Autistic Voices Unheard: A Critical Look at the Autism CARES Act 2024
As a 53-year-old autistic gestalt processor and trans woman, I’ve observed the ebb and flow of autism legislation with keen interest. The latest iteration, the Autism CARES Act of 2024, emerges from a crucible of panic, misconception, and opportunism. Its roots lie in the frantic pleas of parents storming Congressional offices, demanding answers about their autistic children. It’s fuelled by reports of communities grappling with a purportedly high prevalence of autism, as if we were a pestilence rather than a natural part of human neurodiversity. Lurking behind these genuine, if misguided, concerns are the lobbying vultures, eyeing a golden opportunity to milk the governmental cow for research funding. This Act, whilst ostensibly aimed at support and understanding, risks perpetuating harmful narratives and misdirecting resources. In today’s article, I'll dissect the Act's provisions, examining how it fails to address the real needs of autistic individuals across the spectrum, instead catering to alarmist rhetoric and institutional interests.
Background on Autism CARES Act
The Autism CARES Act of 2024 is the latest in a series of legislative efforts ostensibly aimed at addressing autism in the United States. Its predecessors, dating back to the early 2000s, have consistently funnelled vast sums into the coffers of large research organisations and self-appointed autism “advocates” like Autism $peaks. These Acts have historically prioritised a medical model of autism, focusing on “surveillance” and “prevention” rather than support and accommodation.
The 2024 Act continues this troubling tradition. Its main objectives, cloaked in the language of care and support, primarily revolve around expanding research into the “causes” of autism. This includes extensive genomic studies and investigations into environmental factors, all under the guise of “prevention.” The National Institutes of Health, in their infinite wisdom, define prevention in this context as intervening before “health effects” occur—as if our neurodiversity were a disease to be eradicated.
Key changes in this version include increased funding for these misguided research endeavours and an expansion of surveillance programs. The Act pays lip service to support services, but the bulk of its resources remain dedicated to probing our genes and scrutinising our environments, all in the name of “understanding” a condition they seem determined to pathologise rather than accept.
Analysis of Key Provisions and Funding Distributions
The Act, whilst not explicitly mentioning “profound autism,” is rife with language that mirrors the press releases and marketing materials of organisations championing this divisive concept. This linguistic alignment is no coincidence; it’s a testament to the insidious influence these groups wield in shaping autism policy.
The Act’s funding allocations reveal a stark disparity between institutional research and direct support for autistic individuals and their families. Large organisations and research institutions, with their well-oiled grant-writing machines, are perfectly positioned to capitalise on this legislation. They’ve essentially written themselves a blank cheque, crafting the Act’s language to align seamlessly with their prepared grant proposals.
This calculated approach leaves small, rural autism support charities at a severe disadvantage. These grassroots organisations, often run by and for autistic individuals and their families, have a dismal record of securing grants under previous iterations of the Act. Their struggle persists not due to a lack of merit or need, but because they lack the resources to navigate the Byzantine grant application process effectively.
The Act’s priorities are clearly skewed towards research that aligns with the “profound autism” narrative, despite not using the term explicitly. This focus on what these organisations deem the most “severe” presentations of autism neglects the vast majority of autistic individuals. My research indicates that Level 1 autistics comprise at least 72% of the diagnosed population, a figure that’s likely an underestimate given the prevalence of self-diagnosis among those with the cognitive resources to navigate that process.
As an autistic individual with a Level 2 diagnosis—a label that stems more from being an unsupported gestalt language processor at the time of my diagnosis than from any inherent “severity”—I’m acutely aware of how this narrow focus fails to address the diverse needs across the autism spectrum. The Act’s language, whilst ostensibly neutral, is carefully crafted to prioritise research and interventions aimed at the most ‘visibly autistic’ individuals, aligning with the marketing strategies of large autism organisations.
This approach not only neglects the majority of autistic individuals but also reinforces harmful stereotypes. It perpetuates the misconception that autism is only “real” or “worthy of attention” when it presents in ways that neurotypical society finds most challenging or visible.
Moreover, the Act’s emphasis on “prevention” and “causes” aligns disturbingly well with the goals of organisations seeking to separate “profound autism” as a distinct diagnosis. Whilst not explicitly stated, the Act’s priorities could pave the way for future legislation that further marginalises Level 1 and 2 autistics, as well as the self-diagnosed, potentially stripping them of already limited support and resources.
The implications of this are far-reaching. If future iterations of the Act shift focus entirely to “profound autism,” the majority of autistic individuals could find themselves even more underserved and unsupported than they already are. This would be a devastating blow to the autistic community, reinforcing the harmful notion that only certain presentations of autism are valid or deserving of support.
This myopic approach not only fails to address the diverse needs across the autism spectrum but also undermines the neurodiversity paradigm. It’s a stark reminder that those drafting and influencing autism legislation often lack a nuanced understanding of autistic experiences and needs across all levels of support requirements. The Act, in its current form, serves more as a funding mechanism for select organisations and researchers than as a comprehensive support system for autistic individuals.
The Concept of “Prevention” in the Act
The term “prevention” in the Act is a dagger aimed at the heart of the autistic community. The National Institutes of Health (NIH), in their typical approach to health concerns, defines prevention as intervening before a condition manifests or progresses. But autism isn’t a disease to be prevented; it’s a fundamental aspect of human neurodiversity.
The use of “prevention” in the context of autism research is not just misguided—it’s existentially threatening. It implies that our very existence is undesirable, that we are problems to be solved rather than human beings to be supported and celebrated (this view is why I unironically titled my autism book, No Place for Autism?). This framing aligns disturbingly well with the Power Threat Meaning Framework (PTMF), illustrating how societal power structures can pose existential threats to marginalised groups.
The power dynamic here is clear: neurotypical researchers and policymakers, backed by government funding, are positioning themselves as arbiters of which neurotypes are acceptable. The threat is equally apparent: the potential eradication of autistic individuals through prenatal testing or early interventions aimed at altering our fundamental neurology. The meaning derived from this is deeply traumatic: we are unwanted, viewed as burdens to be prevented rather than valuable members of the human tapestry.
For autistic individuals, the emotional impact of this framing is profound. It’s a constant, government-sanctioned reminder that our society would prefer we didn't exist. The dread that accompanies this realisation is palpable—a persistent, gnawing fear that future generations of autistics might be prevented from ever experiencing life. It’s a form of cultural violence, targeting not just individuals but an entire neurotype.
This approach is not just harmful; it’s dehumanising. It reduces us to a set of traits to be eliminated, ignoring the rich lives, unique perspectives, and valuable contributions of autistic individuals. The focus on prevention also diverts resources and attention from critical support services and accommodations that could improve the lives of existing autistic individuals (like the over 80% unemployment rate of autistics who want to and can work).
Moreover, the prevention narrative reinforces harmful stereotypes and stigma. It perpetuates the idea that autism is inherently negative, feeding into discrimination and social exclusion. This, in turn, creates a self-fulfilling prophecy where autistic individuals face increased challenges not because of their neurology, but because of societal attitudes shaped by this prevention-focused approach.
The implications of this prevention-centric approach extend beyond the autistic community. It sets a dangerous precedent for how society views neurodiversity and disability in general, potentially paving the way for similar “prevention” efforts targeting other forms of cognitive difference. This is not progress; it’s a step backwards into a more intolerant, less diverse world.
Neurodiversity Perspective
The neurodiversity perspective, which views autism as a natural and valuable variation in human cognition, stands in stark contrast to the approach taken by the Act. This perspective recognises the inherent worth and unique contributions of autistic individuals, rather than viewing autism as something terrible that needs to be cured or prevented.
My own journey, which led to writing “No Place for Autism?” in 2023, starkly illustrates the failures of the system that the Act and its predecessors have created. As an autistic teacher and gestalt language processor, I’ve encountered a professional environment wholly unprepared for my existence. The teaching profession, shaped by decades of misguided policies and research priorities, never envisioned that an autistic student might become an educator. This blindspot speaks volumes about the limitations of the current approach to autism.
The Act’s focus on medical model interventions and “prevention” has left the education system woefully ill-equipped to support and accommodate autistic individuals, whether as students or professionals. Allowed accommodations remain rooted in an outdated medical model, failing to consider the PTMF which better encapsulates the autistic experience. This approach perpetuates a cycle of misunderstanding and exclusion, creating barriers where there should be support.
Moreover, the Act does nothing to address the dire unemployment situation faced by autistic individuals. By focusing on research towards early intervention and “prevention,” it neglects the pressing needs of autistic adults struggling to find their place in a workforce that often fails to recognise their strengths or accommodate their needs.
Perhaps most frustratingly, the Act fails to address the ‘comorbidities’ that many autistic individuals would like to see explored. Conditions like alexithymia, which profoundly impact the lives of many autistic people, remain largely unknown or misunderstood by medical professionals. This gap in understanding stems directly from the narrow focus of autism research, which prioritises “prevention” over improving quality of life for existing autistic individuals.
The neurodiversity perspective offers a radically different approach. It calls for a shift from trying to “fix” autistic individuals to creating a society that values and accommodates neurological differences. This would mean moving away from the Act’s emphasis on early intervention and genetic research, and towards initiatives that support autistic individuals throughout their lives. It would involve educating professionals across all sectors about neurodiversity, creating truly inclusive workplaces, and researching ways to improve quality of life for autistic individuals rather than ways to prevent their existence.
Adopting a neurodiversity perspective would also mean acknowledging the vast diversity within the autism spectrum. It would recognise that supports need to be individualised, not based on arbitrary “levels” of autism, but on each person’s unique strengths and challenges. This approach aligns with the PTMF, considering the social and environmental factors that impact autistic individuals’ wellbeing, rather than viewing autism solely through a medical lens.
In essence, the neurodiversity perspective calls for a complete overhaul of how we approach autism - in research, education, employment, and society at large. It’s a vision that stands in direct opposition to the Autism CARES Act’s approach, offering a path towards true understanding, acceptance, and support for autistic individuals.
On the Personal Side
As an autistic gestalt language processor, my journey through the education system and into the teaching profession has been fraught with misunderstanding and barriers. The Act, like its predecessors, fails to even acknowledge the existence of individuals like myself, let alone provide meaningful support.
My colleagues, all products of a system shaped by legislation like this Act, had never heard of gestalt processors or the Natural Language Acquisition paradigm. This ignorance isn’t merely an academic oversight; it’s a reflection of a deeply entrenched bias towards what’s considered “standard” language development. The system is geared exclusively towards Analytic Language Processors (ALP), leaving those of us who process language holistically to struggle in silence.
The irony is palpable. Western societies, including the United States, continually grapple with literacy issues in their populations. Their response? To double down on the so-called ‘science of reading’ - an approach that works well for ALPs but completely ignores the existence of GLPs like myself. They then scratch their heads, wondering why their efforts fail to yield universal results.
This systemic blindness to neurodiversity in language processing led me to write “Holistic Language Instruction” earlier this year. It’s a desperate attempt to fill a gap that shouldn’t exist, to provide a lifeline to countless individuals who, like me, have been left behind by a one-size-fits-all approach to language and literacy.
The Autism CARES Act of 2024, with its focus on early intervention and “prevention,” does nothing to address these critical issues. Instead, it perpetuates a system that fails to recognise the rich diversity of autistic cognition and communication. For individuals like myself, the Act’s impact is one of continued invisibility and lack of support.
The Act’s emphasis on research into “causes” and “prevention” diverts resources from developing understanding and support for the myriad ways autistic individuals process and express language. It reinforces the notion that there’s only one “correct” way to communicate, further marginalising those of us who don’t fit that mold.
Moreover, the Act’s approach does nothing to prepare educators, employers, or society at large for the existence of autistic individuals with diverse language processing and communication styles. It leaves us to navigate a world that’s not designed for us, with little to no support or understanding.
In essence, the Autism CARES Act of 2024, despite its name, fails to care for the full spectrum of autistic individuals. It leaves those of us who don’t fit the stereotypical mold of autism to fend for ourselves, struggling against a tide of misunderstanding and lack of accommodation. It’s a stark reminder that true progress in autism support requires a radical shift in perspective - one that embraces neurodiversity in all its forms, including diverse language processing styles.
Intersectionality: Autism and Gender Identity
The intersection of autism and gender identity presents a unique set of challenges that the Act woefully fails to address. As an autistic trans woman, I find myself navigating a complex landscape that the Act’s narrow focus completely overlooks.
Research indicates that neurodivergent individuals are about six times more likely to experience gender dysphoria compared to the neuro-majority (source, source, and source). This striking statistic underscores the critical need for support and understanding at this intersection. Yet, the Act remains silent on this crucial aspect of many autistic individuals’ lives.
The harmful rhetoric surrounding autism and gender nonconformity exacerbates the challenges faced by autistic trans individuals. Misconceptions and stereotypes about both autism and gender identity create a perfect storm of misunderstanding and discrimination. This toxic environment makes it exceptionally difficult for autistic people to explore and express their gender identity safely and confidently.
My own journey of gender identity exploration as an autistic individual was a solitary one, fraught with unique challenges. I came out to myself quietly, then embarked on a year-long process of introspection and preparation. This involved building necessary gestalts to navigate medical visits effectively and establishing support structures for myself. I did all of this alone, without external support or guidance - a testament to the glaring lack of resources for individuals at this intersection.
The Autism CARES Act does nothing to support people like me through this complex and often overwhelming process. It fails to acknowledge the unique needs of autistic individuals exploring their gender identity, let alone provide resources or guidance for this journey.
Whilst I’m fortunate that my local gender clinic is neurodiversity-informed in their care, this exists as an island of understanding within a larger healthcare system that remains woefully unprepared to support autistic trans individuals. The Act’s failure to address this disconnect perpetuates a system where finding appropriate, informed care is a matter of luck rather than a standard of practice.
Moreover, the Act’s silence on this intersection reinforces the harmful notion that autism and gender identity are entirely separate issues. This artificial division ignores the lived experiences of countless individuals who navigate both aspects of their identity simultaneously.
The Act’s focus on early intervention and “prevention” of autism also raises alarming questions about how this might impact autistic individuals exploring their gender identity. Will attempts to “normalise” autistic traits inadvertently suppress gender exploration? Will the focus on making autistic children “fit in” create additional barriers for those who are also grappling with gender dysphoria?
In failing to address these intersections, the Act misses a crucial opportunity to improve the lives of a significant portion of the autistic community. It perpetuates a system that leaves autistic trans individuals to fend for themselves, navigating complex identities without the support and understanding they desperately need.
This oversight is not just a matter of neglect; it’s actively harmful. By ignoring the intersection of autism and gender identity, the Act implicitly endorses a one-dimensional view of autism that fails to capture the full diversity of autistic experiences. It leaves individuals like myself in a precarious position, forced to navigate multiple marginalised identities in a world that barely acknowledges our existence, let alone our unique needs and challenges.
Recommendations for Improvement: A Proper Autism CARES Act of 2024
Whilst certainly not perfect, here’s the start of a revision to the Act. It’s quite simple and meant to spark conversations, not be the final word.
Purpose and Vision
The Autism CARES Act of 2024 strives to create a society that values, respects, and supports autistic individuals throughout their lives. Recognising autism as a natural variation of human neurodiversity, the Act prioritises the empowerment and well-being of autistic people, their families, and communities.
Holistic Research and Services
The Act mandates the National Institutes of Health (NIH) to conduct comprehensive research encompassing the full spectrum of autism, addressing diverse cognitive, communicative, behavioural, and adaptive functions. This research aims to understand the socio-environmental factors and co-occurring conditions (e.g., ADHD, mental health issues) impacting autistic individuals. Importantly, research should enhance the quality of life rather than aim to prevent autism itself.
Community and Lifespan Support
Funding is allocated to expand services that support autistic individuals across their lifespan. This includes early diagnosis programs, educational and vocational training, and community-based support programs. The Act ensures these services are accessible, person-centred, and designed in collaboration with autistic individuals and their families.
Training and Awareness
The Act supports extensive training programs for healthcare providers, educators, and service professionals to understand and address the unique needs of autistic individuals. This includes promoting neurodiversity and reducing stigma, ensuring that professionals are equipped to offer compassionate and effective support.
Empowerment and Inclusion
Autistic individuals and their families are central to the development and implementation of policies and services. The Act mandates the inclusion of autistic voices in decision-making processes, ensuring that their experiences and insights shape supportive programs.
Ethical Research and Practice
All research and programs funded by the Act must adhere to ethical standards that respect the autonomy and dignity of autistic individuals. This includes a commitment to transparency, informed consent, and prioritising the well-being of participants.
Addressing Systemic Issues
The Act acknowledges and aims to address systemic barriers that autistic individuals face, such as discrimination, lack of access to services, and socio-economic challenges. It promotes policies that foster social inclusion, economic opportunities, and legal protections for autistic individuals.
Final Thoughts …
The Autism CARES Act of 2024, as it stands, falls short of truly supporting the autistic community. However, the vision outlined in my proposed revision offers a beacon of hope for a more inclusive and supportive future. This reimagined Act, grounded in the PTMF, presents a paradigm shift in how we approach autism and support autistic individuals.
By prioritising the empowerment and well-being of autistic people throughout their lives, we can create a society that genuinely values neurodiversity. The proposed holistic research approach, focusing on enhancing quality of life rather than ‘prevention,’ acknowledges the inherent worth of autistic individuals. The emphasis on community and lifespan support recognises that autism is a lifelong way of being, requiring ongoing, adaptable support systems.
Crucially, this vision places autistic voices at the center of decision-making processes, ensuring that policies and services are shaped by lived experiences. It addresses the systemic barriers and intersectional challenges faced by autistic individuals, including those related to gender identity and language processing differences.
As an autistic adult, I find solace and hope in this reimagined Act. It promises a future where my autistic friends, family members, and I are not just accepted but celebrated for our unique perspectives and contributions. It envisions a world where support is readily available, tailored to our needs, and respectful of our autonomy.
Whilst the current Act may fall far short, this alternative vision shows what’s possible when we truly center the needs and experiences of autistic individuals. It’s a reminder that we have the power to shape legislation that genuinely cares for and supports the autistic community. As we move forward, let’s advocate for this more inclusive, empowering approach – one that recognises the value of every autistic individual and works tirelessly to create a world where we can all thrive.