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Hi I'm Leonie, Collector of feathers, pebbles and words, with ink-stained hands, an overactive mind, and a sunshine-filled heart.

This blog is all about: ART > FOOD > LOVE > RUNNING > NAVEL-GAZING > ASPERGERS > SELF-DISCOVERY


I think I might be Aspie, part 2: different but not disordered




When I last wrote about tentatively discovering I might have Aspergers, I was searching, scouring far and wide for connection and meaning, for more shared experiences, for bloggers and friends who got me, and for verification that I'd finally found my 'rat people'.

That was four months ago.

Now, regardless of the formal outcome of continuing sessions with my psychologist, who agrees that I have many traits consistent with a diagnosis of ASD, I am now certain that I am on the autism spectrum. I feel like someone has just handed me all the cheat codes for life. Or in the words of Gru from Despicable Me... "Liiiightbulllllb".

The formal ADIR and ADOS tests are well above my budget right now (currently $1000 in Australia - seriously!?), however if the reams of writing I've done in the past few months namely completing a whole bunch of diagnostic questionnaires including CARS2-HF, BAL, BD-II, Conners-3 and Conners CBRS is anything to go by, then yep, I'm smack bang in the middle of the spectrum.

However, despite my psychologist's thoroughly convinced (yet ultimately 'non-official') diagnosis, the diagnostic boundaries are unclear. My thought patterns, test scores and gut feeling indicate that I'm on the spectrum; yet my behaviour and subsequent coping mechanisms are so ingrained, I don't appear to have any outward dysfunctions (or even inward dysfunctions at times. On occasion I mask things from myself).

It's awful, this 'half a disorder' kind of feeling; identifying as having ASD, a genetic condition, something that's been there since birth, yet I still feel that I don't own it. I don't know if I'm autistic enough. I know a lot of newly diagnosed or self-diagnosed Aspies struggle with this. It sucks; sitting here in the shadows nervously waiting for someone (who?) to give me permission to apply a label to myself, that in reality means nothing as the presentation of ASD is as individual as a fingerprint. And besides; I don't know if I want to go shouting it from the rooftops just yet. Don't get me wrong - it is an amazing, positive feeling to suddenly discover such a thing about yourself - but I'm aware of the commonly held stereotypes and at the moment I'm still unsure whether coming out would achieve anything anyway. This has only ever been about me, my inward struggle, and to a lesser extent about my husband, as some negative behaviours occasionally manifest in our relationship because of my ASD.

So what purpose would a formal diagnosis serve? I've talked about it with my husband and he's not that fussed about the whole thing. (Like, 'ok, you're crazy, whatever; how do we fix it so I can touch your arm without you freaking out?'. Yeah - he's a practical guy.) And if I'm not going to come out of the Aspie closet in a big way just yet, then why do I even need permission to label myself?

My onion-layered brain is having a field day with this one.

My dysfunctions don't warrant clinical attention, so does that mean they are not actually dysfunctions? If no dysfunctions exist, is a disorder present at all?

I am not neurotypical; yet I have few traits that completely prevent me from functioning in a socially normative way. My challenge is when I start to want to do more than just function.

Without being overly dramatic, I want to really live, baby. And this is where it gets tricky: living an authentic life is, to me, total success - winning at life. A journey worth fighting for. But I am still trying to process the cost of that success. Not rocking the boat is a learned behaviour that has protected me and served me well up until this point. I talk about being vulnerable: I try and do small things daily that I'm not quite ready for. But this is a big thing. A no-going-back thing. Do I tell my mum? How? Why? Do I tell my boss? My cousin whose son is autistic?

These are the questions I am sitting with right now... I am confused yet clear. I am overjoyed yet sad. I feel accepted yet excluded. I am a whirlwind of emotions.


3 comments:

  1. Nattily, at Notes on Crazy, wrote a series of posts describing the self-doubt that can come in the process of pursuing an autism spectrum (includes Asperger syndrome) diagnosis -- http://notesoncrazy.com/2013/09/because-you-kinda-hope-youre-autistic/. I found it helpful. I'm in the midst of figuring out the usefulness of a label myself. Do I want a referral to a diagnostician (since therapist I'm seeing doesn't do ASD evals)? I'll find myself wondering if it was silly of me to even think I could be autistic (it's not -- that train of thought becomes self-dismissive quickly). Giving oneself permission to label is hard, too. I'm glad to know I'm not alone in this.

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  2. Words that could have been my own. This post pushed me far enough to see my own doctor about a diagnosis. She then said "we are having a conversation... I dont think there is anything wrong with you". She did promise to refer me as soon as she found out where I should be referred to, but only for my own peace of mind. I am upset that my doctor was so closed-minded. I just hope a specialist sees past the coping mechanisms. Thank you for your words, they help me to see me :)

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  3. Thanks for replying; I'm glad this helped you in some way. :)

    If it's any consolation; the doctor I initially saw for a referral was also quite closed-minded. I actually fibbed a little to encourage her to refer me to a psych instead of just prescribing anti-depressants, which was where the consultation was headed. I didn't plan to tell a half-truth, however when I mentioned autism she nearly laughed at me and assumed I was talking about my son, not myself. She launched into 'you need to get your son assessed ASAP', so I quickly turned the conversation round and presented myself as not really coping with parenting and said (truthfully) that I suffered from post-natal depression in the past, so I 'just wanted to talk to someone for some peace of mind'.

    That was a version of the truth anyway. I did want peace of mind. She referred me to a psych in the same medical centre, however on the Australian mental health care plan (where 6 visits are subsidised by Medicare) you're able to choose your own therapist anyway, so I researched and found a different lady who had experience with my particular neurology.

    Turns out she was a good choice; not because she agreed with my self-diagnosed suspicions, but because I felt comfortable with her from the outset.

    I hope this helps. If you still don't have the answers you seek after you see the specialist, all I can say is keep searching. Only you know what's best for you. xox

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