet take those learned mechanisms away and all will be revealed.

Julia Garstecki said...

Excellent post, well said! I wonder if it's better to say we 'grow into' autism?

Jacki Cucinotta said...

Amazing post! I sometimes feel the same way. I have been living with a diagnosis of AS since I was six, and I have seen a lot of ups and downs (and many of the downs were not pleasant). However, most of the downs became less and less apparent as I got older - most likely due to the fact that I have met a great group of people who have helped me along the way and that I did seem to outgrow some of the apparent characteristics of AS by the time I started high school. Sure, that doesn't mean I still display some of the marked characteristics of AS since I do occasionally go off topic in conversations with my friends and sometimes I do get overly excited about some things. As you say throughout the post, it is important to remember that AS never truly goes away; therefore, we should all be appreciative of where we all came from as fellow Aspies. We're a unique group and there's nothing wrong with that!

Yvonne Mikulencak said...

John Excellent article and I will share but I disagree that it is a disorder... Its a different brain operating system which develops differently and the disorder is NT brain operating system which does not know how to raise and AS operating system. Its time to change the worlds attitude and approach to Autism. I was lucky that my mom was AS and raised me as she wanted to be raised..that worked 100%.. Early interception and KNOWLEDGE how to raise an AS child.. Amazing she only had a 5th grade education like my dad (both depression babies ) and were able to do what most doctors and scientists could not do today with an AS child. A MAC operating system is not a disorder of a PC operating system. You just have to learn the language. With parenting today at its lowest...many cant even raise NT children much less a child who requires intelligent, resourceful, accepting and hard working parents.

Vibe Grevsen said...

Thank you for sharing you're views on this.

I can see how disability varies during life and different situations. Someone said AS children often face problems in school, high school, or moving out, when the social demands exceed the capabilities.

I was a lonely, isolated geek with no friends, however I managed well all the way through high school, and no one had second thoughts about my social abilities.
Then for different reasons I went into nursing school, and although I learned a lot in the social department, and consider myself a different person today my difficulties were clearly exposed, and I did not make it through the final round of clinical training.

Although my abilites are way better today than they was as a child, I was hindered by them recently, while I was not in childhood.

The Critical Mom said...

I am near the end of LOOK ME IN THE EYE--this is a fan letter--and love it. I wondered if you'd read Clara Claiborne Parks' books about her autistic daughter, Elly--the first, THE SIEGE, was written before anybody knew anything, and standard medical practice usually involved blaming the cold, "schizophrenogenic" mother--have you noticed how the less the medical profession understands the syndrome, the more $64,000 their words to describe it become?
Well, as I say, this is a fan letter. I also wanted to tell your brother that his books are a delight, and have helped me, but there's no option for e-mail on his website anymore. So, if you will, pass along my admiration for him. I wrote about him on my blog, too.
http://www.thecriticalmom.com

URVASHI AHUJA said...

My 2yr has stopped responding..more happy in his own world...crowd doesn't affect him...he doesn't speak even mama....earlier he used to wave..give flying kisses...he loved watching songs on his ipad ...but now we have been told to take it away from him....he did't make any fuss about it...we are worried...his facial expressions are okay..told its developmental problems....and adviced some training with toys...blocks...but will he come back....what had happened to him suddenly....

URVASHI AHUJA said...

My 2yr old nephew...used to smile..wave fly kisses..ran crazy after his mother..recognized her...but suddenly refuses to reckon with her..can't even say the word mama....does not listen when called...spins around....crowd doesn't affect him...he was v.much into ipad...loved to see his favourite songs...used to smile at hug her grandpa...her 6 yr old sister....worried we approached a psychologist...who diagnosed developmental problem...and we have been told to hide his ipad...which he did't at all fussed abt....my question is what could have happened all of a sudden...will he come back...plz help

00goddess said...

I have autism, but I am much less autistic than I was as a child or even as a young adult. In my case it was not due to ANY outside interventions, but to my own efforts, better nutrition and dietary intervention, and changes in my life circumstances (it's true, extreme stress makes my symptoms a lot worse.) I did not consciously work to change all of my symptoms, only some of them; several others just faded away on their own. I think most people would not think that I have autism, but it's still there.

In my case, these changes (I do think they are improvements) have made my life better. I am still creative and analytical. I'm still me.

D Marcotte said...

I recently had this conversation with my father about my autistic daughter - he was convinced that she was cured. I told him that she will always be autistic, she has just learned skills that help her function effectively with a n NT world. Thanks for a well thought out article.