Identity with Autism

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I was talking to my friend the other day about my identity with Asperger's Syndrome. I said that it was a huge part of my identity and that, by this point, I need the diagnosis. I have identified with it for so long as who I am and that a lot of my personality is affected by it. If someone took away my diagnosis, if it turned out that I never was autistic, I would feel like I was lying for my whole life (even though I know that I'm not lying.) I would feel like I lost an important part of my. My friend told me that this perspective is unhealthy and that I have identity issues. I don't know who is right, me or him. What are your thoughts on this issue? Can you relate?

Considering that Autism defines, in part, how we think and how we interpret the world, I don't believe your impression is so very wrong. Your friend is likely not quite aware of just exactly how much Autism does affect so many aspects of our lives... he probably does what my parents and sister do... they see the word "disorder" and assume that you are defining yourself as 'disordered' ... and from the tone of your post (or maybe just the tone in my head) that doesn't at all seem to be the way you're looking at it..


Autism doesn't define who we are, but it does have a big hand in shaping us . Just as do our teachers, families, economic status, country or city life, etc.... To deny it ever existed is like denying having parents or denying we grew up in [insert birthplace here]... it's irrational. It's illogical. We did have a parent. We did grow up in [x]. We do have Autism. It affected us. We can train ourselves to hide the accent, but we can't deny it's inside us. And there is no reason that we should.

I think it's odd that you would be so frightened at the prospect of having someone "take away" your diagnosis. A diagnosis is a name for something that's present or isn't present; whether you have the name doesn't change what's there. It's kind of how, if I peel the label off a can of chicken soup, it'll still be a can of chicken soup, and just the same chicken soup as it was before.

People do lose their autism diagnosis relatively often. It happens because they have learned to cope with our crazy world and don't need that diagnosis anymore. They are, however, still neurologically autistic, and in your case, if you lost the diagnosis you would still be culturally autistic because you identify as being on the autism spectrum, share experiences with people on the autism spectrum, and share a cognitive and sensory style with people on the autism spectrum.

So... yeah, even if you magically learned perfect coping skills and never had another single problem related to autism in your entire life, you'd still be autistic in all senses but the diagnostic...

It is by no means universal, and I am not there myself, but for a LOT of people I have met, the name and the formal identification are very important.

I don't have a diagnosis yet and due to current circumstances may have to wait a year or so before I can actually go to a specialist (hopefully not that long, as I actually need help ... I'm not one of these people who is doing great and just trying to figure out why they're quirky).

Meanwhile I have been reading a lot about AS/autism and obsessing over it, really, and I identify with it so much, and am realizing more and more how much it affects me. I'm in my early twenties and have spent at least half my life desperately trying to figure out why I am so different and why things are so much harder for me than they seem to be for other people, and this is the first and only thing I have ever identified with and it fits so well and unites so many different aspects of my life experience and personality that I was formerly unable to make sense of or to put together into a coherent picture. For the first time in my life I have an awareness that there are other people who have challenges and experiences very similar to my own. Given all this, it's reallly hard not to be identifying, in my thoughts, as autistic. And yet ... I don't have a diagnosis. And even though my former psychiatrist has agreed that it's likely I'm on the autistic spectrum, it's not her specialty and there is still doubt ... if, when I finally go to a specialist, s/he tells me, "No, you don't have it," I'm going to feel very confused and lost again.

I don't know if that's similar or not to what you're feeling. But I don't think your feelings are unhealthy.

If you can step back a bit and look at this objectively, I think I can show you a little of how we can learn some things about ourselves and others and our relationships with others and of ourselves within society overall ... and just by carefully listening to our own words ...

... and I hope you can believe this is not any kind of attack! Rather, this is a huge part of how I have been able to come to this point in my own life where I could not possibly care even the slightest about whether or not anyone else anywhere ever acknowledges or accepts-as-true certain facts I now know about myself.

Why do you say that in past tense? And of course, that is because of the current "identity crisis" ...


Nah. It is much better to live life anonymously, as in “the conscious renunciation of any kind of personal prestige!” (a friend) Otherwise, we can only spend the remainders of our lives believing and/or viewing ourselves either above or below some/many/most other people ... and that is ultimately a miserable way to live.


Asperger's certainly does play a very dominant role in our personalities, and knowing about both that and it certainly can help us learn to be at ease with ourselves.


Do you actually disagree with him, or do you simply not know what to think if he *is* correct?

*Those* are the kinds of answers we need in order to be okay both with and within ourselves no matter what anyone else either here or there might ever think about any of this.

Leejosepho, I disagreed with my friend that I have problems with my identity and that I am unhealthy in my identity. He does not know much about Asperger's/Autism. As I think about it, it is rather absurd that I hold so closely on to this label I have imprinted upon myself.

I read a conversation on this forum about pride and Asperger's/Autism (it was predominantely Asperger's) and a lot of people were not particularly proud of their diagoses like I am. I find what I have overcome and the good qulaities within the disorder something to be proud of. My friend understood being proud of a disorder as he had met people with physical disabilities who wouldn't have it any other way.

It's the things that I've gone through, living with and dealing with autism that made me the person, but I wouldn't use my Dx label as a part of my identity. I'd rather use my personality as my identity.