Critical of self diagnosis - you shouldn't be

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After reading a week worth of articles and thinking thing through this above is pretty much my opinion. Before I begin yes it's very possible he is autistic. An actor can be an autistic since we must "act" every day. A person getting in with the right group of people, right circumstances it is possible to be accepted and be very successful and be completely autistic. In a perfect world it would be as Robison said in the article posted above, Jerry would be taken at his word and that would be that. I don't live in that world. The world I live is full of suspicion and conspiracy theories. In the USA look at what has gone on, starting with Vietnam and Watergate, continuing into no weapons of mass destruction in Iraq, to since you are too big to fail instead of throwing you in jail we are going to bail you out. While many of the actual theories are hare brained suspecting the worst motives is logical. Add a horrendous economy and a new disability scam in the news nearly every week and suspicion of autism is guaranteed. Unfortunately self diagnosis is the center of ‘it’s fake” ,”it’s overdiagnosed” feelings both outside and inside the community.


It is pretty much stating the obvious that professional diagnosis by a specialist in Adult Autism specialist has a better chance of being correct because is not solely based on ones feeling of themselves. That does not mean the specialist can’t be wrong and that does not mean self diagnosis can’t be correct. A through self diagnoses has a good chance of being correct, specialists have agreed with this. In the real world there is a huge shortage of experts and adult diagnosis needs to be paid in full by the person who is suspecting autism and little or no support once you do get diagnosed. So when you combine cost, distance to travel, the likelihood an autistic person is un or underemployed the optimal option of professional diagnosis by an expert is not available for most autistics. That leaves three choices. 1. Self diagnose and work with the explanation 2. Go to a generalist who is cheaper and located in a town near you. It might work but as seen in post after post there is a really good chance you will be dismissed or misdiagnosed thus instead of status quo you are actually set back. 3. Status Quo, do nothing for now and hope someday, somehow society or your situation will change enough that you can get professionally diagnosed by someone who has a clue. Many Autistics are black and white thinkers who will equate not being diagnosed with not being autistic. If you are not autistic and still “fail” despite have average to high intelligence, the logical explanation is character flaws or mental illness. Thus the person will “try harder” in the ways NT’s want, which is probably the reason for the life crises that started them thinking about autism happened in the first place. So lets look at the options 1. Professional diagnosis by an autism expert the best option 2. Self diagnosis. Decent chance to be right but black and white thinking will make it hard to accept the uncertainty and many people will judge you harshly. 3. Status Quo - Likelyhood the endless loop continues 3. Go to a generalist - They might get it right or at least partially right but there is a rally good chance this will set you back. While the above scenarios will not happen for everyone my advice for the average person is clear. Get a professional diagnosis by specialist if you can, and if that is impossible self diagnose rather then try to get diagnosed by a generalist.

Looking at the above what stands out is the lack of availability of psychs who have a clue. What needs to happen is acceptance that Autism is a spectrum, and that Adult Autism exists by both the public and the professionals. Did Seinfeld’s coming out help or hurt?

The question is not does he have a right to do what he pleases with his money and say what he wants, of course he does. The question is what should he do?. By talking about it in a very public way he becomes a face of Autism and thus our issue. If he trivialized LFA by using a vague reference to a drawn out spectrum what does his failure to do what is easily within his reach say to people who have struggled or are struggling mightily to get a diagnoses? I do know what it did for people who deny HFA exists, it handed them a gift because it was an example of what they have always been claiming. For us it presents an obstacle because now we are going to have to add don’t judge us by Jerry just like we had to add don’t judge us by Adam Lanza.

Much more then the interview itself what bothers me is that in the wake of the uproar as far as I know there has been no clarification which could be used to raise awareness. Instead intentionally or not he is letting this simmer. I wonder what prompted him to proceed in this way? I would like to think it is lack of awareness of the sensitive issues involved which is probably correct. But in the wake of continued silence one has to wonder if he is using us to promote his show. Living in the age we do I have had paranoid conspiracy theory type thoughts that Autism Speaks who he omce worked with is paying him to fire up their base of “warrior moms” by presented a public stereotype of what they think of “Aspies/HFA.

I'm on various Autism lists. This board and one other email list are the only ones that have been supportive about Seinfeld. But those two are geared to adults.

The warrior moms on the other boards have been absolutely vicious, and if you think my post here was angry, it was nothing compared to what I have read.

The least supportive group (from what I've read), were from families with LFA children.

If Austim Speaks was hoping to "fire up the ranks" with Seinfeld talking about his issues, it back fired big time. The parents that shell out money aren't buying it.

The more I think about Jerry Seinfeld's situation, the more I agree that he needs to get diagnosed professionally by an excellent and competent diagnostician and he needs to do it soon. It's one thing if he has personal suspicions about being on the Spectrum and if he has issues in his personal life that he needs help with. That is fine and if that is truly the case I wish him the very best with whatever is going on just like I would wish it for anyone who is wondering. The problem I have with his situation, however, is that he announced it publicly. I know that he did not say it in a definitive way but even how he said it was enough for people to jump to the conclusion that he is indeed on the Spectrum.

I understand people who need to self diagnose because they don't have the means to pay for a diagnosis and I support that wholeheartedly. And I don't mind self diagnosed people saying that they believe they are on the Spectrum as long as they are honest that they are self diagnosed when that matters. But someone who has more money than God and who has the ability to, as one of you mentioned above, fly the diagnostician of choice in his private jet to his home for a complete and thorough evaluation, I believe owes it to the Autism community to be sure before announcing it publicly. And I don't mind him involving us in the process. Since he publicly announced that he has his reasons to suspect Autism, I think he needs to follow through and publicly let us know what he is doing to find out for sure and then publicly let us know the outcome one way or the other. So whether he is on the Spectrum or not, he has the right to know just like anyone else. But to just throw it out there like he did and then leave it at that and not give us any more information, that really bothers me. If he wants to be a face for HFA, that is great but if he is going to do that he needs to find our for sure and let us know what the results are. If he is not planning to follow through and be publicly open about it, he needs to let us know that as well and make it very clear that he really does not know for sure if he is on the Spectrum or not but that he is only speculating and that he should not be used as a face for HFA.

I don't think it's a good idea for someone in his position to announce Autism until that person is certain and has had a real, thorough and competent, credible diagnosis. He is free to self diagnose whatever he wants just like anyone else is but he needs to be careful when he starts talking about it publicly.

I think it would be fantastic if he turned this furor into an opportunity for education. He could have himself assessed and make parts of that process public as part of a TV special. Whatever the results, he could have an informed discussion with people like Tony Attwood and Lisa Croen and include people like Alex, Maja Toudal and some communicative LFA people. They could look at the challenges faced by people in different areas of the spectrum and the reasons this may have driven some of the reaction to his statement.

I think such a project would be very educational for many people, draw a large audience (given the 1 in 68 number, many, many families would be likely to view such a special) and be a commercial success. I could see it as a special with one of the big networks or cable channels...

That or something like would be a really great way of turning all this negativity into a positive.

So many really interesting views here I can`t remember all the things I want to say about them.

I am 52 and have wondered why `things happened to me` for over 45 years.
I have been on a long journey of self exploration which has not only enlightened me but educated me too. I have explored religion, philosophy , psychology, psychiatry, creative expression & art etc etc. all in a way to find out who I am and why I do things the way I do.
I am not professionally qualified to diagnose anything.
However I am the best person in the world to know myself.
After all these years of searching & exploring I discovered Aspergers after a freind mentioned that I often took jokes literally; I researched and then began self diagnosing via online tests (I am 99% sure and NB I was around before Aspergers even got credence in the 70s!) it has turned out to be the biggest break through of my life for 30 years!... it explains everything.

It now gives me the possibility of framing my difficulties and gives me a chance to find some new strategies to move forward and begin to learn to maintain relationships and have a positive outlook.

You would not know I was Aspie to look at me because I have spent my life learning to cover it up I`m really good at it... people just think I am a little distant.
Only if you spend time with me or catch me on a hyper day does it `leak out`.

It really worries me that a psychologist would not spot this...and by officially wrongly diagnosing me woul invalidate my discovery.

I worry that I may now be `too sophisticated` to fit into the standard tests... I am not a classic aspie (if that person exists anywhere but in a text book).
In addition I have learned overthink so fast that I can double/triple/octuple guess responses for a psychologist or a test . Would this invalidate my response to an official DX question???????

I found paul hulberts post (about 9 before this one) really interesting.

For example: I think one of the Qs. in one test was something along the lines of "Are you able to do small talk with others?"....

The truth is that I make an effort to do small talk but I hate it... is the answer YES I can do small talk or NO I hate to do small talk but try hard.... there is no category for this in the tests.
I force myself to do eye contact, it is only noticeable when I don``t know when to naturally disengage and I probably begin to appear like a staring wierdo!

eg how aspie would I actually appear without 40 years of practice working on myself?? .... how on earth can a professional DX account for that buried reality!..... only I know that truth.

All of the self diagnosed tests I have taken I am just a few points into the aspie zone, but when you put them all together and know my life history it really makes sense. Overall much of my Aspergers traits have laid out my lifes direction so I own it. (and sometimes quite like it..... sometimes.... I now brag about my acute sense of smell and hearing to my young son as my super-powers!)

I am sure like myself many of us do eye contact, have a good sense of humour, read novels, as well as fiction are emotionally empathic etc etc

I am only partially obsessed by things (I wish I could tap into this more as I am lazy and need to improve my guitar playing) I have a loving wife (after serial failures)

If a thoughtful self diagnosis helps me ... then its good.
I wonder if any of you might have had similar DX flight paths.

p.s. I am trying for a DX purely for work in case I need support. But I admit that I am scared an official DX cannot bottle my aspergers as it is not full on enough to register at the time of the tests.

p.p.s The Seinfeld thing is up to him, never watched his show ... good luck to the guy. When I first posted I was particularly reacting to the fact stated by the editor in the headline intro that some people have problems with self DX`s

p.p.p.s If people want to really get political `fire up the ranks` should we not be telling the `authorities` what WE want.....We are the experts after all. A good challenge might be for us to create list of NON aspergers traits owned by Aspies that challenge the official DX traits?

Peejay,
I am like you in many ways. I am extremely high functioning and spent nearly five decades mastering the art of covering up my symptoms and traits to be able to survive and fit in. No one in my family ever suspected I was Aspie all these years. I was also concerned that I would be able to fall through the cracks of an official diagnosis because of this. Truth is, I just got my diagnosis a couple of weeks ago and the psychologist said that my Autism was so obvious to him from the very first moment he saw me in the waiting room, he did not even need to bother testing me. The first person who ever told me I was on the Spectrum almost three years ago and who got me started on this whole journey, said the same thing. The truth is that if you are indeed on the Spectrum, there are things that are very obvious that you don't even know about or realize that you are doing. Someone who is very trained and skilled at noticing these things will have no problem noticing them in you. And if you have a complete, thorough, comprehensive test like I did, mine took almost 8 hours and it was done all in one day which makes a difference rather than over several days or weeks, if you are on the Spectrum, you won't have to worry about them not realizing it. The key is to find someone who is extremely competent and who will do the full comprehensive battery of tests. I was very fortunate to have it done the way I had it done and that the right people crossed my path at the right time. If you have people who really know what they are looking at, they will see it.

Two thoughts:

1) It may be that something really positive for the ASD community emerges from the Seinfeld situation. If he gets the certificate it could
undo a lot of popular and media prejudice. So in his case I agree that other diagnosis would help, though not because I think that
people on the spectrum "should" or "must" conform to that expectation;

2) The self or other-diagnosed "division" is somewhat misleading, because many fit into both categories.


(also like to imagine a televised conversation between Alex and Jerry about the issues of knowing/not knowing/wondering if you are on the spec)

Thanks for the reassurance Skibum & Eloa
I am interested to know that there is some scope to annotate your answers a bit if you are unsure, sounds a little more realistic.

However, Is it a possible that one specialist will come up with a different outcome than another depending upon their school of thought, or is it a statistical analysis?
(and if so how will the side notes affect this outcome without affecting reliability? or am i being too picky?)

Blimey. 1000 questions!
are the questions any good?

Anyway they tell me it may take until next Spring to get an initial appointment for assessment.

In one way I`d rather not have an official DX. I dont want to spoil the progress i am making now.
It has almost given me permission to accept myself, surely that is worthwhile on its own?

I am just making so much progress understanding about reading myself through the self diagnosis, it fits so well after all these years of wondering why I had so many difficulties doing `normal` relationships & interactions and that I was dysfunctional or just a bad person.

Although as I said, I defy anyone to be able to categorise me, In my case the aspergers `label` is a very positive thing.

A lot of people feel they have no other choice but to self-diagnose.

Personally I have had such unpleasant experiences with doctors, psychologists and other professionals, I would rather stay away from them. I live in a rural area where a lot of professionals in general are small-minded and ignorant and can be strongly biased by their religious beliefs. I've always had problems communicating with them and when you get right down to it, I just don't trust them. The years of frustration of dealing with people like that has made me weary.

It would not matter if it was free for me to be evaluated, or if I had all the money in the world to spend on seeking a competent specialist anywhere in the world. I just don't want to go that route. I am TIRED.

I don't know what an official diagnosis would offer me, other than being able to say to the doubters that I got an official stamp of approval. I'm not seeking any services. I'm not interested in therapy or medication. I don't want to disclose at work. I already have an ADHD diagnosis, which is problematic enough to disclose, but if I absolutely have to, at least I have that.

People get misdiagnosed all the time, in all areas of medicine and psychology. I've read many stories of people with a physical illness or disease who could not get the right diagnosis and had to do their own research to diagnose themselves before they could get the proper treatment.

An incorrect mental health diagnosis can have really negative consequences on a person's life. ASDs are poorly understood by many professionals. Look at all the stories on here of people who seek diagnosis - even some who are already diagnosed - but are told that they cannot possibly be autistic because they are able to make eye contact, or able to speak or smile, or because they do not flap their hands. Look how many people on here have been told they cannot possibly be autistic because they had friends as a child, or simply wanted to have friends as a child. And then, look at the horror stories of misdiagnosis...like people put on medications that do not help them and can even make things worse.

I've done my research and really thought it through. At this point I feel about 99.9% sure that I am autistic, but I label it as atypical autism because I know I don't fit any of the stereotypical descriptions of autism. The remaining 0.1% of doubt is simply because I believe life is a mystery and you can never be absolutely 100% sure of anything. I think you can come very close to certainty on some things. But I reserve some doubt and skepticism in all things because it allows me to continue questioning and seeking more information.

It IS possible for a person to diagnose themselves correctly based on reading just one article. That's how I found out, at age 17, that I have ADHD. About 6 months later I got an official evaluation and diagnosis by going through vocational rehab. In the meantime, I did go around telling people that I had ADHD...but I had an unofficial diagnosis from a GP who had prescribed me Ritalin, so I was not just talking out of my ass. When I asked for accommodations at college, they wanted something more official.

Getting a professional diagnosis was a let down. Yes it confirmed what I already knew, and that was a relief, but going through the evaluation was an awful experience. At the time, I felt it wasn't worth it to have gone through that just to have an official diagnosis. I'm glad now that I did it, but I wouldn't want to go through something like that again.

If I hadn't figured it out for myself, I don't believe anyone else ever would have figured out that I have ADHD. It was still rather unusual at the time, in my area at least, for a female to be diagnosed at all. (Come to think of it, to this day I have never known of even one female in my life offline who has been diagnosed with ADHD, only males.)

But all it took for me was reading ONE magazine article, written by a female who had been diagnosed as an adult. But if I had relied on other articles and information oriented around the male stereotypes of ADHD, maybe I never even would have figured it out for myself. Or if I had done more research, and had been influenced by that, maybe I would have second-guessed myself and decided not to get diagnosed at all.

I identified with some of the traits of autism for years - even before I figured out that I have ADHD - but I had a poor understanding of what autism is. I thought autistic people were all very low functioning. Even now, that's what many people believe.

Many people on this forum have said that they became aware they might be autistic because others noticed their autistic traits and suggested it to them. But some of us have never had anyone else figure it out that way. And some of the doubters of self-diagnosis say, how could you possibly go through life without SOMEONE noticing and figuring it out? But it does happen. People may notice something is off, but they don't understand what it is.

I don't think it is safe to rely on the objectivity and/or knowledge of others, even professionals, without doing your own thinking and questioning.

Giving you the A+ mark for that excellent piece Dianthus. Strength to you arm...

It should be remembered that this Site is not just for people with autism or Asperger's.

It's also for people who are interested in autism/Asperger's--through having family with the conditions, having friends with the conditions, or just wanting to stop being ignorant about the conditions.

I think we all should be partners in this Venture (whether we're "self-diagnosed," "officially diagnosed," "having suspicions," or even not "having" Asperger's/autism at all).

If I'm being redundant, please forgive me. It's important, though, for people to know this.

I read on here that people had done their research for a couple years but did not know what BAP (Broader Autism Phenotype) was.
Second, one should do their research not only regarding autism, but go indept mental health disorders, especially if they had a difficult upbringing.
There were threads on here about having a narcissistic mother, and difficult upbringing, hating your parents and more with many replies.
There are attachment disorders as well, the best known is "Reactive attachment disorder", but there are other attachment disorders that can bring up traits of autism as well, in my oppinion the avoidant attachment style in a certain degree is what will lead to schizoid personality disorder, which is almost indistinguishable from mild Aspergers/HFA, and I do not believe that such like attachment disorder just begins to show up age 18, as they say, it's really BS and in no way logical.
There was also a proposal for the DSM V to include a diagnosis "developmental trauma disorder".
It's about hidden developmental trauma, like disorientated attachment to caregiver, double bind upbringing etc.
There are also many traits resembling Aspergers/High-Functioning Autism.
Aspergers/HFA self-diagnosed with somehow disordered upbringing or any kind of childhood trauma should also do indept research in this areas.

Aspergers/HFA self-diagnosed with somehow disordered upbringing or any kind of childhood trauma should also do indept research in this areas.[/quote]

That sounds pretty dogmatic... should? could? And aren't you making a massive assumption that all the HFA self-diagnosed haven't done this?

And what qualifies you to dictate to them what they should do?

I am all for posters expressing different opinions but not in that autocratic kind of way...

There is zero point in being self-diagnosed without actually then going on to be diagnosed (or not diagnosed if you're found not to have it).

It's a serious disability that affects your life negatively in many ways. Hence, a diagnosis is there to allow others to recognize the disability as real, and you're then given allowances for such.

If there's no disability that doesn't need allowances, then there's no disorder and subsequent diagnosis.

There is nothing to identify with (if you don't have it), unless you're malingering (or have a factitious disorder or something similar, but that's its own diagnosis).

To me, it's a pretty iffy thing.

Some people end up very knowledgeable about autism and even learn about some of the underlying causes, including some trivia about the lymphatic markers and other concepts that the average psychiatrist might not be very knowledgeable about. Sometimes, a person may have a tremendous amount of evidence for a self-diagnosis.

I am also distrustful of many front-line psychiatric professionals, but this isn't the fault of the psychiatrists themselves. It's the fault of society, which has historically failed to take psychiatry seriously. It's treated more as a philosophy than a legitimate science, and even many highly credentialed medical professionals behave as if the nature of the human mind is a matter of metaphysics, rather than an actual source of clinical concern.

Therefore, the problem with saying "I've got a professional diagnosis" is that you fail to state where you got the diagnosis from. A lot of two-bit cranks will "diagnose" you with whatever you pay them to diagnose you with. In some communities, wealthy white parents will take their children to be "diagnosed" as "gifted," and you'll have entire AG classrooms full of ordinary kids, except they are unfortunate enough to have irresponsible parents who see their children as status symbols rather than as people.

On the other hand, I am being treated by a head researcher at the flagship campus of my state university. I put his diagnosis and opinion before my own, hands-down. If he told me to stand with one foot in a bucket of water on the roof while holding an umbrella and whistling during an electrical storm, would I do it? Dang right. If he says do it, he has a good reason. He is smarter than I am, and I jolly well know it. He changed my life.

If you have well above average intelligence and the capacity for critical thought, including the ability to question and doubt yourself and the tested ability to change opinions in light of new evidence, then it's possible that you're better off with self-diagnosis than trusting the opinion of some two-bit crank, but the best people in the field are smarter than you on their worst day. Their time isn't cheap, either. It's worth it, though.

There is such a thing as well-founded self-diagnosis, but if you are sure that you have a problem that you know is treatable, then don't futz around with two-bit front-line psychiatric professionals who would diagnosis a stuttering disorder as mental retardation (a friend of mind went through that recently). If you're really sure, don't screw around with trying to self-medicate or anything suicidal like that. Go straight to the big-leagues. Pan-handle on the street if you have to, but see a REAL professional. Stop wasting your time. It will change your life.