Informal diagnosis?

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A few months ago, I recieved an informal diagnosis of ASD (autism spectrum disorder). I took the ADOS-2 with through a local university with a graduate researcher rather than a doctor. That is the best I could do for now. I'm so excited about finally having an answer for why I am the way I am and I love talking about it with friends and family! Sometimes, I feel guilty when I say I'm autistic because of the context in which I was "diagnosed". What do you think? I am not self-diagnosed and I have paperwork supporting my claim, can I call myself autistic in an informal setting?

I think it makes more sense to say you're "on the autistic spectrum" than to say you're autistic, just because what most people think of as autistic isn't that accurate for many people on the spectrum. It can also be helpful to say you "have autistic traits", because then they're more likely to grapple with your actual issues than to argue with you over what autism means. Maybe.

But IMHO it's a personal choice. Some people are self-diagnosed (which I would say you are not), and some people prefer to stay that way (although I see that more with parents who don't want their kids to be 'labeled'), which I am also fine with. An official diagnosis can be useful but isn't necessary for everyone.

I sometimes feel this way myself because I wasn't really officially diagnosed either. I was simply told by a therapist and a psychiatrist that they believed that I was on the spectrum and they didn't do any further testing because at the time I was completely in denial and I got angry at them for even making the suggestion. These days I've done my own research and I believe that they were right, but it's left me in an awkward place somewhere between being self-diagnosed and officially diagnosed and I'm not sure which I should claim.

I personally don't talk to anyone about being autistic, but if I did, I don't think I'd feel comfortable claiming to be autistic when I don't have an official diagnosis. I like shilohmm's suggestion, though, of just referring to the spectrum itself rather than using the word 'autistic' that people are unlikely to understand anyway. I feel like most people are pretty unaware that there even is a higher functioning side to autism.

Agree with the above. If you just say you're autistic, I think most people will tend to interpret that as classic autism, and I have the impression that you're pretty high functioning. Probably better, in this circumstance, to say you've got Asperger's (even though it technically it's been folded into the Autism spectrum) or a high functioning form of Autism.

While what you did isn't technically a diagnosis, it's certainly more than a self-diagnosis. As far as I'm concerned, it's good enough to say you've got Asperger's as long as you're not trying to do something like ask for accommodations.

I disagree with the responses so far: nowadays most people should know that autism is autism and there's that functioning labels aren't all that useful: they're just another way for society to categorise and stigmatise people. Yeah you can say you have autism/are autistic, professional diagnosis or not.

For understanding and self knowledge an "Informal" assessment like this has some advantages. It does not put anything on your medical record which an insurance company could use against you. You can concentrate on your actual ways of thinking and working out how to do the stuff non autistic people can do without thinking.

You can also lay doubt to rest. You are not a winging special snowflake. You have tested your observations of yourself with someone who is informed and also under supervision. They have viewed you, your ways of doing things and your history and informed you it is consistent with being on the spectrum.

Also, you are spared that nasty cleft stick which happens in a formal setting where the diagnosis process also acts as the gatekeeper to insurance payout, statutory benefits or accommodations like n the workplace.. One that thinks of the situation where one's profile is clearly autistic, but by.fortuitous combination of upbringing, intellect, strong interest In an areas which leads to employment, one is in work and housed and holding it together, meaning at first sight one does not appear to have been disabled by that profile, hence no diagnosis as the DSM does not have a "Severity 0" level.