How Did You React To Your Diagnosis?

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I am scheduled for an evaluation 9 days from now. I think I will be more distressed to find that I am NOT on the spectrum than to have it officially confirmed.

I suppose I can guess at some of the reasons, but your comment makes it sound like you affirmatively want AS, which would be kind of perverse in my book. Could you elaborate?

After strugling your entire life, and just not being able to accomplish the things everyone else seems to find so easy (friends, relationships, etc)... the worst thing you could here is that you are normal. Because, that would mean it was all your fault; the result of bad choices and personal failures. At least that's why I was scared.

It would be a critical piece of a puzzle that I have been solving for my entire adult life. It is a bit perverse I suppose. I don't exactly WANT to be on the spectrum. But I definitely want understanding in regards to my difficulties. It would also radically change my approach to those difficulties. Whereas I have previously considered my problems more of a thought disorder (incorrect thinking) and hence kept trying to adjust my thinking, it appears more accurate to call it a difference in perception and processing. Without recognizing the perceptual and processing issues, adjusting the thoughts is doomed to failure. Redirecting the energy I have put into thought adjustment to understanding how my perception and processing inform those thoughts will hopefully realize greater dividends.

I also think it might be in part autism expressing itself. A significant issue for me is having cognitive tension surrounding an idea. An official diagnosis relieves that tension and allows the part of my mind occupied by that tension to move on to something else. This seems consistent with the autistic tendency to fixate on certain things.

Another thing is that, as irrational as it might seem, autism FEELS right, while any other diagnosis (schizo-affective, cyclothymic, etc) never fit very well. It feels like Occam's Razor applies. No other explanation is necessary to explain the core of my challenges in dealing with life.

I wouldn't have taken a "negative" diagnosis that way. For me, a negative diagnosis would have left open more hope. It would have provided some relief that, although I might have screwed up everything so far, I wasn't limited in the way I feel I'm limited now. Now I feel like I can work really, really, really hard and make some progress and improve; but, in the end, there's a "ceiling" that I'll never break through. I'll always be somewhat challenged. (It's tough to find out that mom was wrong: I actually can't be anything I want to be.)


I definitely get this, and I appreciate your elaboration. I thought this was what was going on, but you put it -- and what follows -- very nicely.


I was explaining what sounds to me like the same thing to someone, and I was contrasting the autism spectrum with the schizophrenic spectrum. (We know someone who's on the latter.) I explained that whereas I process information in a very different way than most, this person sees things in a very different way than most. Now, I don't "get" a lot of stuff, but I know that I don't get it. He doesn't get it and he doesn't know that he doesn't get it. He thinks he's "correct" in a way that I know I'm not.

Hmmm... That may be incomprehensible. How 'bout this: I may get confused and disoriented, signals and wires may cross, but I'm aware of that happening; this other person seems to have what you call a "thought disorder" -- i.e., he's delusional and lacks that awareness that I have.

I scheduled my appointment to be officially diagnosed after having only heard of Asperger's around a month earlier. I was fairly certain I had Asperger's before my appointment. I had spent a long time wondering what it was about me that was different than other people. I had thought I was a one-of-a-kind. After my official diagnosis of Asperger's was confirmed, I celebrated. I was not alone in being different.

Asperger's is not a disease. Though called a syndrome or disorder by many, I view it as a difference. As with anyone, Asperger's has strengths and challenges---just like NTs have. I now researched more about it, and I decided to build on my strengths and pay less attention to my challenges. My wife now realized why I struggled at parties, and she no longer expects me to go to them. By understanding my differences, our marriage has been greatly strengthened.

Being diagnosed with Asperger's has been wonderful for me. I have bought several books on Asperger's---and they have become my owner's manual of life. I can now operate myself in more effecient ways. I have launched a new music ministry where I discuss a bit on my Asperger's and how I view it as a gift from God. Asperger's has created special intense interests in me---music included. I learned how to play certain instruments on my own (in very little time) because of Asperger's.

Almost a year after my diagnosis, my youngest son was diagnosed with Asperger's (and he now has an IEP at school which has really helped him---he is very happy). He and I are very close. We have a special bond in life---Asperger's.

I think I understand. A schizophrenic, through atypical perception and faulty thinking, constructs a false reality, believes it to be true and cannot be persuaded otherwise. An autistic, through atypical perception and effective thinking, constructs an unusual view of reality, but if someone takes the time to learn about that view, it is actually referring to something real.

My proper diagnosis took two years to get. But when I finally realised I had AS it was a weird feeling. Like this is really real. You begin to see yourself in a different way. I'm not sure how long it took to get comfortable with it. I had to get diagnosed again to go on disability.
There's a lot of doubt during the diagnoses progress. Do I really have it? Then months after you're diagnosed you're sure. Years after you wonder how you never saw it before.
And those 'is this at good as it gets?' feelings do happen but the truth is - no, you can work on getting better skills to be able to manage your symptoms.
I went through the same thing with my ADHD diagnoses.

I hope you don't go through the grief process for too much longer. Just know that the brain is an amazing organ and is capable of changing, especially for autistics. Yes, you will still have AS but you will be able to learn coping mechanisms.
I'm a bit more social, open minded and willing to try new things. My anxiety isn't as bad but can pop up at times, especially when out of the house.

I'm pretty far out of my element, here, but I think I understand the following: I see things differently; this person sees different things. You and I could probably have a coherent, if somewhat awkward, in-person conversation -- and we'd likely make some sense to one another. You could have a conversation with this person as well -- so long as you're ready to agree that he's a member of British royalty and is the governor-in-exile of Virginia. I'm frequently disoriented, I know that, and I can usually reorient myself once I've processed whatever environmental factors are causing me confusion. This person is also frequently disoriented -- although perhaps less so in some sense than I am -- but he insists that his orientation is correct and would think you were crazy to suggest otherwise.

Not very well to begin with anyways, I never knew anything about it until I was about 13 yet I remember going to the doctors appointment and seeing a psychiatrist but I couldn't recall myself knowing I had autism at the age of 7 (which was the age I was diagnosed).

I certainly felt like the odd duck at first who did try to fit in and what i would used to say is "I want to be normal".

I was diagnosed as a young child about 8 and it was a major blow to my self esteem because although I did not know what PDD with autistic characteristics meant, but I knew it meant that something was wrong with me. That effected me very deeply for many years, I just wanted to be normal and tried so hard, but I ended up losing myself in the process, Then in my senior year of high school, I realized that I wasted my teen years trying to be something I was not. I went on a journey to find myself again and to find self acceptance. It was indeed a journey, but I finally am proud that I have AS because with the shortcomings and anguish also come the gifts and I learned to focus on my gifts and accept my shortcomings and when I accept myself wholly as I am, AS and all, the anguish is much less of a beast.

Although there is no cure, there is social skills training, and other resources to help you adjust better to life on planet earth. You can also find your gifts that are given to you by your unique mental wiring and expand on them to drown out the silent scream of life with AS.

Plus it could always be worse, you could have ended up with a debilitating personality disorder which there is no treatment, no skills training, no medication, no cure and no hope of progress because with personality disorders are perceptional disorders and you cant treat what you are unable to perceive is your problem not someone else's

I was diagnosed as an adult and was cynical about the whole thing. I had all kinds of different labels growing up, so my initial internal response was 'what are they going to call it now?'