December | 2017

My life is so limited lately that to continue to only blog as a way to howl into the universe that I am still alive despite all failures of things meant to make that more certain, despite the total complacency of people who accept money to ensure I am not at all sorts of risk I that I am in fact at risk of. Well, I knew this planet was not for me from my earliest days so moving on.

One of the ways I pass my life where I feel like I exist outside of time is to watch too much Netflix. It actually does the least harm if I get stuck in it as I am not typing or attempting something dangerous or which will result in days without sleep and sore joints.

Their offering “Atypical” was one I watched when it came out. Wondering how another teen with autism would be portrayed.

I am mostly reserving judgement in how the show does use functioning categories because there is some challenge too them as well.

I found the show to go heavily on the everything is somehow okay side though. The protagonist is 18. Has a part time-job which he apparently holds without much issue although he has a side kick and an understanding boss. It is in an electronics store so having sometimes contemplated that as bliss if I could stand better it’s a maybe. I would have liked if employment as an issue came up somewhere though.

On concluding he would like a girlfriend, Sam proceeds in a methodical manner. I have no issue with that as I found that very me. I kind of did have one about the outcome. Realistically while his younger sister gives some sense of needing to be there for him, having needed to be there for him he is not seen being bullied ever.

He concludes he wants a girlfriend and gets one. He makes some understandable missteps along the way but this is high school.. He not only gets a girlfriend but he allows her to train him to talk about penguins less. This was perhaps one of the most clearly problematic bits about the show.

The other big issues in autism get skirted because the father says of functioning labels they don’t really use them. When Sam has a bad melt-down on a bus there is the well that’s life with a “high-functioning” kiddo”. No clear shots across the bow at them get made but the promise of some one hopes.

Although Sam’s therapist has gone into it motivated by a sibling who remained non-verbal and his mother is very into all of everything that one might consider the negative kind of “autism mommy”. Again it is the father who suggests towards the end of the season one that an identity beyond that would be a good thing.

The show is a comedy so the kind of heavy-duty why it is not just a good thing but a necessary thing is not going to happen. You have the one character occasionally challenging the whole way autism is framed by those who are not autistic.

The actor portraying Sam is not autistic. A sore spot of late within the autistic community and a familiar one for the disability community overall. It’s not that he didn’t do a good job. It was a role he wanted and one he feels is his favourite thus far but this does suggest that they were not looking to cast an autistic actor. Is this ever going to change?

So it is high-school with all the potential horrors and yet in ten episodes Sam has one day where he winds up under a lab station for part of it. For those of you who know me I do keep saying under is the superior place to be for all forms of distress.

His girlfriend who perhaps could have been used to explore some of the things Sam has done that upset her like his pro and con list. Lists are lovely for the kinds of things that seem big. Neurotypicals likely proceed through all sorts of things without them but I have made lists and plans for getting just a regular friend. I used the best that science had to offer the second time I did it as I knew more about what science had to say on the matter.

That a list is a way to make the impossible seeming slightly more probable. It also takes something which at 18 is harder most of the time than at 49 – the whole social arena and contains it. You have a plan. You can proceed with your plan. I used to have plans for every area of my life that I evaluated at least annually — some quarterly. This was especially true for the difficult parts of life. A plan. A list. These are real tools and they are mostly things which are fodder for comedy when someone Sam’s age who is also on the spectrum is enthusiastic. Perhaps the comedy wouldn’t be diminished if a sentence or two of why they are so wonderful happened. Maybe none of the experts the show consulted knew why.

So having gotten a girl who openly behaviourly conditions him to speak about his passion less which sure you could say this is a lesson in compromise but what it says to the autistic viewer is that life is always a trade-off where less of what makes you who you are is what the world wants. If you become less you then you may be rewarded with acceptance. It is a long shot. That too is not portrayed in the show.

Another long shot is when said, girlfriend wants to go to the winter formal and this would be too overwhelming for Sam. She goes up against the PTA and when all sorts of incentives rain down on those who want a dance of the kind where you can hear the music booming versus one where the music could be delivered through headphones. See aforementioned job of Sam’s. Still who thinks this would happen. That the mother’s on the PTA who oppose it strongly didn’t peak in high school and were the mean girls then and have not changed much. Maybe age wears down their talons but they have fixed notions of what a dance should be. I am guessing these formal this and that being much bigger deals in the US and I never attended a single dance in high school. We didn’t live in town and gas by then was tight and well the 5 minutes I spent at a Junior High one so my computer matched “date” could get in for free ( who knew they weren’t all free) was about enough. Much like my 10 minutes at a toga party my second day in residence before most had arrived filled my toga party requirement of university.

Then there is Sam’s other desire. To have sex. Again approached methodically he improbably pulls this off at the winter formal. I mean it would have been probable if there had not been some drama ahead of time. He handles the loss if his girlfriend, however temporarily by being convinced a quest is needed and the logical one leaves him soaking wet but having won fair maiden. No one mocks him for being soaking wet in formal clothes. Right. Was the author home-schooled?

It works and he and his beloved do the deed right there in an igloo his father made for him (not out of snow so surprisingly Sam does not deduct marks for this). I was disappointed by this bit. It acts as many books and oh so many expert writings on the topic as if in 18 years nothing has been picked up about what would be appropriate or not. Having sex for the first time in a display in a public place would seem like it would not only be something Sam would know is not appropriate but given it isn’t a real igloo and much of the other comforting things from his Antarctica themed room are not there. Just the fakee igloo which while Roald Amundsen, fresh from his North West Passage exploration did indeed use. This, skiing, sled dogs, and being willing to eat those dogs (this comes up if you ever seriously consider applying for a job in the North in the why dog sleds are still better than snowmobiles section of things to consider) no penguin ever set foot in them.

Consider too if you remove the sound of music blaring, and everyone has their own headsets, hopefully set at hearing friendly volume this might be rather hard to do at a silent dance. If it is something that either teen would consider appropriate. I would think it would present larger challenges for Sam but given his girlfriend’s previous efforts on shaping him in the way things are done also a huge let down for the whole love those you can change model citizen.

Snow may have silencing properties which I appreciate when it actually snows here but this just looked that way. It also looked like something I couldn’t touch but they leave Sam with just the standard set of sensory issues so things he can’t touch don’t complicate his tryst.

Overall ten episodes isn’t enough to judge if it will get better or not. The issues the show skirts around would really have to be tackled in some substantive way for it to be a semi-win. It isn’t horrible and it did leave me wanting Sam’s room very badly but it isn’t a realistic portrayal of high school period let alone autism and high school.

It leaves too many key things as just side bits the Dad hints at and given he is alone there people may think he has the issue for not “doing” functioning levels. Or thinking of autism that way. Then again so would the DSM V which pretty well point-blank states the numbers for each category in terms of functioning can fluctuate and they are defined with the premise that support is provided. It could take 20 years for that filter into the minds of even the “experts” let alone the general public so we can only hope that either this show or some other handles things a bit more head on that are issues largely because an inaccurate way of looking at autism hard set and is tricky to shift.

While never a diagnosis I have a report that say my previous diagnosis was “High Functioning Autism”. I did like the report though as the next paragraph my “Very low functioning” on those lovely scales of adaptive living is noted.

So here’s hoping if Netflix wants to tackle autism they do it both head on and with some insight from those who are actually autistic.

I used to take my pain and fear and feelings too primal to name lest they grow down to a wind whipped ocean and howl into it. You get an answer of sorts if you stand just right. You felt alive and this brought relief once.

I cannot get to the ocean now and the tears I wind up crying when I think of how many people have had to decide to do basically nothing to ensure I survive are not do to the familiar contempt for my autistic life. Or my poor life, my odd life, my seemingly useless life to those who judge but because it is such invisible pain and invisible fear.

I don’t want to die of an intensive neglect that should be impossible but I suspect it happens a lot.

I don’t want to die because I am seen as someone it is safe to ignore. I have no parents. I have no children. I do not have a primary claim on the heart of anyone. I know how when I have gone to appointments with a friend that alters how you are treated. You are seen as someone who people care about.

To have zero services and have the person who was supposed to fix one of them be the log jam in ever having help again should not be possible.

I know they cannot be aware of how horrible life lived so utterly alone becomes. The 6 days of trying without success to get fully into bed. My dog is a genius at ensuring he gets his needs met and then I return to the same level of stuck.

My good computer was a casualty of my over the bed table breaking and thus some avenues of escape are less possible. The big issue though is that it had three non-working keys so I could not get stuck in non-productive typing on it. The 6000 word emails I never send or the blog posts of pure nonsense. I typed for a week straight and my hands were discoloured and swollen but with nothing or more specifically no one to break the pattern on I go.

I used to be good at what they call “switching attention” and I hope when or if things ever stabilize I will regain some of that ability. I know the role having seen a person plays as for just awhile I can focus long enough to do something needed.

I miss a mythical pair of parents I guess. While in the last years of her life my mother was more understanding and accepting my father was not. That is when it was just him and I phoned because it was one of the days he would shower and he called back to say he was out of the shower – a system necessary because in some decision makers mind the elderly need just two a week. If he thought to comment on my life it was with impatience given I was not senile it was my not remembering to eat he took issue with when he did . Most of the time it was short this seconnd call that signalled he was alive. A system to ensure he had the dignity of being as clean as he had been when my mother lived.

A system he was fairly compliant with for reasons I understand as it is a life-ending fall I fear most of the times . Sometimes lately I wonder if it would not be a mercy for me to die in the exact way you do learn to fear if you are alone and fall a lot.

I had a bath last week. It was momentous and dangerous but when your feet and lower legs have been colonized by a bacteria despite your supposed eligibility for home-support that never re-materialized and you reek of things you should not well eventually you have had enough.

In the process I did fall three times. The stepping motion is on where my legs sometimes give out. One was just into the tub itself. The kind of fall I regard as a good fall. It is a sad system where one grades them but the other two were the bad kinds. Or the semi-bad kinds as it is the counter-top that is right beside the tub that could end me and twice I had a near brush with not keeping my head from hitting it.

After though, I could not help but wish it had been that easy. My head smashed in. Dead because I wanted the dignity of not smelling of urine and worse. Of not having feet that were in worse condition than a street person’s as they have foot clinics for street people. Just finally free of this invisible, tortured life.

Although the difficulties exist because of autism plus physical issues it is not autism that makes me wish I had died from trying to have a bath. I want to be clear on that. It is the many members of the “system” who have jobs which are meant to prevent the many worst case scenarios I represent.

My housing. Not just an issue due to accessibility features which are not here but because my landlord scoffs at notions of building codes so rats can fall from the upstairs, through yellow resin insulation coated in dust, through electric wires and down here. The drywall to cover it is in the closet with the water heater but the make shift wiring and plumbing make that impossible.

I do try to not think of the substantial increase to lung cancer risk from this exposure but my asthma and my dust allergies make the bathroom a hard place to use.

Almost 6 years ago appropriate housing was the “powers that be” number one priority with adequate pain control a close second. One wonders if life would have improved had they been lower on the priority list.

I have joke I am a hermit but mostly all of this just makes me feel more alone than I thought possible. Each passing day that intensifies. The fear does too but mostly it is a sad, sad way to live.

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