Interacting with government in America as an autistic person
Can you think of a situation in which a person interacts with the government (federal, state, or local)? In America, this happens all the time. We may not realize how many times each day we do this in how this impacts us individually, or collectively. Few stop to think how our relationship with government has changed over the course of our lives.
By way of example, you may choose to buy a used car from a friend or a neighbor. That person will only take cash or a bank check. When you withdraw such a large amount from your account, it may trigger your bank to issue a suspicious activity report to the government. This may put several agencies on alert to your subsequent activities. “What are you doing with your money?” “Does your income level support such a purchase?” Where did all that money come from?” The answers may be simple, but the algorithms on the government side don’t care. They calculate odds and make entries in files that you’ll never see.
We never think about the deep levels of interaction we have with our government. We are more concerned with overt, direct contacts. We’re more concerned with the relationship when we need something from government. As autistic people, this contact is always fraught with anxiety and struggle.
Consider the plight of those autistic people whose systems are not built for America’s capitalistic system. Perhaps their sensory integration / regulation issues make it impossible for them to work in what we would consider a “regular job.” What becomes of them? If they’re not part of a wealthy family, they’ll likely attempt to apply for social service benefits.
Access to social service benefits like cash relief, food distribution, and disability payments rely on a ton of official paperwork. The government requires proof that one is indeed disabled. That proof may only come from a narrow band of professionals (doctors / psychiatrists, vocational rehab specialists, or schools). Access to these sources, as an adult, is costly.
A generation or two ago, the disabled were able to access community services. Charities existed in the community and raised funds through various initiatives like thrift stores and donation drives. Over the years, with changes to the business / tax codes, these charities have increasingly relied upon government grants and funding. The recent Autism CARES act was the final step in this evolution, with the federal government becoming the almost sole benefactor in the autism space. It is now the top source, feeding money to the large non-profits like Autism Speaks, who then direct where this money is spent. In this trickle-down model, adult autistics are often left out of direct support.
Compounding the problem here is the medical model of disability. Here, the American Psychological Association (APA) is the gatekeeper. They decide the diagnostic criteria for every “disease” or “disorder.” Here, the autistic system is considered a “disordered” version of a “normal” human system. As such, more money is directed to cures and therapies than are spent on supporting autistic people and their families. That, again, is left to the government in the form of social services.
With the APA in charge of who is / isn’t autistic, they’re free to react to market forces rather than neuroscience. Evidence of this can be seen in the changes to their Diagnostic and Statistical Manual (DSM). In version 4 of the DSM, the so-called autism spectrum was found in individual diagnoses such as Asperger’s Disorder, Sensory Processing Disorder, and Sensory Integration Disorder, to name a few. The American people complained that “treating” or accommodating many of these “disorders” wasn’t being adequately covered by insurance companies or schools. With this, and other issues in mind, the APA changed the classification in DSM 5. In DSM 5, the entire “spectrum” became autism, with “severity level” assigned according to one’s support needs.
But cause is not without affect. The changes lead to an “explosion” of autism. Cases in the US went from 1:10,000 in the population to 1:50 in just a decade. Suddenly, autistic people and their families had access to services like never before. The actual percentage of autistic people in the population didn’t change. Rather, the APA’s changes to the “diagnostic criteria” for autism changed. Overnight, the spectrum became simply autistic.
My research has shown that autism as a percentage of the human population has been relatively stable since the dawn of time (source). What changes is how society manages what it believes to be scarce resources. The changes to the DSM, and the “explosion” of cases, meant that suddenly resources to support autistic people were scarce. To meet its obligations under the Individuals with Disabilities in Education Act, government had to prioritize and shift funding to support autistic children. Those out of the K-12 system, like me, were out of luck.
Herein lies the problem. Government took over the role as the primary benefactor. It created laws and regulations that put small charities out of business. Autistic people would be supported via a trickle down of funds through large non-profits, with the money eventually ending up in communities. For autistic adults, that didn’t happen.
In the roughly 20-year regime of DSM 5, schools and local government strained at the demand for funds to support autistic children and their families. Insurance companies also made it more and more difficult for families to receive support as their profits were impacted by this spike in cases. Thus, the APA needed to make a change. They did so last year.
The APA found that many diagnosticians were not as strict in adhering to the diagnostic criteria as the APA would like. The original guidance in DSM 5 allowed practitioners to identify a majority of “symptoms” or “traits” from a list in determining if the person “had autism.” Under the 2022 Text Revision, the guidance changed. Practitioners must now find the patient to have all of the listed “symptoms” or “traits.” For adults who have found a way to accommodate themselves over time, this change necessarily removes the possibility of receiving a diagnosis, and with it the possibility of accessing support services.
With the government outsourcing the gatekeeping of access to necessary services to a private organization, one who is seemingly more concerned with profit margins than people, the disabled have been severely impacted. For those that can work, the autistic unemployment rate is around 60%. The suicide rate in the autistic community is about 5x that of the rest of the population. The same goes for the rate of homelessness. This will only get worse with the recent changes to the DSM.
As an autistic person with moderate support needs who can work, my path to employment has been difficult (I explore it in this article). Living below my area’s poverty line and faced with having to go back to school to be permitted by the government to continue being employed as a teacher, I’m now seeking help in funding this step in my journey. If you’re a free subscriber, please consider a paid subscription. Alternatively, if you’ve read this far, consider sharing the Autside with a friend. I appreciate your support.