Lack of information on adult outcomes of people with ASDs

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After reading the paper Science, Technology, Engineering, and Mathematics (STEM) Participation Among College Students with an Autism Spectrum Disorder, I came to the realization that not only there is a cliff in services for the autistic population once they get out of K-12 schooling (although the height of the cliff tends to decrease somewhat) there is also a cliff in information about their post-college outcomes. Sometimes it seems as if societal interest in ASDs (Autistic spectrum disorders) is confined to K-12-aged people, probably because the most reliable diagnosis methods are used most at a young age.

As such, I highly suspect that part of unemployment and underemployment statistics we hear about in the context of college graduates may fail to take in account those with disabilities of all kinds, and certainly ASDs. And that people with disabilities may account for a significant share of unemployment or underemployment, although I suspect that it may form a higher share of unemployment than of underemployment.

That said, we also know that some talented college students with ASDs will try their hands at graduate school. I understand (disclaimer: I myself have an ASD, and I hold an advanced degree) that the challenges of ASDs do not stop once they graduate from college, and continue well into graduate school. I also have the impression that the challenges of graduate school are different from that of undergraduates, not only in terms of mental health services but also in terms of autistic needs. And, unfortunately, it seems to be the most poorly understood area of how autism spectrum disorders relate to schooling.

I have one closing remark to make: I understand that autism research funding is, unfortunately, too focused on the biomedical aspect of ASDs, much to the detriment of those who actually have one and of those who try to help them after mandatory education is over. It would seem that societal interest in ASDs is mostly medical in nature, and that many seem interested in finding cures; they may have good intentions but even if a cure was found, the needs of autistic people don't stop there.

Therefore I have a question: Is there an explanation as to why there is so little societal interest in adult outcomes of ASDs (at least when compared to the biomedical aspect)?

Likely for the same reasons that adults with other disabilities don't benefit from the same programs that benefit children - most seem to have a cutoff age of 18 or 21. After that, adults are expected to get their help from relatives, churches, Social Security, or other social welfare programs targeted toward the general population.

It may also be that adults with autism are not as "cute" as children with autism. This may be related to the fact that "cute" animals are overly featured in wildlife rescue programs and commercials.

Disturbing, and not the pedantic logical approach I've come to expect from you, but yeah I can see your point and agree it's a possibility.

To answer the bulk of your question, A350XWB. The main reason why there is so much info out there about K-12 Kids and very little on adults and collage, is because, it the parents that represent the autistic kids and not the autistic kids themselves. Once you are an adult. it up to you to represent yourself. mommy and daddy are gone now and your on your own to defend yourself. This is the main reason why Autism Speaks doesn't represent autistic people. It represents that parents of autistic children.

Even pedantic logic has its limits.

My personal experience with this is more along the lines of homelessness. There are any number of programs to help children, especually disabled children with finding a place to live; but try being an adult with no job and no home and see how many programs there are to help you.

By extension, adults with autism just aren't "cute" enough to inspire sympathy among the general population. No sympathy ... No interest. No interest ... No funding. No funding ... No research. No research ... No information.

I could be wrong, but that's my take on it.

It is probably because society wants a quick, permanent fix, so the focus is on biomedical research to find a cure.

I am an unfunded sociological researcher studying working adults on the autism spectrum. I'm currently analyzing my last study, Autism Disclosure in the Workplace. I'm in the process of getting an IRB for my next one, Autistic Adults in Positions of Power. My disclosure study is taking a long time because my defense was pushed back for a few months. I'm taking advantage and making it really long.

So, to answer your question, there have been a few published studies about autistic adults in the workplace. AROUND FIVE. The best one is an Australian study by Susan Baldwin et al. The problem with that one is that it was Millennials only, and only people diagnosed/who were in specialized education as kids. A commonly misquoted one is a UK study about a vocational program where 90% of the participants were under- or unemployed. <---A VOCATIONAL program. Most people don't use vocational programs, so you have to take that with a grain of salt. The other two had under 10 people in the study, were narratives, and mostly focused on the problems the people were having. There is a fifth that is only about autism in professors, but that's a niche career area.

That's it. I've been looking pretty hard. Any other study out there doesn't trace back to "empirical data" which means they didn't go out and find actual autistic people to talk to.

If anyone wants to know my opinion on why people don't study this like I do, I would say it's 1) lack of interest 2) you would not "make a difference" in this field because autistic adults are mostly doing okay, 3) autistic adults are an extremely suspicious population, therefore hard to work with.

Wasn't there some Swedish study about high unemployment in autistic population?
I wondered specifically which study the 90% figure came from, as it is quoted so much.

I'm unaware of any Swedish study. Is it in English? I'd be in your debt if you could tell me where I could look it up.

But yeah, I'm pretty sure the "90%" number is from "Howlin, Patricia, Jennifer Alcock, and Catherine Burkin. 2005. “An 8 Year Follow-up of a Specialist Supported Employment Service for High-Ability Adults with Autism or Asperger Syndrome.” Autism 9(5):533–49."

Sometimes when I tracked the "90%" number back, this Howlin et al study was ultimately cited. More often than not, no empirical study was cited at all, so the number went back to nothing. That would be like if I said "Blah blah, 75% of people have brown hair..." and then never said where I got that estimation from, or if I said I got it from "Bobby Hill" who in turn was not saying where HE got the number from. This kind of things happens frequently in news articles, and even in academic research. The ultimate authority that keeps each person accountable is themselves. As you can imagine, a lot of people get slack.

There is a practical difficulty of tracking down folks after they graduate--while you might be able to do it for a TV show that can afford to fly a reporter around the country--such funds aren't likely to be available to researchers.

There's also underdiagnosis of adult autism. And the myth that autism is on the rise means people don't realize just how many adult autistics are out there right now without support.

Welp...

There is no help once you turn 21 in the US unless...(in my state once you graduate high school all state funded help stops, but can go up to age 26 if you haven't graduated)

Your parents have really deep pockets and connections to get a job.

And those deep pockets help out in finding people who work with adults with ASD, who are not considered low functioning. There is absolutely nothing in my area for people with Aspergers. Nothing specialized to specifically help them out in the work place.

About work..

People with ASD, who have made it through a college/university with multiple degrees or advance degrees get zippo sympathy from the general public. The NT guy with a GED or high school diploma isn't really feeling it, when person with ASD graduates from an Ivy league university and can't get a job. Oh boo hoo hoo. Somehow you managed to grind through 4+ of university, and why/how can't you figure out to scratch up some employement? Really? Jimmy the meth head manages to hustle every morning at his minimum wage job, with no caseworker holding his hand. He has less brain cells than the ASD person. He makes the magic happen, why aren't you?

What people forget, is the Asperger short comings isn't the book smart stuff, it is all the soft skills that help you get a job. University is a totally different beast. People remotely care if you are successful. The world is all what can you do for me now with the least amount of hassle. Hassle being, I don't want to hear you whine or the rest of the staff whining about you. Or HR whining to me about how the staff whines about you.

For a lot of people, they would rather take the less stellar candidate, who has people skills and doesn't alienated the rest of the staff, then that brilliant ASD person who comes with "baggage", and maybe sues you down the line about discrimination/hostile work environment.

Also...

Until A$ quits pimping ASD, as a white, upper middle class male issue, no one will give a rat's ass about it. I think that is the main problem beside the screaming toddler videos A$ shills out during fund raising time. Kids open wallets. A$ never talks about people of color with limit resources. Their videos show very nice homes (those people are making around a 6 figure income if you look at all the background stuff), very nice white stress out families with newer minivans, and talking about how hard it is to go on vacation with their ASD kids. The person in the hood doesn't give a s**t about all those issues. The lower middle class family who has never been able to take a vacation, not feeling it.

Until people realize Autism doesn't only happen to white people (mostly male) who have more money than them, nothing will get done with help for adults on the upper end of the spectrum. If I'm looking to research an issue, if my preconceived notion is autistic people are either really low or all white guys from affluent families, it isn't a very exciting sounding research project. There might get some interest looking at the lower end of the spectrum, but the higher end is a really hard sell.

Presumably, in the old days, if you were severely autistic, couldn't live independently with a job, couldn't stay with your folks, you ended up in an institution with the mentally disabled. Not that you necessarily belonged there but the system didn't have a proper place to put you and there weren't enough of you to create that proper place. Then they closed the institutions about the time autism started to become a popular diagnoses. Perhaps there is a link there? Are diagnoses more common if it doesn't mean institutionalization? Does a diagnosis count if the parents throw it away and pretend it never happened?

This might be another consideration: Autism as a "spectrum" wasn't really a concept until the 1990s.

Even in the 1980s, there was a narrow definition of autism: the Kanner type exclusively.

In fact, under the DSM III, autism was still called "Infantile Autism."

It is my opinion that autism is on the rise because they have stretched the spectrum. Now quirky people are on it now and it has to cause you an impairment and hold you back. I think because times have changed, it has impacted peoples lives when back in the days they would have just been eccentric and it didn't stop them from living a normal life and having a job and now it does because of what's changed. It would be interested to see where the numbers come from. Do they come from professional diagnoses or from the school diagnoses or both. Does it also include educational autism diagnoses?
Even Temple Grandin has said something about it too about how aspies were just seen as eccentric and now they are disabled because of what's changed. Now social skills are required to get a job so you better have friends. Anyone who is a loner and doesn't have good social skills are seen as "wrong" now when back then they would have just been seen as eccentric. It's like quirky people were accepted then and now they're not anymore. I even think I would have done fine back in the days if I were born in my grandparents time. Plus work was more concrete then than abstract and it was so easy to get jobs then too. Now it's difficult. They have created too many obstacles.

From my personal experience, the diagnoses follows you through childhood. A doctor diagnosed me with autism when I was two and my parents didn't agree with it so they took me to another doctor and even though my new diagnoses was Language disorder and other doctors supported that diagnoses too and not autism, the autism label still followed me and my mom felt it affected my education and the support I was getting. I wonder if diagnoses pops up when they look your kid up when you register them in the school district. I don't know why my parents even kept the papers from that first doctor if they didn't like him and didn't like his diagnostic impression. I do wonder if you just throw it away and not ever show it, if the label is gone. And medical records do get destroyed at the clinic but I don't know how long they keep them for but I don't know for sure if it's still on record elsewhere.

And according to the book Back to Normal by Enrico Gnaulati, the diagnoses follows the child and it impacts their future and career choices and chances of joining the military so apparently even if the parent tosses out the label and sticks their head in the sand about it, the label is still there because it's on record elsewhere and it will come back and bite the child.


But I am betting today if I were born in 2005, I am sure more doctors would say I have autism because of what's change and the fact they stretched the spectrum. In 1997 my psychiatrist said I had an ASD. I can assume by then the spectrum had been stretched more when before I wasn't even on it. But now they have narrowed it again but now I wonder what happens when someone fits enough in the repetitive and restrictive parts but not all three in social communication part? They are in between labels again because to have SCD, it's diagnosed if there are nor restrictive, repetitive behaviors. There's been lot of disputes about the new criteria and even Temple Grandin has disputed it. Even Autism Speaks has SCD on their website. I even hear not all professionals agree with it either.

And one more thing, my son's school district said he qualified for the category ASD and told me it was not a diagnoses. But my mom saw the evaluation papers and didn't agree with it and told me why the label was a bad idea. If I were to toss out the evaluation reports, the IEP label would still be there and it would follow him through school and hurt his career choices and teachers would lower their expectations and treat it like it's a real diagnoses. But as a parent I can fight it which is why I am taking him to a professional to get tested and if he gets a diagnoses, I will bring them back and do another IEP meeting and place him under a appropriate category. My mom always had to fight for my education and write my IEPs.

This.

Do not underestimate the power of concerned mothers.