Accurate Studies on Adults with HFA/Aspergers?

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Hello everyone,

I am the N/T mother of a child suspected of having PPD-Nos (we are in the process of confirming this dx). My husband - who suspects he himself has mild, un-dx Aspergers - and I were talking about how people are almost expecting us to completely freak out and lose it over the news of our son. Are we concerned? Yes. Will we do what we can to help him? Yes. Do we feel autism/Asperger's means life ends at 3 and we should give up on him? No.

Accordingly, it seems a lot of the "why aren't you freaking out and acting like your kid has terminal cancer" comes from studies that paint a very dire future. So ... a long winded way of asking ... has anyone come across any accurate studies on adults with HFA/Aspergers? My understanding is many are skewed given the relatively recent "expansion" of the spectrum and the lack of resources that were available when folks our age were kids. Anyway, if anyone has something to share that would be great.

Thank you!

In what way has the 'spectrum' recently 'expanded'? The only change I notice of note is the growing number of middle-age adults who, because of the Internet, are discovering the name of a handicap that we've been living with for decades.

My point being, that you are correct in not giving in to the ignorant hysteria foisted on the public by organizations like Autism Speaks. AS/HFA is a disability, to be sure, but as you say, far from a terminal illness. A great many of us have pursued long term careers and raised families only knowing we were 'a bit odd.' That's not to say we weren't presented with huge obstacles, but we didn't spend our lives institutionalized or traveling with the circus, either.

Thank you for your reply, and please forgive me for my ignorance on the idea of "expansion". My understanding - interpretted as "expansion" - is that there is greater awareness of the condition across the milder end of the spectrum. To your point, middle aged adults, such as my husband, noting - hmmm ... that explains a lot vs. having the condition identified, and ideally addressed and assisted at an earlier age.

And thank you also for your comment about the fact that despite its challenges, AS/HFA does not equate to game over. My son is not even 3 yet, not even formally diagnosed, and already people are underestimating him. Therefore, I wanted to see if I could find other sources of information beyond Autism Speaks to see how I can help him, while not underestimating him and his future.

Actually, the PDD-NOS diagnosis merely means that a child has some, but not all, of the characteristics of autism. Even a full out autism diagnosis isn't always such a dire outcome as it used to be, although it is still full of challenges. With either diagnosis, some children come around with much help and special therapy, and there are some that don't improve as much.

I have a 24 year old son who would definitely have fit under the PDD-NOS umbrella had he been diagnosed, and a 14 year old son who WAS diagnosed with PDD-NOS. The oldest son, with no therapy or help, has gone on to college, has dated, has married, retains friends, and just got accepted to a highly reputed grad program. He is very funny, has many friends, and retains friends. He is still quirky, and obsesses on some things (lucky for him, his obsession is also his career choice), but he is doing very well, after getting off to a very rocky start as a child.

The 14 year old has had more challenges, and continues to do so -- but they are more related to inattentive ADD problems than the PDD-NOS. He's had some therapy, and some special classes at school -- and some very wonderful and effective speech therapy for pragmatic language skills -- but now is in all regular ed classes. He's doing fairly well socially, and fairly well academically. There is no need to grieve -- although if you want to you, you should, as you are facing a change of expectations more than anything -- BUT, the road with a PDD-NOS child is still a positive road. I am constantly surprised by the things that my son CAN do, vs. what he has a rough time with. Most things are a positive with him.

Since autism is a spectrum disorder that can affect individuals from a few very mild quirks to significant impairment, the studies you seek, as predictors of how any one person will succeed, may not exist, since there is such a huge variability in each individual experience. You might find Temple Grandin's Thinking in Pictures and John Elder Robison's Look Me in the Eye, autobiographies of two individuals with HFA, interesting. I haven't read it yet, but Tony Attwood has a well respected book on Asperger's: The Complete Guide to Asperger's Syndrome.

Actually, PDD-NOS just means "atypical". It can be very severe if, for example, the number of traits is not high enough for an autism diagnosis, but the traits that are present are very severe. It's also the diagnosis you'd use for a classic autistic who had learned to speak and hold conversations. It can be milder than AS; it can also be used as a diagnosis for people who have complicating factors like some other disability or an unknown childhood history.

So, the idea that PDD-NOS=Mild is not actually true. PDD-NOS has no set definition; it's just the category to put atypical cases into. Some of these atypical cases are mild; others are not. Most likely your son got the diagnosis because he is very young, and the specific presentation of his ASD is not yet known.

Regarding outcome studies--Unfortunately, there haven't been any done yet, at least none that I know of. The expansion in autism diagnoses to include children with the less obvious forms of autism has occurred recently enough that there are hardly any adults over the age of twenty-five who were diagnosed with milder forms of AS or autism as children.

You may simply tell your friends that you have been talking to people with autism online, and that you have come to believe that being different will not ruin your son's life because so many other people are just as different, and living just fine, thank you very much!

Hi Callista, thank you for your reply. I too suspected that such studies don't exist, but figured this forum would know if they did.

In re: to our son, I should have clarified that while he will likely be getting a PDD-Nos label in the coming months due to a pragmatic/conversational language delay, mild auditory sensitivities & fine motor delays, and questions around whether he is simply very shy/slow to warm or has a true social deficit, all signs IMHO point to a AS label in his future.

Thanks again!

In reply to Callista, PDD-NOS can also refer to people where not only are the traits they have very severe, but their lack of the other traits isn't because they wouldn't otherwise have them, but because they are so severely impaired that they are unable to carry out the activities required for meeting several of the criteria. (I always think when people who insist their kids are the most severely impaired on earth because they have an autism diagnosis and they think PDD-NOS has to mean milder... like "Gee, don't you guys realize that in order to qualify for an autism diagnosis you are required to have skills that some people lack?!?!")

We have a son that we are wondering about. But at this point haven't gone for a diagnosis. We are wondering too if it is simply a maturity level and the fact that the schools now a days push these kids to limits that we feel exceed their expected maturity.

The teacher pointed something out about him and when I mentioned it to the MD he said "What does she expect he's 9 years old" and then he went on to say "I bet she has never raised boys." Interesting comment from a physician I respect.

So I always wonder about rushing to get a "reason", if he had a diagnosis it wouldn't surprise me but at the same time I don't know if we would do anything different then we are doing already to help him.

No, but then again, the diagnosis was only (re)discovered by the 1990's and until then we were only "odd but not autistic".

What i can tell you from reading forums here and elsewhere is this:

Don't expect your kid to be like everyone else move out at 18 and quickly settle into society with a steady job and a boy/girlfriend. Those things are major problems that are not overcome so easily.

As a parent, be openminded, honest and understanding that everyone isn't necessary a social animal and things should go well. For some here on the forums, ASD is a major problem where they cant even get a job, and some others do pretty well. I do not think that genes have the exclusive final word in determining how well adjusted a person with ASD will be, upbringing can also have a significant effect on how a person will turn out - even on an NT.

Ultimately, the job is up to you. I do not have kids and intend to never have any, but i did have honest, openminded and understanding parents and that has helped me alot...

I sincerely wish you good luck, since you are taking the time to research this - which i really respect.

Ichinin - thank you for this.
I sincerely wish you good luck, since you are taking the time to research this - which i really respect.

Ironically, even for the N/T, the model of independence at 18 is less and less of a reality. I had the mother of a college graduate call me once and ask why I did not give her son the job. There is a bigger societal issue going on right now that is hindering all our children - but that is for a separate thread.

Also, my husband and I don't have a preconceived notion of what success is, nor have we ever believed it should look the same for everyone. Probably because we know so many "classically" successful people that are miserable.

That said, we do hope our son can live independently, support himself, and find some peace and happiness in this world without hurting himself or anyone else. If only cause we won't be here forever - as long as we are here though, we will do everything we can to help him.

Koukla, studies of high functioning autism and Asperger's are out there. I've seen them while doing various Google searches, and they don't seem horribly dire, but I don't know them well enough yet to point you to the best ones. Regardless of what the studies say, it's quite likely that your son will be able to live independently and find some peace and happiness, just as many people here have done--especially since he has supportive parents like you.

anbuend, could you explain this better? what activities and what criteria?

you have so many unique insights. i can't help but bombard you with questions.

Autism is not a life sentence, like Autism Speaks says that it is.