Hello. My name is Bix. Urban goatherd, social medium, & pop culturist. Straight, white, middle-aged, & male. Project manager at The Belmont Goats. Midlife-diagnosed #ActuallyAutistic.

Email As A Disability Accommodation

What Companies, Government Agencies, & Others Need To Understand

IT DOESN’T MATTER whether you subscribe to a medical model of disability or a social one when it comes to autism. Either way, I am disabled. The easiest way to understand why, and how, is to talk about talking on the telephone.

Telephone conversations always have petrified me. To my knowledge, I never thought about or discussed it much prior to my autism diagnosis. It was just yet another part of the way neurotypical society functions that I suffered in silence. Phone conversations were just part of the world. Why would I see my difficulties with them as anything other than just one more way in which I was a fuck-up?

Of course, I’ve talked about communications difficulties before, and much of the problem comes from the processing required for real-time interaction and the fact that monotropism restricts multitasking.

Some of this is the fact that I am effectively incapable of multi-tasking. It dawned on me only recently that the reason I sometimes will interrupt someone I am talking with is because when a thought strikes me I am mentally incapable of simultaneously holding onto that thought for later andcontinuing to pay attention to what the other person is saying to me. So the thought leaps out of me while they are in mid-sentence, and I need to apologize, urge them to continue, and hope that the mere fact of me having said something out loud will be enough to bring my thought back into the conversation at a more suitable moment, like when it’s actually my turn to speak.

Telephone conversations in some ways make this worse, because at least face-to-face the other person likely has some conception of the fact that a thought has just struck you and you are waiting to be able to get to it. They also have some sense of when you are quiet because you thinking about things rather than from some sort of disinterest.

There’s an old piece about this elsewhere that nicely details many of the important parts of what makes telephone conversations so vexing for many autistic people (and has a photo illustration that’s on-point as to the sheer terror having to talk on the phone can bring), chief among them for me: being the focus of attention, the unpredictability, and its verbal nature.

These problems are especially sharp when it’s not just a routine matter. Comparatively predictable conversations such as calling to see if a store is open (although even that’s not easy for me, and I’ll mostly just hope this sort of thing is listed online somewhere) are one thing. Answering questions from the Oregon Department of Human Services about my SNAP benefits eligibility or needing to understand the options for temporary electrical service from Portland General Electric at my nonprofit project are something else entirely.

It’s even been a struggle to convince my doctors at Kaiser Permanente to use their website’s secure messaging system not just to send me information but to enable replies so that I can correspond that way. The tool is designed for communication but so far I’ve only found one doctor willing to use it that way. Despite, you know, being doctors, most of them have refused to accommodate my disability.

Were I deaf, nearly every large organization or company or agency would have a TTY line or similar accommodating method available. For some reason, despite even small organizations, companies, or agencies having access to email, text messaging, or chat programs, I can’t seem to get people to use them to accommodate my impairments.

So, this is for you, agents and representatives of private companies, government agencies, and nonprofit medical providers (as well as, you know, therapists): when I ask that we communicate via some method other than the telephone or face-to-face, it’s not because I am being difficult. It’s because the cognitive and emotional loads of those forms of communication cause me distress, and, ultimately, are unproductive.

Having a record of a conversation, both as it’s happening and when looking back on it later, actually helps both of us. The form of communication is handling much of the load for me, lessening the stress being placed upon my atypically-wired brain, and helping ensure both that I understand what you’ve said and that I got to say everything I needed to.

So hang up the phone, and send me an email.

Plus ça Change, Plus C'est La Même Chose?

I Don't Think So

“I’M ASSUMING,” wrote a family member, “that you have the desire to change your life.” This in the wake of me pointing out that by the necessary rules of surviving in society, I appear to be worthless.

Change what, exactly?

My life changed in October 2016 when I received my diagnosis. My present changed, my future changed, and my past retroactively changed. No longer a failure and a fuck-up, instead I was an autistic adult who never received any support or accommodation for being autistic. Except that because I was diagnosed late, my life now is a near-constant fight to be recognized as needing support and accommodation. There’s no record of me having received support and accommodation for the previous four decades of my life, so no proof I need it now.

Why do people keep looking at me to change?

That’s what I was doing for forty years: changing, day in and day out, to suit society’s background radiation of conformity, while doing so unknowingly grew a kind of psychic plaque in my brain, which when pushed post-diagnosis by an attempted Vocational Rehabilitation job placement triggered the stroke of an autistic burnout in which I still remain trapped a year later.

I am not what needs to change. Diagnosis revealed who I was supposed to have been all along. Accepting that revelation was the change I needed to make.

What needs changing are the obstacles set up in my forward path as a late-diagnosed autistic adult who needed support and accommodation all along but didn’t get it and now needs the potential sources of support and accommodation at the very least to recognize me.

To see me.

My life already changed. It was rewritten. Retconned. Its hidden truth revealed at a moment that increasingly feels like it came too late.

Here I am. I changed for the world for forty years. Diagnosis started to change me back into who I was supposed to be. I think it’s well past time for things to change for me instead of me having to change for them.

Thoughts On Being Worthless

Living At My Wit's End

THE THING about how even one of the good days can almost break you is that when you have a good day like that, the next day is basically shot to hell, too.

I spent yesterday in something of a stupor, after getting myself our to do morning chores at the nonprofit, after which I tried also to get a couple of other things done there, but realized I had nothing left in the tank. I tried to buoy myself at least a bit by going out to breakfast in the neighborhood but of course one spot mysteriously and unhelpfully has been “cash only” for days now, and all the others are closed on Mondays.

So instead I went home and fell asleep on the living room couch for three hours in the middle of the afternoon.

By that night, I wouldn’t say I was despairing but I did have some pretty clear ideas on what all of this says about my future.

I wish I had anything to contribute to the world that would make people want to give me their money. I’m pretty sure I can’t even offer consistent labor to an employer. I’ve got nothing to give, but somehow still need to afford the world. It’s pretty great that the only way to figure one’s worth in a world that requires money to live is by whether or not you have a way to make it and I don’t think I do. So we know what that makes me.

Then I went to bed.

What prompted all of this is that I’d spent Monday having to recover from an only low-grade work day at the nonprofit on Sunday, which combined with how my last paying job went makes me pretty sure I have no way of ever generating income.

So, worthless.

That last employment attempt (a job placement through Vocational Rehabilitation after my diagnosis), only four hours a day, sent me into a distress spiral. And low-grade, lightweight days at the nonprofit require at least a day of recovery? That doesn’t translate into future employment very well.

I don’t have a single thing to offer that produces money. Whatever else I do have to offer is effectively useless without also being able to produce money.

My disability determination being that I’m not, Social Security expects me to produce my own income. When even good, low-grade, lightweight days at the nonprofit prompt the need for at least a day of recovery, any thoughts about working send me into flashbacks to that job placement. The idea of having to walk into another new workplace and try again makes me feel like I have, to re-use a term, some sort of low-grade PTSD.

I’m tired of looking around and everything feeling like it has to be a fight, and fights that I’m mostly being set up to lose.

Disclaimer: This is not a “cry for help” or meant to provoke concerns about “suicidal ideation”. I am not worthless as a human being, and have no interest in not being here, but being here requires money, and apparently I have nothing to provide or offer to make any, and I am at some point going to run out of it, and I am at my wit’s end.

One Of The Good Days

A Look Into My Autistic Brain

SOBBING BREAKDOWNS, or the narrow averting of them, aren’t just something that happens on a bad day. This is one of the things I’m not sure people understand about the autistic brain.

Today at my nonprofit project, since the weather was nice and we had enough people on hand, we had our first visiting hours since relocating in late December. The first public visitors, in fact, that the goats have had for two months or so, since we’d closed up shop before the move in order to focus our weekends on doing the necessary work.

We spent the morning filling in what we think are old, sunken-in gopher holes to rid the field of trip hazards, and afterward, while some volunteers worked on finishing the smaller of the two shelters, I spent most of the day staffing the gate, greeting people, letting them know they could come in, and doing some version of my rules patter.

Over the course of four hours or so, we had a steady stream of visitors, but not too many at any one time, and there were no hassles to deal with or warnings to give out. Everyone behaved themselves, enjoyed themselves, and everything about the day went smoothly.

Nonetheless, on the way back home, just a few minutes into having stopped to run a grocery errand, I had something of an executive functioning crash and found myself toward the back of the store, unable to make a decision about which way to move, or what I needed to do next. It didn’t last long, but it happened, and when that happens in public it’s at least a tiny bit terrifying.

By the time I actually made it home, while the sobbing breakdown didn’t come, I could feel it, hovering around the edges. I guess considering its options?

An outside observer would look at the day, look at how it went, see the crisp, sunny winter day, the work getting done without struggle or strife, the people enjoying getting to visit inside with the goats, and probably not understand getting to the end and having one’s brain seize up, and one’s emotional state threaten to crumble.

But that’s what the autistic brain is like. Not all the time. Not every day. But, yes, even on some of the good days. Even with a routine script of sorts that you use when having to be socially performative with people, even if you’re talking to them about something that means something to you personally, all those moments, together with the finishing up the backfill around the yard hydrant and carting buckets of dirt around, they can be too much.

Even when no single part of it all, nor even the entire thing taken as a whole, is, per se, “bad”.

You can maybe start to see why I’m still in a year-long autistic burnout that flared up when I tried to go back to steady, daily paid employment last year. Why I’ve not yet tried again. Why I’m flailing impotently at Social Security to give me something to hold onto while I try to find out if I even can.

Yes, today was a good day. But the way my brain is wired doesn’t always care about good or bad. Sometimes it just cares about impact.

But imagine what the bad days are like.

‘Appropriate Adapted Psychological Therapies For Autistic People’

Why Are Neurotypical Methods Applied To The Atypical?

Out this week is a new study published in Autism: The International Journal of Research & Practice, which, according to the press release, “demonstrates that there is an urgent need for tailored treatment pathways in mental health services for autistic people”. The group’s research, conducted in the United Kingdom, was “designed in partnership with autistic people, has strong implications for services, and [the] need for an autism specific mental health pathway”.

Reasons for this lack of treatment and support are complex. Mental health professionals and psychiatrists are generally not trained in recognising and understanding autism, meaning services are unprepared to adapt support and treatment to this group. There are also a lack of appropriate assessments to effectively identify mental health problems such as depression and suicidal feelings in autistic adults and a lack of appropriate adapted psychological therapies for autistic people.

Emphasis added because, well, I literally was talking about this just the other day after I dropped my new therapist.

There’s a difference, however, between, “Therapy can be hard.” and “The socially performative nature of therapy can be especially stressful for people whose condition can be in large degree about social communication and performance distress.” If a therapist doesn’t see this, I don’t know what they are doing.

While I’m not a fan of the use of “low” and “high” functioning labels (since these can change over the course of any given autistic person’s life, and can be different for any given person depending on the situation or task, and one can be “low” in some areas and “high” in others), among the things participants highlighted are that if you’re viewed as “high functioning”, or if you don’t have an intellectual disability in the mix, you’re less likely to be seen as needing any real kind of support.

Participants described how their need for support was dismissed due to non-autistic people’s (mis)perceptions of ‘high-functioning’ ASC (26 participants). Specifically, autistic people were viewed as ‘coping’ (474F), ‘functioning’ (56F) or ‘managing’ (28F) even when they were not because they were too ‘high-functioning’, independent, in employment or at University, which resulted in them being excluded from relevant treatment and support.

But back to the bit I emphasized because I’d just been talking about it here: “a lack of appropriate adapted psychological therapies for autistic people”.

Many participants felt a need for professionals to be better trained in autism to ‘realise it may not always be possible to accurately read a person with autism’ (120F). Participants felt that this up-skilling of autism knowledge was not their responsibility: ‘some of them have asked to borrow books from me about autism or asked me to teach them about it and I feel that shouldn’t be down to me’ (181F). These experiences suggest that professionals were often ‘well-meaning’ (176M) but lacked knowledge of the different way in which autistic people communicate and socially interact, and the implications for their treatment and support.

Emphasis added because this is what I was getting at. If the therapeutic process is structured from the same building blocks that create distress for my autistic brain in the outside non-autistic world in general, isn’t that a flaw in the therapeutic process? Can anyone truly argue that the best way to support autistic people is through engagement methods that cause them the selfsame distress they encounter everywhere else? There must be models of therapy built for autistic brains.

(A recent report out of Scotland found similar concerns, and specifically recommended developing treatments with autistic people in mind: “The majority of approaches to mental health care and treatment are developed through testing on non-autistic patients.”)

The gaslighting represented by telling me that “therapy can be hard” (which is what my now-former therapist said to me) is little more than thinking that therapeutic methods designed for neurotypicals are the only route for the atypical. It’s just more insistence that we bend in order to participate in the world around us.

In yesterday’s post, I took a brief tangent to criticize Dialectical Behavior Therapy and how its emphasis on “mindfulness” and “distress tolerance” seemed not to understand the autistic experience (or, at least, my autistic experience). DBT is an offshoot of Cognitive Behavioral Therapy, and in this study a full 22 participants took issue with using it for autism.

I had communication issues with each therapist because they expected me to be neurotypical, so I would take things too literally and they thought it was a defense mechanism, or I’d try to explain meltdowns and they focused on my thoughts rather than how to deal with over-reactive sensory perception. (4F)

When reading about DBT, its emphasis upon “reframing your thoughts”, part of its “mindfulness” methods, was one of the things that was rankling me, and the above study participant nicely sums up the problem: “I’d try to explain meltdowns and they focused on my thoughts rather than how to deal with over-reactive sensory perception”.

My concerns when it comes to finding a therapist ultimately come down to the fact that I can’t work with someone who whether by intent or “just” by the nature of the psychotherapeutic method, is telling me that things somehow are my fault. That all I have to do, e.g., is to learn the coping skill of “reframing my thoughts”.

No, what I need to do is escape the environment causing me distress, and perhaps never return to it. Therapy should not be one of the environments that I need to flee in order to protect my own brain from distress.

The study might be about mental health services in the U.K. but I do believe that many of the same dynamics are at play when it comes to provision of government benefits in the U.S. such as those administered by Social Security. I don’t have an intellectual disability, so my autism can’t be all that debilitating. I’ve worked in the past, and so (despite that work history being full of what, had I had a diagnosis when I was 16 or 26 instead of not until 46, easily would have been deemed at the time to be Unsuccessful Work Attempts by Social Security standards) that must mean I can work now.

For most of my life the issue appeared to be that I was a failure and fuck-up who just didn’t know how to apply myself. My diagnosis proved instead that I was an autistic person without any support.

If only psychotherapeutic methods and government benefits agencies would come to accept the latter instead of still seeing me as the former.

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