Tuesday, May 11, 2010

What happens to autistic kids when they grow up?




What happens to autistic kids when they grow up? Does a kid with substantial verbal impairment have a decent shot at growing up to have a family or a job? Does quality of life get better, worse, or stay the same? What kinds of support or services do middle aged people with autism need? What do they get? Are they happy?

Psychiatrist William McMahon of the University of Utah is embarking on an ambitious three-year study to get some of those answers. His pilot project should give parents real cause for hope – ten percent of his pilot group went from being very impaired children to pretty successful adults over a twenty-five year span. A significant number of disabled autistic kids grew up to have families, jobs and a self-described decent quality of life. Most people in the pilot study got better – not worse – with age.

This study had its genesis in the 1980s when Dr. McMahon worked with Dr. Ed Ritvo to study several hundred young people with autism. This population was recruited in Utah and included 241 people with the more severe DSM III autism, and 130 people with less severe autism; more in line with current DSM IV criteria.

The 371 people ranged in age from 3 to 21. The original study ran over several years from the mid to late 1980s.

Today, Dr. McMahon is tracking down those original participants in hopes that they will join him in his next phase of research, to learn what happens to autistic people as we age. These adults – ranging from 30 to 50 years in age – will give us the most comprehensive picture to date of how autism impacts people from childhood through middle age. His pilot study – completed last year – suggests he’ll be able to find about 75% of the original group.

His original study population contained the full range of autistic affect, from non verbal people to verbal Aspergians like me. I can’t wait to see what he finds out. I feel like I’ve gotten better as I’ve aged. For me, coping skills have masked most of my autistic disabilities. Is that the rule or the exception? His pilot study did find others like me, with lifelong improvement and good quality of adult life. However, he also found people who plateaued in their teen years, and a few people who actually declined with age.

What’s the norm? And what can we do to shift from childhood disability toward adult success? I hope Dr. McMahon’s work yields insights that we can use for today’s kids. Can we figure out what made some autistic people really successful while others kind of floundered, even though they started from similar places? I hope so.

Dr. McMahon also hopes to identify autistic subtypes and perhaps gain some insight into how those groups may benefit from different approaches to life success. We’ve all heard the adage that what works for you may not work for me, but no one ever studied the reasons why.

Quality of life and social success is a big focus of this research, but they’re also examining general health and other autism related conditions – the stuff doctors call co-morbid conditions. Does a kid with intolerance for wheat or milk outgrow that, or does it linger for life?

I wish we could answer broader health questions too. Are autistic people more at risk for cancer, diabetes, or heart disease? Unfortunately, this sample size is too small for definitive answers in that regard. But it’s a start, and a very important piece of work.

I’ve spoken publicly about the need for this kind of research, and I’m pleased that Autism Speaks is supporting Dr. McMahon with a $450,000 grant. This is an example of important and valuable research that will lead to tangible benefits for people living with autism today. This work will surely lead to other studies; a few answers and a lot more questions. As a middle aged person with autism this research is certainly close to my heart. I hope you will support it too.

Here's a link to Dr. McMahon at the University of Utah

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.  The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay may give you food for thought, actually printing and eating it may make you sick.

24 comments:

Yvonne said...

John having been diagnosed at 56 and this year, I am 59, I can say Senior aspies are worthy of discussion. I studied theatre which taught me skills and was an athlete which helped me with team work. My psychiatrist stated that "I shot from the hip in the dark and did everything right" to have a great life as an aspie. It does not mean it was easy for me, but there are many things parents can do to help their children to prepare for adulthood. Senior issues of AS people are a part of our organization. Yvonne Mikulencak, Executive Director of the Asperger Women Association.

Perfect Parents said...

Hi
Thanks for a great blog,we will follow the outcome of the study with interest, as we have a wonderfully autistic 7 year old son.
For a different perspective on autism check out our blog at http://anotherdaywithautism.blogspot.com
Any comments would be greatly appreciated.
Take care and laugh a little

Margaret said...

I was diagnosed with Asperger's Syndrome 13 months ago and struggle with people who call me a liar for saying that I have autism. Others say things like, "Oh, you're autistic, that's why you don't understand anything."
Your book (and hopefully this study) give me hope as I finish high school and move on to college.

jess said...

The crux of it for me is this ...

'Dr. McMahon also hopes to identify autistic subtypes and perhaps gain some insight into how those groups may benefit from different approaches to life success.'

I think an awful lot of us will be waiting to hear about the 'different approaches' and their relative success rates. As we muddle through creating our children's individual patchworks of treatments and educational plans, we are still guided mostly by our gut.

Thank you for sharing.

Gina said...

Can't wait to hear the outcome. I have found that my students with ASD do better once they get to middle school because they are more likely to find friends who are similar to themselves. Beyond that, I've always wondered.

Rose Wade said...

At the age of 7, my son was diagnosed with ASD in 2004. He'll soon be 13 and with the support of myself, his teachers, para-educators, speech therapists, etc., he has progressed very well. He is still socially awkward, continuing to have difficulty relating to other children his age.

I am eager to see the results of Dr. McMahon's study. However, the study is also 30 years old. I would assume with the rise in awareness of the range of Autism Spectrum Disorders, and increased availability of treatments, that the participants in the study have no doubt improved in 30 years.

I look forward to continuing research. I often think of how my son will fare in his adult life. He has gained skills to help guide his behaviors, and he progresses academically. However, despite all of our efforts, he shows little progress adapting socially. I feel for him every day that I take him to school, knowing that he is continually bullied and taunted for being different.

My fear is that autism, while part of who he is, will continue to rob him of opportunities for friendships through his adult life.

I do hope Dr McMahon's study includes insights on this.

Helen S. said...

Please forgive me in advance as my post may be perceived as a shameless plug for my brother's film, "Dad's in Heaven with Nixon," The film chronicles my mother's struggle 50 years ago to ensure as normal a life possible for my youngest brother Christopher.It was a long road for all of us but, due in large part to my mother's fierce determination, Christopher now lives independently in New Haven and has two jobs. He is happy and has a thriving career as an artist. There is tremendous hope! That said, I do wish AS would give this film the attention it deserves on the AS website!!
Thanks,
Helen Murray

Gina said...

I have a 10 year Aspie boy. I love him to death! I'm lucky to have such a special Angel in my life. I often worry about what his life will be like in middle school and high school and so on. Mainly because of the shameless bullies out there. I am looking forward to reading up on Dr. McMahon's findings. I'm very hopeful. I was very excited to find your blog. Please know that what you're doing here is wonderful! You give parents like me hope. Thanks!

As for Helen,
"Dad's in Heaven with Nixon" sounds great. Don't consider it a shameless plug. Consider it sharing valuable information with the rest of our community. Best wishes to your brother's film and your family. ;)

Gina said...

I have a 10 year Aspie boy. I love him to death! I'm lucky to have such a special Angel in my life. I often worry about what his life will be like in middle school and high school and so on. Mainly because of the shameless bullies out there. I am looking forward to reading up on Dr. McMahon's findings. I'm very hopeful. I was very excited to find your blog. Please know that what you're doing here is wonderful! You give parents like me hope. Thanks!

As for Helen,
"Dad's in Heaven with Nixon" sounds great. Don't consider it a shameless plug. Consider it sharing valuable information with the rest of our community. Best wishes to your brother's film and your family. ;)

r.b. said...

As autism adults begin to be heard, understood, and judged less often, it's great to see that even those without a voice have wonderful minds. This study sounds as if it can give greater understanding to people with autism who suffer from "behavioral problems" far far less than "communication problems".

We put such a tremendous burden on the shoulders of our little ones because we can't figure them out. It's not surprising that many grow up to be successful...they have learned that life isn't easy early. I also look forward to the results of this study!!

Susan Levy said...

I'd love to learn more about this study. I'm a principal of a school that incorporates RDI in our cirriculum, and we support our families to achieve a quality of life for their children. My 16 year old son attends, and I have been involved in a Relationship Development Intervention (RDI) program for the last year. There has been little research in this area, so I'm very happy to learn about this.

Steve Borgman said...

I'm so looking forward to hearing the results. But even more important, I believe, is what trends they can find in terms of what helped people be successful. For example, Yvonne's experience of being an athlete and being in acting.

Slamdunk said...

Great post and I am also interested in learning what is discovered.

Thanks.

Susan Levy said...

One thing that I think is not too good - John writes it should give people hope that 10% of the original participants have been successful. That to me sounds like a terribly low number to be considered a success.

astridvanwoerkom said...

I'm looking forward to see what comes from this study. It would be interesting to learn about the variety of adult outcomes and how people can best be helped to cope with variosu problems common in autism.

If a main conclusion is that people tend to do better as they age, I'm (ASD diagnosed age 20 in 2007) so far the exception, as I started having my most significant problems in adulthood as developmental expectations increased.

Crystal Hendrix said...

Thanks for sharing with me, or I should all of us. My hubby is an asperigian like you and has grown up fine and so is my oldest son, who is currently 7. I do think that he will be able to lead a "normal" life.

I currently live in Utah, and am apart of the ARGE program from Autism Speaks, I wonder if we could join the study....more the merrier right?

John Elder Robison said...

Susan, you misunderstood the significance of the 10%. The fact that 10% of a population of autistic children with significant verbal and other impairments actually got jobs, married, and raised kids is indeed strikingly hopeful. At the same time, a large portion of the remaining 90% achieved lesser but still significant improvements. It was only a minority that stood still or regressed.

If you are a parent asking the question, "What are the chances for my kid to get better?" that is hopeful indeed.

Tammy said...

My son is 11 n nonverbal. I worry all the time, about what his future will be like. I worry about his ability to take care of himself or if a day may come that he will need to be put in an institution. I hope not. I hope that family will take care of him.

Kate said...

How fascinating - thank you for sharing. I can't wait to hear the results!

I added this post to "My Friday Five" on my blog - a weekly wrap-up of the top blog posts I've encountered this week.

Luciana e Inêz said...

Olá,
Acabei de ler seu livro e ele ajudou-me a esclarecer muito sobre a forma de pensar e agir de pessoas dentro do espectro autista. Sou artesã e psicopedagoga, trabalho na AMA-PI (Associação de Amigos dos Autistas em Teresina-Pi - Brasil), somos uma entidade filantrópica,mas bastante carente em recursos materiais; toda informação nos é muito preciosa. Nosso caminho é longo e tortuoso, mas fazemos o que nos é possível para dar qualidade de vida ao nossos pacientes. Obrigada a nos ajudar,com suas informações, na nossa jornada.
Luciana Luz

Robin said...

While the 10% comment may seem low I can only imagine that 20 years from now, our current children with EI (and the expanded diagnostic criteria) will have much higher than that even. It would be nice to get an identifiable attribute that contributes to this success (and as an aspie(?) mom to an ASD child I'd love to hear more about genetics behind it!)

from the mother of an autistic teen said...

HI!. MY NAME IS ILEANA MORALES, I HAVE A 17 YEAR OLD AUTISTIC TEEN, HIS NAME IS DAVID.HE WAS DIAGNOSED AT THE AGE OF 7-.UNTIL HE WAS 10 YEARS OLD, ALL HE SAID WAS MAMA, PAPA AND "TOY". SOMETHING HAPPENED WHEN HE TURNED 11, HE BECAME HIGH FUNCTIONING, HE WOULDN'T STOP TALKING ( AND WE WERE SO HAPPY ABOUT THAT), HE WAS NO LONGER SHY,HE STARTED DOING GREAT AT SCHOOL, I WAS SO HAPPY.-BUT WHEN HE TURNED 16 ( AND THE HORMONES KICKED IN) EVERYTHING CHANGED. HE WANTED FRIENDS, A GIRLFRIEND, HE TRIED TO MAKE FRIENDS AT SCHOOL. THAT'S WHEN HE REALIZED HE WAS DIFFERENT . DAVID TURNED FROM A SWEET BOY TO AN AGGRESSIVE TEENAGER, HE EVEN STARTED HURTING HIMSELF.HE WOULD HIT HIMSELF WIYH ANYTHING HE COULD FIND.( he never did this before). HE CRYED AND SAY:"MOM I HAVE NO FRIENDS, I'LL NEVER HAVE A GRILFRIEND".HE WAS FRUSTRATED AND SO WAS I. I WAS DESPERATE. I ENROLLED HIM IN THE BEST BUDDIES PROGRAM.BUT AFTER EVERY OUTING, HE WOULD COME HOME MORE DEPRESSED, HE WOULD SAY: "REGULAR KIDS DON'T WANT TO TALK TO ME". I DIDN'T KNOW WHAT TO DO.- ONE DAY, TALKING TO ROSA (THE MOTHER OF ONE OF DAVIDS CLASSMATES) WE DECIDED TO OPEN A CLUB. ROSA CELEBRATED HER DAUGHTER MELISSA, SWEET SIXTEEN PARTY, THEY WERE SO HAPPY, THEY WERE TALKING ABOUT WHAT THEY WERE GOING TO WEAR, EVEN THE TEACHERS AT SCHOOL WERE TEACHING THEM HOW TO DANCE, THEY HAD A BLAST. THE FOLLOWING FRIDAY I TOOK MY VAN, AND ROSA AND I TOOK 7 HIGH FUNCTIONING TEENS TO "HANG OUT", WE WENT TO THE MOVIES ( THIS WAS THE FIRST TIME THEY WENT TO THE MOVIES WITH FRIENDS), THEY WOULDN'T STOP TALKING AND LAUGHING; THEY WERE BEING TEENAGERS. AND ROSA AND I WERE CRYING OF HAPPINESS.NOW WE GO OUT EVERY FRIDAY. DAVID AND HIS FRIENDS ARE NOT AGGRESSIVE ANYMORE; THEY ARE TOO BUSY PLANNING THE NEXT FRIDAY OUTING.
THERE IS A LOT OF HELP FOR LITTLE KIDS BUT THEY ARE FORGETTING THAT OUR KIDS ARE BECOMING TEENAGERS WITH ALL OF THEIR TEENS NEEDS..- OUR TEENS NEED HELP, THEY LACK SOCIAL SKILLS, THEY HAVE NO FRIENDS THEY FEEL LONELY. THEY GET FRUSTRATED AND BECOME AGGRESSIVE. AS THE MOTHER OF AN AUTISTIC TEEN, I CAN TELL YOU THAT THEY SUFFER AND SO DO WE.
I WANT TO SHARE THIS WITH EVERY MOTHER. OUR LITTLE CLUB IS WORKING, WE WOULD LIKE TO MAKE IT GROW. WE WOULD LIKE TO SEE 100'S OF TEENS HAVING FUN....JUST BEING TEENAGERS

from the mother of an autistic teen said...

HI!. MY NAME IS ILEANA MORALES, I HAVE A 17 YEAR OLD AUTISTIC TEEN, HIS NAME IS DAVID.HE WAS DIAGNOSED AT THE AGE OF 7-.UNTIL HE WAS 10 YEARS OLD, ALL HE SAID WAS MAMA, PAPA AND "TOY". SOMETHING HAPPENED WHEN HE TURNED 11, HE BECAME HIGH FUNCTIONING, HE WOULDN'T STOP TALKING ( AND WE WERE SO HAPPY ABOUT THAT), HE WAS NO LONGER SHY,HE STARTED DOING GREAT AT SCHOOL, I WAS SO HAPPY.-BUT WHEN HE TURNED 16 ( AND THE HORMONES KICKED IN) EVERYTHING CHANGED. HE WANTED FRIENDS, A GIRLFRIEND, HE TRIED TO MAKE FRIENDS AT SCHOOL. THAT'S WHEN HE REALIZED HE WAS DIFFERENT . DAVID TURNED FROM A SWEET BOY TO AN AGGRESSIVE TEENAGER, HE EVEN STARTED HURTING HIMSELF. HE CRYED AND SAY:"MOM I HAVE NO FRIENDS, I'LL NEVER HAVE A GRILFRIEND".HE WAS FRUSTRATED AND SO WAS I. I WAS DESPERATE. I ENROLLED HIM IN THE BEST BUDDIES PROGRAM.BUT AFTER EVERY OUTING, HE WOULD COME HOME MORE DEPRESSED, HE WOULD SAY: "REGULAR KIDS DON'T WANT TO TALK TO ME". I DIDN'T KNOW WHAT TO DO.- ONE DAY, TALKING TO ROSA (THE MOTHER OF ONE OF DAVIDS CLASSMATES) WE DECIDED TO OPEN A CLUB. ROSA CELEBRATED HER DAUGHTER MELISSA, SWEET SIXTEEN PARTY, THEY WERE SO HAPPY, THEY WERE TALKING ABOUT WHAT THEY WERE GOING TO WEAR, EVEN THE TEACHERS AT SCHOOL WERE TEACHING THEM HOW TO DANCE, THEY HAD A BLAST. THE FOLLOWING FRIDAY I TOOK MY VAN, AND ROSA AND I TOOK 7 HIGH FUNCTIONING TEENS TO "HANG OUT", WE WENT TO THE MOVIES ( THIS WAS THE FIRST TIME THEY WENT TO THE MOVIES WITH FRIENDS), THEY WOULDN'T STOP TALKING AND LAUGHING; THEY WERE BEING TEENAGERS. AND ROSA AND I WERE CRYING OF HAPPINESS.NOW WE GO OUT EVERY FRIDAY. DAVID AND HIS FRIENDS ARE NOT AGGRESSIVE ANYMORE; THEY ARE TOO BUSY PLANNING THE NEXT FRIDAY OUTING.
THERE IS A LOT OF HELP FOR LITTLE KIDS BUT THEY ARE FORGETTING THAT OUR KIDS ARE BECOMING TEENAGERS WITH ALL OF THEIR TEENS NEEDS..- OUR TEENS NEED HELP, THEY LACK SOCIAL SKILLS, THEY HAVE NO FRIENDS THEY FEEL LONELY. THEY GET FRUSTRATED AND BECOME AGGRESSIVE. AS THE MOTHER OF AN AUTISTIC TEEN, I CAN TELL YOU THAT THEY SUFFER AND SO DO WE.
I WANT TO SHARE THIS WITH EVERY MOTHER. OUR LITTLE CLUB IS WORKING, WE WOULD LIKE TO MAKE IT GROW. WE WOULD LIKE TO SEE 100'S OF TEENS HAVING FUN....JUST BEING TEENAGERS

Michael Jonas said...

One of the biggest challenges in providing services to people with an autism spectrum disorder is that the needs change from person to person.Public schools are required to provide services to people with an autism spectrum disorder until they reach age 22, according to the National Alliance on Mental Illness. After that, the responsibility shifts to the person with autism and family members to find educational or employment opportunities and appropriate living arrangements.