why are self-diagnosed aspies considered "posers?"

Post Reply New Topic

I too went over 10 years without payed work during my 20's and early 30's-- indeed there was a time when even going to the neighborhood grocery store was a major expedition. One of our neighbors once asked me if my car ran -- he never saw it gone, and it was always in the exact same spot.

In trying to make it all about 20s and 30s you skipped over the 37% of adults never having had paid employment statistic, which is another one which matters.

Very much so.

I'm glad you found those statistics, too.

As long as SSI and similar disability payments are the only real benefit for diagnosis, and there exists real downsides with insurance and general stigma, those who are able to hold a job are unlikely to seek official diagnosis. As long as they are not being diagnosed, they are not being counted, and the data the statistics are being drawn on is skewed towards those who have not been able to reliably hold a job. If the data is skewed, the statistics will also be skewed.

I'm not making it all about 20s and 30s. I'm saying that being on the spectrum and being able to eventually learn the skills needed so that one is able to find a job and hold it isn't as rare as the statistics in that study indicate. I'm not saying it's easy by any means, just that it isn't that rare.

SSI and such are far from the only benefits for diagnosis. I would not suggest to anyone getting diagnosed only for attempting to get on SSI. It's not a reasonable process or reasonable likelihood of occurring. That's not a reasonable statement to be making at all.

Immediate benefits that come off the top of my head:
-Therapy: mental health (counselors/psychotherapists that are specialized in ASDs), occupational therapy
-Accommodations: Accommodation for work make it far easier to get through the job
-Learning about yourself
-Acknowledgement that you're disabled (relevant for lots of random things, immediately relevant to me is my kitty - she's an Emotional Support Animal, a type of animal only relevant to disabled people) (note: only relevant if your impairments are to a disabling level)

I paused for a full 30 seconds, so my immediate list stops there.

I do not know of a single person who has been diagnosed because of wanting to get monetary benefits, including on these forums. If you know otherwise, feel free to point them out, but I have seen no evidence of this being the case.

Can you give me anything that actually backs this up? Multiple studies give the 80-90% range for at least underemployment - not being able to provide their own living expenses. I've not seen anyone give a large scale study which supports another number, rather than citing 50 random undiagnosed people (I'm okay with using self-diagnosed people, I'm not okay with using 50 random people from the internet and trying to compare this to 7000 people.)


It's not only about learning social skills or how to interview. It's also about people having executive functioning challenges. It's also about people having sensory issues. It's about not being able to get a job, not being able to do a job, not being able to interact with people at the job, not being able to take care of yourself at home around the job, and so on. Skills will get better. Skills won't take care of all of these things. This means that as people age, some people will get more employable if they are working on getting more employable, and others won't. It depends on the exact details of the disability. Those who get more employable don't always understand that others have a completely different type of autism.


Personally, I'm young, I'm 23. And I am quite possibly never employable and we know that now. It's not because of my social skills - though those would require work for me to be able to get any job. It's not because of my executive functioning issues. It's because of my sensory issues. My sensory issues aren't something we can train away with age. We're doing everything we can, and everything we can has a high probability of not being enough for me to work in most work environments.

I don't know how many other people are like me, but there are others. Every one like me, it doesn't matter how high functioning we look, immediately we drop into not getting jobs.

Now go onto executive functioning as their primary issue.

Now add on people who can't interview at all.

Now add on discrimination, which is illegal but still happens.

And as you go like that, the percentages of unemployment of underemployment go up pretty quickly.

Actually, it's pretty hard to get SSI or SSDI on the basis of an ASD diagnosis.

Tuttle is citing one of the farthest-reaching studies of the adult autistic population that has ever been conducted, and was done by - among other things - sending paperwork to thousands of house holds (I forget the exact number) and screening those who responded for autism, until they had identified what appeared to be all of the autistic people in the population sampled (which came to ~1%), and of those people, who were in the population undiagnosed before this study, the results are as Tuttle described:



I also think you're missing what statistics represent if you think that people not being included means that the stats somehow can't reflect them. This isn't true. The larger your sample size, the closer to reflecting those not included in the study your study actually is. If the research to date reflects very low employment rates for autistic people all over the spectrum, then undiagnosed autistic adults in the general population who are not covered in this study are not going to fall outside those statistics. It is significantly more likely that these undiagnosed adults will fit those statistics fairly closely. It's easy to pick and choose those who do have jobs, etc. But until last year, I was part of that undiagnosed adult population, and I haven't worked in about 13 years now, and prior to that I had ~18 months of employment from 1991 until 1999, spread across three jobs, with significant gaps between each job.



I have sensory issues and the executive functioning. I have never been hired for a job I've interviewed for and I have taken classes on how to interview. The consequence is I don't work. And on those rare occasions I get a job, I end up spending entirely too much time avoiding and decompressing from overload by hiding in the restroom, no matter what the job is. Executive function is a big issue as well, although if I have good structure and routine, it can be dealt with to some extent.

-Therapy: mental health (counselors/psychotherapists that are specialized in ASDs), occupational therapy

Councelors or anything else specializing in ASDs, especially in older female adults, are a bit thin on the ground here. I've been to plenty of what is available over the years, mostly found them a waste of time, probably because they were trying to psychoanalyze biochemical imbalances and unusual brain wiring. If I do find one that specializes in ASDs, I'll certainly give them a chance to see what they can do (starting with an official diagnosis), but I'm not holding my breath waiting on that.

-Accommodations: Accommodation for work make it far easier to get through the job

Accommodations are available without droping the ASD bomb on the boss, and incurring the stigma attached. -- I've been using headphones and an MP3 player for years -- long before I even suspected I may be on the spectrum. They help me not be distracted by all the commotion in the office.

I've never seen demanding accommodations as a good idea -- yes, they have to give them to you, and they can't just fire you for having a disability, but there is no way to keep them from finding other reasons to let you go. If they do it, it is difficult to prove in court.

-Learning about yourself

I've been studying myself for decades -- trying to unravel the problems and hack solutions to them. Fortunately, thanks to Amazon, books are available here. I'm currently reading Nick Dubin's Asperger Syndrome and Anxiety: A Guide to Successful Stress Management, and highly recommend it! It is the best book on anxiety I've yet encountered -- probably because is addresses the root issues.

-Acknowledgement that you're disabled (relevant for lots of random things, immediately relevant to me is my kitty - she's an Emotional Support Animal, a type of animal only relevant to disabled people) (note: only relevant if your impairments are to a disabling level)

One does not need an ASD diagnosis to get a prescription for an Emotional Support Animal. My existing anxiety and depression history should be sufficient should I ever have trouble keeping my cat.

While I don't know of anyone who sought diagnosis solely for SSI, I do know one young lady who was diagnosed and is on SSI -- the plan was that this would open the way for additional help that might aid her in developing social and life skills, but her mother has been unable to find anything for her.

[quote="] why are self-diagnosed aspies considered "posers?"
[/quote]

Because psyche industry trolls who want their cash, intimidate the non diagnosed toward formal diagnosis, then drug treatment.

Its all about the money

There are two major factors I'm basing this on. First, the study done in South Korea that found 1 in 38 was on the spectrum:

"Published online today in the American Journal of Psychiatry, the study reports on about 55,000 children ages 7 to 12 years in a South Korean community, including those enrolled in special education services and a disability registry, as well as children enrolled in general education schools. All children were systematically assessed using multiple clinical evaluations. This method unmasked cases that could have gone unnoticed. More than two-thirds of the ASD cases in the study were found in the mainstream school population, unrecognized and untreated." [http://news.yale.edu/2011/05/09/prevalence-autism-south-korea-estimated-1-38-children]

I seriously doubt that South Korea is any more autistic than the rest of the world, but we are still only finding 1 in 88?!?!? Unless South Korea has an unusual problem with Autism, we are not finding all the Auties and Aspies here even now. These spectrumites that are not being diagnosed are not reflected in the statistics.

The other factor I base this on is the fact that my best friend and I each have followed the pattern I describe. By our mid 30s we found work-arounds and were able to support our families when needed. She is now going on disability due to other issues, no doubt aggravated by the stress of being among people so much. I am again looking for a job while finding my way back from the brink of burnout. My father also followed a similar pattern -- he finally went back to school in his early 30's and became an engineer. Supporting a family was not easy, and he was eventually diagnosed with anxiety and depression, but he kept working.

Now look at those studies with a critical eye. What do they really say?



The sampling is not a random sampling of all people, it is only those who are already diagnosed. Automatically this excludes anyone who was not diagnosed. If you keep using this criteria for inclusion in the sampling for multiple studies you are likely to keep getting similar results -- the number of people studied isn't the issue.

Next we look at those who never had a paid job. I'd really love to see an age breakdown of that group -- it clearly isn't 37% of the elderly with their life complete and unchangeable. The odds are overwhelming that many, if not most of this 37% are young, since the pool of the diagnosed is also weighted towards the young. The 41% of those over 55 who spent 10 years without a job also is not as informative as it seems -- WHEN did they spend 10 years without a job? Was it the past 10 years, or was it from ages 16 to 26?

The 15% currently working is also automatically sampling in favor of those working being under-reported -- This was a survey that people filled out and sent back. People who are working, esp those on the spectrum, are far less likely to have the time and energy to bother than those who are not working. Did they report the percentage of survey forms that were not sent back? Those who did not respond may well have just had better things to do. That something might well have been a paying job.

The 59% who say they don't know if they can ever get a job is a measure of despair, not a true measure of employabilty. Again, this is 59% of a sampling that had been selected for being diagnosed and having nothing better to do than fill out the survey and return it.

I'm not saying that everyone can work. I'm saying that the statistics, as they currently stand, are misleading.

In regards to the sensory issues you mention -- You don't need to be able to work in "most environments". You only need to find an environment you can work with. It would also help to work your strengths to a level where an employer wants you badly enough to work with your sensitivities to get you on board and keep you there. Look for things you can do with a strength that would enable you to work more independently, doing the majority of the work in an environment of your choosing. Look at Temple Grandin and her portfolio.

You are still very young. From what I've seen and experienced 21 NT years is roughly equal to 35 Aspie years. A great deal can happen between now and age 35. Your sensory issues may naturally resolve themselves sufficiently so that the work environment is tolerable. A medication may be found that helps that process along, or at least resolves the issues while it is in effect. You could hone one of your special interests to a point where a boss is willing to tailor your environment to your needs. You could hone a special interest to a point where you can make a living consulting as Temple Grandin has.

Then even that motivation for diagnosis is removed. It would indeed be far easier to get SSI based on the chronic depression and anxiety that often goes with being on the spectrum.

What does that leave? Stand up and be counted?

I'm very interested to read the National Autistic Society study you've been discussing.

Could someone post its' title and authors or a link to it please.

Many thanks

So you're saying you value data from 3 people more than thousands because you are one of those 3, and know the other two. The data does not support this.



If what Verdandi said is true, that's not true. I didn't read all of it, I just jumped to the numbers. I find it even more interesting if they explicitly included previously undiagnosed people.


It is not an attack to say that people are diagnosed because we're disabled. It's not an attack on you to say that we're autistic, we're disabled, and we are usually unemployed or underemployed. We're not just a little weird or a little off. We have to put a lot of effort into things that NTs don't. We have to put in a lot of effort to attempt to possibly get a job. Just because you managed that with your particular autistic traits, doesn't mean that a majority of us can without help - overall what has been shown is a high unemployment rate, underemployment in many those who work, the people with strong full time employment being ones who that has to do with special interests, and how verbal someone is or otherwise how high functioning they look when they're young not having a high correlation with "success" as they age.

It doesn't mean we're not trying to admit reality. It also doesn't mean we're trying to beg off the government if we're diagnosed, or that we're just being immature.

I am young. I have a lot of time ahead of me that I might be able to succeed in. You have no clue what types of challenges I need to work around, and truthfully, I cannot expect to do it. That doesn't mean I'm not trying - I'm putting more effort in than people realize. Yet, most people on these forums even, if they were thrown into my body would have no clue how to cope (judging by what my therapist has told me).

But that doesn't mean that's the case for everyone. That doesn't mean Verdandi is suddenly in her 20s instead of her 40s. That doesn't mean that the 30 year old I know who's never held a job is doing worse than he is. That doesn't mean people who've never gotten help and had to try to go on their own are supposed to have figured it all out because you did.

You personally have succeeded despite your impairments because yours have allowed you to succeed as you aged. My boyfriend's in that category, where while he is impaired, aging has a noticeable effect on his ability to succeed - he managed to have his first driving lesson yesterday from his mom in the driveway at age 27. That doesn't change what the statistics say. You don't seem to be admitting reality here. None of the studies agree with you.




Here is where I'm getting numbers. I've not looked for more detailed data. I just looked for one thing that said 80-90% unemployment or underemployment because I'd seen those numbers multiple places.

What they found is that only 15% of autistic adults had full time paid employment, but when given enough support in a period of 3 years they could find jobs for 70% of them. It's not that we're not employable, its that we need a lot of help to get and keep the jobs.

Thanks Tuttle that's great, this discussion has fascinated me and I'm going to have a quick hunt to see if I can find any further academic research, then I might post further on this once I've had a chance to look it up.

In the meantime just to give some clarification, but not to weigh on the debate of how likely autistic people are or are not to work - I want to do some more resarch before I comment on this...here is some further info on the methodology of the study.

Apologies I'm about to get slightly pedantic now - social statistics are an interest of mine...

The study in question was done by an independent researcher for the National Autistic Society, as such it is not an academic research study that has been independently peer reviewed, but a study commissioned by an interest group - but that does not mean it is a bad study at all, just not subject to the checking by academic peers which academic studies get (this can be both a good and bad thing - but I think mainly a good thing).

If you go to page 37 of the methodology of the report available here
http://www.autism.org.uk/Get-involved/50th-birthday/Survey-report.aspx
(which I got and downloaded from the link Tuttle gave) you find the following info:-

In total just under 3000 people with autism completed the survey in February 2012 (with roughly half being over 18 and roughly half under 18). There were also 5535 carers who complete the survey. All people who completed the survey were supporters of the National Autistic Society (NAS) who were emailed and invited to complete it online.

The 37% who have never been employed refers to over 16s (numbers for the sample who are 16 plus) - I assuming this is just the people who have autism who responded and does not included number from the carers survyed based on people they might be caring for

However, at the most conservative estimate, this does means that the results on working relate to something over 1500 people who were supporters of the National Autistic Society who have autism.

That is a significant enough number to get statistically significant results.

There may however be some bias in the sample.
- For example I do not know if supported of the NAS are more or less likely to be people who with AS who work or not - this could skew results
- I do not know the the age break down or gender mix of the sample is as it is not specified in the report - again this can skew results.

The only 15% of adults with autism working, does not come from this study, it comes from another study in 2008 [Rosenblatt, M. (2008). I Exist: The message from adults with autism in England. London: NAS]. You'll find that here:-
http://www.autism.org.uk/TDAA

This was done with 1,179 adults with autism in 2007 - again likely to be enough to be statistically significant (see p45 of the England report at the link just above).

The participants were recruited by:-
"The questionnaire was distributed by a variety of means, including being sent to National Autistic Society (NAS) members and organisations on the NAS Autism Services Directory and being available to complete online via the NAS website." So there may be some bias as in the 2012 survey above.

Since my curiosity is now piqued - I will have a quick hunt to see if there are any academic studies on this - and post back if I find them (this might not be til Monday though...)

I was undiagnosed for 60years - always knew I was different from most everyone around me - Once referred to myself as a geekie - geek for years - Figured out that I fit the definition of Asperger's 10+ years ago - would still be undiagnosed if not for the fact that my son had a problem with depression that lead us to a psychologist who was himself on the spectrum. My brother who is just Asper as I am is still undiagnosed - One of my sisters daughters and her son show unmistakable signs of Asperger's all remain undiagnosed adults. I have friends at a Linux users group that are definitely on the spectrum - yet undiagnosed. Add to this the number of misdiagnoses I have heard about - we have is a real mess here in this community.

as I see it somewhere between 70 to 90% of all Asperger's are undiagnosed - in my opinion to demand a diagnosis before accepting someone as Aspie is foolish beyond belief. Think about it for a bit - We may be the only group in the world to demand the often unsupported opinion of someone outside our group that you are one of us before you can be one of us. If we are to stand up and demand fair treatment we must find and include all of our kind as much as possible into our fold for strength comes in numbers and clearness of effort.

So Let me say -- I see you Aspie - I accept you as Aspie.

We have a wonderful opportunity coming our way -- the "Professionals" are about to abandon the term Asperger's, I say that we seize the term for our own use - that we strip away the terms syndrome and disability from it and use it to describe our community of people - that goes well beyond the narrow medical health definitions and includes all like us.