Achieving Equity For All People With Autism

Pictured: Torn page that says “Autism is a… special ability”
Photo credit: NCSAutism

By Jackie Kancir

March should signify spring and renewal, but for many in the autism community, the spring solstice rains down a flood of cortisol knowing the 30-day total eclipse from reality is near again. While some take early shots across the bow before April even arrives, others open the month trying to calm the exhaustive rifts with positive messages that aim to redirect to common goals, respect, and kindness.

This April, the White House abandoned at least 27% of the autistic population, as well as the many others who fall just outside the criteria for profound autism, with its “Proclamation on World Autism Awareness (strike “Awareness”) Acceptance Day,” rich with carefully crafted language such as “autism spectrum” (strike “disorder”).

The proclamation’s though kumbaya but tone-deaf messaging on the edge of the Autism CARES Act sundowning this fall can’t be blamed on the current administration. After all, we have had seventeen years complete with two democratic presidents and two republican presidents since the Combating Autism Act of 2006 (reauthorized as the Autism CARES Act in 2014) and all of its money, research, and Interagency Autism Coordination Committee (IACC) guidance to help inform legislators, policymakers, researchers, educators, and healthcare systems what people with autism spectrum disorder (ASD) want and need.

Nevertheless, the Government Accountability Office (GAO) continues to show the lion’s share of autism research has likely been unnecessarily duplicative. Since the last reauthorization, researchers have also discovered nearly 27% of people with autism spectrum disorder have become nearly extinct from research due to selection bias.

Mensa-qualifying autistic activists with undeniable special abilities and the communicative capacity to self-advocate have rightfully sat at the highest levels of decision-making tables for autism-related matters. Unfortunately, the chants of “nothing about us without us” truncated the unspoken end-phrase–”as long as they’re like us.” The voiceless side of autism, the ones so cognitively impaired that even AAC could not help them effectively communicate, those who required trusted carers to communicate as their proxy, they were shunned from those tables of discussions when parents were silenced.

“Guided by the authoritative voices of people with autism, this heterogeneous neurodevelopmental disorder with its rich medical history, albeit at its worst times dark, steered society to reject medical science and accept the propaganda of the emerging social model. If we believe that, we can all forego our academic journal fees and get all we need to know about this “little different identity” for free on social media like TikTok now instead.”

The social model side of the autism advocacy community often argues that intellectual disability, not autism, is the cause for any symptoms not worthy of celebrations and infinite rainbows. The people with autism who need helmets to prevent traumatic brain injury as they repeatedly beat their heads on the floor, the ones who bite chunks from their own arms, the ones who sprint into oncoming traffic with zero fear of danger, the ones who ingest screws and other inedible objects they find, the ones who require continuous life-long specialized supports and services 24/7 and lack the ability to self-advocate–well “that’s just intellectual disability, not autism.”

Though that is not correct, why would it matter if it was? I can’t help but think of the people with profound intellectual disability who may manifest with challenging behaviors but do not have a co-occurring autism diagnosis. Do their lives not matter, too? The blame for the diagnostic shifts is partly on healthcare insurance companies, many who limit specific treatments to those only with an autism diagnosis. Anyone in that level of severe behavioral crisis should have access to a full diagnostic workup with a specialized team trained in a biospsychosocial approach, but sadly, those are few and far between, even for those who do have an ASD diagnosis. Providers should be cautious when finding a cause for the behavior surges. It may be just that, a cause. In many cases, there may be a multitude of causes for major shifts from baseline. Good communication with the primary caregiver is helpful to understand what has recently changed from the baseline. Diagnostic tools such as urine and blood labs or x-rays, and consults with a multidisciplinary team of doctors can help rule in other contributing factors. Dental pain, UTIs, and constipation are some of the most frequent causes of challenging behavior surges. Missed opportunities to resolve these highly treatable conditions can lead to serious bodily harm if the behavior crisis is not stabilized. Least restrictive, non-invasive, whole-person evaluations can save a person with profound autism from serious harm and overly restrictive settings.

When parents and providers advocate for autistic individuals with these debilitating life-threatening symptoms, the social model side calls them ableists, accuses them of “deficit mindsets,” and tells them to “take the dis out of ability.” For autistic people who don’t experience these symptoms, they have often been marginalized and ridiculed by people who used to attribute these types of severe challenging behaviors as what defined autism. Thus, they call these symptoms “stigmatizing.” For them, they are. For our children, they’re reality, and if their reality is ignored and untreated, their existence is confined to enduring the most unjust disparity that exists in our healthcare system today.

I won’t say parents aren’t angry. I won’t say they always speak kindly, though I imagine kindness is always the goal. I will say I understand these parents (as well as the providers who truly care about their patients suffering from profound autism) are overwhelmed, frustrated, and quite frankly, traumatized. The parents I know don’t see their children as a burden. The heavy unbearable weight they feel comes from constantly battling a system of “support” that has nothing appropriate for their child’s needs coupled with the paralyzing fear of the consequences of ER boarding, incarceration, or even death if they are unable to pull off the miracle and find the seemingly nonexistent help they seek for their child. Their frustration resides in knowing the bellowing laugh their child has that fills the whole room when they’re happy, the pride that shines from every part of them when they share a new picture, and they want those moments, more of them, through infinity.

They want that happy, content, proud person to be free of all these barriers they unjustly face navigating a world wholly unequipped for their care–a world veering further from the reality of their existence each year that goes by. They want their child to be seen, known, and cherished so that there is a community who will love them long after the parent is gone from this world.

In the beginning of the neurodiversity movement, I believe the vitriol spewed towards parents by many autistic self-advocates was born of the same state of being. Years of being bullied, misunderstood, misdiagnosed, left out, passed over, and underestimated required a serious pendulum shift to correct. For the first time in history, the world began listening to them about what they needed, who they were, what they wanted, and what they could do. They said they wanted acceptance and appreciation for who they were as they were. They told us they didn’t want to be seen as broken or needing to be fixed. We listened. We’re listening. The White House listened.

We continue to listen, and all should continue in regard to their needs. Despite any good faith attempt, seventeen years have proven that the social model side of autism does not and can not speak for those with the complex medical needs of profound autism. Their needs are fundamentally different than those with co-occurring intellectual disability, requiring near-continuous or continuous 24/7 support, who lack the ability to self-advocate, and who yes, in a certain subset, may manifest intense dangerous behaviors outside their control and with no awareness of consequences nor intent to harm. The behaviors are an involuntary symptom of disability for this specific unique subset.

“In reality, the great challenges we face are really not about autism versus intellectual disability. The most notable factors are severity and co-occurrence. That’s another word that brings about the strike-word mobs–”severe.”

As much as I’d love to opt out of the DSM-V and return to the DSM-IV, since 2013 the DSM-V has been what we have to define the diagnostic criteria for autism. Parents riled against the change, but the neurodiversity movement of autistic self-advocates, however, proudly claimed the validity of the convergence of four disorders into one with varying levels. So here we are. The version they praised requires specificity of severity for diagnosis. We are not striking the word.

We know now that 94% of autistic research participants did not have intellectual disability (ID, IQ <70), even though 38% of people with ASD are diagnosed with ID. Only 4% had an IQ below 50, and only 2% were nonverbal. These findings led the Lancet Commission in 2021 to introduce the term profound autism. This term was not created for any nefarious cause. On the contrary, it was a clarion call to researchers and policymakers that a section of our population that has life-threatening risks without intensive continuous support lifelong has become nearly wiped completely from our conversations, our views, and our studies.

Pictured: Autism with Intellectual Disability Population Prevalence Chart
Photo Credit: NCSAutism

Pictured: Autism with Intellectual Disability Research Representation Chart
Photo Credit: NCSAutism

Unrepresented by research, they are unrepresented in policy, and thus languishing isolated and segregated unable to access supports and services that meet their unique needs. If your diagnosis is ID or ASD and you require minimal to moderate supports, you likely find that current systems of supports through things like HCBS waivers are relatively, if not wildly, helpful for you. If you are severely or profoundly impacted by ID or ASD, especially if ID and ASD, our current systems of support are woefully inadequate to meet your needs. Add-on challenging behaviors to the latter group, and that’s a population that is living in the hidden realities of a modernized institutionalization.

I’m not talking about buildings like Willowbrook. I’m talking the experience of institutionalization. People with profound autism and challenging behaviors may have HCBS waivers but have no access to staffed supports, have no access to safe transportation to their medical appointments, no safe access to crisis response, no community engagement, no meaningful daily activity. 14c programs were shuttered in several states with promises of competitive integrated employment, but no one has conducted any studies still to follow-up on the lives of those who now have lost any access to social engagement or a sense of purpose. We close programs claiming they’re harmful, and we don’t ensure a comparable good option exists. We just leave them behind, and we call this “disability justice”?

My special abilities include connecting dots, hyper-focusing on subjects of interest, strong adherence to justice and fairness, a (sometimes too) logical way of thinking, a love of systems, and an ease with complex problem-solving. I stick to what I’m good at because I’m an incredibly asynchronous learner, and I crave predictability. 

I’m really good at advocating for other people’s children. I’m really good at big systems changes to benefit larger parts of the population, like the creation of IDD-Specific Protocols. I often feel I’m failing my own daughter, though. Despite my tenacious advocacy, she’s still a 20-year-old vibrant, artistic, confident girl who wants every day to be a party, but she has only one more year left of high school and no appropriate options for daily activity being offered after that. She’s speeding towards becoming another person with profound autism isolated, segregated, and institutionalized at home on a waiver that is empty for her but that serves thousands without profound autism well.

My needs and her needs are not the same. I know that. Being able to get all of the things I see in my own mind out to others is often hard for me. I just do not know how to effectively articulate to the rest of the world who has bought into the propaganda that all we need to do is accept autism, hold hands, and celebrate. I need you to be aware of her type of autism so you can help us develop unique systems that work for her so she can be accepted, too. Her autism will kill her unless I live forever to continue mitigating the life-threatening risks every day or unless society recognizes not all autism is a gift.

People who have no direct experience living with someone with my daughter’s symptoms claim parents who say things like that are fear-mongering, that we hate our kids, and all kinds of the most horrific accusations. On my good days, I have sympathy for it, knowing I probably wouldn’t even believe it if I hadn’t been living with it all these years. To be fair, it truly is surreal. On the hard days, no, I have no patience for gross mischaracterizations of and attack on parent caregivers, and I’m so angry that the same people who advocate for the whole world to accept them as they are refuse to accept my daughter as she is. We can not speak for those we do not understand their lived experiences. Having ASD does not qualify you to advocate for profound autism. You need intimate awareness–as a parent, a sibling, a specialized provider, or others who have spent the time. If you’re still questioning the existence of profound autism, you have not experienced life with someone who has it. If you’re still insisting only people with profound autism can advocate on profound autism, you’ve completely missed the point. It’s really that simple.

“I want to celebrate people who want to be celebrated. I want to accept people who want acceptance. I need awareness for my daughter, though, because from the White House to the research lab, from the hospital to the waiver, from the “integrated” teams to the “integrated” housing, she doesn’t exist. To me though, she fills my entire world, and I want a world that sees the whole her that I see. I need all of us to focus on ensuring people with profound autism can live safe, meaningful, quality lives by getting the whole-person biopsychosocial treatment for their disorder. Special abilities and self-identities don’t drive funding, research, and specialized treatments. Debilitating disorders do. Please stop sanitizing her disability, especially when we are so drastically far from being close to the system of care that individuals with profound autism need for quality of life.”

It’s not about being right or wrong. It’s about perception and lived experience. One size fits all will never fit a heterogeneous disorder. We need to update the Autism CARES Act this fall to include prioritization of profound autism.

In conclusion, I posted this graphic this month, and the following responses are a sample from social media from all sides of the autism community. They really demonstrate how fractured the autism community is by our rigid perceptions. Let’s try considering that we could be right about our own experiences, and another may be right with completely different opinions about their own experiences. Let’s commit to person-centered support and reject groupthink dogma.

“I reject disorder. It’s a dehumanizing descriptor. I prefer autism. Or condition. No one wants to be described as disordered.” (PhD Candidate / IACC member / autistic self-advocate)

“TRUE AUTISM IS A DISABILITY!!” (Nurse and parent of adult autistic son with apraxia)

“Wrong. That’s outdated thinking. Your entire post is ableist. I’m sick and tired of people like you labeling autism as bad. It’s always been a difference. We don’t need to be cured or fixed. We aren’t a disease or disability.“ (Autistic Self-Advocate who identifies as a “Proud Aspie”)

“Wow I didn't realize my son really had to try hard to be profound. He is a [white], male, from upper middle class, full term, avg birth weight.” (Parent of a nonverbal autistic adult son with intellectual disability & Lennox Gastaut Syndrome)

“The ‘Autism is a special ability’ looks like the main message….Oh I see! It’s actually ‘on the nose.’ I read it wrong the first time….I had an adrenal response to the headline!” (Parent of a daughter with profound autism and CHARGE Syndrome)

“I had trouble understanding it…, don’t disagree with it once explained. I’m autistic but not profound/severe. (Autistic self-advocate)

Image Note: The main message everyone hears in the media is that it's a special ability. Meanwhile, the facts (and people who experience it as a debilitating disability) are ignored. The hierarchy was intentionally meant to mirror the present-day absurdity of a solo narrative for such a heterogeneous disorder. People who see autism as a special ability were highly offended by any mention of anything other than ability, even if in the fine print, while people caring for someone with profound autism were triggered and unable to see anything but yet another display of special ability taking control of the messaging, and still others were left feeling left out completely, falling in the gaps that still exist between the extremes. This is the autism community as it exists today.

We have a long way to go before we achieve equity for all people with autism. Can we focus on the important work of the necessary systems changes for that? Some lives are depending on it. 

References:

Autistic Self Advocacy Network. (2024, March 28). Before You Donate to Autism Speaks, Consider the Facts. Https://Autisticadvocacy.Org/. https://autisticadvocacy.org/considerthefacts/

Ellison, K. (n.d.). Why the phrase ‘profound autism’ has parents and advocates at odds—The Washington Post. Retrieved April 21, 2024, from https://www.washingtonpost.com/health/2023/11/18/profound-autism-labels-neurodiversity/

Government Accountability Office. (2024). AUTISM RESEARCH AND SUPPORT SERVICES Federal Interagency Coordination and Monitoring Efforts Could Be Further Strengthened Report to Congressional Requesters United States Government Accountability Office. https://www.gao.gov/assets/d24106446.pdf

Lamb, E. (2024). Eileen Lamb—Here’s your World Autism Month reminder: Whether you... | Facebook. Retrieved April 21, 2024, from https://www.facebook.com/theautismcafe/posts/pfbid0Z5C6Yg1sm7KsUQVPgcZqXxSD4JAwVN3N6j9Aq1Y2WC9QLa6RVswa5QuHdkg2MLV1l

Lord, Catherine et al. (2021), The Lancet Commission on the future of care and clinical research in autism, The Lancet, Volume 399, Issue 10321, 271 - 334. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/abstract

Maenner et al. (n.d.). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020 | MMWR. Retrieved April 21, 2024, from https://www.cdc.gov/mmwr/volumes/72/ss/ss7202a1.htm?s_cid=ss7202a1_w

National Council on Severe Autism. (n.d.-a). The Crisis of “Empty Waivers” for the Profoundly Autistic. Retrieved January 2, 2024, from https://www.ncsautism.org/s/NCSA_EmptyWaivers_OnePager.pdf

National Council on Severe Autism. (n.d.-b). The Need to Retain 14(c) Non-Competitive Employment for the Severely Cognitively Disabled. Retrieved January 2, 2024, from https://www.ncsautism.org/s/NCSA_14c_OnePager.pdf

National Council on Severe Autism. (2024, January 10). NCSA Submits Concerns About the Autism CARES Act Reauthorization: Now Is the Time for Bold Action — NCSA. National Council on Severe Autism. https://www.ncsautism.org/blog//ncsa-submits-concerns-about-the-autism-cares-act-reauthorization-now-is-the-time-for-bold-action

Russel et al. (n.d.). Selection bias on intellectual ability in autism research: A cross-sectional review and meta-analysis | Molecular Autism | Full Text. Retrieved April 21, 2024, from https://molecularautism.biomedcentral.com/articles/10.1186/s13229-019-0260-x

Tennessee Department of Intellectual and Developmental Disabilities. (n.d.). Emergency Room Stabilization Protocol for Individuals with IDD – Health Care for Adults with Intellectual and Developmental Disabilities. Retrieved April 21, 2024, from https://iddtoolkit.vkcsites.org/behavioral-and-mental-health-issues/er-idd-stabilization-protocol/

The White House. (2024, April 1). A Proclamation on World Autism Acceptance Day, 2024. The White House. https://www.whitehouse.gov/briefing-room/presidential-actions/2024/04/01/a-proclamation-on-world-autism-awareness-day-2024/

About the Author 

Jackie is a disability policy advocate based in West Tennessee and mother to a young adult with complex disabilities, including SynGAP1 and autism. She passionately works to destigmatize behavior symptoms and improve healthcare delivery for people with dual diagnosis.

Her advocacy projects include support for improving crisis systems, ER stabilization protocols, and protecting students with severe challenging behavior symptoms.

Jackie is a 2022 alumna of Partners in Policymaking™️ for the TN Council on Developmental Disabilities and a member of the Statewide Planning and Policy Council (SPPC) for the TN Department of Intellectual & Developmental Disabilities (TN DIDD). She is the Policy Director for the National Council on Severe Autism (NCSA). Jackie volunteers Lead of Policy & Advocacy for the SynGAP Research Fund, and as a disability educational advocate for students with severe challenging behaviors symptoms.

Jackie and her daughter reside on their peaceful rural homestead, Bunny Egg Acres. They both enjoy photography, baking, and creative projects.