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.


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General Update, Personal

Haven’t Been Around For A While

I haven’t been around for a while. Sorry.

The last month or so I’ve been taking care of Dad, which is hard for a lot of reasons. The biggest being he’s in the far south of the city and I’m downtown and it’s 25 minutes from his place to mine by car. 90-120 by bus if I make all my connections just right.

It hasn’t been easy.

But also neither of my sister has popped their heads up or offered to help either. They both know he’s struggling. He’s mentioned it to them both. Neither has bothered to offer to help though. Because why would they? They took the free rent and free education and free access to a car and easy access to pocket money until they were nearly 30 (or over 30) and now they’re just waiting for him to die.

I actually had the guts to remind him of that a couple weeks ago. I was helping him with his back and helping him with his shopping, and we were in the van heading back to his and he said that he could always ask my sisters for help if I “wasn’t up to it”, and I actually reminded him that both my sisters, at multiple times over the years each, have told him and anyone else who would listen that the second he can’t take care of himself anymore they’re putting him in a home.

“Well, a home is expensive,” he retorted.
“Yeah. I know. But you’ve also put my share of the estate in Anne’s hands, so Anne just inherited 2/3. They’ll use my third to pay for the cheapest home they can find and keep their shares of the estate intact. So don’t tell them how you’re doing. For your own sake. Please.”

I actually said that. Out loud. That is something I’ve said to Dr P, Dr W, and my Godparents all, but I always follow it up with, “And that’s something you think and don’t say. Because it’s Dad.”

But I actually said it out loud.
Still kind of in shock about that to be honest

Not that I think he’ll do anything to fix that. Which means the first thing I’m going to have to do after he passes is take my sister to court to rest control away from her. Not looking forward to that.

But I said the words. *deep breath*

Anyways….

I’ve spent the last month (or really the last 3 1/2 months if we’re going to be perfectly honest) taking care of Dad. Seeing him a minimum of twice a week. Calling him twice a day (at his request). Making sure he eats. Making sure he’s exercising as best he can. Making sure he’s drinking his water. He’s even having me go with him to Doctor’s appointments now.

*long sigh*

It leaves very little space/time for me to take care of myself. I haven’t shot a number of videos I really need to and am very behind on. I have three or four blog posts half-written in my head that I haven’t had the mental time and space to sit down and write.

Sorry. I’m trying.
This week I don’t have anything really until Wednesday. Save calling Dad morning and night to check in on him. Which always take about an hour or so to come back from. Doesn’t leave a lot of mental time/space to get much else done. But I’m going to try. It’s April, which means Autism Awareness Acceptance month, and I am very behind on both posts here and videos over at the YouTube channel. So I’m going to try and spend the next couple days catching up on those.

And thanks for understanding (at least I hope you do).
*tired smile*


Autistic Living, Child Abuse & Trauma, Disabled Living, Personal, ptsd, trauma

Afraid to Say

It’s hard to talk about your past when the people who did the most damage are the people literally keeping you alive today.

Continue reading “Afraid to Say”
autism, Autistic Living, Child Abuse & Trauma, growing up cult, ptsd, trauma

The Good Little Soldier (Comply or Die)

Autistic kids tend to have issues with following complex instructions. Or so I’ve read. I know I was one of them. When I was little, I had trouble following orders in general. Not because I was a “bad kid” but because I genuinely had trouble remembering all the steps in order, or remembering to do the thing at the appointed time.

This was not acceptable in the eyes of my parents. I was labelled a “bad kid” and I learned the hard way that you did what you were told, how you were told to, when you were told to, or you paid the consequences. Years and years (and years and years and years) of that, lead to an understanding: Comply or Die.

Continue reading “The Good Little Soldier (Comply or Die)”
Autistic Living, Personal, self care

An Actual Down Day

Today is my down day.

Like, an actual down day. My first since last session.
Eight days ago.

A day where I’m not worried about rent. I’m not worried about food. I’m not worried about Dad’s health, or waiting for a call from Dad, or going over to help him, or prepping myself to go over and help him. A day where I don’t have any Doctors appointments, or meetings. A day when I can just be with myself (and the cats of course) and be quiet and calm and low stress and do some mental healing until I have to go out again.

I know that usually I do that over the weekend after session, but Dad’s immune system decided to go haywire and he’s needed me to help him just keep it under control. I feel so bad for him (yes I know that’s horrible English, but I’m sticking with it for impact so *raspberry*). His back looked like he had scales the hives and subsequent scabbing over was so bad. I’ve been telling him for over a month to GO TO HIS DOCTOR. Not a walk-in. His GP. And he finally did. And got a course of Prednisone. And then a second because the first didn’t work completely. And I also had to unclog his upstairs bathtub for him.

And yeah. I haven’t had time to take to just mentally take a step back and process everything until today.

*deep breath and long sigh*

I’m not just lazing about though. Because I’m not the type to do that (c’mon, this is me we’re talking about). So I’ve also taken down the dirty cat litter, and the kitchen trash, and I’m doing two loads of laundry right now (they’re in the dryer atm). And once this post is written I have to do the dishes too. So I’m not being lazy, but the quiet is good for me.

Time to find centre again.
Time to process instead of just react and survive.

I have until Sunday when I see Dad again. He wants to play some cribbage, and I am up for that. But between now and then, I am taking some down time. Repairing instead of preparing. Resetting. Processing.

It’s very overdue.

 

Disabled Living, independent living, Personal

Pay It Forward

I went to Giant Tiger to get some milk for my coffee and a couple other things.

Standing in line, the man ahead of me didn’t have enough for his groceries. He had peanut butter, the cheapest jam you could get, powdered coffee creamer, the cheapest coffee you can get, and four loaves of the bread that’s on sale this week.

I know that shopping list.
I’ve lived on it myself. For many years.
No fruit, no veg, no meat, no dairy.

I’m on Disability benefit myself. Walking into the store I had just over $120 for the rest of the month now that rent, phone, and the basic bills are covered. That doesn’t even include laundry and bus fare.

And I know that shopping list. From personal experience.

So I just told the cashier I’d cover the rest. He gave her $33 in fives and change and I put the rest on my debit card. It was only $6. My groceries came to less than his total. But he has food for the next couple weeks until the mid month cheque comes in.

I can’t exactly afford to do it, but what did that six bucks buy him? The jam and the only protein in his bag? Three loaves of bread? Most of the tin of coffee?

I’ve lived that shopping list. And I’m allergic to the peanut butter and the powdered creamer both! But I’ve lived on exactly that for long stretches of my life; both before and after I met the ex.

And now I’m safe in my apartment. With heat that works. In a warm bath (it could be hotter, but this is not a time to be complaining). And my cats have food. And we’re safe. And there’s actual cream for actual coffee tomorrow. And eggs. And toast. And I’m really lucky to be living here and to have this roof over my head, and today I passed it on a bit. Wish I could have done more. But at least, hopefully, now he can make it to the mid month cheque and he has food.

Personal, trauma recovery

Catching Up With Me

I haven’t written anything here in 10 days. Feels kinda weird. But I honestly don’t feel like I’ve been doing a lot of stuff. I mean, yeah I’ve been doing a lot of stuff. Taking care of the cats. Helping my Dad. My One Thing A Day journal has pages full of stuff done, but I haven’t been doing very well to be perfectly honest.

I think I’ve really been just trying to do all the things since Dr P went on leave, and I haven’t really been taking care of myself. I haven’t been giving myself the time to adjust and reorient myself properly. And now I’m starting to feel it.

I never realized how much I depended on that check in every 2 weeks, until it stopped. And yes, I know I still see Dr W and she’s doing Dr P a solid by taking me on and I’m taking up her lunch hour and I have zero right to complain…. but I’m not complaining really. I’m just stating the fact that after two and a half years of working really hard with someone who took the time to listen and earn my trust – probably the first person who’s done that my entire adult life – I suddenly don’t have that person anymore.

I know I wrote a post about losing my navigator already, but I think I’m just starting to realize what that means for me. Personally. Internally. Saying the words doesn’t mean I really understood it, but I think I’m starting to.

Autistic Living, Disabled Living, independent living, Personal

Little Steps

For the last week I’ve been struggling with a blog post I really want to write. It hits on some points that I think people will connect with and that some people might really need to hear, but I am having the dickens of a time getting it out.

Today has been a hard day in general, honestly.
It started on time, but then just lagged and everything ended up late. By which I mean I did everything late. Like, NO motivation at all. When days like that happen, it’s hard to not give in to the voices in the back of your head (“You’re lazy … you really are worthless aren’t you … wasting air … wasting space … you’re so useless!”), but eventually around 14:15 I was sitting in this chair and I just thought,

“Get Up Saffron. Get Up. Do. One. Thing. Just one thing and you’ll have your one thing for the day.”

So I gathered up and started a load of laundry.
And then while I waited for the wash to run downstairs, I cleaned off the kitchen counter between the fridge and the stove that has become a bit of a catch-all spot.
And I sorted the papers that I found on it.
And I threw out the trash.
And I filed the important stuff.
And I pulled my new Cuisinart Griddler (full story on my Instagram) that arrived today out of the box and put it on the newly cleaned counter.
And then I bagged up the Styrofoam from the box.

And then the timer for the wash went off, so I took the bag of packaging down with me, threw it out (because the trash room is right next to the laundry room), and moved all the washing to the dryer.

And now it’s 15:30 almost, and in less than 2 hours I’ve done over a half a dozen things. All important. All things that needed doing.

I’m still stuck on that blog I need to write, but I’m not just sitting here staring off into space and losing hours of the day. I’m being productive. Sure, it’s in little ways, but enough little things put together make for a productive day.

Or at least that’s what I’m telling myself while I wait for the laundry to dry.

autism, Autistic Living, Disabled Living, Personal

I Know

I know that I come across as “weird” to NTs. I used to hear it from clients all the time.

Oh yeah… Saffron’s a little strange, but she’s good at what she does.’

‘Yeah sure, you’re a little weird but you know what you’re taking about.’

I don’t think people realize how much that hurts. Like, yes I know I’m not “normal”. I’ve had that held against me my whole life. But do you have to say it so loud, to so many people, and rub salt in the wound like that?

I also know that I’m very easy to take advantage of. I’m too trusting and too kind. I’m too empathetic. I let people get away with things no other person would because I feel sorry for them. I let people walk all over me. I let people take advantage and I don’t stand up for myself. Until I do, and then people are shocked and lash out.

I let people get away with negging me. I don’t hold what I know and how good I am at it in high enough regard. I don’t believe in myself.

I’m really good at what I do, but I’m no good at the people part. I’d need a partner that I really trusted to do the people part and act as a shield between me and everyone else.

And that’s, let’s be honest, probably not going to ever happen.

Because it would be so easy for that person to also take advantage. It’s happened before. I trust someone to come in as my partner on something and all that ever happens is I end up giving them money I never get back.

They say communism is a perfect system on paper. But ‘on paper’ doesn’t take the human element into account, and that’s where it fails. Because the second people’s egos and greed and unconscious wants get involved the whole system is corrupted and it just goes bad to the core.

People, in general, are like that I find. Everybody looks at themself ‘on paper’ and sees themselves as a pretty good person. But you put someone who is just naturally trusting and naive in front of them, and I still haven’t met someone who isn’t corrupted by the power that gives them.

And it really sucks.

I know I’m naive, and I’m too trusting, and I expect people to do the right thing and be kind and put others first and not take advantage. Because that’s what I do.

And it never stops surprising me when they, instead, take advantage.

And it never stops hurting when they laugh and say I’m weird.