The Autism CARES Act Still Seeks to “Combat” Autism

The Autism CARES Act needs to change its priorities to meet the needs of the autistic community. (This infographic is a TLDR version, or a condensed visual of the following research about the Autism CARES Act).

The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (also known as the Combating Autism Reauthorization Act) provides the majority of funding that goes into autism research, services, and support activities in the United States. The Autism CARES Act, which provides $260 million of funding for autism, will expire on September 30, 2019 if Congress does not renew it. The Autism CARES Act has strong bipartisan support, but has division over the very people is it intended to serve; the autistic community. While Autism Speaks, which is considered a hate group by the autistic community, has lobbied for the Autism CARES Act, other autism advocacy groups such as the Autistic Self Advocacy Network (ASAN) do not agree that the current legislation provides adequate funding for advancing quality of life for autistic people. While the name of the legislation has changed at the request of autistic people who took offense at the notion that autism must be “combated,” the goals of the legislation has not changed to reflect the name change, which include funding for cure and treatment research, and early interventions such as Applied Behavioral Analysis that attempt to “fix” autistic people. In 2010, the National Institutes of Health (NIH) who provides the majority of federal funds for autism, spent only 2.4% of its research funding towards services-related research, and only 1.5% towards research on the needs of autistic adults. If the Trump Administration decides to renew the Autism CARES Act in 2019, to reflect current knowledge about autism and neurodiversity, funding for access to autism-related services should take priority over funding for research focused on causes, treatment, and prevention of autism.

Social Needs of the Autistic Community

The needs of the autistic community are being ignored in lieu of the trope that autism is a deficit that must be corrected or “combated,” rather than a condition that can be supported and accommodated. This is a damaging belief that has led to parents of autistic children attempting to find “cures” for their autism, ranging from supplements, to chelation, to bleach and other toxic chemicals. And this very belief still persists in our legislation, that has not involved consultation with autistic individuals nor with autistic advocacy groups such as the Autistic Self Advocacy Network. Nearly one billion dollars every renewal period for the legislation has gone not towards the needs of autistic people, but towards research that seeks to find risk factors, treatments, and cures for autism via the National Institutes of Health. Meanwhile in America, nonverbal autistic people are denied their right to communicate through an AAC device, autistic people struggle to complete high school and college due to not receiving the support that they need, autistic adults are denied vocational and employment opportunities, and autistic people in America who cannot live independently have to sometimes wait up to a decade to secure a spot at a residential care facility.

Social barriers that autistic people experience include accessible healthcare, and a lack of housing and living options. Autistic children and adolescents had medical expenses that were $4,110-6,200 more per year than children and adolescents without an autism diagnosis, and medical expenses are on average 4.1-6.2 times greater for autistic children and adolescents than neurotypical children and adolescents (Centers for Disease Control and Prevention).

Finding housing options after high school is an issue for autistic adults. Only one in five autistic young adults ever lived independently between high school and their early twenties (Roux, et al. 2015, 15), and only 19% of young autistic adults lived independently after high school, compared with over 60% of the general population (Roux, et al. 2015, 15). Robertson, a researcher who is autistic himself, reported that several studies in academic literature have suggested that a large proportion of autistic people live with their parents or institutions or developmental centers rather than in apartments, community homes, and community living facilities (Robertson, 2010, n.p.). This statistic includes myself as well, as I am an autistic adult and live at home at an apartment with my parents. More than 80,000 autistic adults are on waiting lists for residential facilities, and they may have to wait as long as eight to ten years to secure a spot at a residential home (Glazer, 2014, 652). Residence at a facility is not cheap; due to the scarcity of facilities available, it costs $88,000 for an autistic person or other related disabilities to live at a residential facility, in comparison with $50,300 for neurotypical individuals without a disability (Glazer, 2014, 652).

Securing meaningful employment is another barrier for autistic adults. Up to 75% of autistic adults are unemployed compared to the national unemployment rate of only 4.5%, and autistic people without an intellectual disability still often have trouble finding work due to difficulties with social interaction and communication (Glazer, 2014, 652). Four in every ten young autistic adults never worked for pay between high school and their early twenties (Roux, et al. 2015, 15), and those who did work tended to work in part-time, low-wage jobs (Roux, et al. 2015, 15).

Higher education is another barrier for autistic adults. More than half of autistic adults do not attend college after high school (Gillespie-Lynch, et al., 2017, n.p.). 68% of autistic high school students not apply for college, are not accepted into university institutions, or end up dropping out and not finishing their degree programs (Glennon, 2001, 183). The National Autism Indicators Report surveyed more than 11,000 families, and concluded that approximately 28% of all transition-age adults nationwide are not receiving services at all after high school (Roux A. M., 2015, p. 28).  Under the U.S. Individuals with Disabilities Education Act, or IDEA, a free and appropriate education is a right for people with disabilities from kindergarten through the twelfth grade (Bublitz, 2015, 10). Schools will develop plans for students with disabilities plans called Individualized Education Plans, or IEPs, that will enable and accommodate these students in the classroom to help them learn and succeed, such as modifications in the curriculum, environment, or testing (Bublitz, 2015, 10). But after these students graduate, there is no IEP, and people with disabilities must be self-advocates, which for autistic students who are non-verbal or have limited communication, can be difficult task to undertake, especially without high school and college programs to help them make the adjustment to adult life.

 Communication accessibility is also a barrier for autistic people who are nonverbal or who have limited verbal capabilities. Nonverbal or semi-verbal autistic people could benefit from having access to augmentative and alternative communication (AAC) devices, letterboards, iPads, sign language interpreters, and picture or symbolic communication systems (Robertson, 2010, n.p.). Academic studies have shown support for AAC in helping to improve the quality of life for autistic people by helping them gain self-determination, which can help in self-advocacy, and helping to increase employment opportunities (Robertson, 2010, n.p.). Unfortunately, AAC systems can be expensive and inaccessible to autistic people, and even if it is a necessary method of communication, they are not always covered by insurance companies (Robertson, 2010, n.p.).

Combating Autism Act (2006)

Out of public concern for what appeared to be the “rise” of autism and to investigate research into possible autism causes and interventions, the Combating Autism Act of 2006 was signed into law by President George Bush, who stated that he was “Proud to sign this bill into law and confident that it will serve as an important foundation for our nation’s efforts to find a cure for autism” (White House Archives, 2006, n.p.). The supposed “rise” in autism is more attributed to improved diagnostic methods and screening of autistic people rather than an actual increase of autistic people, but this misconception unfortunately still persists today.

The Combating Autism Act increased the National Institutes of Health (NIH) funding for autism-related research by over 80% from $56 million in FY 2001 to $101 million in FY 2007 (White House Archives, 2006, n.p.). The budget also included $15 million for the Centers for Disease Control and Prevention (CDC) for autism surveillance and research, including funding for the Centers of Excellence for Autism and Developmental Disabilities Research and Epidemiology (White House Archives, 2006, n.p.).

The Combating Autism Act required the Secretary of the Health and Human Services, acting through the Director of National Institutes of Health to “Establish and evaluate activities to: (1) inform and educate on such disabilities to increase awareness of developmental milestones; (2) promote research into the development and validation of reliable screening tools for such disabilities; (3) promote early screening of individuals at higher risk for such disabilities; and (4) increase the number of individuals who are able to confirm or rule out a diagnosis of such a disability and provide evidence-based interventions for individuals diagnosed with such disabilities.” (Congressional Research Service, 2012, 2.). Between the fiscal years 2008-2012, the National Institutes of Health (NIH) donated $960 million of the $1.2 billion that had been awarded for autism research funds. Other agencies that funded autism research include the Centers for Disease Control and Prevention ($77.3 million between 2008-12), and the Department of Education ($48.7 million between 2008-12) (Congressional Research Service, 2012, 2).

The goals of the Combating Autism Act of 2006 were to increase public awareness of autism, improve the ability of health care providers to use evidence-based intervention (which refers to Applied Behavioral Analysis, a controversial strict compliance based early intervention for autistic people), and increase early screening for autism (Congressional Research Service, 2012, 2.). The CDC partnered with Autism Speaks to complete statistics on the global prevalence of autism, with their partnership being called the International Autism Epidemiology Network. The CDC with its partnership with Autism Speaks also started the fearmongering, “Learn the signs. Act Early” campaign, which promoted Applied Behavioral Analysis services as early as an autistic person is diagnosed with autism.

Combating Autism Reauthorization Act (2011)

On September 30, 2011, President Obama signed the Combating Autism Reauthorization Act (CARA) of 2011 into law, which extended the funding for programs of the Combating Autism Act for an additional three years at the current (fiscal year 2011) funding levels (Library of Congress, 2011, n.p.). It continued to prioritize the goals of autism treatment and cure research, and early identification of autism (12). The Combating Autism Reauthorization Act of 2011 amended the Public Health Service Act to reauthorize through 2014: (1) the surveillance and research program for autism and other developmental disabilities; (2) the education, early detection, and intervention program for autism and other developmental disabilities; and (3) the Interagency Autism Coordinating Committee (Congressional Research Service, 2012, 12.).

The Act authorized $693 million over the 2012-2014 period for autism and developmental disabilities research, screening, treatment and education (Association of Universities Centers on Disability, 2011, 1). Of the $693 million, $158 million went into funding for investigations into causation, diagnosis, early detection, prevention, control, intervention, and cure for autism (Association of Universities Centers on Disability, 2011, 1). The funding supported clinical research in the fields of developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology, psychopharmacology or toxicology (Association of Universities Centers on Disability, 2011, 1). $483 million went into the Autism Center of Excellence program within the National Institutes of Health (Association of Universities Centers on Disabilities, 2011, 2). $66 million also went to the CDC to promote research to determine evidence-based practice for diagnosis and interventions for individuals with autism and other developmental disabilities (Association of Universities Centers on Disability, 2011, 2). The Secretary of Health and Human Services and the Secretary of Education were authorized to collaborate to provide collection, storage, and coordination of screening tools, educational materials, and other products used by federal programs, for a total of $144 million from 2012 to 2014 (Association of Universities Centers on Disability, 2011, 2). Lastly, the Secretary of Health and Human Services was required to promote research into tools for shortening the time required to confirm or rule out a diagnosis of autism or other developmental disabilities, as well as develop guidelines for interventions, and was authorized $52 million per year from 2011 to 2014 for this research (Association of Universities Centers on Disability, 2011, 2).

Autism CARES Act (2014)

The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014, or the Autism CARES Act of 2014 (otherwise known as the Combating Autism Reauthorization Act of 2014) renamed the law to respect the wishes of autistic advocates, who felt that the original title of the act was stigmatizing and dehumanizing. The Autism CARES Act extended (1) the developmental disabilities surveillance and research program, (2) the autism education, early detection, and early intervention program; and (3) the Interagency Committee through fiscal year 2019 (Library of Congress, 2014, n.p.). The Autism CARES Act required the Secretary of Health and Human Services to designate an official to oversee autism research, services, and support activities, and direct the official to implement such activities (Library of Congress, 2014, n.p.).

According to the Congressional Budget Office, the Autism CARES Act reauthorized funding at $260 million per year, or $1.3 billion over the five-year period, or from 2015-2019 (Association of University Centers on Disabilities, 2014, n.p.). Of the $1.3 billion, $190 million annually, or $950 million over five years was allotted for research grants at the National Institutes of Health (NIH) and the operations of the Interagency Autism Coordinating Committee (IACC) (Association of University Centers on Disabilities, 2014, n.p.). $48 million annually, or $240 million over five years went to Health Resources and Services for autism education, early detection, and early intervention (Association of University Centers on Disabilities, 2014, n.p.). $22 million annually, or $90 million over five years went to the CDC for developmental disabilities surveillance and research (Association of University Centers on Disabilities, 2014, n.p.). The Autism CARES Act did modify requirements for reports by the Secretary of Health and Human Services for a report to Congress concerning young adults diagnosed with autism and the challenges related to the transition from K-12 to services available during adulthood, which is the first time in which services for autistic adults has been explicitly outlined in autism legislation.

   Proposed Improvements to the Autism CARES Act in 2019

While Congress is now required to report on transitional services for autistic adults under the Autism CARES Act, the budget for the Autism CARES Act does not yet reflect a priority for transitional services. A proposed amendment to the Autism CARES Act introduced by Rep. Jan Schakowsky (D-IL) would have included provisions expanding self-advocate representation in autism research, re-balanced autism research to support investments in transitional services and issues that affect autistic adults, but it did not receive a vote in Congress and was withdrawn after its introduction, as Autism Speaks and its allies lobbied against these provisions in favor of funding for cure and treatment research (Autistic Self Advocacy Network, 2014, n.p.). This is just another reason that Autism Speaks is NOT an advocacy group, and works against the needs of autistic people rather than supporting them as the group claims to do.

The Autism CARES Act has taken some steps in the right direction by changing its name from the “Combating Autism Act,” to the Autism Collaboration, Accountability, Research, Education, and Support Act. The name change shows respect towards the autism community and supports autistic advocates who do not want to be combated, and have used the hashtag #StopCombatingMe on Twitter to protest the original name (Autistic Self Advocacy Network, 2014, n.p.). However, through the extensive evolution of the Combating Autism Act, funding still is focused almost entirely on medical research due to the majority of federal funding coming from the National Institutes of Health (NIH). Even if as little as 25% of the $950 million that is now going towards research grants at the National Institutes of Health were being directed towards agencies that address real life concerns of autistic adults, such as access to augmentative and alternative communication (AAC) devices for nonverbal autistic people, employment and education options after high school, and affordable healthcare and housing options, autistic people may be able to better thrive. Some examples of agencies that have existing means to fund such research include the National Institute on Disability and Rehabilitation Research (NIDRR) and the Projects of National Significance (PNS) program within the Administration on Intellectual and Developmental Disabilities (AIDD) (Autistic Advocacy Network, 2014, n.p.). Or, the National Institutes of Health could simply dedicate a portion of their autism research funding towards transitional services to help autistic adults.

On February 7, 2019, the Autism CARES Act of 2019 (HR 1058) was introduced in the House of Representatives. The bill has a $1 billion-dollar budget, and is sponsored by Republican Chris Smith (R) of New Jersey and Mike Doyle (D) of Pennsylvania (Carino, 2019, n.p.). On February 8, 2019, the bill was introduced in the Senate by Robert Menendez (D), and Mike Enzi (R). The bill proposal includes an extra $368 million over the current funding level to renew the law for the next five years (Diament, 2019, n.p.).

The new bill seeks to authorize research under the National Institutes of Health to address the entire scope of autism, designate regional centers of excellence for autism research and epidemiology, increase funding to $23.1 million for the CDC for developmental disability and surveillance research, increase funding to $50.6 million to the Health Resources and Services Administration for education, early detection and intervention, and require the Department of Health and Human Services to provide a report to Congress on the health and well being of autistic individuals of all ages (Carino, 2019, n.p.). The new proposed legislation will also require the Health Resources and Services Administration to issue grants for developmental behavioral pediatricians in under-served rural communities (Diament, 2019, n.p.). The new act will add the phrase “across the lifespan” to several provisions, to emphasize the needs of autistic people of all ages, including adults (Diament, 2019, n.p.). Chris Smith (R) who introduced the House version of the bill stated that, “Our new legislation will reauthorize vital federal research on earlier interventions for children with autism and expands funding for critical research, education, housing and other programs that assist the countless children and adults on the spectrum, and their families,” (Diament, 2019, n.p.).

There needs to be more done to meet the needs of autistic adults in the areas of healthcare, employment, education, and accessibility among other needs, yet not a dime will go to any of these nor are there autistic people be involved in writing the legislation. The phrase, “Nothing about us without us” applies here, and we need more representation and more funding towards our actual needs, and involving autistic people and reforming the Autism CARES Act would be the best solution to help autistic people of all ages.

References

  “ASAN Statement on Autism CARES Act,” Autistic Self Advocacy Network. June 10, 2014, http://autisticadvocacy.org/2014/06/asan-statement-on-autism-cares-act/.
     
   “Autism CARES Act Summary.” 2014. AUCD – Autism CARES Act Summary. Association of University Centers on Disabilities. August 11, 2014. https://www.aucd.org//template/news.cfm?news_id=10356&id=17.

    Bublitz, Dennis & Wong, Vincent & Donachie, Annemarie & Brooks, Patricia & Gillespie-Lynch, Kristen. (2015). “Applying Universal Design to Build Supports for College Students with Autism Spectrum Disorder.” Research Gate. College of Staten Island, CUNY.  https://www.researchgate.net/publication/274007887_Applying_universal_design_to_build_supports_for_college_students_with_autism_spectrum_disorder.

    Carino, Jerry. 2019. “$1B Autism Bill Would Bolster Support for Those Who ‘Age out’.” Asbury Park Press. Asbury Park Press. February 9, 2019. https://www.app.com/story/news/health/2019/02/08/autism-funding/2810292002/.

      Centers for Disease Control and Prevention (CDC), “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010,” Morbidity and Mortality Weekly Report, March 28, 2014, pp. 1–21, http://tinyurl.com/plquwca.

   “Combating Autism Reauthorization Act (P.L. 112-32).” Association of University Centers on Disabilities. December 5, 2011. https://www.govinfo.gov/content/pkg/PLAW-112publ32/pdf/PLAW-112publ32.pdf.

   Diament, Michelle. “Congress Considers Renewal of Autism Act.” Disability Scoop. February 11, 2019. Accessed March 05, 2019. https://www.disabilityscoop.com/2019/02/11/congress-renewal-autism-act/26019/.

   “Fact Sheet: Combating Autism Act of 2006 .” 2006. National Archives and Records Administration. National Archives and Records Administration. December 19, 2006. https://georgewbush-whitehouse.archives.gov/news/releases/2006/12/20061219-3.html.

     Gillespie-Lynch, Kristen, Bublitz, Dennis, Donachie, Annemarie, Wong, Vincent, Brook, Patricia J., D’Onofrio Joanne (2017). “For a Long Time, Our Voices have been Hushed: Using Student Perspectives to Develop Supports for Neurodiverse College Students.” Frontiers in Psychology. Vol 8. Retrieved from https://www.frontiersin.org/article/10.3389/fpsyg.2017.00544 DOI=10.3389/fpsyg.2017.00544.

      Glazer, Sarah. “Understanding Autism.” CQ Researcher 24, no. 28 (August 1, 2014): 649-72. http://library.cqpress.com/cqresearcher/cqresrre2014080100

   Glennon, T. J. (2001). “The Stress of the University Experience for Students with Asperger Syndrome.” Work, 17(3), 183-190.

  Goering, Sara. “Rethinking Disability: The Social Model of Disability and Chronic Disease.” Current reviews in Musculoskeletal Medicine vol. 8,2 (2015): 134-8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4596173/pdf/12178_2015_Article_9273.pdf

     “Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006 – FY 2009).”
Roux, A.M. (2015). National Indicators Report: Transition into Young Adulthood. Philadelphia : A.J. Drexel Autism Institute.

     Roux, Anne M, Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy A. (2015). “National Autism Indicators Report: Transition into Young Adulthood.” Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University. https://drexel.edu/~/media/Files/autismoutcomes/publications/National%20Autism%20Indicators%20Report%20-%20July%202015.ashx.

   “S.843 – 109th Congress (2005-2006): Combating Autism Act of 2006.” Congress.gov. Library of Congress. December 19, 2006. https://www.congress.gov/bill/109th-congress/senate-bill/843.

“S.1094 – 112th Congress (2011-2012): Combating Autism Reauthorization Act.” Congress.gov. Library of Congress. September 12, 2011. https://www.congress.gov/bill/112th-congress/senate-bill/1094.  

  “S.2449 – 113th Congress (2013-2014): Autism Collaboration, Accountability, Research, Education, and Support Act of 2014.” Congress.gov. Library of Congress. June 26, 2014. https://www.congress.gov/bill/113th-congress/senate-bill/2449.

 “The Combating Autism Act: Overview and Funding.” Congressional Research Service Report for Congress. Analyst in Public Health and Epidemiology. December 27, 2012. https://www.everycrsreport.com/files/20121227_R42369_c9f6f9ac27a216e6ca1b3edc22e650f7ab4f8cd4.pdf.

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