Search This Blog

Monday, March 18, 2024

Underemployment

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.


Lay abstract:
Lots of autistic people are unemployed. Even when they are employed, autistic people might be given fewer opportunities than non-autistic people to progress in their careers. For example, assumptions about autistic people’s differences in social communication might mean they are not given as many promotions. Indeed, we know that many autistic people are in jobs lower than their abilities (known as ‘underemployment’). We reviewed 33 studies that tell us something about career progression for autistic people. Our review found that lots of autistic people want to progress in their careers, but there are many barriers in their way. For example, when they told their employer about being autistic, some people were given fewer opportunities. Research has also shown that autistic people do not get enough support to progress and that gaps in their employment history can make it difficult to progress. Our review suggested that good employment support (e.g. mentors) might help autistic people to progress in their careers. However, not much research has evaluated employment support for autistic people, which means we do not know how useful it is. Future research should find the best support that allows autistic people to live and work in ways that are meaningful to them.

From the article:
Our review suggests that, while many autistic people desire career progression, they are often underemployed, ‘stuck’ in poorly matched job roles and receive few opportunities and little support to progress in their careers. Several studies included in this review attempted to quantify underemployment in their samples, with estimates suggesting up to 46% of autistic people may be employed in jobs below their capability and/or capacity (Baldwin et al., 2014). Our findings suggest that such underemployment may be exacerbated by external agencies (e.g. disability employment providers) who are motivated to place autistic people in the first job that arises, as opposed to the job that is the most appropriate fit to the individual’s preferences, skills and abilities (Berman, 2022; Ortiz, 2018; Raymaker et al., 2023; Sharpe et al., 2022). This underutilisation of autistic talent is problematic for several reasons. First, underemployment has negative implications for people’s mental and physical health, and the impact of underemployment on mental health is thought to be more pronounced for disabled people (Allan et al., 2022; Friedland & Price, 2003; Milner et al., 2017; Milner & Lamontagne, 2017). This is particularly alarming given that autistic people are already considered more vulnerable to poor health outcomes (Cashin et al., 2016; Croen et al., 2015; Lai et al., 2019). Second, underemployment comes at a significant economic cost to individuals, organisations and society more broadly (Barnichon & Zylberberg, 2019; Lloyd-Cape, 2020). As such, reducing underemployment for autistic people should be considered a key target outcome for future research and practice. To address the issue of underemployment, we must understand its underlying causes. The findings of this review provide important insight into the possible barriers to, and facilitators of, appropriate employment and career progression for autistic people. Next, we map the identified barriers and facilitators on to the three key competencies outlined by Arthur and colleagues (1995, 2017).

Sunday, March 17, 2024

RFK Running Mate?

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread  And among those diseases could be COVID-19.

Antivaxxers are sometimes violent, often abusive, and always wrongA leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.


Last month, Rebecca Davis O’Brien reported at NYT:
Super Bowl ads cost a fortune. So when a group backing the presidential bid of Robert F. Kennedy Jr. ran a 30-second ad for him during Sunday night’s game, the political world took notice.

How had the super PAC of a long-shot independent candidate paid for such a costly spot, and whose idea was it to adapt a vintage John F. Kennedy ad for his nephew’s campaign?

A major source of the funding — and the creative guidance — it turns out, was Nicole Shanahan, a lawyer, entrepreneur and Democratic donor who was once married to the Google co-founder Sergey Brin.

...

“It seems like a great opportunity to highlight that he’s running for president,” Ms. Shanahan said. She said part of her motivation was concern about the environment, vaccines and children’s health, and her belief that Mr. Kennedy was willing to challenge the scientific establishment.

“I do wonder about vaccine injuries,” she said, although she clarified that she is “not an anti-vaxxer,” but wanted more screening of risks for vaccinations. “I think there needs to be a space to have these conversations.”

Saturday, March 16, 2024

Autistic Comedians

In The Politics of Autism, I discuss depictions of ASD in popular culture.  

Rachel Aroesti at The Guardian:
In fact, autism seems to be significantly overrepresented among professional standups. (It is estimated – perhaps conservatively – that about 1% of the world’s population are autistic.) Earlier this year, the Scottish comic Fern Brady won the inaugural Nero nonfiction award for her memoir Strong Female Character, a chronicle of the struggles that led to her autism diagnosis. Hannah Gadsby, who rose to fame with the multi-award-winning 2017 show Nanette, also received a diagnosis of autism as an adult, while other comedians who have said they are autistic include Jim Jefferies and Bethany Black, alongside a clutch of up-and-coming standups who discuss their diagnosis in their work (Larry Dean, Ashley Storrie).
...

Autism is not the only form of neurodivergence that is prevalent in standup according to [Pierre] Novellie; he says he knows many comedians with ADHD. However, he and Wells both believe some autistic traits are especially useful when it comes to creating and performing live comedy. In order to finesse a routine, the standup must tell the same jokes over and over again, which means “you need to be obsessive and enjoy repeating things”, says Novellie (intense interests and repetitive behaviour are common autistic traits). Joke-writing itself is also a more scientific enterprise than it might appear. Wells describes it as a “systemising way of writing: you can rearrange a sentence and then it will be funnier. Many autistic brains are more suited to that sort of problem-solving.”
...

One conclusion Novellie came to is that “a lot of being autistic seems to be to do with excess sensitivity. And that is always a boon when it comes to observing for observational comedy.” He believes autistic comedians are often noticing the same things as neurotypical people, only more so, leading to “this fun little ‘Oh yeah – that is what it’s like!’ moment for people because [most of the time] they’re busy being not hypersensitive to their environment.”

Friday, March 15, 2024

Origins of the Neurodiversity Concept

In The Politics of Autism, I discuss the neurodiversity movement.   

 Botha, M., Chapman, R., Giwa Onaiwu, M., Kapp, S. K., Stannard Ashley, A., & Walker, N. (2024). The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory. Autism, 0(0). https://doi.org/10.1177/13623613241237871.  Lay abstract:

This letter discusses the origins of the concept and theory of neurodiversity. It is important to correctly attribute concept and theories to the people who developed them. For some time, the concept of neurodiversity has primarily been attributed to one person, Judy Singer. We consider the available evidence and show that the concept and theory in fact has multiple origins. We draw particular attention to recent archival findings that show the concept of ‘neurological diversity’ was being used years earlier than previously thought. ‘Neurodiversity’ means the same thing as ‘neurological diversity’ and does not change the theory in any way. We conclude that both the concept of neurological diversity or neurodiversity, and the body of theory surrounding it, should be understood as having been collectively developed by neurodivergent people.

From the article:

Against this backdrop, we wish to draw particular attention to a recent and important archival discovery from Martijn Dekker (2023). Dekker is the founder of Independent Living, the email list on which these ideas were developed (Chamak & Bonniau, 2013). Dekker has recently begun to carefully review his extensive archives from Independent Living, and has discovered clear evidence that the neurological diversity concept was fully formed in 1996, before either Singer or Blume were involved. (Dekker obtained permission from those involved in the discussion to be able to publish it.) In this 1996 discussion (Dekker, 2023), one poster, Tony Langdon, writes of the ‘neurological diversity of people. i.e. the atypical among a society provide the different perspectives needed to generate new ideas and advances, whether they be technological, cultural, artistic or otherwise’. In response to a reply from another poster (longtime autistic advocate Phil Schwarz, who endorses the idea), Langdon adds that ‘a lot of this “curing” needs to be applied to society at large’ rather than to autistic individuals. Here, we see a 1996 community discussion where the concept is already developed and being used.


Thursday, March 14, 2024

NBC Report on CARD and Private Equity


At NBC, Gretchen Morgenson reports
Many of the companies swarming the autism services industry are backed by private-equity firms. These entities use borrowed money to buy companies they hope to sell quickly for more than they paid. The industry has taken over a vast array of health care businesses in recent years, even as research has shown that patient care declines at some entities run by private-equity firms. A recent study by academics at Harvard University and the University of Chicago, for example, found that patients at hospitals owned by private-equity firms experienced far more infections and falls. And on March 5, the Federal Trade Commission and Department of Health and Human Services announced an inquiry into private equity and other corporate takeovers of healthcare entities to understand how the transactions might “increase consolidation and generate profits for firms while threatening patients’ health, workers’ safety, quality of care, and affordable health care for patients and taxpayers.”

Among buyouts of autism services companies from 2017 to 2022, 85% were done by private-equity firms, according to Rosemary Batt, a professor at Cornell University’s School of Industrial and Labor Relations. With Eileen Appelbaum, co-director of the Center for Economic and Policy Research, Batt co-wrote a study: “Pocketing Money for Special Needs Kids: Private Equity in Autism Services.” The research estimates that some 135 private-equity firms invested in for-profit companies providing ABA therapy. Because these companies are private, it is difficult to determine the total market share the firms control in autism services, but the top 12 private-equity-backed companies employed 30,000 people and controlled almost 1,300 locations nationwide, Batt and Appelbaum found.
...
For ongoing CARD customers, things seem to be improving. The company’s founder, Doreen Granpeesheh, bought back most of its operations last August. A psychologist and board-certified behavior analyst, she told NBC News she’s dedicated to reviving the company’s services.


Wednesday, March 13, 2024

Deputy Fatally Shoots Autistic Teen

 In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people, they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant, and respond with tasers, batons, chokeholds, or worse. Training could help.

Hannah Fry at LAT:
Ryan Gainer, a teen with autism, was a cross-country runner who worked out his frustrations with six-mile runs and dreamed of becoming an engineer.

On Saturday afternoon, the 15-year-old became upset that his parents had demanded he complete his household chores before he would be allowed to play video games or listen to music on his computer, according to DeWitt Lacy, a civil rights attorney representing Ryan’s family.

“He got upset. Any teen would be upset by that,” Lacy said. Some people with autism experience more heightened emotions and on that day Ryan responded by breaking glass on the front door, Lacy said.

A family member called 911 for help, asking dispatch to send deputies to “take him in” because he was breaking glass and hitting his sister, according to a portion of the call released by the San Bernardino County Sheriff’s Department.

But instead a responding deputy fatally shot the teen, saying he had threatened the deputy with a garden tool.

 

Tuesday, March 12, 2024

Biden Budget on Disabilities

  In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

From the FY 2025 Budget:

To support high-quality special education services for over seven million Pre-K through 12 students with disabilities, the Budget provides $14.4  billion for Individuals with Disabilities Education Act (IDEA) StateGrants, a $200 million increase over the 2023 enacted level. Since 2021, the Administration has secured a $1.3 billion, or 10-percent increase in annual funding for the program as well as an additional $2.6 billion in American Rescue Plan funds to help students with disabilities recover from the COVID-19 pandemic. The Budget also invests $545 million in IDEA Grants for Infants and Families to provide early intervention services to infants and toddlers with disabilities. To address nationwide special educator shortages, the Budget also invests $125 million, which is $10  million above the 2023 enacted level, in grants to prepare special education and early intervention personnel—addressing another critical educator shortage area.

Monday, March 11, 2024

Trump Hates People with Disabilities

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.

John Hendrickson at The Atlantic:
Former president Donald Trump, perhaps threatened by President Joe Biden’s well-received State of the Union address, mocked his opponent’s lifelong stutter at a rally in Georgia yesterday. “Wasn’t it—didn’t it bring us together?” Trump asked sarcastically. He kept the bit going, slipping into a Biden caricature. “‘I’m gonna bring the country tuh-tuh-tuh-together,’” Trump said, straining and narrowing his mouth for comedic effect.

Trump has made a new habit of this. “‘He’s a threat to d-d-democracy,’” Trump said in his vaudeville Biden character at a January rally in Iowa. That jibe was also a response to a big Biden speech—one tied to the anniversary of the January 6 insurrection. (Guess who the he was in that sentence.)
...

Stuttering is one of many disabilities to have entered Trump’s crosshairs. In 2015, he infamously made fun of a New York Times reporter’s disabled upper-body movements. Three years later, as president, when planning a White House event for military veterans, he asked his staff not to include amputees wounded in combat, saying, “Nobody wants to see that.” Stuttering is a neurological disorder that affects roughly 3 million Americans. Biden has stuttered since childhood. He has worked to manage his disfluent speech for decades, but, contrary to the story he tells about his life, he has never fully “beat” it.

A few years ago, I wrote:

He displayed that attitude long before he became president. As his niece Mary Trump recounts in her new book, “Too Much and Never Enough,” Trump cut off his nephew’s medical coverage after he challenged the will of family patriarch Fred Trump. The nephew had a baby son with a severe neurological disorder. A reporter for the New York Daily News asked Trump how he felt about coldly stopping health insurance for a disabled infant. “I can’t help that. It’s cold when someone sues my father.” The nephew and his wife eventually settled with Trump. Their son now lives with cerebral palsy.
Barbara Res, who ran construction at the Trump Organization, recalled Trump talking to an architect in a Trump Tower elevator. He asked the architect about the raised dots next to the floor numbers. When the architect explained that they were Braille, Trump shouted, “Get rid of the (expletive) braille. No blind people are going to live in Trump Tower.’
...

Trump has denied using the R-word as a slur. That’s another provable lie, or as James Comey might say: Lordy, there are tapes. In April 2004, he told shock jock Howard Stern: “But you know, I was criticized in one magazine, where the writer was retarded and said, ‘Donald Trump put up seven million dollars.’” A few months later, he started to use the word again but cut himself off: “I have a golf pro who’s mentally ret—I mean he’s like, really not a smart guy.” Several sources told The Daily Beast that he repeatedly used the term against Marlee Matlin, the Oscar-winning deaf actress who competed on his show, “Celebrity Apprentice.


Sunday, March 10, 2024

Study of Parent Perspectives

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

 Asbury, K., Toseeb, U., & Barrow, N. (2024). What do parents of nonverbal and minimally verbal autistic children think about genomic autism research? Autism, 0(0). https://doi.org/10.1177/13623613231213431

Lay abstract:

In Summer 2021, a genomic study of autism, Spectrum 10 K, was paused due to backlash from the autistic and autism communities. This raised important questions about how these communities perceive genomic research. The Personal Experiences of Autism and Perceptions of DNA-based research study was established to address this issue among a range of sub-groups within these communities. Twenty parents of nonverbal or minimally verbal autistic children took part in the current study. Data were provided in diverse formats including online interviews, telephone interviews, and writing. This approach was co-produced with autistic experts by experience and involved a parent of a minimally verbal autistic child. Data were analysed using reflexive Thematic Analysis. We found that participants were supportive of autism research, including some genomic research, as long as it is designed to support autistic people and is ethical and transparent. However, while some believed that polygenic scores, genomic predictors of the statistical probability of being autistic, would be helpful, others argued that this would only be true in an ideal world and that the world is too far from ideal. Participants felt excluded from the autistic and autism communities and that the dominant voices in those communities do not represent them or their children. We concluded that genomic researchers need to work with the autistic and autism communities to design future work, and that it is important to ensure a representative range of voices are heard.

From the study:

Participants expressed a view that their children’s experiences are meaningfully different to those of the most vocal members of the autistic community and that this makes them feel their children are unheard in discussions that affect them, including discussions about genomic autism research. This belief was often coupled with the idea that because their children do not have a voice – in the sense that their speech is absent or very limited – they, as parents, need to be that voice, even with the risk that they may not represent the children exactly as they would choose to be represented.

Participants used the language of severity and function level, while acknowledging that such language is unpopular within the autistic community. P6 said: ‘not everybody gets the good type of autism, the high-functioning autism’. While several participants were at pains to be clear that they did not wish to minimise the experience of others, most felt that their children faced significantly more challenges than those individuals whom they saw speaking for the autistic community on social media and elsewhere. Because they saw their children as different from the dominant autistic voice, as they perceived it, participants felt their experiences were rarely taken into account, and this exacerbated feelings of isolation. ‘It sometimes feels that the voices of high-functioning autistic people are angry and strident and do not take into account whatever their non-verbal peers may think or feel’ (P2). P15 related this specifically to the activism that took place around the launch of Spectrum 10 K:
And, so for those people that are really severely affected I think basically those people kicking off kind of robbed a portion of the autistic community of that chance, to have that research done . . . I just think it was short-sighted and selfish. That is kind of quite strong, but that is my opinion.






Saturday, March 9, 2024

Autism Research: British Perspectives

 In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

 Amelia Hill at The Guardian:

Dr Grainne McAlonan, a clinical professor of translational neuroscience at the department of forensic and neurodevelopmental sciences and Institute of Psychiatry, Psychology and Neuroscience at King’s College London, has just started investigating a psychedelic compound – psilocybin – found in magic mushrooms.

She is looking at the serotonin pathway, which plays a key role in a range of essential functions such as sensory processing, cognition, mood and sleep. One of the most consistent findings in autism research are differences in the serotonin pathway: more than 25% of autistic people have high blood serotonin levels.

If McAlonan identifies individual differences in the brain serotonin system targeted by psilocybin, the next step will be to ask whether they can establish if there is a biological response to the drug that might be clinically useful. “Ultimately, this research may allow us to provide more personalised choices for those autistic people who want the option of a medication for their difficulties,” she said.

This was an exciting time for autism research, said Matthew Swindells, an evidence, research and evaluation manager at the National Autistic Society.

He points to other research that addresses real-life issues, including the Bridging Project led by the University of Plymouth, which uses virtual reality to reduce the autism employment gap; autism in affinity spaces, led by Queen Mary University London, which explores how young autistic people use social media platforms to engage in their interests; and Audit 50, led by University College London, which focuses on the experiences of older autistic people, an often overlooked population.

Swindells said: “Perhaps, most importantly, researchers have moved away from stigmatising, deficit-based language and approaches. Instead, it has started to focus on the topics that really matter to autistic people. This can be seen with the emergence of more autistic lead researchers, as well as some brilliant examples of participatory approaches within research practice.”

Thursday, March 7, 2024

Different by Design and Psalm 139

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

number of posts have discussed religion -- a source both of strength and difficulty.

Christine Rousselle at Fox:
In honor of her son Isaac and all others with special needs, [Monica] Mangiacapra wrote the book "Different by Design." The scripturally based picture book helps explain disabilities to children.

She was inspired in part by her own experiences, she said. After their son's birth, Mangiacapra and her husband were suddenly thrust into the world of parenting a child with special needs.

...

It was Psalm 139, she said, that would become the backbone of her book.

Even before she left the hospital, Mangiacapra began to look for "a book with scripture, but also related to disability" that was not trying to push any other sort of ideological agenda, and was not focused only on physical differences.

The message of the book is that "we are all different, just as God designed," even if those differences are a disability.

The book features illustrations that "represent as many visible and invisible disabilities," she said, including autism and communication disorders.

...

The new book "Different by Design" is available on Amazon or at Mangiacapra's website, "A Joyful Advocate."








Psalm 139:13-15 (NIV)

For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.








Wednesday, March 6, 2024

Measles and Polio: Back to the Future

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread   Examples include measlesCOVID, flu, and polio.

Michael Hiltzik at LAT:

We’ve already seen that the embrace of pernicious anti-vaccination claptrap by unscrupulous politicians and government officials has had detectable impacts on public health. The Centers for Disease Control and Prevention is now reporting 41 cases of measles, for which a vaccine has been available since 1963, in 16 states.
...
At a campaign rally in Richmond, Va., on Feb. 2, [Trump] said this, referring to the policy he would implement as president: “I will not give one penny to any school that has a vaccine mandate or a mask mandate.”

...

Now let’s turn to Robert F. Kennedy Jr., whose campaign for president has allowed his dangerous anti-vaccine hogwash to be mainstreamed into the body politic like an IV drip of strychnine. His pitch so bristles with disinformation and pseudoscience that it’s been disavowed by virtually his entire family, whose name has been synonymous with progressive politics and policy for generations.

Children’s Health Defense, the anti-vaccine organization Kennedy founded and chairs, last week platformed a fatuously inaccurate 2013 book claiming that polio isn’t caused by a virus and that the polio vaccine “doesn’t work.”

The book was conclusively debunked long ago. But last Tuesday, the organization published an interview with its co-author Suzanne Humphries, in which she repeated her claim that polio is caused by toxins, not the virus.

“According to Humphries, there are no worthwhile vaccines, not even smallpox or tetanus, and certainly not the polio vaccine,” the interview read.

Helen Branswell at STAT:

On Sunday, public health officials in two Michigan counties warned their residents that they may have been exposed to measles. In Wayne County, an adult who had contracted the virus abroad had been in health-related settings in Dearborn on two days last week — two urgent care clinics, a CVS pharmacy, and a hospital emergency department. Health officials in neighboring Washtenaw County issued a similar alert about a different case — also an adult, also infected abroad — who was in the emergency department of a hospital in Ypsilanti on March 1.

Both counties urged unvaccinated people who had been in the listed locations at the listed times to contact public health or their health care provider, warning them to phone ahead if they needed to seek in-person care.

These kinds of notices are standard public health practice during measles outbreaks. Alerts of this sort may also warn that someone with measles had been in a crowded public location — an airport, a shopping mall, a theme park.

But in Florida, where 10 residents and at least four non-residents have been diagnosed with measles in the past month or so, the Department of Health has released scant information about those cases. The seeming reticence to speak openly about measles leaves in the dark anyone in the public who might be concerned about whether they may have had an exposure. Likewise, people considering spring break vacations to Florida who want to avoid measles exposures have almost no information on which to plan their trips.

Tuesday, March 5, 2024

Strengthening Coordination of Autism Research and Support Services

Uncertainty and complexity are major themes of The Politics of Autism.

Political scientist Steven M. Teles has coined a term that comes in handy for any discussion of autism services: kludgeocracy. In computing, a “kludge” is a system consisting of ill- matched elements or parts made for other applications. Engineers patch it together and hook it up to an existing system in order to solve a new problem. Kludges are complicated, hard to understand, and subject to crashes. Teles says that this description fits much of American public policy: “From the mind-numbing complexity of the health care system … our Byzantine system of funding higher education, and our bewildering federal-state system of governing everything from the welfare state to environmental regulation, America has chosen more indirect and incoherent policy mechanisms than any comparable country.
US Government Accountability Office
Autism Research and Support Services:
Federal Interagency Coordination and Monitoring Efforts Could Be Further Strengthened
GAO-24-106446
Published: Feb 28, 2024. Publicly Released: Feb 28, 2024.


The National Institutes of Health (NIH), within the Department of Health and Human Services (HHS), plays a key role in supporting the coordination of autism activities across 18 federal agencies, including the Departments of Defense and Education. For example, NIH manages the Interagency Autism Coordination Committee (IACC), a federal advisory committee composed of federal agencies and public members, through its Office of National Autism Coordination.

GAO found that NIH, in support of the IACC and the National Autism Coordinator, generally followed six of eight key collaboration practices that GAO's prior work has shown can be effective in enhancing and sustaining interagency collaborative efforts among federal entities. For example, NIH has taken steps to bridge organizational cultures by convening meetings of the IACC.

Assessment of the National Institutes of Health's (NIH) Role in Supporting Coordination of Federal Autism Activities Compared with Leading Practices for Interagency Coordination

Assessment of the National Institutes of Health's (NIH) Role in Supporting Coordination of Federal Autism Activities Compared with Leading Practices for Interagency Coordination

GAO found NIH efforts to support interagency coordination partially followed the remaining two collaboration practices, including ensuring accountability. For example, although IACC strategic plans describe high-level progress made toward autism activities, they generally have not described how progress made relates to goals. NIH officials stated their progress tracking approach is driven by established processes, some of which are required by law. Establishing a clear process for tracking progress would help to determine progress toward IACC's goals and that interagency efforts are effective.

NIH helps ensure federally funded autism activities are not unnecessarily duplicative through various activities, such as holding meetings and through data and information reviews. However, GAO found the processes used by NIH's Office of National Autism Coordination were not documented. For example, NIH does not have written procedures describing the steps these staff should follow when reviewing federal autism research information for potential duplication. Although NIH officials stated that they believe current monitoring processes are sufficient, documenting these procedures will help ensure they are properly designed and executed to provide reasonable assurance that duplication is not occurring.