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Autism: What's the Prognosis?

By January 26, 2011

"Your child has an autism spectrum disorder."

Yes, it's scary - but what exactly does it MEAN?  Is it a life sentence or a challenge to overcome?  What are the chances of a cure?

The answers, frustratingly, are always the same: "We really don't know."

While early intervention with intensive behavioral and/or developmental therapy is certainly a good thing, it doesn't guarantee any particular outcome.   Higher functioning children do better overall - but not always.  Alternative therapies such as special diets can be helpful sometimes, for some children - but not for all.

The good news, however, is that many children who are at one point diagnosed with an autism spectrum disorder do improve to the point where they lose the diagnosis.  And many, many adults with autism discover and develop impressive talents, abilities and skills.

Find out more about autism and outcomes:


Comments
January 26, 2011 at 9:22 am
(1) AutismNewsBeat says:

A little perspective is helpful. Neurotypical children also have poor outcomes.

January 26, 2011 at 9:25 am
(2) autism says:

ANB – good point, well made!

Maybe another article could be titled “Birth: What’s the Prognosis?”

Sadly, the final outcome is all too predictable… :-}

Lisa

January 26, 2011 at 12:21 pm
(3) hera says:

I definitely agree with Lisa re the idea that outcomes cannot be foretold by someone else. And I believe in expecting a lot more than doctors or others may say is possible.There are limits that vary from individual to individual, but it is hard to know where these limits really are, unless you do your best to help them succeed despite the limits..And believing someone can do something is often pretty necessary to helping them to succeed.
Not quite so sure however that I agree with ANBs comment ( at least as I interpret it)though.

My understanding is that he (( or she) hey special request here ANB, would you be able to identify your gender please, in the interests of easier pronouns? )feels that similar bad outcomes occur with neurotypical kids.
While it is true that some bad outcomes ; ending up in jail, having mental health issues, having serious physical illness, being addicted to drugs, can happen to people with or without an autism diagnosis,some bad outcomes are unique to severe autism. For example, being institutionalized because you are non verbal and self injurious does not ever happen to neurotypical adults.Drowning because you do not understand water is a danger is not a neurotypcial adult problem. Running in front of a car or on a freeway becasue the lights are pretty and you again don’t understand the danger is again not a neurotypical adult problem either.Pretending that there is no real difference between life with severe autism and neurotypical life gives a very false impression.Maybe it is a soothing thought for some, and I also wish it was true,but unfortunately it is not.

January 26, 2011 at 12:37 pm
(4) Dadvocate says:

A little perspective is indeed helpful. I’d prefer you not sugar coat it. Nearly 80% of people with autism aged 19-30 live with their parents v. 32% of neurotypical young adults. That’s because they are unable to live independently. http://www.autismcenter.org/documents/openingdoorsprint.pdf

I’ve also read that the unemployment rate among adults with general developmental disabilities is estimated to be around 65%, for adults with autism above 80%. Apparently the “talents, abilities, and skills” that “many, many” have developed aren’t being too well rewarded by society at large.

There is a prognosis for a lot of folks on the spectrum and it is not rainbows and unicorns. While some may try to minimize the issue, depression and suicide seem to be fellow travelers with Asperger’s syndrome. For those who have highly impaired communication skills or severe behavioral issues, there is heightened risk of harm from many, many quarters. Yes, some do better and can “lose” the diagnosis.

Some naysayers think this is a natural state of affairs and that “there is nothing to see her folks, keep moving”. I disagree. This is a big problem that is getting bigger daily. My teen is now an “adult” (along with a bunch of peers) and faces a bleak landscape of job and habilitation options, exacerbated by both historic DD advocates who don’t or won’t recognize the approaching wave of autistic adults and think traditional constructs for the Down Syndrome and MR populations can handle autism, as well as the “advocates” who deny that a wave even exists.

April 25, 2011 at 10:43 pm
(5) Lillian Gibbons says:

So true the traditional constructs you mention are not appropriate for high functioning autistic adults. I am now searching for a program for my 21 year old autistic daughter and I am absolutely sick about her prospects. She has attended high functioning programs because we fought to get her the best services all to end up with nothing to go forward with.. Parents and advocates of autism must band together and fight for more for our children. It is unacceptable and I will not send my child into a situation where she will regress rather than progress..

January 26, 2011 at 12:40 pm
(6) autism says:

ANB is a guy.

Re the “bad outcomes” comment, I think it really is important for parents of kids with disabilities to remember that “neurotypical” does not mean the same thing as successful, happy, capable, kind, beloved, healthy, intelligent, well-educated, etc.

It’s not easy to avoid comparing our lives to those of others – but others’ lives aren’t always a bed of roses.

Lisa

January 26, 2011 at 12:59 pm
(7) hera says:

Thanks for the gender id Lisa;from now on you will be “he” , ANB :)
I agree with both DadAdvocates’ comments and your recent one, Lisa; sometimes “kind and loving” are traits that don’t seem to necessarily correspond to “neurotypical”. A great magazine article I read once ( and cried over) called “Perfectly Adam” is about the joys of raising a Downs Syndrome child and the unique perspective he bought into his university educated mothers life;if you can find it, its well worth reading,perhaps even worth a topic post if you find it, and enjoy it too?

January 26, 2011 at 1:19 pm
(8) autism says:

Dadvocate – I’m sorry if you got the impression I was sugar coating. Of course it is harder to live with a lifelong disability than without.

Lisa

January 26, 2011 at 2:08 pm
(9) vmgillen says:

“Outcomes” -a loaded concept, if ever there was one. IMO it is pretentious to plot out the future for your child – and THAT is, again: imo, the basis for a great part of the “grieving the Dx” process.
Flashbacks on the subject: the doctor who, after my daughter was born, told me not to get too attached ’cause these kids only end up in institutions (Dx: Downs) -lesson: the danger of a self-fulfilling prophecy. The T11 para who went through rehab with my son – who was subsequently hit by a car and rendered quad. -lesson: you just don’t know what’s coming down the road. The teachers who would not entertain any decision-making exercises for students with ASD because compliance is the valued outcome they are seeking… -lesson: pre-set outcomes can be limiting. On the other hand, “gate-keepers” who control funding, agencies constructing programs and interventions, et al., are very very dependent on determining outcomes… I submit, however, that any defined “outcome” is virtually meaningless without an ASD etiology…

January 26, 2011 at 2:31 pm
(10) Leila says:

ANB, you have to admit that once the child is diagnosed with autism (or any other lifelong disability) she’s already at a disadvantage compared to the neurotypical child in terms of possible outcomes. It’s true the autistic child can become a future Temple Grandin or Daniel Tammet, but even they didn’t get where they are without major challenges along the way, which are never experienced by the NT people and their families.

We can’t avoid the fact that families of kids diagnosed with autism are faced, very early on, with the possibility that the child may have a very poor outcome, as opposed to parents that will only have a hint of that when the child is in her teen years and having lots of trouble in her life due to her own choices. The fact that our kids are already starting their lives with a huge possibility of a bad outcome without having a choice but being the way they are… It’s a very different story.

I want to be optimistic about my child’s future, I want it really bad, but my feelings change sometimes on a daily basis. Where do we find the balance between accepting the possibility of the worst case scenario – and trying to be okay with it – and keep hoping for the best outcome? How do we prepare for BOTH possibilities without fear? This may be the crux of keeping our sanity/happiness while parenting a developmentally disabled child, so we just can’t avoid digging into these feelings and brush it aside by saying, oh, typical kids can also have terrible outcomes (become criminals, die young, etc).

January 26, 2011 at 4:04 pm
(11) zusia says:

Instead of referring to autistic vs. neurotypical, it may be more helpful to use autistic vs. non-autistic.

The curious element in all this is that the vast majority of autistics continue to improve throughout their lives. Not sure that is true of non-autistics. ;)

January 26, 2011 at 6:24 pm
(12) Emily Malabey says:

The prognosis depends on the individual, response to intervention and access to supports and services in education, and with therapy that has been proven such as OT, PT, DT, SLP, MT, LT, positive behavior therapy and so on.

If a person is helped, and taught, the person can be more independent, productive and successful in life.

Also, prognosis depends on us advocates educating society about Autism.

Let’s also ensure schools are including and supporting students with disabilities, including Autism.

The search for cure and cause is best left to those invested in such research like Autism Speaks and the Autism Society of America.

January 26, 2011 at 6:37 pm
(13) Marc Rosen - Editor of Perspectives: Poetry Concerning Autism and Other Disabilities says:

While I can see why you’d want to leave cause-cure research to SOMEONE, I’d say that too much money is already wasted on it. Over 90% of research dollars get dumped into that black hole, and damn little goes to researching supports and services. If HALF the money was transferred from cause-cure to services, the “problem” would be solved.

July 21, 2011 at 12:45 am
(14) Dove says:

I agree. Money should go for services and actions toward inclusion of those kids and their families. We parents should fight for out kids. Same sex marriages are now legal, acceptable.. why because there are those who raised their voices, united efforts and demanded their rights! Those kids should be equally treated.. No for special classes. They need inclusion in the community, in the school, participation in extra curricular activity. They need to have equal access to jobs, if they can do it, they should get it, just like everyone else. disabilities need to be challenged. We can’t know what is their limit if you do not push to the limit.

January 26, 2011 at 7:29 pm
(15) Emily Malabey says:

Oh, I completely agree. I think there definitely needs to be more accountability and tracking of research funds, especially if public monies are granted for such.

I was just asserting that there are those really interested in research and those of us concerned with direct, practical approaches and actual service to the people who are already right here, right now. If folks are concerned about productivity, prognosis, etc of our fellow citizens who may be different or more vulnerable, then it makes sense to concentrate on these things and let the researches do their thing.

January 26, 2011 at 10:27 pm
(16) hera says:

Zusia, not quite sure I understand? There are children who are not autistic, and are also not neurotypical ( brain damage,agenesis of the corpus collosum, Downs syndrome, genetic disorders etc) who for the purposes of outcomes discussions, probably are looking at outcomes that may be more similar to those with autism than to those who are neurotypical.

There are children who face neurological challenges who do not have an autism diagnosis.They would be correctly described as non autistic, but not be correctly described as neurotypical.

January 26, 2011 at 10:48 pm
(17) Dee says:

This is very helpful to me, a new parent to the ASD world. Everyone says that it’s such a large spectrum and with the diagnosis so early, you just don’t know what to think. You can’t help to think of the future… You can’t help to hope that your child is going to be one of the ones who loses their diagnosis. Or at least I can’t! Everyone says very well meaning things about having to wait and see, and see the kids for where they are now, and of course, this is the key to understanding what they need… but I also need to hope that there is hope for an “optimal outcome”. I’m sure I’m saying it all wrong, what I really mean to say is thank you for this post.

January 27, 2011 at 12:05 am
(18) zusia says:

Hera– I was merely suggesting substituting “non-autistic” for “neurotypical” since many people characterized as “neurotypical” really aren’t.

January 27, 2011 at 7:37 am
(19) Malia says:

Dee, I think you’re saying it very well. For me, the key to reaching a sort of serenity over all the various issues surrounding my son’s diagnosis, was in finding a balance between continuing hope (lifelong hope) and understanding/accepting my son’s (and my own) limitations.

I often think about the Serenity Prayer, which goes – “God, grant me the serenity to accept the things I cannot change, the courage to change those things I can, and the wisdom to know the difference.” I found I’ve spent the most time learning that last part. :D

January 28, 2011 at 1:10 pm
(20) autismnewsbeat says:

Leila, I agree that our kids have greater challenges than NTs. That’s why it’s so important to teach these kids that they are not damaged goods, and that autism is not “vaccine injury” or “mercury poisoning,” but rather a different way of thinking.

January 30, 2011 at 12:01 am
(21) Denise says:

regressive autism is vaccine injury; no other explanation.

January 30, 2011 at 4:12 pm
(22) Malia says:

The subtle propaganda in this statement includes an inference that merely utilizing a “different way of thinking” is the source for the “greater challenges” people with autism face… a premise that is accompanied by some equally profound prejudices as the one contained in the idea that people with autism (or any disability for that matter) are “damaged goods.” If, for example, a person suffers a brain injury from a car accident, they almost certainly would prefer there disability to be ascribed to that injury and not want themselves to be publicly described as facing “greater challenges merely because they utilize a different way of thinking.”

I think what IS so important is that we ALL have the courage to fearlessly seek the truth… and the truth is that we don’t know what causes autism or even for sure if we are not looking for multiple, combined or cumulative effects… or even perhaps effects over multiple generations. Negative indicators in studies are negative indictors, but not proof of positive causes… and until we know the positive causes with certainly, vaccines and other environmental contaminants (or their combined effects) cannot be completely eliminated as contributing factors to the picture.

“A different way of thinking” is no more proven to cause an “autism diagnosis” than vaccines.

January 31, 2011 at 11:11 pm
(23) Eileen says:

It would depend …wouldn’t it??? Autism has many faces.. classic or severe autism is so completely different from high functioning or Asperger’s…isn’t it? So different in fact that that the two shouldn’t really be put under one broad term of autism.. I think the Aspie’s agree on this. :)

February 1, 2011 at 12:28 pm
(24) Katherine Chapman says:

We are all people who want to be loved and belong.
Find what the Autistic child has a passion for and he or she will suceed wit your continue support.
My child who is Autistic and wanted to know why he was different form the other children loves animals, loves to paint, and enjoys making others laugh. He has trouble socially so he creates beautuful art, takes care of your pet or intertain you. My son has many friends at school who always say hi to him even though he has trouble responding verbally. He does make a funny face and gives a big smile. My son says he is happy and enjoys life!
Yes, he is different and knows it but I’ve taught him since he was born his dad and I love him no matter what and we were the happist parents in the world when God granted us this special needs child from above. No it has not been easy at all but it has changed my husband and I into more loving, caring, patient people;and has should us what is really important in life in accepting him for what God has made him to be. God does not make garbage!
We have done every thing possible to grant him a life that he will fit in and at the same time the world needs to fit him in too. All the best treatments were given to our child since he was born. He wil continue to get the best care in his special and at home.
He will be what God wanted him to be.
Our son will have a passion for life as he is so full of them and energy and the interest in art, animals, and intertaining will be the potential fields we will guide him into and support him as long as he needs us. I don’t know for sure what field he will end up in or if he will change his interest through the years, marry. Oh my God, I just sounded like a typical mom or dad.

Thanks for reading.

Kathy

February 1, 2011 at 12:34 pm
(25) Katherine Chapman says:

Please forgive me for my errors in spelling. I have also had many challenges as I call them to over come my whole life too..

Kathy

February 5, 2011 at 9:16 pm
(26) Christine says:

I’m intrigued by Michelle Garcia Winner’s “Social Thinking-Social Communication” profile as a way to approach prognosis. The categories we have had in the DSM IV do not give us much handle on predicting a person’s functioning. Winner proposes that social communication learning styles are a guide to treatment and prognosis, based on her research over 15 years. Here is an article detailing the approach:

http://www.socialthinking.com/images/stories/pdf_files/st_scp_1.26.10.pdf

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