Asperger’s Diagnosis, Official and Non-

So, here it is, the post where I talk about how I felt concerning my Aspie diagnosis.

Official diagnosis? Relief.

Now, at least some of this was because, well, I’d actually sought that diagnosis. I’d made a point of going to the people who helped a friend of mine get his diagnosis, looking for one. It gave me the ability to access information and resources (including the Disability Tax Credit and the Registered Disability Savings Plan: Gov’t of Canada initiatives to help Canadians with disabilities that result in “severe and prolonged impairment of physical or mental functions” – which, quite frankly, ASD does).

Unfortunately, I’m still looking for some of those necessary supports….

I know some people have issues with labels… and frankly, I understand their concerns. Labelling leads to boxing people in, and when they act outside that box, other people freak out. It’s especially bad when the box is made up of misleading information, or has missing information. (Like, oh, say… the fact that every ASDer’s situation is different….)

On the other hand, having a label can let you say, “So this is where these issues come from! It’s not just me!”

Which leads into the internalization of my “non-official” Aspie diagnosis (and the “2007 breakdown”).

I’ve known, vaguely, that I was an Aspie since the early 2000s (can’t remember exactly when, just that it was after the fall of 2002, because my parents were already in Costa Rica at the time). My brother happened to find an online article from the New York Times discussing Asperger’s Syndrome, and sent it to my mother, with the message, “Does this sound like someone we know?” My mother, in turn, sent it to me.

So, I had a general idea about Asperger’s. And I made an appointment to go see a doctor at Queen St. Mental Health to get an assessment done. Had the assessment (1-1/2 hours of questions, not all of which I understood the purpose of), and I was told that if I was an Aspie, I was the most well-adjusted Aspie he knew.

Yeah. Thanks a lot, that was so much help. [/end sarcasm]

It didn’t help that at the time, I didn’t know much more about Asperger’s than was in that article. So I knew that it involved social awkwardness, difficulty understanding people, advanced language skills (usually involving reading and writing rather than communicating verbally), problems with verbal communication… and that was about it. I didn’t know that part of the social awkwardness was the difficulty in reading body language, or that Aspies / ASDers had different wiring in their brains. I didn’t know that the crying jags I have when frustration hits a high were meltdowns. I didn’t know that the high sensitivity of my vision and hearing (and taste and smell) were linked to being an Aspie. I definitely didn’t know that my problems with walking (“Can you please try not to stomp?”) and my total inability to catch anything thrown at me were also linked to Asperger’s / ASD. Nor that my phobia of phones and my (apparently unusual) ability to understand the emotions behind emails were symptomatic.

So, as you can tell, I didn’t know a lot.

At the same time, my youngest sister was going for her Bachelor’s in Linguistics, and had just decided that she wanted to be a Speech Language Pathologist, rather than a teacher.

So, forward to 2007, and she’s getting her Communications Disorders Assistant certification at Durham College, and she sends me a bunch of information on Asperger’s. I start reading after I come home from work (I was working as a security officer on the overnight shift for a private girls’ school), and halfway through one of the documents – the second one, I think – I suddenly start crying, and needing Mom (who was in Costa Rica – I was in Toronto). I can’t control the crying, and it takes me about half an hour to calm down enough that I can decide to call her and talk to her on the phone. (The poor cats were absolutely confuzzled, and tried to comfort me as best they could, coming over and climbing onto my lap, and letting me cuddle them – but it wasn’t enough.)

I ended up going to Sunnybrook Emergency for depression, on Mom’s advice, because we thought that it was my depression acting up. So, arrangements get made to see a psychiatrist, and all that.

Forward again to the summer of 2011, shortly before I moved from Toronto to St. John’s. My psychologist (I dumped the Sunnybrook psychiatrist after a few sessions, because all she seemed to do was bring in her students – a new one each time – to interview me; and the first question they all asked was the one about self-harm. Like I really needed to answer, “No, it has never occurred to me to do so,” every single appointment) and I were discussing Asperger’s and some of how it affected me. I had told him about my 2007 breakdown, and he came up with an idea that had never occurred to me before that: it might have been relief.

Relief that I wasn’t a freak, an anomaly. That there were other people out there who had the same issues and challenges that I did. That I might be able to get answers from other people who experienced the same sort of things I did! Some might even have methods to cope with sensory and emotional issues that could help me.

I didn’t need to think very long about that suggestion to realize that it was probably exactly right. It’s not just negative intense emotions that can cause meltdowns; positive intense ones can as well, it’s just that it happens a lot less often. And it clicked as “right” in my mind when I thought about it. (That generally indicates to me that it’s at least close to an answer, if not the answer.)

Anyway, after that spring (of 2007), I managed to internalize the diagnosis. I didn’t do a whole lot of looking for answers at the time (which was probably a mistake, I know that now), but I did realize that yes, the sensory issues were normal for me, and Not My Fault. The fact that I couldn’t read body language was normal for me and Not My Fault. The fact that I found it hard to talk about emotions was normal for me and Not My Fault.

You probably get the idea. I didn’t need to blame myself for any of these things because it was simply the way my brain was wired, and so I didn’t need to feel guilty for these challenges and the needs I had as a result. And that was definitely a weight off my shoulders.

At the same time, I didn’t talk about it much. I didn’t look into any of the more subtle effects of Asperger’s / ASD (like the executive “dysfunction”, the link of meltdowns to emotions and sensory overload, the clumsiness – I didn’t even have a clue about the proprioceptive and vestibular sensory systems! – and a lot of the others, like anxiety issues and the like). I had a friend online who was fairly certain that she was ASD (I still have her as a friend), and we chatted about it, but I spoke only rarely to others. Not necessarily because I was ashamed, but because I just didn’t know how to. (And even if I knew how to talk about it, I suspect I would have had problems introducing the topic.)

So, then, in the spring / summer of 2010, I lost my job (due to medical issues and the fact that no one except my supervisor would listen to me when I tried to explain the situation – and I ended up winning my case with the Employment Insurance Board of Appeal in March of 2012). The same day, I had to take my cat Aspen in to the vet because she was unable to use her hind legs; and at 3am the next morning, Aspen died at the Emergency Vet’s. So it was a bad situation for me all around.

It didn’t help that summers in Toronto are hot – averaging somewhere between 28°C and 32°C (82.4°F and 89.6°F) on the good days – and I cannot tolerate heat. I break out in an itchy rash on the palms of my hands and my fingers, it goes up the inner part of my arms, and starts on my inner thighs, all at around about 18°C (64.4°F) when it’s not windy (and I’m not doing anything remotely resembling work), and about 20°C (68°F) when it is windy. If I’m doing any activity (like, say, walking), it can start at as low as 15°C (59°F). Once it starts, it gets worse by actually swelling up (inflammation – which is bad for you!), and then sharp stabs of pain, like thin needles, going into my fingers.

So, going outside at all that summer was a no-go, unless I had to (shopping and Sunday brunch with the aunts – and even then, I missed some brunches because of the heat). I was so glad at the time that I had a basement apartment, because it shielded me from a lot of the heat.

I started out eagerly getting into sending out resumes and applying to places. (It’s said that for every 10 resumes you send out, you might get one reply. In some cases, it can be as much as every 50 resumes you send out, you get one reply.) But as August hit, and I had to go to 2 interviews in Toronto’s deadly heat, my applications started to slow down, and then stopped, as though I’d hit a brick wall.

Anyway, I got nowhere with applying to jobs. So finally my parents, who were paying my rent and grocery money by then, because I didn’t have a job, told me that it was too expensive for me to continue to live in Toronto, so I was going to move in with them. Probably the very best thing they could have done for me, especially at that point! (In case I haven’t said it enough, “Thanks, Mom and Dad!”)

That was agreed on in May 2011. My mom and my SLP sister (who had gained her Masters in April 2011 at a US university, and who just needed an Anatomy and Physiology course to get her official Canadian accreditation, so went to Memorial for fall 2011 to get that) spent June and July practically haunting the Autism Society of Newfoundland and Labrador for answers. Well, my mom did. My sister, it seems, knew all the stuff they told us and more about helping me deal with things. (At this point, I doubt that my opinion of the ASNL could fall any further, I’m sorry to say. They’ve failed us way too many times, in too many ways. They get one more chance from me; no more from my parents, or another family we know of who has an autistic child.)

So, I get there in August, and one of the first things we do is make arrangements for me to attend the Connections group – the social get-together group for Adults with Asperger’s – at the ASNL. At the same time, my sister mentions that a very good friend of hers has a friend with Asperger’s, and that she’s met him, and he’s going to be at the Connections group’s next meeting. I look forward to going, and at the same time, finally start sending out resumes again. I’m terribly reluctant about that – I’ve discovered that once burned twice shy, and I’m becoming more and more aware of my differences from neurotypicals at that point.

As it happens, I get a call from two call centres I’ve applied to pretty much at once, both on the same day. I do a bit of asking around, and discover that if I can tolerate a call centre’s environment, SYKES is the way to go. So I agree to be employed by them. It starts out great, with 6 weeks of classes on how to use the programs and what we’ll be doing (Loyalty Wireless for Roger’s Wireless), starting in September. Classes are fun, with lots of info coming our way, a goodly amount of it through computer-based lessons, which I race through. On my dad’s advice, I stop being the first person to answer most questions halfway through the course, not wanting to show people up.

I go to that first Connections group meeting, and meet the friend my sister was talking about. As the group of us discuss some of the challenges we’ve faced, he and I spend most of the time looking at each other and nodding in response to the other’s comments. Ironically enough, our Behaviours and Traits match quite well (not everything is the same, but a lot of things are). We became friends quite quickly, and he’s now almost a part of our family.

Anyway, between that and reading a lot of books (including All Cats Have Asperger’s Syndrome by Kathy Hoopman, which I’ve discussed elsewhere, I believe, and a book about anxiety and Asperger’s that I’ll add when I get home), I became a lot more aware of various… “parts” of myself where ASD had affected how I responded to things. With some things, it’s started to help me improve; with others, I’m still struggling.

Anyway, once I started the Connections group, Mom and I ramped up our efforts to get the ASNL to recommend a psychologist or psychiatrist for me to see – for both the effects of ASD and for my depression. What we got, finally, was a place for social work and a children’s psychologist. *sighs* Not realizing that the non-children’s psychologist was social work, I made an appointment to go there (after prodding from Mom), and went. After explaining what I need, the person I was seeing sort of shook her head and said that she couldn’t help me, she was a social worker, not a psychologist… but she referred me to another place, and there, I found an actual psychologist who had some experience with Asperger’s. (We have since found out that there was a psychologist that the ASNL used to refer adults to, one experienced and trained in dealing with autism, but they stopped referring people some time ago. And a psychiatrist, same issue. Luckily, my psychologist works with both of them.)

So, got psychologist, went to see her, received a ton of info, including some options to explore for getting an official diagnosis – since she couldn’t diagnose me (not trained for it). (None of which I ended up taking, but they were still good routes. Just… potentially very expensive.) Talking to her felt as comfortable as talking to the psychologist I was seeing in Toronto, so that was all good.

At the same time, I quit my job at SYKES due to medical reasons. The people that worked there were great. The environment? Very much not so. And even less so for an Aspie with poor sensory coping skills. By the time I quit, I was on 30-hour weeks, and going in to work with sunglasses, a headband with a brim, earplugs of silicone, and those squeeze balls that you can take anger and frustration out on. And I was still having regular meltdowns and needing to go to the sick room, turn off all the lights, and stay there for 1/2 hr. or more at a time. *shakes head*

I finally asked the friend mentioned above where he had got his diagnosis, and he told me it was the START Clinic at St. Clare’s Hospital. (We were getting really frustrated with the runarounds by the ASNL at this point, and I really felt I needed a diagnosis.) So I got a referral there, and went.

I had a few appointments, and did some tests, and they agreed that it definitely looked like I was on the spectrum. So all was good. (For a while….)

Anyway, very long and a bit of a rambly post about my own experiences, and some of what went into my decisions. But it boils down to the fact that I felt I needed the confirmation for both personal and official reasons.

So, that’s my story. I know I’ve read some others’ stories – E’s (The Third Glance) and MusingOfAnAspie’s, and there are no doubt thousands more out there. But what you decide to do is your choice. Don’t make it because someone else is trying to push you into a particular decision. Make it because it’s what you want to do.

And that’s the last of my advice. ‘Later!

😉 tagAught

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This entry was posted in ASD, Aspergers, Autism, Behaviour, Difficulties, Independent Living, Medical and tagged , , , , , , . Bookmark the permalink.

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