Self-diagnosis was not confirmed by psychologist

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I learned about AS after scoring high on the AQ test, then reading Tony attwood's complete guide. It all seemed extremely familiar so I made an appointment with a local psychologist (not an autism expert) a few weeks ago. It included discussing personal history, an iq test, and a personality test.

Today I went to see him to get the results.

I was pretty surprised that he didn't diagnose AS. I'm somewhat confused too. He said I matched many of the diagnostic criteria but not all. Bizarrely the box he didn't think he could tick was the criterion that I have a "impairment" in social functioning. I was pretty shocked, especially considering I have spent most of my life since a teenager mostly isolated and in front of a computer. He said the fact that I had some friends in childhood and high school, and also have a girlfriend (I forgot to mention i met her online) suggests I may have social problems but not an impairment. In his words, he would expect people with AS to have no history of friends or relationships. I explained I was finding a lot of answers tin AS literature and online and he agreed that I met a lot of AS criteria but he couldn't diagnose it because of the above (I.e. I had friends and have a girlfriend).

Honestly I feel like he got this wrong. Any thoughts? He said I did meet diagnostic criteria for ADHD-NOS and felt it matched a lot of childhood stories I told him, but that children with AS are more reserved and isolated than I described myself, which he felt matched more with ADHD.

What do you think? So a person can't be diagnosed with AS unless they are and always have been a complete loner, basically?

I was feeling comforted and at home in AS literature and in AS discussion forums and now I don't know where I stand. I have obsessive special interests which have defined me most of my life, few friends, sensitive to stimuli, need time alone to unwind after social events, difficulty with eye contact, etc. But apparently I don't have AS. It's kind of depressing being in this middle grey area. What do you think?

Thanks for reading

He's wrong. Completely, utterly wrong.

Find someone else who knows more about ASD. Make sure that he/she is well versed in it AND has treated adult aspies before.

This is just way wrong. Consider going to another psychologist. Or, as another option, consider asking a 'regular' doctor (such as family practitioner or internist) who you feel like you can talk with a little. Frankly, mental health professionals often have issues of their own. On a small scale, you may have gotten a taste of it, in that he had to "be right." You bring up valid points, oh no, he has to be right in his original diagnosis.

Find a psychologist that specializes in AS.

So what was his DX? You're fine? Move along ...

How you describe yourself sounds aspie, straight up. But, either way, we want you. I want you, as a participating member here at our group (provided you have the time and interest of course). If you have many of the traits and characteristics but are not quite "officially" aspie (whatever that means), you can still be very helpful for us as a 'bridge' person as it were. Teaching us life skills and things that work for you. And we might be able to teach you some life skills and things that have worked for us.

That's a major trait for me. I can be on socially, and alert, and participating positive, and open in a soft, gentle, zen-like way to appreciating others, but boy then I need a lot of decompression time. To unwind. To recharge my batteries. To kind of feel myself again.

Yes, I can be a leader in political activism (mainly peace activism). I have been a retail manager on three occasions. At the same time, I sometimes like to stim privately in my bedroom as I play with a soft T-shirt and imagine sports or movie scenes. I also to like dance around privately (but I think everyone does that, 'normal' people included!) Other times I unwind by long, long walks. By going to a bookstore and browsing and reading by myself. Or by going to a Dollar Movie Theater late afternoon or early evening. Kind of, like the other people around, but more in the distance.

I have patchy social skills. I think that sometimes brings its own problems because people expect me to keep performing at a high level. Or, they think something is a deliberate oversight, and it may not be. Like anything, it's hard to be aware of what you're not aware of! I've had some success adding feel-and-texture, right-brain skills to my repertoire, that is, skills that are inherently imprecise. I also tell myself, just let a medium mistake be a medium mistake. And similar things.

And I tell myself, instead of doing a mediocre job as a follower, can't I just as well learn leadership skills and things I'm really interested in.

I saw the movie "Schindler's List" when I really needed humanitarian inspiration. And I saw it in a great setting, free and in a university setting. Okay, so Oskar Schindler is easily in the top 10% in social skills, probably higher, but we don't need to get into that kind of analysis. The skills are inherently imprecise, top 10% is plenty good enough. And even then, just due to luck and unpredictable other human beings you will sometimes fail. Well, to some extent, aren't the skills modeled by Oskar learnable business and political skills? Yes, I think so, to a considerable extent.

Last edited by AardvarkGoodSwimmer on 08 Feb 2011, 11:00 pm, edited 2 times in total.

I went to someone that specializes in diagnosing aspergers. I took 4 separate tests (2 written & 2 face to face). I met with her Monday so she could go over her initial thoughts on the test with me step by step. She explained her scoring and allowed me to offer input. She's going to make a few adjustments before finalizing the report, but she said I'm definitely on the spectrum, but it's mild.

Thing is, some of the things she mentioned were very subtle and I doubt that a regular therapist would have noticed. Especially the eye contact part as I've learned over the years to give eye contact when talking to people. But my eye contact isn't natural and during the face to face test there were 2 parts where she said my eye contact completely disappeared. I had no idea. I knew she was watching me and I was really self conscious about my actions, but these 2 parts, I didn't even think about eye contact - no clue it was a "normal" response. Honestly, that was a big eye opener for me. And it removed any lingering doubts I had. But it would take someone who knows what to look for and how to invoke it - especially for diagnosing adults.

This is a very common outcome. It usually takes a lot of observations by trained professionals to make a diagnosis. Also, the number of traits that need to be expressed for a diagnosis of AS are fairly extensive. This is because a number of people may express some individual traits on the spectrum, but still be relatively normal. Since AS is considered a very rare condition, it is not uncommon at all for people like yourself to believe you have it, and then be rejected for a diagnosis by a psychologist. I point out that it has occurred a number of times to people who are on this site.

Just from reading biographies I know that some diagnosed aspies have had friends and relationships. Tony Attwood often discusses the problems that adult aspies have in existing relationships so logically there are a sufficient number in relationships for him to have formed an opinion on the subject.

Might be considered relatively rare. But I really question whether Asperger's/Autism Spectrum is that rare.

I've also heard stories of couples having an autistic kid which brought things to light and then the father being diagnosed. That sort of thing.

This exact same thing happened to me in December last year and I feel just as low and deflated as you sound. Surprised doesn't begin to describe how I felt when this professional, after talking to me and my family for ten minutes, gave his diagnosis and left the room. I had just been through a two hour consultation with his colleague while my family did the same thing in another room with a different psychologist. The only difference being my interview was timed by stopwatch! I was told after that I would receive a full report within three to four weeks, this was Dec 6, 2010 and I haven't received it yet although I have been to take part in some research for the same hospital as an autistic spectrum volunteer. This has been going on since last August when I filled out two separate AQ forms which were sent to me and scored 35 on one and 38 on another. I was advised to read as much as I could about Asperger's Syndrome and it was like reading about myself. I felt that after 35 years of being diagnosed wrongly I'd found the true reasons for my behaviour and, like you, was feeling very comforted and vindicated after years of being told it was all my fault. I'm now 55 and angry as hell with all of them. I feel I can't move on, I'm totally in limbo because I need to know what has ruined my life. When you've been told by as many psychiatrists, therapists etc that you're not trying hard enough to get better and it's all your fault it isn't that easy to forgive and move on. I've lost a lot of chances in my life through this from childhood to now and I'm very bitter that I still am not being listened to and my life consists of getting through each day. The report? I've telephoned and I've asked in person but nobody seems to be that bothered about letting me know anything. My GP is content to sit back and wait for this piece of fiction but then, of course he is, it's not his life is it? I took the test on here too and scored 175.

this is what is happening for our family right now. our youngest was diagnosed and now his father just went through some evaluations and has a consult in two weeks to go over the diagnosis. we expect it to be classic autism.

my SO has always had girlfriends, since he was 12. a girlfriend certainly doesnt exclude you from being autistic. neither does having friends. we have been together almost 12 years and have two children, sex and children dont exclude you from being autistic either =)

you may want to look up the actual diagnostic criteria, and evaluate yourself based on that. see if diagnostically you fit. you can find the criteria for all asds at http://www.cdc.gov/ncbddd/autism/hcp-dsm.html

another idea is to contact the doc again, and ask specifically about PDD-NOS. in children, that is the diagnosis given when they have autistic traits that cause an impairment but they do not fit all the criteria of a specific autism spectrum disorder.

it does confuse me that he would say you have "social problems" but not an impairment. problems would seem to naturally imply an impairment. if there is no impairment, then there shouldnt be problems.

and getting a second opinion is certainly a valid option. try to find someone with experience in asds in adults, tho. very hard to find such a person, but worth the effort if you can find them.

I agree that you should find someone who specializes in AS. If he doesn't know what he's doing, he's just going to compare you to a generic description of AS without any in-depth knowledge. AS traits can unfold differently in people, because AS people still have different personalities. I was pretty outgoing as a child, but without my even noticing, I didn't really connect with anyone. I didn't even notice for a very long time! I was so outgoing that I would just walk up and talk to anyone... children my age, older kids, adults. But looking back, kids my age didn't seek me out, I was just so talkative that I would go to them and I was so unaware of them a a separate person from myself that I didn't know if they were having fun or had anything in common with me. There were a few people when I was young that I thought were my friends, but now that I'm older I realise that usually we were paired for a class project, or sat next to each other in class, or walked the same way home, but we weren't friends at all. AS don't have to KNOW they're socially awkward to BE socially awkward. I was blissfully unaware! Probably for the best. In middle school it got harder. I did make a few friends, but only one close one, and she was a lot like me so I got lucky. Other people would play practical jokes on me and make fun of me, but I still didn't realise it, and I would go along with it and think it was funny. (Again, probably a good thing because I unknowingly made them get bored of making fun of me because it didn't hurt my feelings). In high school, I had quite a few friends. They were all either really, really nice, outgoing, tolerant people or very quiet, thoughtful, reserved people. There's no reason an aspie can't make friends and your doctor should know this. It's hard to make friends with people who can't accept you the way you are, but when you find people who don't care how strange you act or even like you for it, then there you go. Your doctor should be able to consider these kinds of things before making a call. If his little paper says aspies don't have friends, your doctor should ask himself "Why would that be?" and he could figure out what kind of traits can make that happen, then figure out other ways those traits can play out.

I would DEFINITELY see someone else if getting an informed diagnosis (or non-diagnosis!) is important for you. Even if you can't get a diagnosis, go with what feels right to you! If you feel like an aspie, you can benefit from being here, and I'm sure people can benefit from you. Doctors don't know everything about autism... they don't even know what it is exactly, and they can't get inside your head, so remember that you have the final word for YOURSELF.

The guy is not even treating you with ordinary courtesy. He should at least have a staff member call or drop a letter that there is a delay due to upsurge of clients, short staffing, etc, etc.

Then the whole aspect, His Royal Highness sees you for a total of 10 minutes and then is going to make a pronouncement. Gheesh

Perhaps it's a question of what the word "friend" means. I had a small number of kids I hung out with at school, too. But there was no meaningful exchange and little or no contact outside school hours.

When I was 17 back in 1980, a licensed clinical psychologist with a PhD did not take my father's violence seriously. When I was 26 in 1989, I saw an MD psychiatrist, a young guy in a (prestigious) university dept, in large part because I wanted to work on OCD issues. The guy recommended medication, which I wasn't crazy about. At one point he huffily said, 'I'm not going to justify my clinical diagnosis.' Wow. Yes, he did. And that's almost an exact quote. I was trying to grapple with the issue that some of my worries about germs or chemical contamination felt similar to when I got involved in an intellectual project in a positive way. And this guy didn't get this at all. He wasn't open to hearing this. The answer is, well, there's kind of two sides to a coin. Sometimes Aspie traits can go in a positive direction, sometimes in a negative direction. And back in '89 no one had even heard of Asperger's. But if this guy had been a halfway good listener (and he clearly wasn't), he may have been able to suss out some of this.

I'm going to start a post something like "Can one get diagnosis from family practitioner or internist?" as one way of starting to break the monopoly of mental health "professionals." Yes, it's one option, although we need not feel as though we are stuck with them.

An analogy is the Civil Rights Movement. At a certain point, it had to primarily be black people advocating for themselves. Good-hearted white people, including some people very seasoned in solidarity struggles and very seasoned in politics, they could help out, but they couldn't run the show.

Last edited by AardvarkGoodSwimmer on 09 Feb 2011, 12:14 am, edited 1 time in total.