Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Wednesday, August 29, 2012

Yes, self diagnosis can be valid.

We live in a world where some autism "experts" think that there is no such thing as an autistic female, or that everyone on the spectrum was caught in childhood, or that autistic people never speak, or that all autistic people are either savants or completely useless, or that autism is an extreme male brain, or that only white people can be autistic. And in the USA, at the least, evaluations can cost into the thousands. Not that a multi-thousand dollar evaluation can't end with "You have some traits, but *insert group here* autistic people don't exist. It can. And free services for evaluation tend to be one of the following:
  1. Nonexistent. Nothing to do here, unless you know how to create something that doesn't exist.
  2. Specific to a group you aren't in. Might have an income range it caters to, and someone just above that might not be able to afford a paid evaluation.
  3. Long waiting list. Cause there are a LOT of people who could use the dx, but can't afford the paid services. It can take months or years to be seen at one of these.
  4. Biased. The people doing the evals here can have all the same problems that the "experts" have. 
So getting a diagnosis officially with a piece of paper and everything isn't always possible. It's also not always a good idea. ADA and anti-discrimination laws and all, discrimination still happens. An autistic man was denied a heart transplant largely because of his autism recently. A hospital said it wouldn't perform a kidney transplant on an autistic girl using a kidney from a matching relative who was only offering it to her. Autistic people get neglected, abused, harassed, killed on a fairly regular basis. Being diagnosed isn't always safe.

That doesn't mean that self diagnosis can't be done wrong. It can. Declaring yourself autistic after one internet quiz just doesn't work. Most of the quizzes are rooted in false stereotypes and theories. The Aspie Quiz is based on the idea that autism=neanderthal genes, last I heard. Besides the fact that correlation does not make a diagnosis. It just doesn't. For successful self-diagnosis, you need to understand the entry in the DSM. You need to understand what does and does not count as a clinical impairment, what is and is not a coping method which covers up a trait on the list, and what biases you and others around you may have. You should read what other autistic people have written about what being autistic is like, from all around the (not linear) spectrum. You should talk to autistic people about why you think you might be autistic (autistic people who are OK with self-diagnosis as a concept at the ones to go to here, by the way.) Research research research. Because it's not as simple as one evaluation. You need to somehow manage to evaluate yourself without bias after teaching yourself how to do an evaluation. It's not easy. But when someone does put in the work involved, yes, it can be valid. (Also a lot of these people wind up with a really good sense of if someone else is or isn't autistic, because they kind of just taught themselves how to evaluate for autism.)
I'd be just a wee bit of a hypocrite if I took a stand against self-diagnosis, since I was writing here as an autistic triple major for a couple weeks before I actually got a diagnosis. And I wasn't any less autistic during those couple weeks than I am now. I just didn't have a piece of paper that said my brain is wired the way it is. Which is a kinda sucky reason not to be able to talk about how your brain works, when you think about it. So while I will totally talk to folks who decide they are autistic on the basis of one internet quiz and no research to explain why that's not enough, if you do your research and conclude that you are most likely autistic, I won't be the one who says "NOOOOOO you can't be autistic because you don't have a piece of paper that says you are." I might be the one who takes the time to talk through why you think you're autistic while you're doing that research, if you decide you want to ask me for that, though.


  1. can a person with a self diagnosis be a good advocate (for themselves/others) though since everyone seems to doubt them?

    1. Since no one is under any obligation to provide their paperwork, you might not even KNOW they are self-diagnosed unless they tell you.
      And the point is that we shouldn't doubt them, at which point it's not an issue.

  2. I really like your last sentence! It's been a very confusing road for me so far, and even though I'm working on getting diagnosed, I'm getting a lot of reactions saying I can't be on the spectrum. It's very comforting to know that people who *are* diagnosed won't dismiss my concerns the same way, but will ask me why I think I might be autistic.

    1. Me too. I don't seek to be "officially" diagnosed because I feel that would give me all kinds of obligations I can't handle right now, but talking about how I tick with people who have experience with autistic people (like my best friend, whose son is on the spectrum) helps a lot. And it explains so much about me, and my youngest daughter, and possibly my father and grandfather.

  3. I cannot access an official dx as an adult because of insurance and lack of qualified professions to screen adults. There are a couple in my area, but they require me to pay out of pocket, which I can't do because I'm on a fixed income. It is in part because of this and because of other underserved people in the autism community, that I created an autism petition to get the politicians to give all 50 states funds for affordable autism services to all who want them for their children or themselves. The petition is at:

  4. I've been thinking that I might be autistic for a while now, or maybe aspergers. I fit most, if not all the criteria on most websites and the symptoms seem to click with me. When I'm out with people or wherever, I can almost feel it? Like I'm different, noticing things that others aren't even thinking about. I recently took the AQ and I know this isn't a very good diagnosis implement but I got 37? Which is securely above the 32 mark. So, I was just curious, it doesn't really affect me but I would like to know. Just when little things in a plan or routine go wrong it literally messes me up for hours.
    Any advice would be helpful, thanks!


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