I need more than mediocre support.
by Bix Frankonis
In late 2016, I received a midlife diagnosis of Autism Spectrum Disorder which started me down the winding path toward understanding the prior four decades. In the aftermath of that diagnosis, including a failed attempt through Vocational Rehabilitation at returning to regular employment while remaining unsustainably dependent upon my family, it increasingly has become clear that I require additional financial and psychological supports in order to avoid a degraded “second half” of my life.
Here, I advocate for a tailored approach to therapy or counseling currently not offered under the Oregon Health Plan, at least through Health Share of Oregon, in order to maintain my mental health, as well as argue for my eligibility for both Supplemental Security Income and Social Security Disability Insurance in order to maintain my financial health.
Tailored Therapy & Counseling Under The Oregon Health Plan
“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.”
For several months during and after my Vocational Rehabilitation job placement which ended in early Spring 2018, that office paid for me to see the very psychotherapist who originally diagnosed me, to discuss the job stressors which had become sufficient enough to cause regular autistic shutdowns and meltdowns. Once these sessions had to come to an end, I was left to navigate Health Share of Oregon, my Coordinated Care Organization under the Oregon Health Plan.
It quickly became apparent that it is difficult, if not impossible, to find a therapist or counselor covered by Health Share who understands autism, let alone autistic adults, let alone late-diagnosed autistic adults.
A recent study published in Autism: The International Journal of Research & Practice “demonstrate[d] that there is an urgent need for tailored treatment pathways in mental health services for autistic people”, identifying “a lack of appropriate adapted psychological therapies for autistic people”. Talking with participants in the study led its researchers to note that too many mental health professionals “lacked knowledge of the different way in which autistic people communicate and socially interact, and the implications for their treatment and support”.
A similar study by the Autistic Mutual Aid Society found stated that “the majority of approaches to mental health care and treatment are developed through testing on non-autistic patients”.
Late last year, I lasted all of three sessions with my most recent therapist, after I'd noted that I was having difficulties, and explained what I was finding restrictive about the traditional formats of talk therapy. Their response was to tell me, “Therapy can be hard.”
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 or counselor doesn’t see this, I don't see how they adequately can serve autistic patients or clients.
There are many licensed therapists and counselors outside of the Oregon Health Plan who utilize other approaches, ranging from “teletherapy” via video chat or secure messaging to animal-assisted or outdoor therapy. It also would be useful if therapists and counselors had the leeway to bill insurance providers for time spent reading material their patients might already have written about their disabilities in lieu of a standard session. (I myself have been blogging about my post-diagnosis life for fully a year now.) Knowing firsthand how a patient already has discussed their conditions cannot possibly do anything other than help the patient.
If accommodating people with disabilities is something we take seriously, then the Oregon Health Plan must include therapists and counselors whose methods reach out to populations for whom traditional close-quarters, closed-room “talk therapy” itself adds to the stressors of their daily lives due to their disabilities and impairments.
Eligibility For Supplemental Security Income & Social Security Disability Insurance
“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.”
In early Autumn 2018, the Social Security Administration denied my application for Social Security Disability Insurance due to having too little of a work history, while at the same time informally indicating that I also would be denied should I apply as a “disabled adult child” under a parent's work credits due to having too much of a work history.
In late Autumn 2018, the Social Security Administration denied my application for Supplemental Security Income based upon a negative disability determination by the Oregon Department of Human Services.
As of early Spring 2019, my application for SSI is under reconsideration, while my application for SSDI as a DAC is on hold pending that disability determination.
The initial negative disability determination was based upon only two sources: my initial diagnosis from 2016, and a “consultive exam” arranged by the Oregon Department of Human Services. That exam consisted of a ninety minute battery of “talk therapy”-like conversation and intellectual ability tests. There were no discussions with the diagnosing psychotherapist nor with my Vocational Rehabilitation caseworker.
It is my contention that such a narrow window of examination cannot properly reflect how my autism and its co-morbid diagnoses of anxiety and obsessive-compulsion behaves in the real world on a day-to-day basis, or even within a single given day. While my ability to perform well on intellectual ability tests accurately reflects my lack of co-morbid intellectual disability, that obfuscates the degree to which autism spectrum disorder on its own without intellectual disability can interfere with daily functioning.
There is no “high-functioning” or “low-functioning” autism. Rather, there are periods (be they hours, days, weeks, or months) when you are functioning well in some aspects of being autistic and poorly in other aspects, and which aspects are which can and will vary over time. I argue that no 90-minute “consultive exam” can reflect this autistic reality.
Given that my post-diagnosis work attempt through a Vocational Rehabilitation job placement failed in a spectacular fashion due to stressors sufficient enough to cause regular autistic shutdowns and meltdowns, a negative disability determination is difficult to square with my lived, documented experience.
As such, given such a deeper examination of the available records, I should be eligible for Supplemental Security Income.
It was with no small amount of frustration last year that I learned that the Social Security Administration would not even reach the issue of disability determination on the matter of SSDI eligibility, because at one and the same time I had not worked enough to be eligible on my own and yet also had worked too much to be eligible as a “disabled adult child” under a parent's account.
Presuming for the moment that the SSA's negative disability determination under my application for SSI is reversed upon either reconsideration or appeal, I argue that I also should become eligible for SSDI as a DAC.
In order to see why I am eligible for SSDI as a DAC, you must examine my work history only with the recognition that for the thirty years of that history I was an undiagnosed autistic. Undiagnosed autistics frequently go through their lives thinking only that they are failures, for some fault of their own incapable of succeeding at the things at which everyone else around them succeeds. Without the recognition of a diagnosis, you don't understand that in fact you have a condition whose impairments conceivably could be addressed or mitigated through various disability accommodations.
As such, when you examine my work history what you notice are two things: (1) the vast majority of my employment qualifies as Unsuccessful Work Attempts that lasted less than six months; and (2) those few examples of employment which lasted longer than six months, when examined closely, are shown to have involved circumstantial environmental elements which mitigated my then-unknown disability.
On the matter of URAs, we have three decades of spotty and intermittent work that often lasted anywhere from one month to six months. In each case, my “failure” at those jobs can be linked either to their inherent unsuitability given my disability or to the failure to seek accommodations for my disability because no one understood I had one.
On the matter of instances of longer-term employment, each of those instances were jobs I received directly as a result of having friends already employed at those companies. This is important because it meant that many of the socially performative stressors we now know exist under my diagnosis were buffered, dampened, or mitigated. In essence, unbeknownst to anyone at the time, accommodations were being made for significant aspects of my disability. Equally important is to note that given the nature of these accommodations—that I got the job thanks to friends already employed and that this provided a buffer against the socially performative stressors I experience—they effectively are not replicable in other job contexts.
As such, with the bulk of my work history explained or dismissed as Unsuccessful Work Attempts or as involving not-replicable workplace accommodations, I should be eligible for Social Security Disability Insurance.