My Comments To The Interagency Autism Coordinating Committee

Recently, the Autistic Self-Advocacy Network put out a call for comments to the U.S. government’s advisory body on priorities for autism funding and research. Comments can be submitted until November 30.

The IACC has solicited comments on seven topics, with two supplemental questions. My answers to two of them—on quality of life, and autistic adulthood—are presented here.

Question 5: What Kinds of Services and Supports are Needed to Maximize Quality of Life for People on the Autism Spectrum? (Topic: Services)

Please identify what you consider the most important services research, delivery, and policy priorities and gaps for Question 5. Topics include: service access and utilization, service systems, education, caregiving and family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and implementation of interventions in community settings.

There is something of a “missing middle” in quality of life discussion and research. Setting aside the obvious focus on children, research and discussion of actually-autistic adults frequently seems to focus on so-called “high-functioning” and “low-functioning” autistics (although I prefer language based upon support needs)—leaving out those of us I’ve called, because of our relative invisibility, the “mediocre autistic”.

To wit: the autistic adult who is more-or-less fully capable of independent living but incapable of being economically useful and therefore is not financially self-sufficient. (Some of us, as I’ve put it, are neither savant polymaths nor high support needs.) Quality of life is negatively impacted for these autistics by virtue of the nation’s difficult disability system which resists distinguishing between the types of personal physical and psychological resources available to any particular autistic (or otherwise disabled) person. Such physical and psychological resources are not necessarily, and certainly not inherently, interchangeable.

The fact, for example, that an autistic adult might be capable of sustaining the physical and psychological loads of independent living does not automatically translate into also being able to carry the additional load of sustained, daily employment—nor does it imply that one could “swap out” resources being used to live independently (which would mean to stop living independently) and use them instead for sustained, daily employment.

To further autistic quality of life, then, an understanding that is both broader and deeper is required on the part of the nation’s disability system, so that autistic adults capable of living independently but not also capable of sustained, daily employment are not left either to surrender their independence, to live in poverty, or both.

Question 6: How Can We Meet the Needs of People with ASD as They Progress into and through Adulthood? (Topic: Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services, and policy issues, relevant to Question 6. Topics include: health and quality of life across the lifespan, premature mortality, aging, transition, and adult services, including education, vocational training, employment, housing, financial planning and community integration.

Often missing from research and discussion of autistic adulthood are the dynamics unique to the late-diagnosed (especially the midlife-diagnosed) and the challenges inherent for the late-diagnosed autistic in elucidating for the nation’s disability system the whys, hows, and wherefores of having “survived” for decades apparently without requiring any support and then “suddenly” requiring (potentially substantial) support post-diagnosis.

While there’s increasing research attention to the mental health impacts of the intentional masking and camouflaging of diagnosed autistics across their lifetimes, less attention has been paid to the unintentional or unconscious masking engaged in by both the above diagnosed autistics and undiagnosed autistics—the latter of which is my focus here.

Once, not long after my own midlife diagnosis, when reaching out to a local nonprofit that assists disabled individuals access support and services, I was blindsided by an incredulous and skeptical, “Did you really not know?”

Yes, you really can not know.

The pressure to socially conform can be significant enough to cause the unknowingly-autistic to mask even from themselves, suppressing or explaining away both their disconnect and their distress. Surely, the unknowingly-autistic can think, either I’m simply a failure (and so my difficulties are my own fault) or my distress in the world is something everyone is experiencing but silently sucking up (and so my difficulties simply aren’t worth mentioning).

There easily can be a lack of both internal and external motivators signaling you to reach out for help, and there are (arguably) irresistible social forces pushing you simply to conform.

Conformity, however, doesn’t mean you’re managing just fine. It doesn’t mean you were actually not autistic for all that time. It doesn’t mean you weren’t, in reality, making yourself worse year after year, decade after decade from the unaddressed trauma.

Often related by late-diagnosed autistics is the bizarre experience of having become (for lack of a better phrase) “more autistic” after their diagnosis. What happens here, I suspect, is that in addition to the retcon of your life that a late autism diagnosis can be, all of that internal masking comes undone—behind which lay the years or decades of damage you unknowingly inflected upon yourself through succumbing to the weight of social conformity.

Related to all of this is the now almost commonly-described experience of autistic burnout. In many ways I suspect that the (for lack of a better phrase) “regression” experienced by late-diagnosed autistics in fact is a form of autistic burnout as we’re playing a kind of psychological catch-up with our lifetime of trauma from the lack of either disability accommodation or mitigation strategies.

Arguably, there are important qualitative differences between being diagnosed in your twenties versus being diagnosed in your forties—in terms of the presumptive time available to make adjustments to your life going forward and in terms of the amount of life you’ve lived so far under the disconnect, distress, and trauma of having been unknowingly autistic.

Needed, then, in research and discussion of autistic adulthood is the inclusion of the unique challenges faced by the late-diagnosed, and especially the midlife-diagnosed.

The sharp-eyed might notice that neither of these answers manages to keep to the IACC’s 1500-character limitation on public comments. Normally, I can meet a character or word limit; in this case, I suppose I lacked the motivation. As such, only select paragraphs were submitted to the IACC—with links to this post included.