June 2018

Today was not a good day. Today was the third time in a little less than a year that someone I’d turned to for help waved dismissively at some past or present part of my diagnostic story.

Those first two times came as part of working with Vocational Rehabilitation to try to plot a return to gainful employment. This third time came in conversation with a nonprofit tasked with helping certain populations gain access to disability benefits.

I’m trying to get things on track but I weary of always finding myself having to ask, “What is wrong with these people?”

It did not take long into my new job placement last September to feel that something might be amiss. Neither my caseworker nor my job coach took my instincts seriously, and another month or two into the job I suffered my first-ever breakdown, having to run off the shop floor to hide in the men’s room and cry for fifteen minutes. It would not be the last time that happened before I finally walked away after six months.

I’ve been in no hurry to return to working with Vocational Rehabilitation because this first experience with them was so damaging, but it has to happen at some point, because there really aren’t any other options.

My family has been urging me for some time to try for some fashion of Social Security disability benefits, despite my skepticism that I am for their purposes sufficiently disabled. There’s been some sense of urgency behind this because I am not now, nor have I been for some time, self-sufficient. The drain on family resources is not a sustainable thing. It’s basically a race: can we increase my income, from whatever sources, before the well runs dry and my life really does just collapse in upon itself?

There is a nonprofit in the area whose job is to help certain populations try to access disability benefits, because getting those applications correct is tricky. I was given their name by my former psychotherapist, the one who diagnosed me to begin with.

I want to pause here and offer two selections from things my psychotherapist has written. These are the two pieces I routinely include in any inquiry or referral form that requests some initial details about my diagnosis.

The first is from my original Psychodiagnostic Evaluation back in October 2016.

Clinical evaluation and tests indicate that aspects of his functioning are impaired by his autism spectrum disorder, and related anxiety, cognitive and behavioral rigidity, deficits in social reciprocity, poor understanding and management of his own emotional and behavioral responses and his inability to tolerate distress, ambiguity and to engage in goal-directed behavior when he does not clearly see and agree with the method and purpose of the tasks and general direction of the activities.

The second is from the March 2018 letter she wrote supporting my decision not to immediately return to seeking employment after the clusterfuck of my Vocational Rehabilitation job placement experience.

Bix Frankonis was seen for evaluation by this practitioner in September, 2016 and was diagnosed with autism spectrum disorder, with symptoms that include severe anxiety, cognitive and behavioral rigidity and social impairments. He was referred to the Office of Vocational Rehabilitation Services for support and exploration of his ability to sustain employment in a structured, predictable part-time job with minimal social demands. Over the past several months of employment, his functional capacities have deteriorated due to the constant stress he has experienced in his job placement. Bix has made an adaptive decision to terminate his employment and allow some time for restoration of his depleted psychological/emotional resources. I fully support his decision to leave his current job and to consider applying for SSDI instead of trying to return to employment, since continued stress could result in even further psychological deterioration.

Again: I’ve been skeptical about the Social Security disability benefits idea from the get-go, and I was fully prepared for my conversations with that local nonprofit to result in a recommendation from them that pursuing such benefits did not seem to suit my situation.

I was not, however, prepared for that conversation to make me feel judged and ashamed.

We work with the disabled who are often homeless and/or living in poverty, assisting them in getting their Social Security benefits. Our individual claims representation is different than most others as we are extremely proactive. Early claim intervention is the key to developing a thoroughly documented application that will dramatically increase the chances of a favorable decision at the earliest stage of the process. At ASSIST we strive to get it right the first time!

I first inquired with Program ASSIST a month after I left my Vocational Rehabilitation job placement. Despite them taking on very few clients from Multnomah County right now, I submitted their self-referral form and asked to placed in the queue. This month I followed up just to see if they flush the queue now and then, or if things remain in place until and unless client slots open up. They decided it was worth at least having a phone conversation followup to see whether or not there was a basis for pursuing a claim through them.

Today I made sure to call and have that conversation, despite it requiring me to interrupt my weekly mental health outing to the Oregon Zoo. I knew it would be rough, no matter how well it went, but I was caught completely unawares by just how bad it turned out to be.

As I said, I’ve been skeptical about the whole Social Security disability benefits thing from the beginning. Nothing I’d read about it suggested that my circumstances were applicable. I also, however, knew that no matter how difficult some of these conversations would be, it would be irresponsible not to have any conversation that might even potentially lead somewhere. It just takes me time to talk myself into doing it. Especially in the wake of — or indeed the midst of — the autistic burnout that dropped on me at the end of my job placement.

So, nothing surprised me about the ASSIST staffer’s initial and general sense that I didn’t sound like a match for their services. When it comes to non-physical, “invisible” disabilities, she explained, Social Security is pretty draconian in its screening process. They look for people who can’t even make a sandwich for a sack lunch. Who can’t take the bus by themselves. They look for people with a real record of diagnosis and treatment. They don’t look for people who fill out the ASSIST referral form themselves, have had a clear work history, no matter how spotty (especially with some jobs that did in fact last a year or two, or more). They don’t look for people who have obvious computer skills. They don’t look for people who have a single diagnosis less than two years old and who have never been prescribed any medication.

All of this was fine, such as it went. It’s problematic in terms of the overall need to find and assemble some sustainable set of income that gets me off my family’s back, but that’d be an issue for another day. I told her I understood what she was communicating to me. She did say that despite all of this initial yet pretty adamant sense of things, she did want to see the full Psychodiagnostic Evaluation, and then she could make a final determination.

But somewhere in all of this, she started to say something, and then stopped. And then started again, saying, “So, I’m going to be blunt.”

Not a terrific opening line for whatever was coming next to delivery to someone who has trouble sustaining difficult real-time, even if not face-to-face, conversations to begin with.

“Did you really not know for decades that the issue with employment was anxiety?”

Her tone of voice made it clear: she was scoffing at the very idea. She was bordering on dismissing a central part of my diagnostic story, the fact that my existence as a *knowing* autistic person with anxiety and OCD issues came late in life, in my 40s. She was, quite clearly, incredulous in the face of this claim.

I almost hung up on her. I almost burst into tears.

How dare she. How dare anyone, let alone someone charged with helping people in some form of distress.

I took a breath, stopped and started, stuttered and spluttered, and then told her, somewhat indignantly, that actually there are a lot of us who didn’t come to a diagnosis until late in life.

This, of course, is the rub. If you’re diagnosed early, there’s lots of time to track any changes over time, any progression, any regression. There’s time to try this treatment or that treatment, this approach or that approach. Come to a diagnosis in midlife, and you apparently can’t even *really* convince someone whose job is to work with people like you that you aren’t (I guess?) just bullshitting them.

Like I said, I don’t have any inherent problem with anyone determining that I am not suitable for this of that service, program, or benefit. All I can do, this late in life, I talk myself into having every conversation I can, over time, with any program, service, or benefit that might help me.

And when someone like me does that, when someone like me talks, asks, discusses, has that conversation, you know what you should fucking say to me? The only thing you should fucking say to me, even if you have to reject me as a client or claimant?

Congratulations. This must be tough, coming to a diagnosis this late in life and trying to figure out how to tackle it. Good job seeking help.

I can’t imagine I’ll ever come across anyone asking my opinion of Program ASSIST. If I do, I’ll tell them this story, and let them make up their own minds.

So, I’m not having the best track record in terms of reaching out for help and being treated with respect. Vocational Rehabilitation gave me a caseworker and a job coach who I had to fight tooth and nail with to take my concerns seriously, and that only really happened once I started having emotional breakdowns at and outside of work. Program ASSIST tonally cast aspirsions on the very idea that I could have gone decades not knowing what was happening to me.

I’m going to have to go back to Vocational Rehabilitation at some point. I’m going to have to find a way ahead of time to specify what went wrong for me the first time around.

My next stop (take a breath, take a breath) is a Multnomah County program that I don’t think even has anything to offer me except, perhaps, helping me craft that next approach to Vocational Rehabilitation. I’m supposed to be getting back to them, well, pretty much earlier this week, to schedule an intake appointment.

I sit here writing about today, writing about being traumatized by yet another person who was supposed to be helping me (and even simply directing me to a different route would be helping me, but not while at the same time doubting my very story), and now I don’t know how long it’s going to take me to talk myself into that next thing that I need to do.

Maybe I just need to show them this post, and tell them that I’m ready at their convenience… just as soon as they understand that I can’t go through this again.

That, please, can they be different. Believe me. Hear me. Help me figure out the next road. The next bridge. Then help me get one step further.

Just don’t make me cry.

I’ve been thinking a bit lately about that whole thing where autistic people are said to be lacking in empathy. It’s not something I’ve spent much time on, but there’s a fair amount of pushback against this idea from actually-autistic people. I’ve pushed back against it myself.

Perhaps one of the most striking moments forme was in the aftermath of my father’s death a decade ago. While I felt the vigil at his bedside at the hospital, while I felt his death, I was not experiencing some sort of emotional chaos, or even obstacle. Later on, however, when we were sitting around going through the logistics, I realized we hadn’t yet called long-time family friends, and both the fact that they didn’t yet know and the fact that they were about to know, these are the things broke me. I had to run from the room, to lose it in private. It’s not even like it was going to be me that had to tell them. That sounds a lot like empathy to me.

I’ve suggested that the issue for autistic people isn’t a lack of empathy but a reduced capacity to act upon it, and looking at my own diagnosis I’ve begun to wonder if that isn’t related to my issues with social communication and performance distress. To wit: if you’re experiencing and expressing pain to me in person, I’m going to feel it but I’m simply not going to be able to do anything about it to help you, and the distress actually dampens down my emotional empathy sort of on the fly and in the moment, as a protective measure.

It’s not that empathy is absent, it’s that my brain knows it can’t navigate it in real-time and face-to-face, and so it suppresses it. I’m therefore incapable of being anyone’s shoulder to cry on.

I cry every time at the climax of *Cradle Will Rock*, as the members of Orson Welles’ theater troupe emotionally struggle with mounting a public performance of a politically-charged play they’ve expressly been forbidden to perform, at the risk of their livelihoods during the Great Depression.

I cry at commercials like the one about methodically tackling a dog’s bucket list (and then again at the real dogs and their bucket lists that I didn’t even know existed until I was writing this).

I cry at performers nailing a routine on America’s Got Talent, especially if they first get off to a rough start but a judge (and host!) helps them get re-centered and start again.

I once to head off crying at Marian Call’s song “Anchorage” (one that affected me every time I heard it) being performed live at a pop culture convention, I got up from my seat and walked to stand at the back of the room.

(To be fair, I’ve also cried at her “Good Old Girl”. Another thing I see a lot from autistic people is the idea that some of us seem to empathize with inanimate objects, and not only can that song be about Serenity — *Firefly* fandom was my home for a decade — but also about the Mars rover, Spirit; I had a hard time listening to this song after Spirit died.)

I don’t want to give the impression that I think empathy is all about crying. It just seems the most easily illustrative behavior when talking about the empathy issue?

I don’t remember whether it was what sparked me thinking about this but somewhere recently (although it’s from 2009) I came across an article on *Psychology Today* about crying at movies.

So, we cry at movies because the oxytocin in the human brain is imperfectly tuned. It does not differentiate between actual human beings and flickering images of human beings. Either one is enough to kick oxytocin into high gear and impel our empathy.

For me, as I said, the *distance* created between me and the emotions at play is a factor in how my body and my brain is able to process empathy. Just a normal face-to-face conversation (it doesn’t matter if it’s about my own emotions or no emotions at all) can put me into distress. Another person’s actual and lived emotional experience on display in front of me? Forget about it. I’m going to retreat or flee.

There’s an interesting bit in the research this article mentions that seems relevant.

Empathy and distress were highly related in our sample and they appear to work against each other at a physiologic level. Psychologists have also distinguished between empathy and distress as motivators to help others. Batson’s empathy–altruism hypothesis posits that these affective states lead to divergent moti- vations to help others. Those who experience distress are motivated to reduce their own aversive state, while those who experience empathy are focused on relieving the aversive state of another.

I’m not entirely sure I agree with how “empathy” and “distress” are defined and distinguished here, because I feel like in both cases someone is experiencing empathy — it’s just that for one person it creates the need to “reduce their own aversive state” while in the other it creates the need to “[relieve] the averive state of another”.

In neither case do we appear to be talking about someone who doesn’t *feel *and *understand* what the other person is experiencing, just about how they react to that.

So I wonder if the issue with some autistic people, and certainly this seems to be the case for me, is that increased proximity to another person’s lived-in, emotional experience creates such distress that it overwhelms any real capacity to be of any aid because first we must by the compelling nature of our own neurochemistry aid ourselves. For me, at least, I know that this self-aid frequently will come in the form simply of shutting down, and thereby likely seeming unfeeling.

The less physical distance between me and the other person, the more mental distance I need to create just in order to avoid being subsumed by my own distress. Mediate that distance — say, through a television, or through fictionalization — and I’m able to experience the other person’s state and react to it without the distress.

It’s weird, then, that expert opinion on autistic people somehow manages at the same time to assert a sensory over-sensitivity *and* a lack of empathy, as if somehow autism just sort of randomly and inexplicably involves a sensitivity to some environmental stimuli but not others. It seems to me (and am I ever seeing this said over and over again as I read other people’s writing) that many autistic people in a sense arguably are *too* empathetic, to the point of it being debilitating in the real-time, face-to-face moment.

I’m a layman. I don’t know if the article above and the research it cites *actually *provides any neurochemical insight into me being an autistic person unable to provide comfort. The *story* it tells seems to match the story I live. Maybe it’s useful only as comparison, but comparisons, I’ve found, do seem to help *other people* have empathy for me.