In 1908 Swiss psychiatrist Eugen Bleuler coined the word “autism” to describe a subgroup of individuals with schizophrenia. Another 35 years went by before, in 1943, Leo Kanner repurposed the term and published his seminal work Autistic Disturbances of Affective Contact where he described a group of children “whose condition differ[ed] so markedly and uniquely from anything [previously] reported.” For decades after the release of Dr. Kanner’s paper, his reusing of the word autism created a great deal of confusion, and many classified the disorder as a subset of schizophrenia. It wasn’t until the release of the third version of Diagnostic and Statistics Manual of Mental Disorders (DSM-III) in 1980 that autism as defined by Dr. Kanner was recognized as a separate diagnostic condition.
In 2000, the Centers for Disease Control began tracking the prevalence of autism in the United States, and in 2006 Congress passed, and President Bush signed into law, the first piece of legislation focused on understanding and treating autism. Since then, the original autism legislation has been reauthorized twice; however, the autism rate continues to climb and there has been little progress towards identifying a cause for a majority of cases. The government needs to hone its approach towards autism research by redefining strategic objectives and ensuring that existing funding is being spent in a way that provides the greatest benefit.
The Changing Diagnosis of Autism
The American Psychiatric Association (APA) released the DSM-V in May 2013, often thought of as the Bible of mental disorders. Each updated version of the DSM contains many changes. These changes range from clarifications to improve procedures for proper diagnoses, to more thorough revisions that broaden who can be diagnosed with a mental disorder.
The DSM-V dramatically changed the criteria for how to diagnose an individual with autism. Previously, under the DSM-IV, autism could be diagnosed as one of four conditions: autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, or a pervasive developmental disorder not otherwise specified. Under the new diagnostic criteria in the DSM-V, the four separate disorders have been merged into one classification referred to as “autism spectrum disorder” (ASD). The new approach highlights deficits in social communication and restricted, repetitive behavior as the hallmarks of an individual with autism. Further, the manual provides guidance to help practitioners assess the severity of a patient’s autism, allowing doctors to more appropriately suggest a proper course of treatment.
Autism Spectrum Disorder and the Federal Government
The decision to reclassify the various autism diagnoses into a single diagnosis brings the APA more in line with public reporting on the condition, where all four conditions have long been referred to as Autism Spectrum Disorders. The Centers for Disease Control and Prevention (CDC) is the primary government body tasked with monitoring the autism rate in the United States. In March, the CDC released updated ASD prevalence statistics, reporting that 1 in 68 children identify as having ASD, a dramatic increase in reported cases. In 2000, the CDC reported the rate to be 1 in 150.
Aware that a growing number of young people are being diagnosed with ASD and that public infrastructure is needed to care for these people when they grow older, in 2006 Congress passed the Combating Autism Act. The 2006 legislation was reauthorized in 2011 as the Combating Autism Reauthorization Act (CARA), and reauthorized again in 2014 as the Autism Collaboration, Accountability, Research, Education and Support Act, or the Autism CARES Act of 2014.
The Combating Autism Act of 2006
President Bush signed The Combating Autism Act on December 19, 2006 after the Senate passed it unanimously. The bill allocated $945 million over five years to fund a laundry list of initiatives. The most notable proposals included:
- Authorize the National Institute of Health to “expand, intensify, and coordinate” research on autism spectrum disorders, with research primarily focusing on identifying a cause, improving diagnoses, and developing new support and intervention systems.
- Facilitate a closer relationship between Autism Centers of Excellence and the Centers for Disease Control to more accurately report ASD prevalence and incidence statistics.
- Reduce the barriers to proper diagnosis by increasing public awareness of the disease, developing more accurate screening tools and growing the number of practitioners certified to provide a diagnosis of ASD.
- Establish the Interagency Autism Coordinating Committee (IACC) to coordinate all ASD initiatives inside the Department of Health and Human Services.
In 2011 the Combating Autism Reauthorization Act (CARA) was signed into law with minor changes, ensuring continued funding until 2014 for programs laid out in the 2006 legislation.
Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (Autism CARES Act of 2014)
This past August, President Obama signed the Autism CARES Act of 2014, which extends the funding outlined in previous legislation to 2019. Although this act is technically a reauthorization of CARA, the name change is notable. Amongst the autism community, the 2006 and 2011 acts were divisive because of the negative connotation placed on being afflicted with the disease. In particular, autistic adults felt that the name of the act promoted the idea that they were a group of people who needed to be “combated”.
The name change is also notable because it signals a fresh start. Despite allocating over $1.7 billion in funding towards fighting autism, researchers have generated few answers. In May, Dr. Thomas Insel, Director of the National Institute for Mental Health (NIMH), told the House Oversight and Government Reform Subcommittee on Government Operations “autism is thought to be caused by a combination of genetic and environmental factors.” And in reference to the increased prevalence, he stated that, “it could be that we are getting better at identifying these children, there could be a growing number of children with ASD and higher intellectual ability, or it may be combination of the two.” After Dr. Insel’s report, Representative Bill Posey (R-Fla.) labeled the Combating Autism Act a failure and called on his colleagues in Congress to rethink the governments approach towards autism before authorizing more funding.
Despite this appeal, the Autism CARES Act includes only minor changes from its predecessors. In addition to the name change, the act places a greater emphasis on adults with autism and calls for proposals to “improve outcomes for adults with autism spectrum disorder making the transition from a school-based support system to adulthood”. However, a majority of the legislation is devoted to administrative changes and clarifying the different responsibilities of government departments and subcommittees.
How Has the Money Been Used?
Since 2006, Congress has worked together three times to allocate significant funding for autism research, no small task in the current political environment. However, Dr. Insel publicly acknowledged that no consensus has been reached on a cause for autism, or for the rapid escalation in cases. This raises questions about how effectively this funding is being allocated. A Government Accountability Office (GAO) report on federal autism activities from November 2013 found 84 percent of federal funded research projects were potentially duplicative, providing more support for this questioning. The report found that “IACC’s and the federal agencies efforts to coordinate and monitor federal autism activities were limited.” The Autism CARES Act orders the Secretary of Health and Human Services to designate a point person to oversee federal autism research, and ensure that research is not unnecessarily duplicative; however, it does not outline how to accomplish this task.
The GAO report also provided more detailed information on how the $1.7 billion dollars in funding was being utilized by different government agencies. From fiscal years 2008-2012, approximately 50 percent of projects initiated focused on the biology or causes of autism, 21.5 percent focused on treatment, 13 percent focused on diagnoses, and the remaining 16 percent of projects were divided up between research into services, lifespan issues, and infrastructure and surveillance.
The Way Forward
With the autism population in the United States estimated to be over 3.5 million, devoting 16 percent of federal funding for autism research to improving the day-to-day lives of this population is not enough.
Even more problematic, the government’s approach to autism research is too scattered. The problem originates with the construction of both the Combating Autism Acts and the Autism CARES Act. In the 2006 legislation the Director of the NIH was asked to oversee ASD research activities in “pathology, developmental neurobiology, genetics, epigenetics, pharmacology, nutrition, immunology, neuroimmunology, neurobehavioral development, endocrinology, gastroenterology, and toxicology.” It would be extremely challenging to conduct research into every field listed. Moving forward, the funding devoted towards autism research could have a bigger impact if the government set more defined goals and objectives, re-allocated funding with a greater emphasis on helping people currently diagnosed with ASD, and had more rigorous oversight of on-going research.
Better Defined Goals and Objectives
The Combating Autism Act of 2006 created the IACC and tasked the committee with creating a strategic plan for ASD research, which would be updated on a yearly basis and presented to the Secretary of Health and Human Services. The 2013 strategic plan contained seven general questions that include 78 strategic objectives. The seven questions are “consumer focused” and are written in a layman format, making the document table of contents accessible to any reader. The problem with this approach is that it is unnecessarily broad, spreading funding thinner than necessary. For example, nine objectives are listed under the “When Should I Be Concerned” question, ranging from funding to identify biologic markers for autism before age 2, to developing a diagnostic tool that is valid in diverse populations for large-scale studies. Instead of focusing on seven questions, the IACC should structure the strategic plan to focus on the four primary areas that require funding: cause, diagnosis, treatment, and care.
By narrowing the strategic plan down to four main sections, the IACC can refocus on the four primary questions it should be trying to answer:
- What are the causes of ASD?
- How can we improve diagnosis of ASD?
- What are the most effective treatments, and how can we create more effective ones?
- What are the best practices for helping people already diagnosed with ASD?
By having a clear question guiding each category the strategic objectives within those categories can be refined, allowing for a strategic plan that directly addresses the issue.
Improved Allocation of Funding
Restructuring the strategic plan around these four categories could lead to a more productive allocation of funding. The current allocation that devotes 50 percent of funding towards finding a cause for autism is too high, since identifying a cause may not be helpful for prevention or treatment. Research conducted into finding environmental causes, like that being undertaken by Autism Speaks, could be very beneficial in reducing the condition’s prevalence. On the other hand, research that focuses on genetic causes (of which there are likely many), or an underlying neurological trigger may not be helpful in either treating people living with the condition, or preventing future cases.
Reducing the amount of funding focused on finding a cause would free up significant amounts of money for other areas, particularly care. The lifetime costs of tending for an individual with autism has been estimated to be between $1.4 million and $2.4 million. Additionally, a study published in pediatrics found that for families the “average loss of annual income associated with having a child with autism spectrum disorder was $6200 or 14% of their reported income.”
With diagnosis and prevalence of ASD growing, the associated costs of looking after an individual with the condition should receive greater attention. More funding should be put towards vocational programs, care facilities specifically tailored towards autistic adults, and improving mental health access for autistic individuals and their families.
More Rigorous Oversight
The authors of the Autism Cares Act recognized that there is a greater need for oversight of federal autism research, now requiring that an official be appointed to oversee the implementation of “autism spectrum disorder activities” and ensuring that activities are not “unnecessarily duplicative.” The first item on this official’s agenda should be to reduce the number of duplicative research projects identified by the GAO.
Moving forward, requiring this official to produce yearly reports focused on funding implementation and overlap would help ensure that all research being conducted had the potential to impact one of four strategic areas. Implementing more rigorous oversight, in combination with better defining objectives and reallocating resources, will promote usage of government funding for autism research in the most effective ways.
Scott Schonberger is a first-year graduate student at the McCourt School where he is studying Public Policy.
The answer to this excellent question is not much has been accomplished. The analysis above is excellent. The problem goes beyond funding policies and redundancy of research and the analysis above hints at this. The main issue in my view is that funding has been misdirected toward prevalence measures, behavioral studies, neurology, pharmacology, and genetics. Instead studies should focus on known autism biochemistry and empirical experimentation on existing compounds to see how they might ameliorate the biochemical dysfunction.
With respect to prevalence (counting cases), the CDC has spent hundreds of millions of dollars putting together centers in various areas of the country to obtain raw data for statistics on autism prevalence and the results is they have statistics that are not very objective and could have been obtained through other means. For example one could obtain very similar statistics using data from the Department of Education collected by the states. These CDC funds should be spent on something else.
Behavioral studies have been going on since the 1970s. Yet we are still doing them and there is little that will be helpful to those with autism by further identifying ways of categorizing behavioral symptoms and even whether particular teaching methods yield particular behavior. Neurology and brain studies sound promising in that behavior is surely influenced by the brain but the problem is looking at a brain image gives little information at the neuronal level and the neuronal dysfunction in autism seems to typically be caused by biochemical dysfunction. Genetics sound promising but it ignores the environmental contribution and for most with autism it offers no insight into cause because genetics studies to date have been tied to individual genes with large effects which only a minority with autism have. Pharmacology generally focuses on existing psychiatric drugs which effect neuronal function at a macro level and because such drugs are not designed to address autism biochemistry generally and often because those doing pharmacological studies are clueless about autism biochemistry the results to date have been poor.
With respect to autism biochemistry, a lot of current funding is going toward finding new autism biomarkers, which are really neurological markers such as eye tracking with a fancier name. Autism does feature real biochemical dysfunction though and there are existing papers on real biomarkers in the literature but they don’t seem to be used. Paul West recently described a set of markers that are typically different in autism from controls. Many of these were already in the literature previously. For example, Jill James among others has highlighted the ratio of oxidized to reduced glutathione is typically low in autism, Rosemary Waring has highlighted excess sulfur in the urine, and Y. Yao has highlighted that autism typically features vascular damage.
Why not do studies that build on this biochemical foundation? This offers the possibility of helping a lot of people affected. For example, take an herb that tends to decrease markers of vascular damage and do a double blind trial of it on those with autism with vascular markers.
Can we just please put you in charge? That is being said in all seriousness, not sarcasm.
As the baby boomers die off assisted living facilities and nursing homes built for them can treat the adult autistic people as they get older and there parents die off. If done right parents of autistic children can die with peace knowing their children will live in facilities that can care for them without ending up in some God forsaken state hospital.