Self-diagnosis

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The three things Skibum wrote mean almost precisely the same thing, I believe.

To me, as long as the "self-diagnosed" person doesn't say, definitely, "I have autism," then I think it's cool.

I don't believe "self-diagnosed" people besmirch the "purity" of autism.

I know I'm sounding like a broken record LOL

There are considerable financial barriers to actual diagnosis. And there are clinicians who really do not follow the DSM IV/DSM V criteria, and believe "autism" is the "autism of the past." (i.e., severe Kanner's/Classical autism).

Most adults, at least in the US, would not really "gain" anything financially by being officially diagnosed. The most they might get is accommodations in a college/university setting. It's highly doubtful that a person diagnosed with Level One Autism would get SSI/SSDI on the basis of that diagnosis alone. In fact, there's a DISADVANTAGE to being diagnosed this way: one usually is excluded from the armed forces as a result (unless there's some sort of "waiver" implemented).

So the potential for "sponging off the government" as a result of a Level One diagnosis is minimal.

As long as a self-identified person doesn't claim he/she DEFINITELY has autism, I feel they shouldn't be criticized, specifically, for not seeking an official diagnosis.

Last edited by kraftiekortie on 06 Jun 2016, 7:40 am, edited 1 time in total.

I'm not aware of anyone on this thread belittling anyone else - aside form the ad hominem directed at myself last night.

If you are alluding to my words: I have repeatedly said on this thread that I have absolutely nothing against someone who suspects they may be autistic seeking a diagnosis if they are experiencing difficulties.

But I will dismiss the opinion of someone who is not diagnosed yet claims to speak on behalf of autistics.


(PS quick aside: age is not an indicator of knowledge, only experience. There are many teenagers just finishing school who have more knowledge on certain subjects than I likely ever will. I don't think it's worth the diversion on the thread, but saying 'I'm older therefore I know better' or something along those lines is simply a fallacy.)

To Underwater- I figured you were not addressing ZB personally. She is a real sweetheart and she is very a genuinely kind person. I definitely did not want her thinking that you nor I were speaking to her directly because we have been conversing back and forth with her on this topic. I also feel that many people who are very young have a habit of saying things that show that they have no understanding of an older person's perspective. That could just be an Autistic ToM thing as well. But I think that it is important for people to understand that these situations are not always cut and dry. Someone who is barely able to put food on the table and survive does not always have the ability to go to a doctor to have symptoms confirmed in an official diagnosis. Sometimes they just don't have that luxury. And there are plenty of people who are caught in the cracks of the system like I am at the moment. I can't qualify for assistance but I am not making enough to survive. I have no ability to see a doctor for anything right now. So to make these blanket rules and be so harsh on people without understanding their situations is a bit rough.

Last edited by skibum on 06 Jun 2016, 7:39 am, edited 1 time in total.

But, a self-identified autist who has completed one or more screening tests could say that he or she was "screened with autism." Screening raises the stakes somewhat, due to the accuracy of the testing which places a screened individual at about the 80th percentile among known autists while still existing within the realm of "maybe." I claimed this phrase frequently between my first (mis)diagnosis and my second successful diagnosis. Most people don't even blink when they are told that someone was "screened with autism." They presume (somewhat correctly) that the screened individual is autistic. But, is this part of the problem within the phenomenon of "diagnostic creep?" As with self identifying, it could be. But, as you stated, no self-respecting screened individual would skip passed his or her screening score and claim to have been diagnosed.


These are some of the reasons why certain individuals research autism and themselves, and choose to remain self-identified for months, years or indefinitely. Among the other reasons: 1) too many diagnosticians, while capable in diagnosing autistic children, fail miserably in doing the same with autistic adults because adults present autism differently than children; 2) too few diagnosticians reside in rural communities and small cities, making the availability of an able diagnosis scant or impossible among the individuals and their families in those communites; 3) some individuals are happy with simply being self-identified and/or screened because they are beyond the ages when educational, governmental and professional supports are provided to diagnosed individuals; 4) and others, especially those who have, as my senior diagnostician told me, "...mild autism with very, very high intelligence," have few autistic deficits and might choose to accept being self-identified and/or screened, but a professional diagnosis is simply unnecessary for their lives.

That is absolutely true and I agree with it completely. But I don't think anyone here has said what you are saying. What we have said, or what I have specifically said, is that I do not appreciate young kids who have not had to experience what I have had to experience tell me how I should be affected by my issues.

And what Underwater said is that she does not like a young kid instructing her how she should live her life.

Last edited by skibum on 06 Jun 2016, 7:49 am, edited 1 time in total.

Young, white males from upper-middle class upbringing usually need to check their privilege, and rarely do.

I think your first post on this thread falls into that category, where your argument is purely semantic.

I think it is worth the 'self-diagnosed' addressing the question:


What is wrong with simply stating 'I suspect I may be autistic'?



AspieUtah addressed one of the potential dangers of 'self-screening'.


One of the dangers of saying you are autistic when you are not diagnosed is creating/contributing to a false image of autism.

One should not be blamed for being "white and upper middle-class."

However, one should be aware of the situation many "none-upper middle-class" people face which upper middle-class people frequently don't face.

Just be "aware," while not feeling "guilty."

I would never begrudge anybody his/her success.

In answer to Sonic: Absolutely nothing!

To SS; I agree and respect your opinion, IMO, how you worded your opinion in your first post is likely to create more conflict. It was a combative post. I don't know what has been going on here lately or in your previous thread.

Last edited by neilson_wheels on 06 Jun 2016, 8:00 am, edited 1 time in total.

That is what most of them say. Even if it's not those exact words, what they say means the same thing as those exact words.

I used to suspect, but I've come to be certain. Telling people I "suspect" would therefore be a lie. Not that it's something I tell anyone, anyway, outside of WP. So you don't need to worry that I'm out there trying to scam the system or draw attention to myself.

Another thing people need to consider is that when someone is self diagnosed, often times it is not done in isolation. You have no idea whom that person might have consulted with. When I was preparing for my official diagnosis I was actually able to successfully contact Tony Attwood and we talked about my situation together. So it is possible that the person who is self diagnosed might have done so with the help of the one leading experts in the subject. You just never know what kind of research was done and who helped him do it. It is also possible that someone could have an official diagnosis and have been evaluated by a complete buffoon who just happens to have the authority to give a diagnosis. So in honesty, it is not fair to throw all kinds of assumptions and judgments on this.

And when people doctor hop it's not always the case that they are just looking for an answer they want to hear. Granted some may do that but not most. Most people do it because they realize, from their own research and self diagnosing, that the doctor diagnosing them is uninformed or incompetent. I had to dismiss one doctor because she told me that I can't be Autistic because Autistic people don't have emotions. If I had just let her diagnose me, I would not not been diagnosed simply on that premise. I am not going to trust my car to an incompetent mechanic, I will shop until I find one who knows what he is doing. Why should I not have that same right for my diagnosis?

Last edited by skibum on 06 Jun 2016, 8:45 am, edited 2 times in total.

Yep...Tony Attwood is considered THE authority on Asperger's, especially in adults.

That was a great coup---being able to contact him!

It was amazing. And he is so humble and down to earth and nice. I loved talking to him. And he does not harshly judge the self diagnosed. He understands that some people just can't get a formal one.

Yes, Tony Attwood is the best!

I was able to befriend Dr. William McMahon during my self-identification months. McMahon was, at the time, the chairman of the University of Utah Department of Psychiatry. Specializing in Tourette Disorder and Autism, he had conducted extensive research in both fields over the past several decades. His experience in the epidemiology of autism dates back to the mid-1980's when he conducted the first autism prevalence study in the United States, which was based here in Utah. McMahon made it possible for me to attend the 2015 IMFAR International Meeting for Autism Research conference in Salt Lake City ... just as I was finishing my own research into autism and myself. At the IMFAR conference, I met John Elder Robison and Alex Plank. They all added those last bits of knowledge to my research. McMahon was pleased that I had decided to attend the university's Autism Spectrum Disorder Clinic for my second diagnostic assessment. Through him, everything combined nicely.