Amplifying Autistic Voices: A Call to Action for Equitable Autism CARES Act Funding

In our week-long examination of the Autism CARES Act, we’ve shed light on critical issues facing the autistic community. From the pressing need for stable, supportive housing to the persistent challenges in securing meaningful employment, and the often-overlooked importance of social and emotional wellbeing, it’s clear that current research priorities are misaligned with the lived experiences of autistic individuals. The stark disparity in funding allocation, favouring biological and genetic studies over practical, life-improving research, underscores a systemic failure to address the most urgent needs of our community. This misalignment not only hinders progress in areas that could significantly enhance quality of life but also perpetuates a narrative that values scientific curiosity over tangible support for autistic individuals. It is imperative, therefore, that autistic voices play a central role in shaping funding decisions. Our perspectives, needs, and experiences must guide the allocation of resources to ensure that research truly serves the autistic community. To that end, today’s article aims to provide practical advocacy strategies, empowering autistic individuals and their allies to effectively champion for change. By offering concrete steps and actionable advice, we hope to catalyse a movement that will reshape the landscape of autism research funding, ensuring it aligns with the real-world needs of autistic people across the lifespan.

Understanding the System As It Is, Not As We Wish It To Be

Understanding the intricate system of government research funding is crucial for effective advocacy. Currently, the majority of funds allocated under the Autism CARES Act are distributed through grants, a process that is far more complex than it might initially appear. Grant writing has evolved into a sophisticated art form, backed by a billion-dollar industry offering workshops, technical assistance, and specialised software. This landscape can be daunting for smaller organisations and individual researchers, particularly those from the autistic community. However, non-profit entities like Grant Station and TechSoup have emerged to level the playing field, providing valuable resources and training to help smaller non-profits navigate this complex terrain (disclaimer, my non-profit is a paying member of both).

A critical, often overlooked aspect of the current funding system is the role of ‘artificial intelligence’ in the initial screening of grant applications. These algorithms act as the first gatekeepers, filtering proposals based on specific criteria and language patterns. This technological hurdle adds another layer of complexity to the process, potentially disadvantaging applicants who may have valuable ideas but lack the resources to optimise their proposals for AI screening. Specialised software exists to help refine applications, increasing the chances of passing this technological gauntlet, but access to such tools is often limited by financial constraints.

Key stakeholders in this process include government agencies like the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), However, it's important to recognise that the influence of these stakeholders extends beyond mere funding allocation. A significant trend in government funding is the preference for single-source distribution, where large organisations receive substantial grants with the expectation that they will then manage the redistribution to smaller, more local groups. This approach, whilst potentially streamlining administration for the government, creates an additional layer of gatekeeping and may further distance funding decisions from the autistic community. These major stakeholders play a significant role in shaping research priorities and methodologies, often reflecting broader societal biases and interests that may not align with the needs of the autistic community. The consolidation of funding distribution power in the hands of a few large entities risks perpetuating existing biases and potentially overlooking innovative, grassroots initiatives that could directly benefit autistic individuals.

The funding landscape for autism research, as illustrated by the IACC’s list of funding opportunities (above graphic), further underscores the narrow network of sources that ultimately shape research priorities. The above list, which includes organisations like Autism Speaks, the Brain & Behavior Research Foundation, and the Organization for Autism Research, represents a select group of influential entities that act as gatekeepers for autism-related funding. Whilst the Autism CARES Act sets broad objectives, it’s these organisations that effectively determine which specific research projects receive support. Their individual missions, biases, and interests significantly influence the types of studies that get funded. For instance, the prominence of foundations focused on brain research and behaviour suggests a continued emphasis on biological and interventional approaches, potentially at the expense of more holistic, quality-of-life oriented studies. The inclusion of CDC's “Learn the Signs. Act Early.” program further reflects a persistent focus on early identification and intervention, which, whilst important, may divert attention from equally critical issues facing autistic adults. This concentration of funding power among a relatively small group of organisations means that their priorities, rather than the diverse needs of the autistic community as articulated in the Act, often set the ultimate agenda for autism research and support initiatives.

It’s crucial to note that these private charities actively monitor social media and other public forums for mentions of their organisations, particularly negative ones. This surveillance has significant implications for autistic self-advocates and researchers who may criticise these organisations’ approaches or priorities. For instance, vocal self-advocates who repeatedly post against Autism Speaks on social media platforms may find their chances of securing funding from streams controlled by that organisation severely limited. This dynamic creates a chilling effect on open discourse and critique within the autism community. Moreover, there is considerable overlap between the boards and senior staff of many of these funding bodies. This interconnectedness raises concerns about the potential existence of informal blacklists, where individuals or groups who have criticised one organisation may find themselves shut out of funding opportunities across multiple sources. Such a system, if it exists, would further concentrate power and limit the diversity of voices and perspectives in autism research and advocacy.

Whilst official channels for public input into funding decisions in such a system are limited, there are avenues for influence that savvy advocates have successfully leveraged. One such approach involves engaging with local congressional office staff. These individuals can provide invaluable assistance in navigating the system and even influencing policy decisions. The origin story of the first ‘autism bill’ serves as a potent example of this strategy's potential. It reportedly began with a group of ‘affected parents’ presenting a detailed action plan to Representative Chris Smith of New Jersey. Their approach, combining grassroots advocacy with strategic engagement (and likely some campaign contributions), proved effective in spurring legislative action.

Understanding these systemic intricacies is the first step towards effective advocacy. By recognising the challenges and opportunities within the current funding landscape, autistic individuals and their allies can better position themselves to influence decisions and ensure that research priorities align more closely with the actual needs of the autistic community.

Individual Advocacy Strategies

Empowering individual advocacy is crucial in reshaping the landscape of autism research funding. As demonstrated by this series of articles, educating oneself on the Autism CARES Act and current research priorities is not only personally enlightening but also serves as a powerful tool for community education. By sharing this knowledge, we create a more informed and engaged autistic community, better equipped to advocate for its needs.

Contacting local representatives and senators remains a fundamental strategy in influencing policy decisions. Regular engagement with these officials, through letters, emails, phone calls, and in-person meetings, helps keep autism-related issues on their radar. It’s important to approach these interactions with well-researched, concise arguments and clear calls to action. Personal experiences can be particularly impactful in these communications, putting a human face on policy decisions.

Participating in public comment periods, whether for proposed legislation or research priorities, is another vital avenue for individual advocacy. These formal channels provide direct input into the decision-making process, and whilst they may sometimes feel like shouting into the void, consistent, well-articulated comments can influence outcomes. (Note: I was a founding and two-term member of the Organization of Scientific Area Committees on Forensic Science (OSAC) in my previous career, a US federal government agency tasked with creating consensus standards for forensic science in the US and beyond. When we would put a proposed standard out to the public for comment, each comment had to be addressed and resolved. The composition of the OSAC’s committees originally included about 30% members of the public by policy.)

Sharing personal stories and experiences, both with policymakers and the broader public, is a powerful way to humanise the issues facing the autistic community. These narratives can challenge stereotypes, highlight unmet needs, and illustrate the real-world impact of funding decisions. Feel free to share my articles if it helps.

Social media has become an indispensable tool for raising awareness and mobilising support. Platforms like TikTok, X, Facebook, LinkedIn, and Instagram allow advocates to reach wide audiences, connect with like-minded individuals, and directly engage with decision-makers. However, it’s crucial to use these platforms strategically, balancing personal experiences with factual information and calls to action.

The founding of the Praeceptory at Towcester Abbey is a testament to the potential impact of sustained individual advocacy efforts. Such initiatives, born from personal commitment and community need, can grow into significant forces for change, providing services and advocacy that larger, more established organisations might overlook.

Collective Advocacy Strategies

Collective advocacy strategies are essential in amplifying autistic voices and effecting meaningful change in autism research funding. Forming or joining autistic-led advocacy groups provides a unified platform for sharing resources, experiences, and strategies. These groups can range from local meetups to national organisations, each playing a vital role in the broader advocacy landscape. The power of collective action cannot be overstated, as it allows for a more diverse range of skills and experiences to be brought to bear on complex issues.

Organising letter-writing campaigns remains an effective tool for influencing policymakers and funding bodies. However, it’s crucial to approach this strategy with caution, particularly when utilising AI tools like language models to assist in drafting. These models, including ChatGPT, often have inherent biases towards medical model perspectives and may draw heavily from sources like Autism Speaks, which many in the autistic community criticise for their approach. Advocates should be vigilant in reviewing and personalising any AI-generated content to ensure it accurately reflects autistic perspectives and experiences.

Creating and circulating petitions can be an effective way to demonstrate widespread support for specific changes or initiatives. Online platforms have made this process more accessible, but the impact often depends on strategic targeting and follow-through with decision-makers.

Coordinating with allies in the research and medical communities can provide valuable insider perspectives and lend credibility to advocacy efforts. However, it’s essential to ensure that these alliances don’t inadvertently reinforce harmful paradigms or overshadow autistic voices.

Leveraging existing autism organisations to amplify autistic voices is a delicate balance. While these organisations often have established channels of influence, they may also have entrenched perspectives that don’t align with autistic-led advocacy. It’s important to engage critically with these organisations, pushing for meaningful inclusion of autistic perspectives in their leadership and decision-making processes.

In all these collective efforts, maintaining a focus on autistic leadership and lived experience is paramount. The goal should be to create a chorus of diverse autistic voices that can't be ignored, challenging the status quo and pushing for research priorities that truly reflect the needs and desires of the autistic community.

Engaging with Research Institutions

Engaging with research institutions is a critical component of reshaping autism research priorities and methodologies. Advocating for autistic representation on research ethics boards is paramount, as it ensures that ethical considerations are informed by lived experiences. This representation can help prevent potentially harmful or misguided research practices and ensure that studies are designed with genuine respect for autistic participants.

Promoting participatory action research models is another crucial strategy. These models involve autistic individuals not just as subjects, but as active collaborators throughout the research process, from design to dissemination. My experience working with the Interactive Autism Network (IAN) for subject recruitment during my doctoral dissertation highlights both the potential and limitations of such networks. Whilst IAN provided a valuable platform for research participation, it’s important to note that such networks often struggle to engage marginalised groups within the autism community, potentially skewing research outcomes.

The recent closure of IAN and its suggestion to connect with SPARK for Autism reflects a broader trend towards consolidation in autism research networks. This consolidation, mirroring the government’s preference for working with large, centralised agencies, raises concerns about diversity of perspectives and accessibility. SPARK’s mixed reputation within the autism community underscores the need for critical engagement with these large-scale research initiatives.

Encouraging institutions to prioritise research that aligns with autistic-identified needs is perhaps the most fundamental shift required (e.g., SPARK does not seem interested in housing issues). This involves challenging the traditional research agenda, which has often focused on causation and ‘treatment’ at the expense of quality-of-life issues that autistic individuals themselves prioritise. Advocates can push for research into areas such as employment support, housing solutions, and mental health services tailored to autistic needs.

It’s crucial to address the systemic biases within research institutions that may perpetuate harmful narratives or exclude autistic voices. This includes advocating for changes in grant review processes, pushing for autistic representation in academic positions, and challenging the dominance of neurotypical perspectives in autism research.

Lastly, it's important to promote transparency and accessibility in research findings. Advocates can push for open-access publication of results and the creation of autistic-friendly summaries of research findings, ensuring that the community can engage with and benefit from the research it participates in.

Here are some notable ‘research organisations’ in the autism research space. I realise that some may not like this list, but I’m trying to be as objective as possible given the funding pathways in the US. As a thought experiment, I asked ChatGPT to generate the descriptions shown below. I left them unedited as the LLM is generally summarising from available documentation, so they’re probably brutally accurate.

1. Autism Speaks:

   • Autism Speaks funds global biomedical research into the causes, prevention, treatments, and a possible cure for autism.

   • Website: Autism Speaks

2. Simons Foundation Autism Research Initiative (SFARI):

   • SFARI supports autism research by providing funding for scientists who are working to uncover the causes of autism spectrum disorders and to develop novel treatments.

   • Website: SFARI

3. Autistica:

   • Based in the UK, Autistica funds research that will improve the lives of autistic people and their families.

   • Website: Autistica

4. Organization for Autism Research (OAR):

   • OAR uses applied science to answer questions that parents, families, individuals with autism, teachers, and caregivers confront daily.

   • Website: OAR

5. National Autism Center:

   • The National Autism Center is dedicated to supporting effective, evidence-based treatment approaches and providing reliable information for families and practitioners.

   • Website: National Autism Center

6. Autism Research Institute (ARI):

   • ARI conducts and sponsors scientific research on the underlying causes of and treatments for autism spectrum disorders.

   • Website: Autism Research Institute

7. MIND Institute at UC Davis:

   • The MIND Institute conducts research on autism and other neurodevelopmental disorders with a focus on prevention, early intervention, and treatment.

   • Website: MIND Institute

8. Emory Autism Center:

   • The Emory Autism Center is involved in research, assessment, and intervention for individuals with autism spectrum disorder (ASD).

   • Website: Emory Autism Center

Policy-Level Advocacy

Policy-level advocacy is crucial for effecting systemic change in autism research funding and priorities. Pushing for autistic representation on the Interagency Autism Coordinating Committee (IACC) is a key objective. Whilst the IACC does include some autistic members, their numbers and influence need to be significantly increased to ensure that autistic perspectives are central to decision-making processes, not merely token additions.

Advocating for changes in how research priorities are set is equally vital. This involves challenging the current top-down approach where priorities are often determined by researchers and funding bodies with limited autistic input. Instead, we should push for a bottom-up model where research agendas are significantly shaped by the expressed needs and priorities of the autistic community.

Proposing amendments to the Autism CARES Act to ensure autistic input is a concrete way to institutionalise these changes. Such amendments could mandate a minimum percentage of autistic representation on decision-making bodies, require community consultation in priority-setting processes, and allocate specific funding for autistic-led research initiatives.

It’s important to recognise that policy-level advocacy requires persistence and strategic thinking. Building coalitions with other disability rights groups, leveraging media attention, and engaging in sustained dialogue with policymakers are all crucial tactics. Additionally, advocating for transparency in the policy-making process and pushing for regular, public reviews of the Act’s implementation can help ensure ongoing accountability.

Ultimately, the goal of policy-level advocacy should be to shift the paradigm of autism research governance, moving from a model where autistic individuals are merely subjects of research to one where they are active participants in shaping the research agenda and policies that affect their lives.

Overcoming Barriers to Advocacy

As an older autistic adult with a Level 2 autism diagnosis and a history of significant language challenges, I’ve experienced firsthand the barriers to effective advocacy. My journey from being what some might call ‘non-verbal’ or, more accurately, a gestalt language processor, to becoming a vocal advocate has been long and complex. It’s this experience that drives my commitment to addressing accessibility issues in the advocacy process.

One of the primary barriers many autistic individuals face is the inaccessibility of traditional advocacy methods. Many advocacy spaces are designed with neurotypical communicators in mind, often relying heavily on verbal communication, social networking, and the ability to process information quickly in high-stimulus environments. To overcome this, we need to create multiple pathways for advocacy that accommodate diverse communication styles and sensory needs.

This is why I’ve chosen to write these long-form articles. They serve as digital gestalts, comprehensive reference materials that not only help me prepare for meetings and assist with my communication but are also freely accessible worldwide. By sharing these now 700+ articles here on the AutSide, I’m providing a resource that other autistic individuals can use to support their own advocacy efforts, regardless of their verbal abilities or geographic location.

Providing support for autistic individuals who want to advocate is crucial. This support can take many forms, from mentorship programmes pairing experienced advocates with newcomers, to creating toolkits that break down complex policy issues into more digestible formats. It’s also important to recognise that advocacy can be emotionally and mentally taxing, especially for autistic individuals who may already be dealing with high levels of stress and anxiety. Establishing support networks and self-care strategies is essential for sustainable advocacy.

Combating stigma and misconceptions about autistic self-advocacy is an ongoing challenge. There’s still a pervasive belief in some quarters that autistic individuals, especially those with higher support needs, can’t effectively advocate for themselves. This couldn’t be further from the truth. My own journey from struggling with functional language to becoming an articulate advocate demonstrates the potential for growth and the importance of presuming competence.

We need to challenge the notion that there’s only one way to advocate effectively. Whether it's through written words, art, technology-assisted communication, or any other method, all forms of autistic self-expression and advocacy are valid and valuable. By showcasing diverse autistic voices and stories, we can help shift public perception and create more inclusive advocacy spaces.

It’s also crucial to address intersectionality in our advocacy efforts. Autistic individuals from marginalised communities often face compounded barriers to advocacy. We need to actively amplify these voices and ensure our advocacy efforts are truly representative of the diverse autistic community.

Remember, these articles aren’t just for me – they’re for all of us. Feel free to share them, use them in your own advocacy efforts, and build upon them. Together, we can create a more accessible, inclusive, and effective advocacy landscape for the entire autistic community.

Measuring Success and Maintaining Momentum

As an autistic advocate, I’ve learned that measuring success and maintaining momentum are crucial for effective, long-term advocacy. Setting concrete goals is essential, but these need to be both ambitious and realistically achievable. I often break down larger objectives into smaller, manageable tasks. For instance, my goal of improving autism research funding isn’t just about changing policy; it includes milestones like increasing autistic representation on review boards or securing a certain number of participatory research projects.

Tracking progress and celebrating small wins is vital for morale. I use free technology to monitor tasks and achievements. These tools allow me to visualise progress, which is particularly helpful for my gestalt processing style. Celebrating these wins, no matter how small, helps combat burnout and keeps the motivation high.

Sustaining long-term advocacy efforts requires community support. I’ve found great value in building communities of care - networks of fellow advocates, allies, and supporters who provide emotional backing, share resources, and offer diverse perspectives. These communities can be local or global, thanks to digital platforms.

Crowdfunding has become an invaluable tool for sustaining advocacy work. Platforms like Patreon or Ko-fi (buy me a coffee) allow supporters to contribute regularly, providing a stable financial base for ongoing efforts. This support, along with paid supporters here, enables me to dedicate more time to advocacy work, produce resources like my Substack articles, and attend important events or conferences.

Remember, advocacy is a marathon, not a sprint. By setting clear goals, tracking progress, celebrating victories, nurturing supportive communities, and securing sustainable funding, we can maintain the momentum needed for long-term change in autism research and policy.

Final thoughts …

As we conclude this exploration of advocacy strategies, it’s clear that effecting change in autism research and funding requires a multifaceted approach. From individual actions like educating ourselves and contacting representatives, to collective efforts such as forming advocacy groups and engaging with research institutions, each strategy plays a crucial role. Policy-level advocacy and overcoming barriers to participation are equally vital in reshaping the landscape.

To my fellow autistic individuals and allies: your voice matters. Whether you communicate through words, art, technology, or any other means, your perspective is invaluable. Don’t let anyone tell you otherwise. Use these strategies, adapt them to your needs, and join the movement to transform autism research and funding.

Imagine a future where autistic voices aren’t just heard, but actively guide research priorities and funding decisions. A future where our lived experiences shape policies, where research truly serves our needs, and where the diversity of autistic experiences is fully recognised and valued. This future is possible, but it requires our collective effort.

Let’s work together to create a world where autism research and funding reflect the real needs and aspirations of autistic individuals. Share these articles, join advocacy efforts, and never underestimate the power of your unique perspective. The change we seek begins with each one of us. Let’s make it happen.