“We cannot have equity without development of waivers that consider the basic realities of profound autism. Our children have very different needs than the people opposing use of the term.”
By Jacquelyne Kancir
I vividly remember first seeing the DSM-V’s new classification of Autism Spectrum Disorder. My young daughter was in the living room with her in-home occupational therapist. The therapist carefully pushed and pulled on a large bubblegum pink ball, gently rocking my daughter’s tiny body that laid draped over it. I remember that morning, using a steamer and scrub brush to get the toothpaste out of the tiny wooden slats of the bathroom cupboard door to erase the remnants of my daughter’s most recent sensory-seeking adventure.
I checked my email, and I simply could not understand what I was seeing. I asked the OT if she’d seen this new classification. She confirmed that this was the way things were going, and moreso, she expressed her concerns that professions like hers were about to be overrun with demand. She worried this would mean that children like my daughter would lose hours of service as her field worked to meet broader swaths of the community. I didn’t even make it through a single conversation after the release of the DSM-V before hearing the first seed of division being planted.
I asked her where PDD-NOS went, assuming they just moved it to another section? The OT told me that my daughter and my brother, who is independent but was diagnosed with PDD-NOS, and who is indescribably more functional than my daughter, now share the same diagnosis, Autism Spectrum Disorder. Just different levels based on support needs. It was shocking.
The rest of that day is a blur that blends into years of undulating personal understanding of disability, language, and values. Some level of absurdity is an inevitability during times of great change, and the past decade has been no exception. Chants of “nothing about us without us” filled rooms where service dogs were universally accepted as having the ability to analyze and meet their handlers’ human needs while parents were simultaneously accosted for daring to speak in proxy for their nonverbal children with intellectual disability who required their 24/7 support.
Over the past five years since receiving her ECF Choices waiver here in Tennessee, my now 20-year-old daughter has been isolated more and more from her community. I could not possibly even estimate the number of times I’ve had to physically intervene to stop her from aggressing at me or others, banging her head on the floor, biting her own arms, smacking her own face, or flipping the couch and destroying any property in her path–in many instances after being denied access to things so many of us take for granted, such as simply being able to go to Walmart. She is constantly battling a world of access-denied due to not having appropriate support.
At any time in these past five years, I could have dropped her off at an emergency room, and the state would have assumed the burden of placing her, likely in some far distant out-of-state highly-restrictive setting. In fact, some physicians and MCO administrators encouraged me to do exactly that in response to my pleas for additional support to provide her access to her community. Again, we see absurdity.
The pendulum shift of change has gone too far. Individuals with profound autism and related conditions are now shut out of society, hidden too far away from the broader community for others to notice their screams, as if the walls of Willowbrook itself still enveloped them. Many of the “evidence-based” policy changes of the past decade are now manufacturing an unnecessary and preventable crisis for people who have no access to the qualified staffing they need to live, work, and play in their homes and communities.
Although current estimates reveal that individuals with profound autism could represent 27% of the ASD population, a growing number of those with profound autism, like my daughter, are sitting on an empty waiver developed from policy that relied upon evidence which grossly underrepresented people like them. The underrepresentation and lack of necessary supports for this subset of the population is what ultimately led to The Lancet to call for the term “profound autism.”
If anyone is “concerned about the human and legal rights of the people who would be so labeled” as some self-advocates have stated, I ask that they share a modicum of concern for the very real human and legal rights currently being trampled by monolithic disability policy that does not provide recognition of nor accommodation for people like my daughter.
In the two years since The Lancet Commission endorsed the term “profound autism,” it has gained overwhelming support from the medical community. Neurodiversity groups have remained consistently opposed, regardless.
As I have worked to duct-tape the wreckage of our lifeboat just to stay above water, refusing insanely unhelpful recommendations to “just take her to the ER and tell them they have to place her,” and instead engaged in advocating for the supports she needs to access her best life, imagine how ridiculous it feels to read statements by those opposing the term profound autism by implying the term is somehow a ploy to expose our children to human rights abuses.
I need the distinction of “profound autism” in order to reduce the restriction, isolation, and risk she endures as a result of having a waiver that serves people with autism well across the state, but not autism like hers.
Those who oppose the term invoke baseless risks of returning to the horrors of our past and then project idealistic generalized assertions that all persons deserve what works for you. Frustratingly, I have yet to see any substantive plan included with the opposition statements for how those with profound autism can actually ever escape the inequities that leave them so currently underserved, just generalized assertions that they deserve what works for others.
We cannot have equity without development of waivers that consider the basic realities of profound autism. Our children have very different needs than the people opposing use of the term.
This is not a competition for services. I actually wish the neurodiversity movement had occurred sooner so my brother could have had access in his twenties to the world in which we live today. But we need a system that serves both my brother and my daughter with the vastly different supports they need, not a 3-pan buffet that only serves him well. We need a different menu of services altogether if my daughter is ever to have a life that truly honors the spirit of Olmstead.
The term profound autism was not created to place our children at risk of enduring the horrors of our past; it exists because our children remain without attention to their distinct needs, excluded from the menu of services offered to others, and shackled to chronic risk of police interactions, hospitalizations, and worse. The lived experiences of people with profound autism and those who provide their constant care are vastly different than the lived experiences of those who carry the privilege to hold the misguided belief that the term “profound autism” is a danger.
Let’s stop expending energy debating words and get down to the necessary and important work of improving quality of life, accessibility, and equity for people with profound autism. It is my hope that the period of that work will include more cohesion and collaboration within the disability community than the past 20 years that brought us here.
Jacquelyne Kancir and her daughter live in Tennessee. Editor’s note: An earlier version of this piece can be found on the Tennessee NCSA blog here.
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