autism, Invisible Disablity, memories, ptsd, trauma recovery

Getting my Autism Diagnosis (Twice)

**I know this is late for Autism Acceptance month, but this last month has also been heckin’ scary and stressful and I’ve just been trying to keep the depression and panic at bay. But I promised you guys the whole story, so here it is. If anything I hope it shows that being your own best advocate, having tenacity, and not taking NO for an answer CAN pay off. So don’t give up on yourself. You deserve answers. You deserve help. You matter. And don’t you ever forget that.**

When I was 29 I asked my then-Doctor to please send me to a Psychologist for assessment because I thought I might be Autistic. He ended up calling in the guy from WRHA (Winnipeg Regional Health Authority) who had done my Disability Assessment a year or so earlier. The guy who went,

“OH! You were raised in the WCG?! I’ve treated two other people who were also raised in the WCG! I know exactly what’s going on with you!”

And then misdiagnosed me.

That was the first time I almost lost Disability because he assessed me with the wrong diagnosis and my then-Doctor just wrote “See Assessment” anywhere he was asked to comment. They both half-assed it so badly the 5 person panel that assesses Disability claims originally threw me off Disability, and I had to hustle to get an appeal.

So when I asked to please be referred to a Psychologist who specializes in Adult Autism diagnoses, I was not expecting to see the only guy my then-Doctor seemed to have the phone number for through WRHA.

After 30 minutes he looked at me and told me he didn’t think I was Autistic. Or rather, he said ‘have Autism’. Identity first language wasn’t ever something he used.

He said, “You do have some Autism traits. A lot of them in fact. But you can’t have Autism because you’re too articulate, and you can’t have Autism because you’re a girl.”

I was 29, almost 30.

And even in 2010 I was pretty sure that this Psychologist did not understand how Autism works beyond Kanner’s original ideas back in the 1940s. Seriously.

So I stewed in that for a few weeks, and finally worked up the enormous amount of nerve needed to ask my then-Doctor for a second option.

And he sent me right back to the SAME. GUY.

So I decided if I was going to get any help at all, I needed to find it on my own. Without a referral from my GP my options were slim. To get a referral to anyone here in Canada, you really do need your GP to send in the request. It can take its sweet time, but it works. Eventually.

It’s better than what they have going down south of the 49th. Any time I get frustrated with it, I just remind myself of that and thank Tommy Douglas.

So I bounced around clinics. Getting to the top of lists, meeting them, explaining what I needed (a referral to a Psychologist for a late Autism diagnosis) and had 99% of those doors shut in my face too.

“You need to ask your Doctor for a referral.”
“We aren’t equipped to help you with that.”
“Ask for a referral from your GP.”

FINALLY I found Dr G. It was a wait to get on the list. I basically was part of his clinic hours, but it was help.

The first time I met with G. we had a long session booked. I can’t remember if it was a full 60 or 90 minutes but it was quite long. After introductions and handshakes I sat on the sofa and he sat in a chair with his clipboard and asked me about myself.

I had prepared what I was going to say. Keep it dense and information heavy. Don’t tangent off (which I did anyways … I tend to do that when talking about growing up in the WCG, I think understandably). After 25 minutes or so he hadn’t interjected or really said anything and I was starting to get annoyed.

“Well?!” I asked suddenly after I had stopped, given a good pause for him to interject, and gotten nothing. “Do you have any thoughts?”

“Oh! Yeah you’re on the Autism Spectrum. I could have told you that 10 minutes in, but I had the feeling these were things you needed to say.”
“What?” (You believe me?!)
“Yes. You have what we call Asperger’s Syndrome. It’s a form of Autism that doesn’t have a speech delay, but you obviously have struggled with a lot of other things.”
“…”

I was 31.

And it’s amazing how just hearing those words, “You’re on the Spectrum…. You have a form of Autism”, changed things for me. I quit smoking. which was hard because I started smoking at 14 by stealing my mother’s smokes in a futile attempt to hurt her when she was using me as a sounding board as she prepared to leave Dad. I stopped drinking too, which I’d never liked but I’d been doing also since I was a teenager trying to deal with the TMI/over-sharing bombs my mother kept lobbing at me to make herself feel better about what she was about to do. But once I had a word and an explanation for ME, I didn’t want to hurt myself anymore.

I also reached out to my Grandmother, who my mother had done her best to poison all three of us against, and I’m glad I did. Kookum was going through some seriously scary health issues at the time, and I’m glad I was able to be there for her in some small way. I also was able to reconnect with my only cousin – Jon – who is also on the Spectrum. I hadn’t seen Jon since he was, like, 13 or so, and reconnecting with him has been so special and so good. I am so lucky to have both of them in my life again.

I went from being alone, to having a family again. I went from hating myself and trying to hurt myself, to not having the need or want to do that anymore.

I quit smoking. I quit drinking. I reconnected with Kookum. I reconnected with Jon. I stopped hating myself. I stopped hurting myself. I suddenly understood that I was not ‘Demon Seed!’, and I was not a waste, and I was not lazy or evil or bad or deserving of all the pain and bruises (and worse) that had been inflicted on me… I never had been. I had always been simply an Autistic kid who was struggling. I was an Autistic adult who should never have been thrown out into the world on her own with NO supports Who Was Struggling.

Dr G. and I worked together for just over half a year. Meeting every 2-4 weeks. And he honestly helped immensely. Dr P has done so much too, so much more, but G. was the start of it.

And then the DSM-V came out and I was told that my assistance that was covering G’s time for our sessions was being revoked because my diagnosis didn’t exist anymore and I needed to get re-assessed.

Now that shouldn’t have happened. I should have been told that since Asperger’s Syndrome was now umbrella’d under ASD, my diagnosis was now ASD but I guess I just hit the top of the pile on the wrong government employees desk on the wrong day. That also happens in a single payer system. And it sucks.

Suddenly I was back at square one. With no supports and no diagnosis. And that definitely lead to a couple lost weeks (who am I kidding? I lost closer to 6-8 … it was a big blow). But when I came out from under it, finally, I knew I needed a plan.

I needed a new Doctor.
I needed a new referral. To someone who would actually listen to me and was working with an understanding of ASD that was more current than Kanner’s original paper.

***

An acquaintance told me about Dr Max at AHWC (Aboriginal Health and Wellness) and all the help Dr Max had given them. Helping them find a Psychologist who could and would work with them. Give them a proper diagnosis. Help.

So one day I finally worked up the courage to get on the bus and go to the old CPR station where AHWC is. I talked to the girl at the front desk. I showed them my Treaty card. I filled out all the paperwork. And I got on the list to get on the list.

Eight months later I got the call telling me I was on the actual waiting list now.

Three months after that I met Dr T for the first time. Our first meeting I told her flat out, “I need you to send me to Dr Max because I need an assessment for Autism”.

Three weeks later I got a call to book an appointment with Dr Max.
Two weeks after that we met for the first time.

Dr Max sent me to Dr AP at Health Sciences Centre (HSC) Psych Health for a proper assessment.

A week after our last assessment meeting Dr AP brought me in and asked me why I wanted an Autism diagnosis.

“Because it’s the only thing that makes sense. Because I’ve been diagnosed so many things in my life but this is the one that seems to actually fit. Because I had the answer and it was taken away from me, and,” and I started to cry, “I just want to know… I want to have an answer WHY things have always been SO HARD for me.” and I broke down into quiet tears.

Dr AP leaned forward and told me, “Well, I can tell you today that you… have Autism.”

I was 35. A month away from 36.

And for the second time in my life I felt that wash of relief that comes from knowing the word, and having the word, and having that to clutch to my being and knowing that it made sense. That I made sense.

The assessment report was sent back to Dr Max, with a note that I also needed to be assessed for PTSD (which I do have). I filled in the diagnostic questionnaire’s for PTSD and apparently “passed?” with flying colours. Then Dr Max put my file in front of Dr P, who apparently read it and said, “She’s waited long enough.”

Eight weeks after Dr AP had confirmed my ASD diagnosis, I was sitting in Dr P’s office at the Grace for our first session.

***

There have been some hiccups along the way. Dr P went on Maternity leave back in December, and I’ve been slowly getting used to Dr W instead. Disability has been all up in the air and just – as Dr P puts it – “re-traumazing [me} every month!”

But things are also a lot better now. I actually have a medical team that is working with me. I have Doctors who listen to me and fight for me and care.

Right now I’m staring down this triple barrel of “Is it MS? Or is it hEDS? Or is it vEDS?! Come back in five weeks and maybe someone else will give you some more information. Maybe“, but I’m honestly doing better than I would have a few years ago. I have a medical team that has my back and a GP who is willing to get me referrals to specialists who can (eventually… hopefully?) shed some more light on things. I’ve never had that before.


Advertisements