By Anne Roux

In my past life, I directed a state nonprofit that provided information and resources to families of autistic youth and adults. One family left an indelible impression. Their young adult son – let’s call him “Ricky” - was prone to harming himself. He required a sensory room with padded walls for self-calming, to avoid the physical trauma from bashing his head into concrete walls. Medication changes were highly challenging, as they required inpatient care, and there were almost no facilities that could accommodate his needs. In fact, there were almost no identifiable, safe options for Ricky to receive care –or to live– in the community. This young man needed a range of long-term and emergency care options, highly trained and consistent direct support workers, and a place to live that was modified to keep him safe. Options that did not exist. 

 Ricky’s level of needs might now be called “profound”, as put forward in the Lancet Commission’s report on the future of care and clinical research in autism. Ricky had unmet service and support needs that exceeded what was available in the community at that time – and to this day. Ricky’s scenario is a classic case study of the state system’s failure to meet the needs of people with extreme support needs. 

 Today, I engage in autism services research which aims to understand population level needs but also the needs of specific groups of people – like the Ricky’s of the world. In reality, I rarely encounter scientific publications about people like Ricky. Solving the issues that Ricky and his family exemplify is highly complex – necessitating individualized, specialized, expensive solutions; funding for this level of care exists only in small pots of restricted funds like specialized Medicaid waivers. As the numbers of autistic youth grow, and pressures are placed on the system to produce solutions that meet the broad needs of many people, I worry that the needs of individuals like Ricky are more and more at risk of being overlooked, if we don’t come together to understand and advocate for solutions to meet a full range of needs. 

 There are two current schools of thought on how to advance the lives of autistic people – some of whom have needs like Ricky’s and others who have lower or variable intensity of needs – but which also have consequential impact on their lives. 

 Meaningful inclusion of autistic people in society requires changing the environments people must live and function within, including how people think and talk about autistic people. Achievement of rights requires the dismantling of systems of oppression. 

 Meaningful inclusion of autistic people in society requires provision of specialized supports, services and policies that facilitate the achievement of health and wellbeing of autistic people – no matter what type and degree of needs they have. Researchers and advocates should use whatever terminology they deem appropriate to label subgroups of autistic people (people with autism) who are in need of services and supports. Achievement of progress requires making a case that the U.S. will attend to and fund. 

 These statements are my gross synopsis of where the bulk of current discourse within the autism world is centered. The rhetorical positioning focuses less on what people need and more on how researchers talk or write about them. But where does the non-researcher, non-advocate community land on which option will produce the results that Ricky needs? Largely, nowhere. Esoteric arguments about language are generally not on their radar, as this doesn’t practically address their day-to-day needs. 

 I’m not here to share my opinion on these statements; I am here to point out something that is not being discussed. When you step away from this binary thinking, no matter which position you lean toward, and consider why people within each school of thought feel so passionate, it’s because they each identify important needs that are not being met. And rightfully so. The level of unmet need – for inclusion, for services and direct support, for access, for financial stability – is striking 

 And while focusing on language is critical for calling out discriminatory perspectives and raises issues of what it takes – in terms of groveling and positioning – to actually get to change, an overfocus on language may be overshadowing more overt forms of discrimination. This is not unlike how a focus on arguments about masking during COVID detracted from community-wide responses that would have protected more vulnerable persons. 

 Discrimination is rampant in the world of health services and impacts people’s ability to get their needs met. Discriminatory acts take many forms: Lack of access to needed services. Turning away from people with marginalized identities, such as Black and Latinx youth who need culturally appropriate intervention options. Systemic racism that favors provision of information and services to some, but not all, people. A belief that autistic people who can speak and have above average intelligence do not have service and support needs. Restrictive eligibility criteria that prevent access to I/DD services across states. Systems with artificial subdivision of developmental versus psychiatric needs. Systems and processes that are too complex to navigate. Service systems built to support people with intellectual disability that struggle to meet the needs of autistic people, especially in adulthood. Lack of incentive and appropriate reimbursement to serve people whose needs exceed caps on service costs. Lack of attention to the most extreme service needs. 

 The vast scope of discrimination points to (shouts for) disability justice. Disability justice centers the rights of people with marginalized identities and explores the intersection of disability with race, socio-economic status, gender, sexuality, and ableism within capitalist societies. A disability justice framework is critical when a healthcare system and government have an abundance of resources but behave as if there is a constant cycle of scarcity, while actively choosing to ignore the hundreds of thousands of people with intellectual and developmental disabilities (I/DD) who may wait 10+ years for funding.  

 I believe that, beyond the language divide, common ground does exist in recognizing discrimination and the need to address it. Common ground exists within service system issues that are undeniable. I believe most autistic people, their family members, researchers, providers, advocates, allies would agree these are essential to address: 

  • Home and Community Based Services (HCBS) adequacy and availability 
  • Expand access to HUD housing subsidies, e.g., Section 8 portable vouchers 
  • Eliminate discriminatory limits on occupants with developmental disabilities 
  • SSI and SSDI increases to reflect actual costs of daily living expenses
  • Access to crisis care
  • Reduce waitlists for waiver services funded by state Medicaid programs 
  • Direct support provider (DSP) crisis – rates, career path, burnout 
  • Improved diagnosis of underlying medical problems 
  • Expand access to telehealth evaluations, when appropriate 
  • Reduce disparities, ensure access to treatment for all, regardless of racial, ethnic or socio-economic background 
  • Adequate reimbursement rates 
  • Need to expand number of psychiatric cares providers 
  • Expand curricula aimed at training students about autism 

Of note, I self-selected these points from the policy position statement of the National Council on Severe Autism. This is an organization that actively promotes use of the term profound autism – a point of disagreement among the many autistic and non-autistic academics, self-advocates, and allies who promote anti-ableist language.  

 Language will continue to change. It must. But, meanwhile, opportunities to meet a full spectrum of existing and future needs persist and must also be addressed. It is vital to remember that we should be advocating together for service and support funding for everyone – across types of needs and across the lifespan. It is vital that we create policy-driven healthcare and service system solutions that ensure no one is left behind.  

 Meanwhile, we are missing opportunities to unite around actions. We are losing ground in the battle to meet our collective needs. 

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