Those Damn Self-Diagnosed Aspies
Wonderful news that the National Disability Insurance Scheme is being rolled out across the nation - although it's just a start. I quite like the idea someone posted half in-jest on twitter that the Medicare levy be increased to 5% and cover everything - psychiatry, dental, optical, aged care...now that would be a model for a healthy well kept society. But still, the NDIS is a long way from perfect, but it's a lot better than what we have now. Good news today as well from Disability Reform Minister Jenny Macklin that the NDIS will cover autism treatment.No one can deny that autism rates are on the rise,and early intervention is crucial in helping those with autism achieve their full potential. I did wonder though, would it cover the cost of diagnosis.
There's a massive stigma around those who self-diagnose with Asperger Syndrome, often with very good reason. Looking for an excuse to be anti social? Simply want to be a special snowflake, just like everyone else? Take a quiz, slap a diagnosis on yourself, and away you go. And I say that falling into the category myself. I have self-diagnosed with Asperger Syndrome. I've never had a formal diagnosis.
Believe me, the last thing I want is a reason to feel different or unique. And I'm not looking for an excuse to avoid contact - for much of my life I've desperately wanted to make friends but have never been able to go about it in quite the right way (I've posted previously that this is not about being anti social at all). Nor did I go looking for the label - it found me, a number of years ago when my boyfriend at the time, himself a (medically diagnosed) Aspie, suggested I was one too. I didn't embrace it - in fact I burst into tears. I wanted to be liked, not have someone think there was something "wrong" with me. But...as I started reading into the condition over the next few months...it did make sense. The social aspects were one thing. But the rest - unusual gait? I'd been made fun of for my "funny walk" my whole life. Extreme clumsiness? Yes. Stimming? Ever since I was tiny, whenever I'm at home I've carried a piece of ribbon around with me constantly, twirling it around my fingers. The rocking, the unusual speech patterns, the lack of visual imagination...it's all there. It took a while to get my head around it, but in the past years or two, I've started saying the hell with it. This is who I am.
So if you're so sure, they say, why not get a formal diagnosis? Are you afraid someone will take your special label away from you? Not at all. The reason I've not sought out a formal diagnosis is very simple - money. In order to get an adult autism diagnosis, I would have to attend several sessions with a specialised psychiatrist - each one privately funded. It would cost upwards of $1000 for me to, essentially, confirm a hunch. There's no other reason to do it - I'm well beyond the limit of any "help" or intervention, I just need to make it from here to the grave with my loved ones knowing they need to strap in for a wild ride. Oh, and I'd get to claim the title of "real" Aspie, formally diagnosed. That would be nice. But for now, I'm trying to keep a family of three on an admin monkey wage whilst I'm studying. The fridge needs replacing. Xander is ten and needs to go to the vet every few minutes. We don't have several hundred spare dollars sitting around for me to get a formal autism diagnosis - and if we did, I'd spend it on bike accessories anyway. It doesn't mean I cope any better if I'm not logged into all my databases at work in exactly the right order.
Note: I've filed this post under "disability" and referred to the NDIS, but I actually like the view that high functioning autism is not a disability at all, but a variation of "normal"...perhaps even a next step on the evolutionary scale where we don't need physical agility or to be part of the pack to survive. Who knows? I don't spend a tonne of time on this; I just like the concept.
There's a massive stigma around those who self-diagnose with Asperger Syndrome, often with very good reason. Looking for an excuse to be anti social? Simply want to be a special snowflake, just like everyone else? Take a quiz, slap a diagnosis on yourself, and away you go. And I say that falling into the category myself. I have self-diagnosed with Asperger Syndrome. I've never had a formal diagnosis.
Believe me, the last thing I want is a reason to feel different or unique. And I'm not looking for an excuse to avoid contact - for much of my life I've desperately wanted to make friends but have never been able to go about it in quite the right way (I've posted previously that this is not about being anti social at all). Nor did I go looking for the label - it found me, a number of years ago when my boyfriend at the time, himself a (medically diagnosed) Aspie, suggested I was one too. I didn't embrace it - in fact I burst into tears. I wanted to be liked, not have someone think there was something "wrong" with me. But...as I started reading into the condition over the next few months...it did make sense. The social aspects were one thing. But the rest - unusual gait? I'd been made fun of for my "funny walk" my whole life. Extreme clumsiness? Yes. Stimming? Ever since I was tiny, whenever I'm at home I've carried a piece of ribbon around with me constantly, twirling it around my fingers. The rocking, the unusual speech patterns, the lack of visual imagination...it's all there. It took a while to get my head around it, but in the past years or two, I've started saying the hell with it. This is who I am.
So if you're so sure, they say, why not get a formal diagnosis? Are you afraid someone will take your special label away from you? Not at all. The reason I've not sought out a formal diagnosis is very simple - money. In order to get an adult autism diagnosis, I would have to attend several sessions with a specialised psychiatrist - each one privately funded. It would cost upwards of $1000 for me to, essentially, confirm a hunch. There's no other reason to do it - I'm well beyond the limit of any "help" or intervention, I just need to make it from here to the grave with my loved ones knowing they need to strap in for a wild ride. Oh, and I'd get to claim the title of "real" Aspie, formally diagnosed. That would be nice. But for now, I'm trying to keep a family of three on an admin monkey wage whilst I'm studying. The fridge needs replacing. Xander is ten and needs to go to the vet every few minutes. We don't have several hundred spare dollars sitting around for me to get a formal autism diagnosis - and if we did, I'd spend it on bike accessories anyway. It doesn't mean I cope any better if I'm not logged into all my databases at work in exactly the right order.
Note: I've filed this post under "disability" and referred to the NDIS, but I actually like the view that high functioning autism is not a disability at all, but a variation of "normal"...perhaps even a next step on the evolutionary scale where we don't need physical agility or to be part of the pack to survive. Who knows? I don't spend a tonne of time on this; I just like the concept.
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