1:03am May 14, 2014

Not allistic, not autistic, not sure what to call myself?

So I have PDD-NOS, or atypical autism. This is because my symptoms were late onset and my cognitive skills are above norm. I usually just refer to myself as “on the spectrum” but I feel like that’s too vague for a lot of uneducated people. At the same time I don’t feel comfortable labeling myself as autistic because it feels inaccurate and like I’m stepping on the toes of people who really are autistic?

I can strongly identify with the position you feel you’re in right now. At least I think I can.

So… when I was younger, the doctor told my parents I was autistic. But the diagnosis on paper, for a wide variety of reasons, was always atypical autism, PDDNOS, or DDNOS (developmental disorder not otherwise specified). I heard things about autism and I didn’t really understand them. I also heard things like “underlying developmental disability” and “severe, complex developmental issues” and things like that, and it all kind of floated over my head. I didn’t understand these words, or why they were using them, or how they applied to me.

I read some things by autistic people, such as Donna Williams and Temple Grandin, and sometimes I identified more than others. But however much or little I identified, they didn’t tell me what autism was or why people were applying these words to me. I also met some other autistic people, and some of them made more sense to me than anyone ever had in the world, and others did not make much sense to me. I wasn’t aware of this fact, but I was beginning to discover that there are many types of autism and that each autistic person is on a huge continuum in many dimensions, closer to some other autistic people and further than others.

As I got older, I was actually finally diagnosed on paper with what they’d called me orally all that time, which was just plain ‘autistic disorder’. It turned out I’d fit the criteria the entire time, but the doctor had felt that diagnosing me with autistic disorder as a teen in the nineties would have meant that insurance would’ve given up on me and not paid for treatment. He was having enough trouble keeping me out of permanent institutionalization as it was, so he used PDDNOS to try to make it look milder than it was.

But anyway… when I first encountered the autistic community, I made a point of always saying that I had PDDNOS or atypical autism, not 'real’ autism. I felt like 'real’ autism was only for people like some of the kids I’d gone to school with, who had no speech at all, and very low IQ scores, and things like that. I felt like if I called myself autistic, I would be taking away from people with much more severe problems than I had, and that I was somewhere in between 'real’ autistic and non autistic. Sometimes I wondered if I was really on the spectrum at all. I had a lot of self-doubt.

I remember the first time an autistic person asked me, “Are you sure you were diagnosed with atypical autism because you’re atypical, or was it because the people diagnosing you didn’t have as much of an idea the many ways that autism can look like?” I dismissed that out of hand, but I have come to believe she is correct.

I made it a mission to study autism as much as I could. Not autism from the eyes of professionals, but autism from the eyes of autistic people. I collected books – I have over a hundred, maybe closer to two hundred now – by autistic people. I printed out binders full of articles by autistic people. I interacted with autistic people both online and offline, within autistic communities and outside of them.

This taught me a lot of interesting things.

It taught me how many different kinds of life experiences there are, that all fall under the heading of the autistic spectrum.

It taught me how diverse autistic people’s experiences are. It taught me that there are many, many different kinds of autistic people, far more than the three or four given by the DSM.

It taught me that the DSM and ICD do not actually divide up autism according to the real similarities and differences between autistic people. By which I mean…

If you take three autistic people who are almost completely identical, the DSM might give them three totally different diagnoses – autistic disorder, Asperger disorder, and PDDNOS. If you take three autistic people who are almost completely different, the DSM might call every single one of them Asperger’s (and one of them may even turn out to have mild Rett’s – it has happened to people I knew with a prior diagnosis of HFA or Asperger’s, who then gave birth to a child with severe Rett’s and got tested for the gene). This taught me that the DSM doesn’t tell us much about which kinds of autistic people are which.

The DSM itself came to similar conclusions. For better or worse, the next DSM will not have a category for Asperger’s or PDDNOS. It will only have a category for Autistic Spectrum Disorder, which will encompass everything. There are things I don’t agree with in how they are handling that, but I think that part is a step in the right direction. It doesn’t deny that there are vast differences between different autistic people, it just says “We don’t know enough about the differences, to accurately divide autistic people up into categories yet.”

Anyway, gradually I came to realize that whether or not I qualify as “autistic disorder” or as “PDDNOS/atypical autism” doesn’t matter that much. They are both autism. And which one you get, depends more on who diagnosed you, and when they diagnosed you, and the circumstances of your diagnosis, than it depends on who you are.

For instance, you say that you got diagnosed with PDDNOS partly because you have above-average cognitive skills. In fact, that is not part of the diagnosis of PDDNOS. There is only one kind of autism where things like IQ are taken into account, and that is Asperger’s. In order to have a diagnosis of Asperger’s, you generally have to have a normal or higher IQ, although sometimes you can have a mild intellectual disability and still qualify, depending on the doctor. But there is no autism diagnosis that requires a low IQ. You an have a high IQ and have a diagnosis of autism, Asperger’s, or PDDNOS, any one of them.

A lot of doctors will diagnose PDDNOS based on stereotypes of that nature. Makes eye contact? Can pass a bit? The autism must be 'atypical’ then! Things like that. Not the actual diagnostic criteria, but subjective stuff that the individual doctor throws in there. It used to also be common, as it was when I was diagnosed, for a person to be fully diagnosable with either autistic disorder, but to be diagnosed with PDDNOS as a way to “soften the blow” of diagnosis. This was extremely common in the nineties when I was first diagnosed – I read about it in “Unstrange Minds”, by a man whose daughter was diagnosed at the same time I was, with PDDNOS instead of autism, even though like me she fit the autism criteria.

The lateness of onset can sometimes get you bumped into PDDNOS/atypical autism. Sometimes. Other times it can get you bumped into Asperger’s. Or if your problems are extremely severe, Childhood Disintegrative Disorder. The only form of autism that absolutely required an early onset was Autistic Disorder.

But at any rate… I’m extremely familiar with the differences between the different diagnostic criteria… but in the end, in a place like the autistic community, it shouldn’t matter. For us, autism is generally a word we use to apply to the entire spectrum – autistic disorder, Asperger’s, Rett’s, Childhood Disintegrative Disorder, PDDNOS, atypical autism, whatever – most of us just call all of that 'autistic’. Lots of people in the autistic community are diagnosed with Asperger’s or PDDNOS, and simply refer to themselves as autistic.

There are some people who become extreme sticklers for who should be allowed to call themselves autistic and who should not. They are generally people who believe that they, as people who (at least say that they) are diagnosed with autistic disorder, should be the only ones to be able to say they’re truly autistic. They generally have a stick up their butt and are not worth listening to on this matter. Their only contribution tends to be making people unnecessarily self-conscious about whether their diagnosis (or lack thereof) is good enough, and that’s not much contribution to make to a community. I’ve run into a few of these in my time and eventually had to learn to ignore them, otherwise my sanity would suffer. In every community there are people who want to be the most 'pure’ examples of the 'real’ person in that community, and they do something that around tumblr is usually called 'identity policing’. Where they run around trying to root out the people who shouldn’t belong. I wish the autistic community didn’t have this, but autistic communities are not as immune to playing social games as some pretend to be, and it’s just something you have to live with.

Most people are not going to care whether you were diagnosed with autism, PDDNOS, atypical autism, Asperger’s, CDD, or Rett’s. Most people will just welcome you if you say you are autistic. Most people will not say that atypical autism is not real autism.

That doesn’t necessarily mean you won’t be self-conscious for awhile, though. I was uncomfortable, for years, calling myself autistic, even after I learned that I was supposed to be diagnosed with autism and not PDDNOS and got my diagnosis changed. I was always ridiculously careful to say I only had atypical autism. Any time I saw a difference between me and another autistic person, I would think, “Well that is because I am atypical,” rather than “That is because all autistic people differ from each other.” The only thing that cured me of that was time, experience, and gains in self-confidence.

But atypical autism is definitely autism in my book. It’s not some intermediate step between autistic and non-autistic, it is autistic. And every single autism diagnosis contains people with high levels of certain cognitive skills (such as those tested on IQ tests). I was considered gifted as a child and I have an autistic disorder diagnosis, I am far from alone in that fact. (My IQ dropped to 85 as I got older, but that’s another story and doesn’t make me any more autistic than someone whose IQ remained high.)

I hope any of this information was useful. Basically, very few if any people are going to bite you for calling yourself autistic or using the #actuallyautistic tag, and anyone who does bite.. it’s their problem, not yours. If you feel uncomfortable saying “I am autistic”, you can say “I am on the autistic spectrum” – most autistic people online use the two interchangeably, but sometimes saying the second is less scary than the first until you get used to that. And seriously anyone who gives you trouble is not worth listening to, no matter what kind of story they spin up to make it sound like you’re hurting them terribly (actually, the worse story they spin up, the less you ought to listen, because mostly that’s deliberate manipulation on their part, formed from their desire to be the one in the room who has suffered the most).