The Good Life: Access Denied
(In Response to the Washington Post’s, “A rift over ‘profound autism’ reveals a community’s deeper divide”)
My mother was a truly remarkable advocate for both me and my brother, but the world was different in the 80s. Despite my mother’s exhaustive attempts to find the most appropriate medical and educational supports for my brother, he spent years of his childhood misdiagnosed. Thus, every pill he swallowed, every therapy session he attended, and at every desk he sat up until “PDD-NOS” entered my young vernacular was simply inappropriate at best and sometimes even harmful.
Once properly diagnosed, my brother went on to thrive through his teen years. My mother found him a school that focused on his strengths, helped build his confidence, and showed him that he was valued in this world. He even started his own small engine repair business while still in high school, and he got a job at the airport after graduating.
In our early adulthood, he still needed an intermediate amount of support. Up until my mid-30s, he would sometimes live with me and sometimes live with my mother. We didn’t have an option in Pennsylvania then like Tennessee has today with ECF Choices. When my brother graduated high school, he fell off a cliff of services. He didn’t qualify for HCBS waivers, and he didn’t have access to job coaches, enabling technology, or other supports that, in hindsight, I feel would have prevented many of the challenges he faced on his quest for full independence.
Nevertheless, he persisted, and for the past seven years, he’s lived independently successfully. He drives, cooks his own meals, does his own shopping, pays his bills, cleans his house, has his own friends, enjoys multiple hobbies, and so much more.
I vividly remember pieces of the day I first saw 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, before the therapist arrived, using a purple Shark handheld 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.
While my daughter was momentarily calm and content with the therapist, I checked my email, and I simply could not understand what I was seeing. When the OT was packing to go, I asked if she’d seen this new classification yet. 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 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? At that moment, the OT became the first person to tell me that my brother and my daughter now had the same diagnosis, Autism Spectrum Disorder, just different levels based on support needs–shocking!
I don’t think the clarity of certain pieces of that day are born out of trauma. I don’t remember feeling sad or scared or anything outside of complete confusion. For whatever reason, nonetheless, my brain has found cause to mark this day as significant in the course of my life.
The rest of that day is just a blur that blends into years of undulating personal understanding of disability, language, and values. That personal understanding is ever evolving, and I wonder if the me ten years from now will want to high-five or face-palm the me of today. We have all come so far, learned so much, and yet still undoubtedly have so much to learn.
The neurodiversity movement has challenged us. As is often the case in periods of great change, the community polarized, and at times extreme edges of both opposing sides were really ugly towards one another. In spite of the darker parts of the process, society listened to the voices of countless self-advocates and subsequently shed much of its bias and shunned harmful abuses. For that, we can all celebrate.
Some level of absurdity is an inevitability during times of great change. 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.
“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, 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.
“Nothing about us without us.” We’ve come full circle, and 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” (ASAN Executive Director Julia Bascom), 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 on the future of care and clinical research in autism formally 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 then read statements by those opposing the term profound autism that imply the term is somehow a ploy to expose our children to human rights abuses.
I don’t need a new term in order to lock my daughter away for good or to expose her to risk of abuses she would lack the ability to even tell me happened. The keys to access that door were thrown at me by systems of “support” with just the good old familiar word “autism” attached. 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 her.
“I don’t need a new term in order to lock my daughter away for good or to expose her to risk of abuses she would lack the ability to even tell me happened. The keys to access that door were thrown at me by systems of “support” with just the good old familiar word “autism” attached.”
Every opposition statement I have seen seems to adhere to a basic two-part formula—A.) [incite fear by inserting baseless risks of returning to the horrors of our past] + B.) [swoon the public with 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.
I don’t read the statements hoping to be repeatedly disappointed, truly. On the contrary, I keep hoping I’ll see some magical roadmap unfolded leading to an appropriately supported existence for my daughter through her current service delivery system. We haven’t heard a plan for equity because there isn’t one nor can there be one without development of waivers that consider the basic concept that “equality” and “equity” are not synonymous. People with profound autism have different needs than the people opposing use of the term.
The neurodiversity movement has had some positive impacts on society. I have learned important lessons, humbling lessons at times, by listening to people with autism describe their experiences. I’m grateful for that, and I will always listen. I empathize and share in their outrage at the injustices that sparked a necessity for the neurodiversity movement to form.
This is not a competition for services nor for the table. 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. I want a table, though, that serves both my brother and my daughter with the supports they need to meet their individual goals that are entirely different, not a 3-pan buffet that only serves him well. He wouldn’t even sit at a table that excluded my daughter, and I’m often left in disbelief when I see other disability policy advocates fail to understand it is the very table they have inadvertently set.
I stand as my daughter’s trusted proxy in unrelenting rebellion against any additional, even unintentional, attempts at restricting her to a life of isolation, self-injury, and aggression. She doesn’t need an empty seat reserved at a table that has not, will not, and/or cannot serve her. We need a different menu of services altogether if she 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 without access to supports designed with their distinct needs considered, our children remain shackled to chronic risk of police interactions, hospitalizations, and worse.
“The term profound autism was not created to place our children at risk of enduring the horrors of our past; it exists because without access to supports designed with their distinct needs considered, our children remain shackled to chronic risk of police interactions, hospitalizations, and worse.”
Both sides of the divide seem to be on the same page that all people with autism deserve to live good lives. We cannot begin to rectify injustices that we fail to acknowledge, though. 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 necessary to hold the misguided belief that the term “profound autism” is a danger, not the denial of its necessity. In order for people with profound autism to gain access to the good life we all agree they deserve, we must first accept that they have been denied access to it to begin with. Their access has been denied by our failure to consider their needs as unique. This is the history we must stop repeating. Perhaps then we can cease 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.
