ASAN Comments on the IACC Strategic Plan

These comments were submitted to the Interagency Autism Coordinating Committee (IACC) regarding their strategic plan. Every year the government distributes funds for research on autism. The IACC makes recommendations about where those funds go and what research should be prioritized. The IACC asked for comments on its strategic plan, specifically on the research areas that IACC currently prioritizes — including which ones are most important to our community and need more funding, and which ones our community is concerned about.

Question 1: How Can I Recognize the Signs of ASD, and Why is Early Detection So Important? (Topic: Screening and Diagnosis)

Funding for Question 1 included over $5 million in both 2017 and 2018 for research into the biological indicators of autism. We believe this funding would be better used in addressing the serious diagnostic disparities which persist across racial, ethnic, and gender lines. Funding related to reducing disparities only accounted for approximately 1.6% of total autism research in 2017 ($5.7 million) and 1.4% ($5.7 million) in 2018. 

With regards to racial disparities, additional funding for research is needed to determine whether recent positive trends towards equitable diagnosis for Black children continue, as well as to examine barriers to diagnosis for Latinx communities. Data from the 2016 ADDM report shows that children assigned male at birth continued to be diagnosed with autism at 4.2 times the rate of children assigned female at birth. We recommend that additional research be conducted to better understand how autism presents itself in women and girls, as well as gender diverse autistics.  

Finally, while closing diagnostic disparities in young children is critical, we note that adults continue to struggle to access diagnosis. A focus exclusively on early diagnosis excludes a large contingent of autistic people who were born before modern diagnostic criteria, and disproportionately harms people of color, women, and people from underserved communities. We urge the IACC to expand research on diagnostic tools and access to diagnosis for adults. 

Question 2: What is the Biology Underlying ASD? (Topic: Biology)

There has already been disproportionate funding directed towards this objective, and we believe that this imbalance harms our community. For decades, research has been conducted into the biological causes of autism for the purpose of eliminating autistic people altogether. Out of the IACC Strategic Plan’s research objectives, Question 2 received the biggest allocation of funding in both 2017 ($143.1 million) and 2018 ($163.7 million). We recommend that funding for this question be lowered to a proportionate level, and that the research conducted emphasize priorities identified by autistic people ourselves.

We also support expanded funding for research related to the “biology of co-occurring conditions in ASD.”  Autistic people often experience a myriad of co-occurring conditions, such as sleep disorders, epilepsy, and gastrointestinal and connective tissue disorders, that negatively impact the overall quality of our lives. Going forward, we would like to see research into co-occurring conditions comprise the majority of funding for this question, and a larger percentage of the total funding as compared to 2017 (8%) or 2018 (7%).

Question 3: What Causes ASD, and Can Disabling Aspects of ASD be Prevented or Preempted? (Topic: Risk Factors)

ASAN believes that preventing or “preempting” autism is inherently unethical and an unacceptable use of federal funds.  As stated in the DD Act, disability is a natural part of the human experience. Autistic people have the right to exist as we are. Research into the causation of autism has historically been intertwined with the quest for a “cure,” although a cure is not desired by autistic people ourselves. This quest has led to an industry shilling sham cures for autism, often at great physical harm to autistic children. Rephrasing this question to “prevention or preemption” does not change these underlying ethical realities.   

In 2017, research into the genetic and environmental factors for autism accounted for 22% ($81.1 million) of all funding for ASD research, and 19% ($74.3 million) in 2018.  Nearly all of this funding went to research into the genetic causes of autism. This is an extraordinary amount of money to allocate towards research that not only fails to improve the lives of autistic people, but is actively seen as harmful by many in our community. We believe this money would be better spent on understanding autism across the lifespan, expanding access to services, and  reducing the negative impacts of co-occurring physical and mental health conditions for which autistic people actually desire prevention and treatment. 

Question 4: Which Treatments and Interventions Will Help? (Topic: Treatments and Interventions)

We agree with the overall aspirational goal of Question 4, specifically funding research into services that address the needs of autistic people across our lifespans. However, several aspects of the phrasing used by Question 4 in its primary Objectives limit its usefulness in funding research that improves the lives of autistic people. For example, Question 4’s first Objective is to “develop and improve pharmacological and medical interventions to address both core symptoms and co-occurring conditions in ASD.” While we generally support the use of psychiatric medications to address co-occurring conditions in autistic people as needed, we do not support their use to treat the “core symptoms” of autism. Funding for “the development of psychosocial and naturalistic interventions” made up 45% ($25.6 million) of Question 4 funding in 2017, and 34% ($17.6 million) in 2018. ASAN generally opposes most therapeutic approaches to “fixing” Autism.  

ASAN recommends that the IACC prioritize directing the majority of Question 4 funding toward its Objective 3, which focuses on the ways in which technology can be utilized to support autistic people across the lifespan. Additionally, we encourage the IACC to prioritize research into AAC, including research on the implementation and scaling of effective approaches. We urge the IACC to reconsider its emphasis on “treating” autism as seen in questions 3 and 4, and focus more on Question 5, expanding services and support for quality of life.

Question 5: What Kinds of Services and Supports are Needed to Maximize Quality of Life for People on the Autism Spectrum? (Topic: Services)

Funding for services is crucial for supporting autistic people across the life cycle. ASAN approves of the phrasing and intent of the IACC in Objective 5.3. Funding related to Objective 5.3 comprised 62% ($14.3 million) of all Question 5 funding in 2017, and 61% in 2018 ($14 million). However, only 6% of all autism funding went to Question 5, and nearly half of that very limited funding (44%) went to the “practitioner training” subcategory. Practitioner training is not research into which services and supports work best for the diverse needs of autistic people — research which our community urgently needs. We call on the IACC to end the use of “creative accounting” and only count funding towards genuine research. 

ASAN encourages the IACC to prioritize increased funding for Question 5-related research into which services and supports work best for autistic people with varying ages, demographics, and support needs  

ASAN recommends that more research be focused on what types of services are needed to assist autistic people at all ages – not just children and young adults. ASAN also recommends IACC promoting the involvement of a diverse range of autistic people in autism research studies, especially older people, autistic adults, BIPOC autistic people, non speaking autistic people, and autistic people with intellectual disabilities or complex needs. 

Question 6: How Can We Meet the Needs of People with ASD as They Progress into and through Adulthood? (Topic: Lifespan Issues)

Question 6 is the only question that specifically focuses its research objectives on lifespan related issues.  Unfortunately, Question 6 only accounted for only 3% of all funding for autism research in both 2017 ($9.5 million) and 2018 ($13.3 million).  In total, Question 6 received the smallest total amount of funding amongst the IACC Strategic Plan questions. 

Of the small amount of funding that Question 6 received, 62% of it was allocated towards “research supporting the transition to adulthood.”  While ASAN agrees that the transition into adulthood is a critical period, funding imbalances shortchange other critical lifespan research. Autistic people undergo the same range of life events as non-autistic people and spend the majority of our lives as adults.  Our needs in mid-life, our experiences with marriage and parenthood, and the ways our health and disability might change as we age, all deserve serious consideration, research, and support. 

ASAN recommends that the IACC prioritize the development of longitudinal aging-related studies of autistic people of a wide variety of backgrounds, socioeconomic statuses, genders, and ethnicities, examining how autism manifests over the lifespan, what outcomes and barriers are experienced by autistic adults, and how these things are impacted by race, gender, access to services, and other factors. Many autistic adults were not correctly identified as children, and lifespan research should include this population. 

Question 7: How Do We Continue to Build, Expand, and Enhance the Infrastructure System to Meet the Needs of the ASD Community? (Topic: Infrastructure and Surveillance)

ASAN opposes the IACC’s focus on developing biorepository infrastructure for the purpose of biological autism research.  As seen with the now paused Spectrum 10k study, the autistic community has serious ethical concerns with the creation of biological autism data banks, particularly when such projects lack strong autistic oversight. These types of projects have historically focused on ascertaining the genetic causes of autism in a transparent attempt to prevent more autistic people from being born. Instead of contributing to research that is opposed by the community being studied, we recommend that Question 7 funding be used for research issues that improve our lives. Any data infrastructure or biological data projects supported by federal funds must be developed in partnership with the autistic community and with primary oversight by autistic people ourselves, with explicit aims and clear safeguards to address our community’s ethical concerns and honor our priorities. 

Supplemental Question 1: What are important issues for the IACC to consider with regard to the impact of the COVID-19 pandemic on the autism community?

The next Strategic Plan should request and prioritize funding for research on the impacts of COVID-19 on different kinds of autistic people, including autistic people with co-occurring conditions, of different ages, and with high support needs.  We also recommend research into the effects of Long Covid on autistic people. 

The IACC also needs to research the impact of the pandemic on home and community-based services for autistic people. Over reliance on congregate settings and lack of access to home and community-based services due to COVID have been a largely unreported life-threatening risk to many autistic people. Members of our community have died due to a change or reduction in the services they received, or due to being placed in dangerous congregate settings. Our service system was in danger before the pandemic; COVID has only exposed and heightened these dangers.

Research is also needed on best practices for a full inclusive education when autistic students must continue to receive an education via remote learning. Limited resources existed during the pandemic for autistic people who required paraprofessionals and in-person support services. 

For many of us who already experience difficulties with social interaction, staying inside for the better part of the last two years has created severe social anxiety. The IACC should identify best practices for supporting autistic people with community integration post-pandemic. 

Supplemental Question 2: What are important issues for the IACC to consider with regard to the needs of underserved populations within the autism community, including racial and ethnic minorities, economically disadvantaged communities, and rural populations?

ASAN urges the IACC to conduct a thorough examination in disparities and barriers facing autistic people from underserved communities across the lifespan, as well as best practices for addressing disparities and advancing equity. Areas to examine include access and barriers to diagnosis, from early childhood through older adulthood; access and barriers to services, including AAC and educational, vocational, and home and community-based services; access and barriers to health care, including mental and physical health care; incidence of co-occurring conditions; and outcomes such as educational attainment, employment, community living, criminal legal involvement, health care outcomes, adverse experiences, and quality of life. Particularly attention should be paid to intersecting identities, barriers, and disparities within underserved communities, such as the experiences of autistic transgender people of color, or autistic people from rural communities whose family’s first language is not English. 

ASAN also recommends that the IACC research best practices to ensure that these communities have equitable access to diagnosis and services, including access to culturally competent services and support. The IACC should prioritize research which not only analyzes disparities, but which documents best practices to remove barriers, close disparities, and ensure equitable opportunities, experiences, and outcomes for autistic people from underserved communities.