Post Diagnosis Blues
It’s the one year anniversary of my diagnosis today and the only thing it has given me is insomnia.
It was two years ago when I first realized that I had some form of autism. I felt like I’d been hit over the head by a brick. I discovered the online autism community and for the first time in my life, I realized that perhaps there was a place for me in the world. I bought some books and tried to see myself as an ‘Aspergirl’, or ‘Aspien Woman’ (cue the glitter and unicorns).
After a year, I finally plucked up the courage to try for a formal diagnosis. I was diagnosed on 28th November 2016 with ICD-10 F84.0 Childhood Autism aka ‘Autism’.
That’s when it all went pear-shaped.
I tried to launch myself into the online world, to make friends and to finally gain the acceptance I’d been looking for all my life, only to find that there were many places in which I was no longer welcome because I’ve got the wrong code on my diagnosis letter.
Here’s a list of events in rough order of occurrence. I don’t mean to bore you, but I couldn’t think of any other way of doing it. After all, I need to include examples, if I ever have any hope of getting my point across, so please stick with it
1) First, I found a support group for British women with Asperger’s on Facebook which looked perfect. I felt rather uncomfortable because it was specifically for people with Asperger’s, but it looked so perfect and I wanted to join so badly. I was newly diagnosed and vulnerable and I should have known better.
I felt like was morally obliged to disclose my diagnosis when I applied to join. I wanted to be up-front right from the start, just to make sure that there were no unwanted complications later. This felt pretty uncomfortable, but I forced myself to do it, but hey, I needn’t have worried, the founder of the group sent me a lovely message telling me that I’d fit right in.
Everything went well for a few weeks until someone started a thread entitled ‘Do you like the word Aspie?’ The conversation was perfectly amicable. I noticed another woman say that she liked the word, but couldn’t use it as she was actually diagnosed with ‘Autism’ due to a childhood language delay. I was intrigued to find another person like me and I excitedly joined in with the chat.
Then one of the moderators appeared and said:
“I’ll decide later what I’m going to do about people who say that they don’t have Asperger’s”
Similar unpleasantness from her followed and eventually I complained to the group founder about it. I received the old sorry-you’re-upset routine and I was so disgusted, I’ve never been back.
This sent me into a tailspin that lasted for weeks. I couldn’t sleep, I had headaches, lost my appetite and was generally unwell.
2) I got over it eventually and I decided to give Wrong Planet another try. I soon encountered someone who believed that those with Autism are ‘neurological first cousins’ to those with Asperger’s and that even though they are both ASDs, they occupy completely separate points on the spectrum. I politely pointed out that this was not in fact the case, that I was just the same as him, but I happened to have had a speech delay when I was a child, hence my diagnosis of Autism.
The decision to use the words ‘first cousins’ rather than ‘brothers and sisters’ was a nice touch. His comments made me think of all those diagrams of human evolution, where lesser forms of humanity are shown in an inevitable progression towards perfection. He denied that he meant what he obviously did mean and everyone else supported him.
3) Never mind, there’s always good old ‘Aspie Central’ forum. A similar thing happened there. Again, I called them out and the person claimed that I had misinterpreted their words and they didn’t actually mean what their words said. It’s funny how some people’s grasp on their mother tongue seems to slip when forced to justify the words that they’ve chosen to use.
4) I still had the books I bought pre-diagnosis, perhaps they would be of some comfort to me?
‘Aspergirls’ – Rudy Simone
‘I am Aspien Woman’ – Tania Marshall
’22 Things a Woman with Asperger’s Wants Her Partner to Know’ – Rudy Simone
….or maybe not.
5) I threw myself into reading news articles about autism. Time after time, I encountered the myth that Autism is a diagnosis given to those with a below average IQ and language problems. I commented on a few, but gave up, as no-one seemed to care about the fact that this isn’t true.
6) I tried reading blogs by autistic people. There’s some very interesting writing out there and I can readily identify with many of the autistic authors, so it was certainly a good idea. However, it wasn’t long before I encountered the usual nonsense. I’m thinking of a specific example which was discussing the use of language delay to distinguish Asperger’s from Autism. It wasn’t so much the blog article itself that was the problem, but the comments underneath.
It was as if they had suddenly been given carte blanche to express all their previously hidden prejudices, like Brexit seems to have given the British people carte blanche to express their previously hidden racism. It was presented as a tragedy that the DSM-V had removed Asperger’s as a separate diagnosis, after all, how else were they going to distinguish themselves from those worthless individuals with ‘Autism’.
7) Perhaps I should give up on the online world and try and find a local support group and meet autistic adults face to face? I was quite pleased to find a local group which sounded perfect, but unfortunately, I won’t be able to join it because it is called ‘My City Adult Asperger’s Group’ and I don’t have Asperger’s.
I can imagine people reading this article and thinking to themselves “Of course you’re welcome, don’t be silly!’. It is easy to say that if you are sitting there with a diagnosis of Asperger’s (or ASD) – you are automatically included, you’ve never had to think about it. You’ve never had the moral dilemma of wondering whether to disclose ‘the truth’. I know that if I’m honest, there’s a reasonable chance that I may not be welcome, but I don’t see why I should have to lie about it either. It’s not a pleasant feeling.
You’ve never had to sit there and listen to some people with a diagnosis of Asperger’s telling the world that you’re inferior to them (or rather ‘different’, as most people these days take at least some care to try and disguise their objectionable opinions with gentle words). The words might be gentle, but their real feelings are clear from tone and context.
I find some amusement in this at least. Although most people understand that they need to appear reasonable, open minded and pleasant on the surface, they can only keep it up for so long before their real feelings start to show through. I’ll use example number 7 to illustrate my point.
The group is called ‘My City Adult Aspergers Group’, which is a clear indication that it is a group for people who have Asperger’s Syndrome, is it not? However, when I study the blurb closely, it becomes clear that they have attempted to make the group appear inclusive by including the phrases
a) “The group is open to any person on the spectrum [so far, so good!] who is interested in learning more about and sharing their experiences of Asperger Syndrome”.
The thing is that I cannot “share my experiences of Asperger Syndrome’ because I haven’t got Asperger Syndrome.
I have no objection to “learning more about… Asperger Syndrome” of course, in the same way that I happy to learn about a wide range of subjects, including irises, the social history of London, Minoan vases, vegetation, the biology of elephants or how to make the perfect soufflé. However, as people are so fond of reminding me, I don’t have Asperger’s Syndrome’, so it’s not the same thing.
b) “Some of our members do not have a formal diagnosis of Aspergers, but identify with the condition”
Although, technically, it could be argued that I would be allowed to join the group on this basis, it would be disingenuous to do so, as I believe that this statement is actually designed to express the fact that the group welcomes members who do not have a formal diagnosis, but believe that they might have Asperger’s. This does not apply to me – I know that I don’t have Asperger’s.
It’s ironic that I would have been allowed to join before my diagnosis, but I am no longer allowed to do so. That would have been amusing. If I’d have joined pre-diagnosis, I could have stood up and given a dramatic farewell speech, before gently flouncing out of the door. Damn that piece of paper.
When you actually sit down and analyze the group’s blurb, it becomes obvious that they have no genuine wish to be inclusive, despite the use of some appropriately fluffy words, such as ‘on the spectrum’ and ‘identify with’. However much they would like to pretend that they are politically correct, their true nature shows through. The clue is in the name I suppose.
I’m sure that if I asked them nicely, they would let me join, but that’s not the point. I would want to feel like I have a right to be there, that I am valued and accepted for who I am, rather than being merely tolerated. I don’t want to join an organization that makes me feel like they’re doing me an enormous favour by even allowing me to be there.
Here is my version of the famous Grouch Marx quotation
‘I wouldn’t want to be a member of any club that wouldn’t have me as a member’
It has been suggested that I should join Asperger’s and ‘Aspie’ groups if I want to and just lie about my diagnosis. I categorically refuse. Firstly, such groups are places where people can discuss their experiences of being autistic in an honest fashion, so lying completely defeats the object. More importantly, if I pretend that I have Asperger’s, not only would I be doing nothing to disabuse people of their prejudices, I would also be complicit in reinforcing them.
I refuse to compromise my own integrity to make life easier for those who choose to exclude me and discriminate against me. When you start a group or an organisation, you are free to call it whatever you like. In every case, a deliberate decision has been made by the groups’ founders to use Asperger’s or Aspie in the group’s title. They did this for a reason and the reason was to exclude people like me.
I have heard it said that the use of the word ‘Aspie’ is ableist. However, in order for the term ‘Aspie’ to be ableist, it would have to be accepted that people with Asperger’s are automatically more ‘able’ than those with Autism, which isn’t actually true. I would certainly agree though that the word ‘Aspie’ is divisionist and I have grown to hate it.
Of course, on one hand, I understand that people are (and should be) free to define themselves in whatever way they choose. However, they must also be aware of the consequences of their decisions.
When you choose to define yourself as an ‘Aspie’, you are essentially stating that you believe yourself to be different to me. You are celebrating the chasm that you think should exist between us and if it doesn’t exist, you’re going to invent it.
Can I tell you something you need to hear? You’re not different from me. It’s all fantasy. It’s no more real than snarks, pixies, balrogs, dragons, elves or fairies. So take your head out of your arse, put your glitter away and grow up.
I’ve decided that I’m going to go back to university as a post-graduate student and study autism. I have an idea for my research project ‘Prejudice Within the Autistic Community’. This probably won’t make me very popular, but to be honest, I’m not that popular anyway, so what have I got to lose?
The application form asks me if I have any disabilities. I don’t actually see my autism as a disability, but as it has some genuine relevance to my application, I would like them to know about it. The form has a long list of possible disabilities, so I scroll down to find the relevant section. The option is there for ‘Autism Spectrum Disorder/Asperger’s Syndrome, but not for Autism. I can only presume that the person who wrote the form did not believe that people who have a diagnosis of ‘Autism’ were capable of going to university.
My only honest option is to tick the box marked ‘other’ and write in ‘Autism’, but I have decided to lie instead. I cannot even take the tiniest risk that my application will rejected because I have the ‘wrong diagnosis’.
Still, I’ve got a plan now and as my autistic friend said recently
“If you can’t join them, beat them”