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On the Road to Recovery

Author Jayne Lytel has spent the last seven years focused on one thing: helping her son "recover" from an autism spectrum disorder. Maybe the official term recovery wasn't what she had in mind at the start. But every hour, every bit of research, every decision about his therapies were designed to help him live an "independent" life. Now, she's waiting to hear whether he has, in fact, recovered from a disease that doctors insist most children don't officially "recover" from. Her story is running today on the cover of The Washington Post's Health section.

Lytel's efforts are just what any parent of any child with a disease or diagnosis would do: Fight to find cures in a world where we like to label.

Several years ago, when my youngest son started showing signs of asthma, doctors were hesitant to label him an asthmatic. Once he's labeled, it'll be there forever, one doctor told me. And clearly, that's not what she considered a good thing. Her point was proven during one hospital visit. I told the emergency room that he was asthmatic, and they immediately tried to treat him with "asthma" medicines that have never worked on him. It took a bit of arguing for me to change their direction to the correct medicines for him.

Certainly, there are still some diseases for which we don't have cures and need to find them -- juvenile diabetes and cystic fibrosis come to mind immediately. But how can it be that our kids are labeled autistic, ADD, ADHD, learning disabled, at early ages with no chance of escaping the label? Can't some -- many even -- overcome early childhood diagnoses to live normal, independent lives without the labels?

I know my little asthmatic one is on track to do just that. Earlier this month, his pulmonologist told us that it looks like he will "recover" from this in a few more years when his trachea has grown more. Why can't the same be said for children with other kinds of issues that are being treated?

If you'd like to talk more about raising autistic children, Lytel and autism expert Dr. Fred R. Volkmar of the Child Study Center at the Yale School of Medicine will be live today at noon.

By Stacey Garfinkle |  November 18, 2008; 7:00 AM ET  | Category:  Child Development , Health
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People put too much emphasis on labels. The label is not important. It is just helpful to get the treatment your child needs. Really, a label doesn't necessarily change your child's accomplishments.

Posted by: foamgnome | November 18, 2008 9:10 AM | Report abuse

I think there is a real difference between a child outgrowing asthma because of physical changes as he grows older, and a child benefiting from his mother's extensive efforts and multiple therapies being able to overcome many of the symptoms of autism. I read the article, and it sounded to me that he wasn't "cured" so much as had overcome most of his symptoms. That is still remakable, and shows what early intervention can do. Especially for children with normal intelligence, which it sounds like he has. However, it's tough to know what the future holds for him. When his social circles become more complicated as he ages, will he be able to adapt? I'm curious to know that for all of the children mentioned in the study in the article.

Posted by: touch_stone13 | November 18, 2008 10:59 AM | Report abuse

Interesting live chat. With our HFA 16-y-o, we've seen remarkable progress in the last 6 months or so. He's still autistic, but now everyone sees the potential for him to lead an independent life and be self-supporting. I always knew it was possible, but it was hard to be that lone voice in the early years.

Like Ms. Lytel's son, our boy has been mainsteamed in school starting with 4th grade. He's now an 11th grader, and it was *very* gratifying to have the IEP team at our last meeting pushing DH and me to go for the academic track, and planning for his CAHSEE and a h.s. diploma instead of the 'certificate'. Graduating will open a lot more doors for him.

Different kids will respond differently to the same treatments. Autism is a 'spectrum' disorder, and what's worked with my son wouldn't necessarily work with another child in a different place on the spectrum. We parents all just keep trying to find what works for our own kid, and some of us get lucky and stumble along in the right direction.

Here's to learning more and future progress!

Posted by: SueMc | November 18, 2008 1:07 PM | Report abuse

For me, the label is what's helping my son get treatment. He's on the spectrum with a diagnosis of PDD NOS (pervasive developmental disorder not otherwise specified). We've seen remarkable progress in the past six months and remain hopeful.

Will he ever be "normal"? As far as I'm concerned, that's a city in Illinois.


Posted by: FairlingtonBlade | November 18, 2008 3:37 PM | Report abuse

hi -- i am one of two sibs -- one of us was diagnosed as being on the autistic spectrum at young age before age 3 -- the other was not dxed till age 20. diagnosis for the early-dxed one varied between classical autism and something like pdd-nos -- not sure if that label existed at the time as this was ca. 1990. asperger disorder didnt exist as a dx back then but might have been the "right" "label" for both of us.

long story short both of us had social problems throughout childhood and into early adulthood -- adaptation was more difficult overall for the non-dxed one, also more academic and study skills issues, attention deficit issues -- both of us were very bright as kids so for non-dxed one was considered "cute" "quirky" but totally friendless, totally disorganized unable to keep track of work or remember schedules -- catch buses ontime etc. total social isolation.

*however* both of us have seen a late phase of surprising and immense social growth starting around age 16.

while it would not be accurate to say we are "cured" or totally indistinguishable from people who were normall from the beginning -- it is still true that if you didnt know our earlier histories you might not initially guess that autism spectrum explains alot of our problems. both of us have gone to very good colleges and graduated from high school with high grades -- mainly thanks to being bright no thanks to difficulties managing academics, time, social skills.

but as time has passed we have learned a lot about what it means to be part of the human race instead of feeling like aliens for the first 16-18 yrs of life -- the learning process is ongiong and well still be learning at age 30 40 50 -- but the point is that now at ages 21-25 we are learning to "fake it" and some social skills are slowly becoming second nature -- slowly yes but surely.

we will never be typical humans -- both of us struggle with basics like bill paying on time, buying food regularly, sleeping and waking regularly, work assignments and organizational skills -- we were not taught these things or treated for attention or executive function issues at all and they remain problems -- we rely on the goodness of family and friends very much right now -- my roommate is kind enough to be the household bill payer as long as i clean the bathrooms -- but if you met us today on the street superficially we would seem like normal people which is remarkable in many ways. social isolation still an issue in some ways but has improved drastically from even 3, 5 yrs back -- continues to improve -- we have friends and good relationships with many people.

all of which is to say -- yes our mother did alot of crying then and does now sometimes too -- but she sees us now as adults albeit ones who have matured more slowly and will need more time -- there is a saying that alot of HFA/AS children and adults are 2/3 their actual age in terms of functional life skills and social abilities -- this seems reasonable -- tho we are 21-25 age range we are more like average 14-17 yr olds being forced to live on our own and manage things -- we can do it but often we may slip -- forget a bill to pay or do the laundry sometimes, put food in the fridge.

it is okay -- at the same time we have done pretty good in our jobs so far -- computer science and physics. i earn my own finanicial support.

but the point is -- we are getting there -- so mama and papa keep hope -- sometimes things improve when you least expect it. we were a mess as children -- still a little bit of a mess -- but both of us can someday marry and be mama or papa to little weirdos of our own -- who may be very gifted as programmers or engineers but need to be helped to buy groceries on time till they are 30 -- so be it -- the world has room for us too and always has had room.

Posted by: fonkyou | November 18, 2008 7:18 PM | Report abuse

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