My sister-in-law pointed out that parts  of this blog post are a little confusing as they assume familarity with the events that were going on politically around disability at the time in the US)  I don’t think I would have gotten anything out at all if I had had to clarify too much my concerns about how autism is viewed and at the time I wrote it I was spending a lot of time in a virtual huddle with people in blogs and facebook following things so I was a bit blind to what might need explaining to those not as entrenched in the political aspects of disability) It’s true my English teachers would have subtracted marks for it but sometimes you just have to get words out.

 

G-d, Acceptance and the Autistic Spectrum

Years ago I wrote about G-d as far as autism goes. I wasn’t going to tackle that subject in my first actual new article for a number of reasons.

The first was one of those reasons is I am reluctant to express something that could be seen as the notion of people with disabilities are somehow more special in the candy coated ways that circulate on the internet now and in the “olden days” in print media, and make me cringe.

The second was was followup to my journey as far as love goes a discussion G-d is actually a step backwards. Related to the first reason, I had a certainty as far as G-d goes before I knew that’s what people called that presence. I have a certainty of G-d’s love for me that is far less shakeable than the human variety and of mine for G-d.

The third is probably the worst reason not to address the issue. People who don’t believe might dismiss everything else I have to say as it’s clear in the minds of some people that a belief in G-d, and intelligence are mutually incompatible. For some reason they identify all people with a religion of any sorts as belonging to the fringes of their faith and therefore have and no doubt will again ridicule things I don’t actually believe.

When I first addressed the issue many years ago it was in response to the question, “How do you feel about G-d?” I took it literally and replied I liked G-d. When I found out the root of the question was the notion that abstract things are hard for autistic people and secondly that if I had somehow managed to get my mind around the concept of G-d was I angry with G-d?

I will start with the original question I guess before getting to the reason I concluded I would write about this today rather than the topic I had all written out in my head.

Despite have a switch that no amount of reading and exposure to literature is stuck in a default mode of concrete and literal, I do not recall a time when G-d was something abstract to me. For many years in fact G-d may have been the least abstract of all.

I had some time when I was more typical as far as my distance from the world when I was young. Those times occur periodically now even when I am under great stress but for a time I had the luxury of mainly being an observer in a world that hadn’t made up it’s mind what expectations to have of me yet. When words started to have meaning I still had some time left in observer mode and by the time I was willing to have sustained interactions with people long enough to have any sway over me my mind was long past the point where religious education would have made a difference to my version of G-d.

G-d having always felt present and real for reasons I can’t properly articulate is not abstract. I do wish I could because often these sort of questions come from people longing to include their child in whatever faith they belong too. Of course G-d and structured religious observance are very separate things and for now we will leave the broader issues related to inclusion as a separate thing. I will attempt to tackle it at some point because it is a topic much discussed and seldom really properly achieved.

My father fell at one point into the people in my third reason for not taking this on. He had survived World War two in occupied Denmark as a person of Jewish descent. I don’t know if that is what made him so adamant in his atheism for sure but in the aftermath of that a lot of people of all varieties of backgrounds couldn’t believe anymore.

My father took his atheism to a degree most don’t. When I reached an age where he could teach me things he would explain how there was not only no G-d, but also no beauty or love. All three of these things were crutches for the less intelligent. We should respect their beliefs but pity them for being so stupid they needed them.

He had a forestry background so he could very much prove that what we describe as beautiful is actually functional. I suppose he thought he could lead me in a sort of backwards argument from design to share his belief system. I was willing to be flexible on beauty. I wasn’t entirely certain about human love that being a somewhat long journey for me but about G-d he met his match.

There was a time I was angry at my father for trying to impose these beliefs on me. Now that I am older I feel a twinge of sympathy for him as it must be incredibly frustrating to believe you can improve the world by bringing intelligent offspring into the world, have that offspring’s intelligence questioned (and by extension you own superiority) and when no one was questioning it anymore still not be able to make a dent in what must have seemed like the easiest of the three to convince me of.

So what does all this have to do with today? Why did I choose this topic. One that is hard for me to express today? One that I never feel I can adequately convey to a largely neurotypical audience. (or even many of my fellow dwellers on the spectrum)

I chose it today because the last two weeks have been filled with an incredible amount of spin as far as autism goes. Important goings on in the US and the like that dragged all the truly anti-science, autism as tragedy, people out of the woodwork and somehow they were allowed the lions share of the media time and as a partial consequence the US ratifying a UN treaty on the rights of the disabled didn’t happen.

It may not have happened in any case as somehow disability rights are somehow tied to abortion issues in the minds of people I can’t really understand at all. Not because they are neurotypical but because they are so illogical. Also because some of them choose to disrespectfully drag G-d in to prop up their irrationality and at times hate.

Even if one was adamantly opposed to abortion in pretty well 100 percent of circumstances then wouldn’t it make some sense to ensure the lives of those who are born are better? Entitled to some basic protections usually extended just by virtue of being human? Trying to get my mind around their oddly paradoxical stance and where the G-d I believe in enters into is far harder than believing in G-d. I suspect this must be the case for a lot of people or that segment of the population wouldn’t generate so much political comedy.

Except this wasn’t funny.

It wasn’t funny because for every other group on the planet including other disabilities the hyperbolic, nonsense that was heard would at the very least be considered not politically correct but a more accurate assessment of it would be hate speech. If you doubt the latter try inserting some other minorities into the transcripts you can find on C-Span.

I made some attempt to lighten the grim and disbelieving mood of some when tsunami was included in the long list of horrible things those with autism and the “epidemic” of autism is. I said we should claim that for our own as of all of them a tsunami has power. I may just get a t-shirt made warning people that that is what I am in fact. Not a tsunami somehow spreading my autism but a counter-tsunami against those with a financial stake in perpetuating myths about autism. Those with an emotional stake in believing those myths who are frankly as much victims here as autistic people no matter what mean things they say. Those who say they can love a person with autism but not autism.

So you might be asking where does G-d come in other than tangentially invoked by the “enemy camp” as it wages war on me and my kind? I could have addressed this whole issue from many other more comfortable angles after all. Why G-d? Shouldn’t I after all be even more angry with G-d in the wake of the pain all this caused? Shouldn’t I have attempted more of the logical kind of attacks on the arguments that are so very easy?

The answer is in the second word. Acceptance. Like speech it gets talked of more often than not as somewhat binary. Perhaps a journey to get there but most people talk of acceptance as a done deal. I have written about it that way in the past myself which is why I didn’t just recycle an old article.

In truth acceptance is a continuous process for me. Naturally it is easiest during the relatively stable parts of my life span. Times when the consequences of being autistic haven’t totally blown your world apart in ways you can’t really get a handle on how to begin to reassemble it. Yep. It’s easy to accept your autism at a time like that. The kind of assaults made on myself and my autistic brethren would have been easy to dismiss. Or I would have looked at it in an entirely logical way and no doubt have fired off a few letters but it wouldn’t leave me feeling shaken a week later.

I am prone to very severe depressions. It’s a very common co-morbidity with autism which for reasons that escape me neither the health system nor disability services can help much with it. They told me years ago mine would never be treatable and offered up a cingulotomy as my only option. (In some ways even more chilling than a lobotomy)

In a year where having to leave my home of 14 years plunged me into what has been my worst and longest lasting depression ever,  as I was completely and utterly unable to cope with that change shouldn’t I even be agreeing with the tragedy model of autism? Shouldn’t I be really, really, angry at G-d.?

No and no. I am no saint as far as arguing with G-d goes. As a Jew theologically it’s perfectly okay to do just that. I don’t have to repent for it in fact it’s a bit definitional. I do beg, and plead sometimes that maybe, just maybe the tap could get turned down a notch. I don’t just have autism and chronic treatment resistant depression but very severe (and of course treatment resistant) arthritis and so it goes. Much of my family is sick and my life circumstances right now are abysmal.

I can’t be angry with G-d though. Not because I think he is still into smiting people. I can’t be angry because the ongoing foundation of the continuous process of coming to terms with my autism and it’s consequences is rooted in the years I spent alone with G-d. I know for a fact that however the rest of the world may feel G-d loves me.

Well sure some people will say now. G-d is love. Of course G-d loves you. Some of those same people though will also be keen to tell me how G-d loves me so much I will be perfect in the afterlife. Nearly all of those people are perfectly nice people and don’t even really see how hurtful a statement that gives them hope could be.

They don’t see that that is essentially the desire that I be someone else down the road. Granted it’s a road that my own faith has some uncertainty even exists but it is still really a statement that yes I accept your autism for now. I accept it because at some point down the road you will be perfect.

The first time I encountered a large scale assault on my person-hood by proxy was of course on the internet. Many years ago I came close to being banned from a group for passionately stating that I am as I am meant to be and the G-d I believe in wouldn’t alter me at some later date so radically that I am no longer me. That presumably since G-d loves me that love unlike the kind many humans profess is for the whole package.

Autism is pervasive. People sometimes see that term and not give much thought to what it means. Since it is also developmental what I take that to mean is it has shaped pretty much everything I experience and thus the person I am. I’ve had even other autistic people object to this as over-ally deterministic but I can’t find a good neurological basis to quibble with it.

Unlike other conditions which may shape part of you autism is in the brain. The bits you can actually see of it are not but that’s where it lives. That incredibly complex organ through which all reality is filtered. How can there be a non-autistic me that is still me? Why would I want that or view that as somehow paradise like? Take away my arthritis and although a quarter of a century of dealing with pain and decline has no doubt shaped me a bit I would still be essentially myself. The same could be said about pretty well everything even oddly enough my depressions which also live there because that is not a constant state. I wasn’t born depressed. I am not always depressed and no matter how long they last depression is a deviation from my usual self.

So this vision that is somehow hope inspiring for many leaves me chilled to the very core. I love G-d. When I was younger because so many people say this I actually had some fear that this might be true. How does one accept oneself when even G-d apparently views you as needing tinkering to truly make things a paradise for your loved ones?

When largely neurotypical humans dehumanize people with autism in way that again could be funny given our supposed lack of empathy is one of their stronger talking points right now, G-d’s acceptance and love is the foundation upon which I rebuild my own acceptance. That solid, rock of conviction in the centre of me that is G-d to me, when I am hurting less arms me with courage. A very shakeable courage granted. One that has me trembling even now.

When I truly listen as to the answer to why do I have to be autistic when with my intelligence and other gifts something much more spectacular might have come of my life the answer comes from there. Even when I doubt it I am reminded I am not only lovable but loved. Not loved because one day I will be something else. Not loved in that syrupy way where I am placed here to be a learning experience for others that will test and then strengthen their faith but loved as I am.

So why does any of that matter so much? Anyone who has ever gone past grade 8 in a semi-decent school encounter’s Maslow’s hierarchy of needs. All the basic stuff is in there and the essential premise is the lower order things like food must be met first to ascend up the ladder. Since this is my blog and not an academic paper which I did write on the topic I will say Maslow is wrong.

People can go a fairly long time without much of what is there, or diminished quantities thereof but without meaning why? I get sometimes in the absence of an actual clinical depression what I call existential depressions where I wonder why the heck am I here, taking up space and not accomplishing much. At this point in this very long post you might be able to guess where the answer comes from.

The atheists and agnostics out there might try to be nice at this point and conclude okay the tragic figure writing this needs to believe all this to keep going. To give her a sense of purpose. So she has constructed a theology and an illusion to give that purpose extra oomph in ways that are not too dissimilar I suppose from the very ways my father insisted stupid people did.

My faith is strong enough that I don’t really even have to go there. G-d exists. G-d loves me. As to the existential bits the less abstract part of meaning is mission. If I accept the previous premises and I do. Then what’s my role?

I occupy a weird spot on the autistic spectrum. I’ve been kicked off lists for being too low-functioning. I have been deprived of life sustaining services for being too intelligent. Diagnostically people again treat functioning as fixed when in reality how severely your autism is impacting your life depends on a lot of other factors. So why be caught in what is probably one of the more uncomfortable autistic realities where it’s really no ones job to look after you but you can’t actually look after yourself?

The only answer that has made sense to me comes in the form of what I view as duties. To try my best to make things better for the next generation of those on the spectrum. To try my best to express things that others cannot express. To be that counter-tsunami opposing the storm of voices yelling words that strip me and my kind of my humanity. The constant flea on the back of massive organizations that have twisting the reality of autism as in their best interests. You can’t really raise money on the premise after all that autism comes in a variety of forms and that with appropriate supports all autistic people would have a better quality of life. Why can’t you though?

Why do we have to be cancers, and plagues and burdens to get people to write cheques to groups who then spend the bulk of that money perpetuating those same images. Again if it wasn’t so painful there would be some comedic value in that autistic people are supposed to be so concrete yet many people can only sort of define us by marching in step to a completely hyperbolic, tiny violin playing tragedy model.

Wait, you are going to say. You, yourself describe your life as hellish a lot. How isn’t it a tragedy that you live this life? You have as point there. The tragedy though isn’t my autism. It’s the ways of viewing it that create artificial distinctions among a group that by definition share key traits that are in fact quite disabling. These distinctions mean the majority of people with autism get no real help outside their families although there is regional variation there.

My gifts and talents go largely wasted not because I have autism but because people make money focusing on the very small portion of the autistic spectrum guaranteed to get the most cheques written. Even though people spend the vast majority of their lives as adults and the majority of those with autism do not actually have intelligence deficits those are too places the line gets drawn. The third is sometimes speech.

I very much doubt the adult autistic reality will alter in my lifetime. Sometimes when I read things I wrote 11 years ago I wonder if some of my optimism about how things were improving was totally misplaced. It would be easier to throw up my hands in despair, give in to the many nights of temptation just to walk into the sea and be done with it.

It would be easier and I can’t say the thought doesn’t cross my mind right now more than it should but it’s not what G-d wants from me. That really would be a life wasted much more so than now.

I am not alone in howling back against those who seek to make us less than human. Years ago there was no autistic culture. No way to support one another and then along came the internet. If one can say any group needed the internet more my money would be on those with autism.

Not everyone fighting the stereotypes gets their courage and conviction from G-d. I’m far from the most courageous one in the battle even. Although if one defines courage and beauty as Kierkegaard did as repetition then repeatedly throwing oneself into an onslaught of dehumanization from better armed and funded opponents will have to do for courage. You can call me a plague, a burden, an epidemic, a tragedy, waste of intelligence, and yes please, even a tsunami. Yet to the extent I am able I will reply I am Kis. I am human. I am as I am meant to be. If my life and the lives of those with autism seem tragic to you then by all means do something more productive than denying our humanity and basic rights.

So for me that is why I exist. That’s why in the face of acceptance being an ongoing battle this is a fight I could only be in with the conviction that comes from G-d. A G-d that loves me unconditionally. That loves me as a person in my own right. So illogical, hyperbolic, unethical spin-doctors say what you will of me. It might even hurt a bit, for a time. Yet I will just have to get up and launch myself back in some form or the other at you. You will dismiss me, ignore me and even block me. You cannot however, deny me something which wasn’t granted by you in the first place. While I may sometimes question why I would even want to be the same species as people who drag their own autistic kids to hearings where they say all this hurtful stuff at the end of the day I am not only human I am the human I am meant to be.

Hyperbolic, illogical, insensitive, unethical people can only hurt me temporarily. I wish I could say they don’t matter but since they are skewing the vision of autism at the moment sadly they do. Luckily for me none of them will ever read this.