Assessment and Diagnosis — Day 1 — 30 Days of Autism Acceptance — 2018 Autism Acceptance Month

Single red flower blooming, with small buds

Single Scarlet Runner Flower, with buds.

Welcome to 30 Days of Autism Acceptance.  This series is the first major series that we are publishing.  I am writing the content throughout the month of Autism Acceptance Month, in April 2018 and perhaps beyond.

Well, actually, I’m starting to write this in March, as I am already having “issues” which I need to find a way to direct into a creative venue with the “upcoming” Autism Acceptance Month (which also coincides with Autism Awareness Month).

This is a post is going through a bit of stuff that I really haven’t been willing to write a longer post about specifically around it being an “acceptance” thing.

So, let’s dive in…

I have gone through an assessment for autism spectrum disorder, which I had hoped to be useful in providing some guidance what would work for me, or what I really is going on for me.

Oddly, I don’t think that is what I got directly from the assessment, as the actual completed assessment didn’t tell me anything new, or anything which I had not already felt was true about me.

But, it gave me a bit of interesting information which I did not really expect to find out.  There was a portion which I really didn’t expect to have too much “new” information for.  That part was the “adaptive functioning” assessment which was done through an assessment called the “Scales of Independent Behavior – Revised” short form sib-r.

This was a part of the assessment that I really did not think I needed as I felt that there would be no real information which I was likely to get out of it, but it was part of it because it would determine if I was “sick enough” to qualify for funding, and that was technically the reason for the assessment.

I fully expected that that portion of the assessment would be a “Well, I didn’t expect it quite that bad, but sure” and would never be anywhere near what was needed to qualify for funding.

I was wrong.  I was totally absolutely wrong.

I expected a “percentile score” somewhere between the 10th and 25th percentile range.  I ended up with a 2nd percentile value for that part of the assessment.  Which means that 98% of “the world” function better than I do in terms of Adaptive Functioning.

This genuinely hit me very hard, and I ended up having to talk with the person who filled the assessment out (it wasn’t something I really had any knowledge of what was being asked, and what the value would be regarding it, though I worked with this person for a few different questions that they wanted to know) as I genuinely did not expect it anywhere in that range.  In fact they didn’t, and have stated that they tried to err on the “high functioning” side of things, knowing it could be upsetting to get an assessment saying it was on the low end of what we both expected, rather than the higher range.

Oddly, even though it still really hurts to think that value is that low, I think it likely is very accurate.  In fact, I believe very much it ended up being the “ideal” value.  It left me quite a bit above what I needed to have in order to receive funding, but made it very clear to me, I need supports very desperately.

So, I was not really able to get any kind of support services, and that was both unfortunate, and wonderful.

Because I couldn’t get any support services I decided that I would work to create them.  In the almost 30 months since I received my assessment (will be 30 months on May 9th) I have been working on creating those services not only for myself, but also for other people who may be in similar situations.

Because of a number of factors, it has not been all that productive in being able to create anything which I can say “yes, this is totally working” but a few things have come together.  Fist off, is this website, it came directly out of the assessment, and how I felt the assessment failed me.

Yes, my “anger” at having an assessment that in a lot of ways was useless to me, allowed me to build a website which I know is helpful to me, because it creates a creative outlet for me.

Further, this is getting streamed, which I think I would have never done.  That really was not something that I would have expected myself to do.

I also through other means found that the stream options which I thought were available to me, were not the only ones.  So I currently am streaming on Picarto, rather than streaming on Twitch where I started to stream.

I have been working for a while setting things up with Picarto, and trying to find ways to make it work.  And today, I honestly have felt that Picarto will work really well for me, even if my stream has been very slow to develop, I did have some conversation on the stream chat which I don’t remember having before.

Most importantly I think that the assessment has been a massive reason some of the amazing (but honestly really scary) stuff I have been dealing with this week has been going on.

On Saturday I attended through Skype a meeting of CAU Vancouver (CAU standing for Canadian Autistics United), despite having been a “member” of the meetup group, pretty much since I received my assessment.  Yes, I’ll admit, I was talking to someone dear to me, who when we are able to “sit down and talk” we can have some pretty amazing conversations, who asked if there was any way that I could do anything online, to which (when it was asked) I said that I really couldn’t, but this came up, and decided to try.

On Sunday I was talking with my family in a restaurant about research, and the fact that most of the research that gets published is “poor quality” and because of that most of those findings can be discounted by people who do not support the findings.

When I was talking about this, the waitress (apparently server confuses the bots, and they think that it’s some sort of computer server) was up front and asked what sort of research I was talking about, and I said that I mostly look at stuff about autism, and she told me that she was an ex ABA therapist.

“EEK, stay calm Jigme, it’s one of those people who clearly are willing to share their awareness of how much they hate you, don’t attack her” my mind went, but my mouth went, “What do you think about it now,” so that I could get my head around what to respond to that, rather than simply speak of how horrible I think ABA is.

It went amazingly well, and honestly, I have to say that the podcast that I am currently listening to, Conversations with People who Hate Me, may well have a massive amount of impact on how I have been able to “be in the world” as it has allowed me to better be able to say, that really even people who express views against me, or against some “group” I belong to, I can always try to talk with them, rather than try to shut them down, or try to convince them that they are wrong.

So, that conversation went really well (stressful for me for sure, but a lot of things are) and honestly I didn’t expect that I was anywhere near that point especially around the topic of ABA.  I was able to have a reasonable conversation with someone “from the other side” though I’m not really sure that it even really was a case of someone from the other side really, just someone who hasn’t really realized that it is not exactly that different, though while I am dead set against ABA, and the goals it works towards, I don’t think that we are that far apart really.

So, just yesterday I got a call from my bank which allowed me to find a way (I hope) to handle the problem that I have been unable to resolve for several months.  I don’t have a clue what happened to allow this to happen, but I do know that it has happened.

And, I have been thinking somewhat, about creating this series.  And I know that this is going to take a while to actually be sure if I manage the “30 Days of Autism Acceptance” but I am hoping, and for the most part expecting that it will actually happen, even if I don’t make it by the end of the month.

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