Family Stress and Resilience

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

Duncan, A. L., & Shepley, C. (2026). Stronger Yet Stretched: Resilience and Stress in U.S. Families Raising Autistic Children. Autism, 0(0). https://doi.org/10.1177/13623613261480171

Lay abstract:

Raising a child with autism presents families with unique challenges and strengths, often characterized by heightened stress but also remarkable resilience. This study looked at data from the 2022 and 2023 National Survey of Children’s Health administered by the U.S. Census Bureau to examine the resilience and stress of U.S. families with and without a child diagnosed with autism. Statistical models revealed that although families of autistic children experience significantly higher stress, they also report higher levels of resilience compared with families of nonautistic children. Specifically, families raising a child with autism reported higher ratings of family communication, problem-solving, inner strength, and hope. These findings offer evidence of the adaptability and emotional growth present in households raising a child with autism.

From the article:

Given the disproportionate levels of stress reported by families raising a child with autism, alongside the widespread recognition of stress as a major contributing factor to detrimental mental and physical health conditions, it is logical to assume that families may seek treatments to mitigate their stress or service providers may proactively recommend treatments targeting stress. Studies on parent-directed treatments for decreasing stress have surged in recent years (Mo et al., 2024), with small-scale efficacy trials suggesting that mindfulness-based interventions and acceptance and commitment therapy may demonstrate potential viability as effective treatments (Li et al., 2024). Regarding treatments that should be avoided for decreasing stress, the use of applied behavior analysis for improving child skills will likely not have spillover effects that impact caregiver stress (Duncan et al., 2024; Duncan & Shepley, 2022). Similarly, studies that aim to improve caregiver abilities by training them to implement interventions based on applied behavior analysis will likely not result in improvements to caregiver stress (Mo et al., 2024). There is ongoing research looking to modify well-established treatments for reducing caregiver stress (Parent-Child Interaction Therapy [University of California, Los Angeles, 2024]) for families raising a child with autism; however, results from these studies will likely not be available for some years.

Administration Cuts Research On Parents with Disabilities

Many posts have discussed Trump's bad record on disability issues. As his words and actions have shown, he despises Americans with disabilities. He told his nephew Fred that severely disabled people -- such as Fred's son -- should "just die."

Project 2025 proposed to turn IDEA into a "no strings" block grant, effectively gutting the law and destroying protections that disability families have long relied upon. During the 2024 race, Trump denied any connection to the project, but now he proclaims it, praising OMB director Russ Vought "of Project 2025 fame."

Trump and Vought are now accomplishing their goal of ravaging the law. Instead of shifting it to a block grant, they are firing most of the staff who enforce it.  A judge has temporarily paused the attack, but the administration will likely find ways to ignore or circumvent the order.

Roni Caryn Rabin at NYT:

The Trump administration has eliminated a funding stream that for the last 30 years has supported the only U.S. government-backed national research center focused on parents with disabilities.

The National Research Center for Parents with Disabilities will begin to phase out its operations on Aug. 31, when the current five-year grant ends, officials from the center said.

The center, based at Brandeis University’s Heller School for Social Policy and Management, is a multiple university collaboration aimed at improving the lives of the 4.5 million U.S. parents with disabilities and their families. The center, which funds researchers in Boston and around the country, analyzes health care access and economic hardships faced by parents with disabilities and tracks state laws, serving as a clearinghouse for information on the issue.

The government has supported the center for decades through a competitive grant that has provided $500,000 a year in recent years and was slated to increase. Monika Mitra, the center’s director, said that an initial notice announcing the grant was posted a year ago, as is usually the case. But the more detailed information required to submit an application, which normally arrives in the grant application portal by February, never appeared. In July, the original link announcing the grant vanished.

...

The withdrawal of the funding comes in the wake of a series of administration announcements that have raised concerns for people with disabilities. In June, the Justice Department’s Office of Legal Counsel issued a memo indicating that states were not required to provide services enabling people with disabilities to remain in their homes and not be forced into institutions. The administration also announced plans to move special education programs and civil rights enforcement in education out of the Education Department, which raised concerns among advocates who said the step would weaken oversight.

Family Caregivers

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

Paul Wynn at AARP:

An invisible workforce across the country dedicates their time, energy and spirit to their work, usually without pay. These are family caregivers, and their contribution to the U.S. economy exceeded $1 trillion in economic value in 2024, according to a new report from the AARP Public Policy Institute.​

The report, “Valuing the Invaluable 2026,” found that the 59 million family caregivers in the U.S., who are caring for adults, provided 49.5 billion hours of care, equaling work done by 23.8 million full-time workers, or about 17 percent of the nation’s full-time workers. The first report in the 20-year Valuing the Invaluable series — issued every two to four years — estimated the economic value of caregiving at $350 billion in unpaid care in 2006

From the report:

 Family caregivers provide essential support to adults with disabilities and complex medical conditions. Family caregivers handle daily tasks of living (such as toileting, dressing, preparing meals, and transportation), complex medical and nursing tasks, and coordination of medical and social services. Most long-term services and supports (LTSS) in the United States is provided by family caregivers,1 and nearly all of it is unpaid.2 

 1 National Academies of Sciences, Engineering, and Medicine, Families Caring for an Aging America (Washington, DC, The National Academies Press, 2016), https://www.ncbi.nlm.nih.gov/books/NBK396401/ 2 Of the 59 million caregivers of adults, only 2 million were paid for all of their care hours, and another 9 million were paid for some of the hours they provided. The total economic value of $1.01 trillion is for all care provided, whether or not it is paid. Source: Caregiving in the US 2025 (table 2, page 7) 

Advocacy Programs for Latino Families

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

Burke, M. M., S. Ramos-Torres, G. H. Espinosa, et al. 2025. “ Testing an Advocacy Program to Improve Service Access Among Latino Families of Autistic Youth: A Randomized Controlled Trial.” Autism Research 18, no. 8: 1714–1724. https://doi.org/10.1002/aur.70068.

ABSTRACT

Families of transition-aged youth with autism often struggle to access services. Due to systemic barriers, Latino, Spanish-speaking families of autistic youth especially struggle to access services. One way to improve service access is through parent advocacy abilities (i.e., knowledge of adult services, advocacy abilities and comfort, empowerment). To improve parent advocacy abilities and, ultimately, service access, we conducted a randomized controlled trial to test the feasibility and efficacy of an advocacy program: ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services). Of the 30 participants who were retained for analyses, intervention (vs. waitlist-control) group participants demonstrated significant increases in knowledge about adult services, advocacy activities, advocacy skills and comfort, and empowerment. Further, intervention (vs. waitlist-control) group participants demonstrated significantly greater service access. Implications for research and practice are discussed.

Trial Registration: clinicaltrials.gov: NCT06207149

Summary

• It can be hard to find services for autistic youth.
• There are unique barriers to services for Latino autistic youth.
• To improve access to services, we tested an advocacy program (called ASISTIR).
• The ASISTIR program was comprised of 24 h of instruction about adult services.
• Altogether, 30 families participated in the study.
• Some families were randomized to the intervention group, and some families were randomized to the waitlist-control group.
• Families in the intervention group were significantly more likely to be knowledgeable about adult services, comfortable with advocacy, and empowered.
• Intervention group families also reported greater services.

Autism Family Caregivers Act

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

A June 26 press release from Rep. Dave Min (D-CA):

Today, Representative Dave Min (CA-47), alongside Grace Meng (NY-06) Brian Fitzpatrick (PA-01), Henry Cuellar (TX-28), Don Bacon (NE-02), and Maria Salazar (FL-27), introduced bipartisan legislation to provide skills training for parents and caregivers of children with autism spectrum disorder or other developmental disabilities. The bill would establish a pilot program to award grants to nonprofits, community health centers, and hospitals to provide evidence-based caregiver skills training to family caregivers of children with these conditions.

“Roughly one in thirty one children are diagnosed with autism in America,” said Rep. Min. “We need to provide parents with the tools and support to empower their children’s growth and development. Caregiver skill training is proven to help children with special needs flourish. We owe it to our kids to provide them with the resources they need to thrive.”

“Too many families navigating autism face the journey without the guidance and support they deserve. The Autism Family Caregivers Act takes direct action—delivering practical training through local organizations to help caregivers build skills, reduce stress, and improve outcomes for their children. I’ve been working with families and advocates across our PA-1 community who’ve made one thing clear: if we want better results, we have to better equip those doing the work at home. This bill answers that call—and I’m committed to driving it forward,” said Rep. Fitzpatrick.

“Children with autism spectrum disorders and other developmental disabilities deserve to have all the tools they need to reach their full potential in life,” said Rep. Grace Meng. “In order to make that possible, we must make sure caregivers are equipped with the training and support to provide the level of assistance each child needs. This bipartisan bill demonstrates our commitment in Congress to the dedicated caregivers who are giving endless amounts of time and energy toward helping their loved ones live full and complete lives. I am proud to join my colleagues in reintroducing this important bill.”

“I'm pleased to co-lead the Autism Family Caregivers Act, important bipartisan legislation providing essential skills training to family caregivers of children with autism and developmental disabilities,” said Rep. Bacon. “This five-year pilot program will award grants to community organizations nationwide. Through evidence-based training, we'll help families better support their loved ones with improved communication, daily living skills, and behavior management.”

As Co-Chair of the Congressional Autism Caucus, I am committed to empowering caregivers that serve children with autism,” said Rep. Cuellar. “I applaud my colleagues for working across the aisle to help introduce the bipartisan Autism Family Caregivers Act. This bill will train family caregivers using existing medical facilities and organizations to help improve the well-being of children with autism and developmental disabilities.”

“I’m proud to co-lead the Autism Family Caregivers Act, bipartisan legislation delivering essential support directly to the families who need it most,” said Rep. María Elvira Salazar. “This pilot program equips caregivers in Florida’s 27th district and nationwide with critical skills to care for loved ones with autism and developmental disabilities. Strong caregivers build resilient families, and resilient families strengthen America.”

“We’re grateful to Representatives David Min, Grace Meng, Brian Fitzpatrick, Henry Cuellar, Don Bacon, and Maria Salazar for reintroducing this important legislation,” said Keith Wargo, President & CEO of Autism Speaks. “Families have told us time and again how critical caregiver support and training are to their children’s growth and well-being. The Autism Family Caregivers Act responds to that need—bringing evidence-based skills training into communities across the country and helping to address disparities in access to care. Empowering caregivers ultimately means empowering autistic people to thrive.”

“Easterseals Southern California strongly supports the Autism Family Caregivers Act of 2025,” said Dr. Paula Pompa-Craven, Chief Clinical Officer of Easterseals Southern California. As one of the largest autism therapy service providers in the US, we see how caregiver training significantly improves the well-being of autistic children and their families. There are few evidence-based and demonstrated caregiver training programs, and the demand for training far surpasses the supply of resources. We are confident the benefits of autism family caregivers training will improve the lives of the children, families and communities where they reside. We support this bipartisan bill and applaud the cosponsors for addressing this healthcare void.”

“As a leading nonprofit organization with 25 years of experience serving Korean American families of children with Autism and related developmental disabilities, we wholeheartedly support Autism Family Caregiver Act of 2025," said Dr. Hyun Park, M.D. with the Korean Special Education Center (KASEC). “Through our work, we have seen firsthand many challenges of raising a child with disability and the importance of teaching culturally and linguistically appropriate strategies to improve wellbeing of children with developmental disability and their caregivers. This experience has reinforced our strong belief in the importance of caregiver training, making us especially excited about this bill’s potential to empower families, equip caregivers with essential skills, and create a lasting positive impact on children with autism and their communities.”

This bill is supported by the American Academy of Pediatrics, Autism Speaks, Autism Society, Charles B. Wang Community Health Center, Chinese American Association for the Autistic Community, Community Inclusion & Development Alliance, Easterseals of Southern California, Easterseals, Inc., Family Voices, Korean American Special Education Center, National Association of Councils on Developmental Disabilities, and The Arc.

The bill is cosponsored by Representatives Grace Meng (NY-06), Brian Fitzpatrick (PA-01), Henry Cuellar (TX-28), Don Bacon (NE-02), Maria Salazar (FL-27), Lou Correa (CA-46), David Valadao (CA-22), Raja Krishnamoorthi (IL-08), Josh Gottheimer (NJ-05), Nicole Malliotakis (NY-11), Eleanor Norton Holmes (DC-AL), LaMonica McIver (NJ-10), Steve Cohen (TN-09), Jahana Hayes (CT-05), John Mannion (NY-22), Timothy Kennedy (NY-26), Paul Tonko (NY-20), Ro Khanna (CA-17), Sarah McBride (DE-AL), Jamie Raskin (MD-08), Nikki Budzinski (IL-13), and Robert Garcia (CA-42).

Bill text can be found here.

It Runs in Families

  In The Politics of Autism, I discuss various ideas about what causes the condition. 

As early as the 1940s, Leo Kanner noted that autism tends to run in families.  But why?  Is it only a matter of genetics, or is it also that members of a family tend to have similar environments?

 A July release from the MIND Institute:

Siblings of autistic children have a 20% chance of being autistic themselves — about seven times higher than the rate in infants with no autistic siblings.

That’s the key finding of a new paper by UC Davis MIND Institute researcher Sally Ozonoff and the Baby Siblings Research Consortium. The consortium is a collection of more than 20 research groups at universities worldwide.

Ozonoff is a distinguished professor in the Department of Psychiatry and Behavioral Sciences. She has studied the recurrence of autism in families for decades.

The new study is based on a large, diverse group of families at research sites across the United States, Canada, and the United Kingdom. It confirms the same research group’s 2011 findings about the likelihood of autism in siblings.

The new research was published this week in Pediatrics.

Increasing autism rates prompt new study

“The rate of autism diagnosis in the general community has been steadily increasing since our previous paper was published,” Ozonoff explained.

The latest estimates from the Centers for Disease Control and Prevention show that about 1 in 36 children has autism. In 2011, the estimate was 1 in 68.

Ozonoff noted that there have also been changes in autism diagnostic criteria over the past decade. In addition, there is a growing awareness of autism in girls.

“So, it was important to understand if these had any impact on the likelihood of autism recurrence within a family,” she said.

The 2011 paper found a recurrence rate of 18.7%, while the new paper found a rate of 20.2% — a small but not significant increase.

“This should reassure providers who are counseling families and monitoring development. It should also help families plan for and support future children,” Ozonoff said.
A larger, more diverse study

The new study included data from 1,605 infants at 18 research sites. All infants had an older autistic sibling.

“This study was much larger than the first and included more racially diverse participants,” Ozonoff said. The original study included 664 children.

Researchers followed the children from as early as 6 months of age for up to seven visits. Trained clinicians assessed the children for autism at age 3 using the Autism Diagnostic Observation Schedule (ADOS-2), a well-validated tool. The data were gathered from 2010 to 2019.

Sex of first autistic child, multiple autistic siblings key factors

Researchers found that the sex of the first autistic child influenced the likelihood that autism would recur within a family.

“If a family’s first autistic child was a girl, they were 50% more likely to have another child with autism than if their first autistic child was a boy,” Ozonoff said. “This points to genetic differences that increase recurrence likelihood in families who have an autistic daughter.”

The researchers also found that a child with multiple autistic siblings has a higher chance of autism (37%) than a child with only one sibling on the spectrum (21%).

The sex of the infant was also associated with the likelihood of familial recurrence. If the later-born infant was a boy, they were almost twice as likely as a girl to be diagnosed themselves.

“The familial recurrence rate if the new baby was a boy was 25%, whereas it was 13% if the new baby was a girl,” Ozonoff explained. “This is in line with the fact that boys are diagnosed with autism about four times as often as girls in general.”

Race, maternal education level influence recurrence

The researchers found that race and the mother’s education level were likely factors as well. In non-white families, the recurrence rate was 25%. In white families, the recurrence rate was about 18%. In families where the mother had a high school education or less, recurrence was 32%. With some college, the rate was 25.5%, and with a college degree the rate was 19.7%. When the mother had a graduate degree, it dropped to 16.9%.

“These findings are new — and critical to replicate,” Ozonoff explained. “They do mirror the recent CDC findings that autism is more prevalent in children of historically underrepresented groups.” She noted that this reversed a longtime trend of lower prevalence in those groups.

Most importantly, said Ozonoff, if these findings are replicated, they may indicate that there are social determinants of health that may lead to higher rates of autism in families. She emphasized that this study was not designed to answer those critical questions, and more research is needed.

Tracking outcomes

Unlike the first study, the researchers also tracked families who dropped out of the three-year study to see if their outcomes differed from those who did. “We wondered whether families who stayed in the study may have had children who were more affected — making them more worried about their development,” she explained.

That could have biased the estimates of recurrence to be higher than they really were. The current study showed that was not the case.

“So, now we have two large, independent studies that report familial recurrence in the same range,” Ozonoff said. “This reinforces how important it is that providers closely monitor the siblings of autistic children for delays in social development or communication. This is especially true in families who have reduced access to care, because early diagnosis and intervention are critical.”

 

Additional Information:

Study co-authors included Gregory Young and Rebecca Schmidt of UC Davis; Jessica Bradshaw of the University of South Carolina, Tony Charman of Kings College London; Katarzyna Chawarska of Yale University, Jana M. Iverson of Boston University; Cheryl Klaiman of Emory University; Rebecca Landa of Johns Hopkins University; Nicole McDonald of UCLA; Daniel Messinger of the University of Miami; Carol Wilkinson of Harvard University, and Lonnie Zwaigenbaum of the University of Alberta.

See paper for full list of funders.

Justice Jackson's Daughter

In The Politics of Autism, I write about the everyday struggles facing autistic people. 

At CNN, John Fritze and Lauren del Valle report on a new memoir by Justice Ketanji Brown Jackson:

Jackson writes at length about her older daughter, Talia, who is academically gifted but who sometimes struggled with social interactions and transitions at school. After years of navigating what Jackson describes as “outright trauma,” her daughter was diagnosed with autism.

“There is no use in pretending that we weren’t completely devastated by the long-overdue confirmation of what I had suspected all along: that our older child was on the autism spectrum,” Jackson writes. At the same time, Jackson described the news as something of a relief.

“We could end our denial,” she writes.

“As Talia learned to advocate for herself through the years, she would educate us about how she was not ‘a person with autism’ but, rather, was autistic – by which she meant that her autism was an identity as much as her being Black and female,” Jackson writes. “Autism was another lens through which she engaged the world, with full awareness of her strengths and mindful of her trials.”

Fathers of Children with Disabilities

 In The Politics of Autism, I discuss the role of families.  Most of the literature on fatherhood and autism is about paternal age as a "risk factor."

Davies, Alison, Jonathan Rix, and Martin Robb. 2024. “Fathers’ Relationships With Their Disabled Children: A Literature Review”. Disability Studies Quarterly 43 (3). https://doi.org/10.18061/dsq.v43i3.8744.

Our review set out to find how fathers' relationships with their disabled children are represented within the existing literature. Specifically, we were looking for evidence of connections and recurring interactions between fathers and their children that are meaningful to the father. The review covers forty-five papers that include fathers' voices describing their experiences as fathers of disabled children. These studies do not focus on the father-child relationship as a primary concern. We found only two papers referring to the father-child relationship in their abstract or title (Boström and Broberg 2014; Potter 2016). The majority of papers foreground fathers' accounts of challenge, adversity and coping strategies. Few studies prioritise positive aspects of this relationship.

Our analysis identifies a more complex and nuanced picture of father-child relationships than the somewhat negative one emphasised in the majority of papers. Although fathers reveal vulnerability, fear and ambivalence, we find that fathers emphasise the positive aspects of their relationships. However, most research studies do not prioritise these more positive accounts. We identify five main themes: an evolving relationship; caregiving practices; relational aspects of caregiving; recognising and supporting their children's agency; and connectedness. Fathers engage with the practical and relational aspects of caring for their children, providing tender descriptions of attending to their children's physical and emotional needs as well as more ambivalent descriptions of the drudge of daily caregiving. Fathers demonstrate relational care by assuming a range of roles and responsibilities as supporter, team worker, teacher, researcher, advisor, advocate and caregiver. The reciprocal and responsive nature of the father-child relationship is apparent in fathers' descriptions of adapting, shifting expectations and priorities, commitment, solidarity and moments of connection. There is a sense of gratitude hidden in the literature, a recognition of learning from the child, about fathering and becoming a better father. Fathers emphasise the strengths of the child, valuing personal characteristics and attributes, embracing their children's difference and having hopes and expectations for the future. There are few studies providing a sense of everyday father-child interactions but those that do suggest fun, laughter and physical interaction.

The review highlights that fathers' relationships with their disabled children is an under-researched area. The main focus of existing studies is on the negative impact of having a disabled child. Understanding of the complexity and rewarding aspects of fathers' engagement is limited. Future research aimed at providing new insights into our understanding of fathers' relationships with their disabled children is warranted.

Parents of Autistic Adults

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

Marsack-Topolewski, C.N., Samuel, P.S. Experiences of Parental Caregivers of Adults with Autism in Navigating the World of Employment. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06381-8  Abstract:

Purposeparticularly for parent particularly for parents of loved ones with disabilities or health challenges, who need and/or want to be employed. This study describes the employment experiences of aging parents as they continue to balance engagement in the paid workforce with the ongoing provision of care for their adult children with autism spectrum disorder (ASD). The purpose of this study was to examine the lived experiences of parents of adult children with ASD in the context of balancing career and caregiving responsibilities.

Methods

The current study uses a qualitative phenomenological research approach to describe the lived experiences of 51 parents who were caring for an adult child with ASD. The parents participated in telephone interviews to obtain information about their career experiences while providing care and support to their adult children with ASD.

Results

Three caregiving themes emerged including: (a) difficulty balancing caregiving with work responsibilities, (b) reasons for working, not working, or working intermittently, and (c) work as an escape or wanting to work more.

Conclusion

As more individuals with ASD reach adulthood, often relying to varying extents on their families for daily support, parental employment will continue to be impacted as they juggle their career with caregiving responsibilities. Economically, one or more family members typically need to work to sustain the family’s needs and employment support should be considered. As a society, families often need to make choices even with an adult child with ASD of who will work, how, and when.

Independence and Interdependence

 In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

Moser, C., Smith DaWalt, L., Burke, M. M., & Taylor, J. L. (2024). Emerging adulthood in autism: Striving for independence or interdependence? Autism, 0(0). https://doi.org/10.1177/13623613241245647

While some autistic youth have attitudes consistent with Arnett’s conceptualization of emerging adulthood, feeling as though they need more time to gradually move toward adulthood (Cribb et al., 2019), others consider themselves to be adults immediately after adolescence (e.g. 18 years of age; Anderson et al., 2016). This belief may lead to unattainable expectations, as most people achieve more traditional milestones of adulthood later in life (e.g. 29 years of age; Arnett, 2014). Like their non-autistic peers, it is also unclear to what extent independence should be considered a marker of adulthood in this group—particularly given the varied opinions autistic emerging adults have about the importance of self-sufficiency. For instance, although some autistic youth hope to live on their own, others report no desire to move out of the parental home (Anderson et al., 2016). Moreover, autistic emerging adults who desire greater independence can find it challenging to achieve this goal without support (Cribb et al., 2019; Sosnowy et al., 2018).

Thus, to support autistic youth in reaching their maximum potential and achieving their goals during emerging adulthood and beyond, it may be helpful to widen our focus from promoting independence, to promoting independence and interdependence. While the term interdependence has been used in various contexts, here we conceptualize interdependence as a mutual dependency between two or more people and is underscored by the notion that support should not stifle autonomy (Condeluci, 1995). Drawing from other scholars (e.g. Settersten et al., 2015), we argue that no one acts entirely independently, and thus, independence and interdependence co-occur within all people (autistic or not). Furthermore, individuals demonstrate varying degrees of independence and interdependence across domains of life and stages of development. For instance, while some emerging adults may prefer a high degree of interdependence throughout their lifespan, others may desire some degree of interdependence to gain more self-sufficiency in later adulthood (e.g. living independently).

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.

Different by Design and Psalm 139

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

A 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."

My son Joshua Pitney made an award-winning short film about autism acceptance -- also with Psalm 139 at the core (see at 4:00 into the film):

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.

Parental Autism Advocacy and Empowerment

In The Politics of Autism, I discuss the policy advocacy by autistic people, family members, and allies.

 Li, C., Cheung, W. C., Burke, M. M., Taylor, J. L., & DaWalt, L. S. (2024). Examining the associations among knowledge, empowerment, and advocacy among parents of transition-aged youth with autism. Autism, 0(0). https://doi.org/10.1177/13623613231221126   Lay abstract:

Parents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children’s rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents’ knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism.

From the article:

Given this study’s findings, peer advocacy is an important intermediary step in bridging the gap between individual and systemic advocacy. Thus, more research about peer advocacy as a distinct construct and its relationship with individual and systemic advocacy is needed.

To that end, it is important to explore the nature of peer advocacy. In the United States, there has been an increasing emphasis on family navigator programs (e.g. Broder-Fingert et al., 2020; Burke et al., 2016; Feinberg et al., 2016; Magaña et al., 2017). Ultimately, the goal of these programs is to help access services. While family navigator programs are also becoming increasingly common, little is known about the attributes of the navigator that makes navigation effective. For example, some navigators are trained social workers in hospital settings (Feinberg et al., 2016) while other navigators are parents of children with disabilities (Magaña et al., 2017). Our study’s findings suggest that parents who are more empowered are likely to advocate for their peers (i.e. other families of individuals with disabilities). Thus, while not directly examining differences between navigators who are (and are not) family members of individuals with disabilities, our study suggests that peer advocacy may come more naturally to navigators with lived experiences as parents of individuals with disabilities. Furthermore, our study signals the importance of peer advocates especially when considering the need for systemic reform.

Direct Support Workforce Crisis

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

The Family and Individual Needs for Disability Supports (FINDS) survey:

• 68% of family caregivers reported that the direct support workforce crisis had negatively affected the supports that their family members received. 
• 81% of family caregivers provided more supports due to decreased available supports and services. 
• 35% reported that their family member is on a waiting list for government-funded supports and services. 
• 73% paid more out-of-pocket, and 37% report difficulty paying for supports and services. 
• Participants reported that their family members are experiencing various negative effects from the decreased availability of supports, including access to therapies, having work hours cut, losing their job, or having schools/daycares cut hours or close. 
• Family caregivers reported that the negative effects related to their caregiving duties have increased since the 2017 FINDS Survey. 
• The number of caregivers who reported feeling very or extremely stressed has increased from 48% in 2017 to 54% in 2023. 
• Nine in ten caregivers reported some impact on their employment related to their caregiving responsibilities. 
• 41% reported leaving employment to provide supports to their family member. 
• Half of all participants (50%) agreed or strongly agreed that they were under financial strain due to providing supports.

Most people receiving supports were between the ages of 22 and 64 (59%), 39% were aged 21 and under, and 2% were 65 and older. Six in ten (59%) were reported to have an intellectual disability, 50% were reported to have autism spectrum disorder (ASD), 40% had a communication delay or speech disorder, 36% had any developmental delay, and 36% had a mental or behavioral health diagnosis. Fewer than a third were reported to have a variety of developmental disabilities

Policy Priorities and Navigation

 In The Politics of Autism, I discuss the difficulties facing families of newly-diagnosed children.

Patricia Wright at Psychology Today:

The federal government has increased attention to the needs of the autism community for the past couple of decades. But there is much more to do as these issues remain:

• High rates of underemployment and unemployment for autistic individuals
•  Families and caregivers report tremendous stress and lack of access to services and supports
• Students with autism underperform in school
• Community service providers struggle to attract and retain talent
• The deeply rooted stigma and stereotypes about autistic people are pervasive

Addressing access to care is a reasonable first step to promoting well-being. The burden of accessing care is tremendous for families. Indeed, family navigation is the first service noted in the Report to Congress.

To repeat from a December post:

 The U.S. Department of Health and Human Services (HHS) has released the 2022 Report to Congress on Supportive Services for Individuals with Autism. This report was requested by the U.S. House of Representatives Committee on Appropriations in House Report 117-96.

From pp. 76-77 of the report:

The complexity of the supportive services landscape points to one important area of need: family navigation supports to help families identify and coordinatecare among the various providers, service types, and forms of coverage. Services are often fragmented among many different providers and in some cases, families may not be aware of the types of supports that are available to them. Families who are already facing significant functional impairments and disabilityassociated life stressors may have to shoulder additional burden of navigating complicated gatekeeping requirements before even identifying whether appropriate supports and services are actually available in their community. In some instances, providers may receive conflicting guidance on whether or not they are able to serve a person with autism, or if they should be referred to other services specific for those with DD. As a result, autistic individuals’ co-occurring conditions, such as mental health conditions, may go unaddressed. Family navigation services have been found to be effective in improving access and adherence to services over time,371 but tools designed specifically for families following a diagnosis of autism are currently limited.372 To be offered starting in October 2022, a new Medicaid health home benefit for children with medically complex conditions is a step towards meeting this need. This benefit will help state Medicaid programs provide person-centered care management, care coordination, and patient and family support. Fragmentation of the service system may be further improved by enhanced “wrap-around” or “continuum of care” services. Wrap-around services refer to the practice of providing all the various services that anindividual may need over time across different areas in their life (e.g., home, school, community). Wrap-around service delivery is a team-based, collaborative case management approach where a number of professionals work together to provide a holistic program of supports. This coordinated approach can help to improve outcomes for individuals and their families.373,374

Complexity of 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."

The U.S. Department of Health and Human Services (HHS) has released the 2022 Report to Congress on Supportive Services for Individuals with Autism. This report was requested by the U.S. House of Representatives Committee on Appropriations in House Report 117-96.

From pp. 76-77 of the report:

The complexity of the supportive services landscape points to one important area of need: family navigation supports to help families identify and coordinatecare among the various providers, service types, and forms of coverage. Services are often fragmented among many different providers and in some cases, families may not be aware of the types of supports that are available to them. Families who are already facing significant functional impairments and disabilityassociated life stressors may have to shoulder additional burden of navigating complicated gatekeeping requirements before even identifying whether appropriate supports and services are actually available in their community. In some instances, providers may receive conflicting guidance on whether or not they are able to serve a person with autism, or if they should be referred to other services specific for those with DD. As a result, autistic individuals’ co-occurring conditions, such as mental health conditions, may go unaddressed. Family navigation services have been found to be effective in improving access and adherence to services over time,371 but tools designed specifically for families following a diagnosis of autism are currently limited.372 To be offered starting in October 2022, a new Medicaid health home benefit for children with medically complex conditions is a step towards meeting this need. This benefit will help state Medicaid programs provide person-centered care management, care coordination, and patient and family support. Fragmentation of the service system may be further improved by enhanced “wrap-around” or “continuum of care” services. Wrap-around services refer to the practice of providing all the various services that anindividual may need over time across different areas in their life (e.g., home, school, community). Wrap-around service delivery is a team-based, collaborative case management approach where a number of professionals work together to provide a holistic program of supports. This coordinated approach can help to improve outcomes for individuals and their families.373,374

Supporting Autistic College Students

In The Politics of Autism, I discuss the growing number of college students on the autism spectrum. 

At WCVB-TV, Dr. Christopher Keary with Massachusetts General Hospital's Lurie Center for Autism discusses the different types of support young adults with autism spectrum disorder need when starting college.

 

The Health of Parent Caregivers

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

Hamre, Kristin; Nord, Derek; and Andresen, John (2023) "Caregiver health: Having a child with ASD and the impact of child health insurance status," Developmental Disabilities Network Journal: Vol. 3: Iss. 2, Article 5. Available at: https://digitalcommons.usu.edu/ddnj/vol3/iss2/5 

The abstract

This study aims to understand the health outcomes of parents with children with autism spectrum disorder (ASD) and the interactive effect of child health insurance status. The

study utilized 2014-2018 pooled National Health Interview Survey data to construct weighted national estimates and assess main and interaction effect logistic regression models. Findings show parents of children with ASD experienced significantly poorer health compared to parents of children without autism. Insurance status was found to significantly interact with child ASD status. Compared to parents of children without ASD who used private insurance, parents who had a child with ASD who used private insurance, public insurance, or were uninsured were found to have 1.5-, 3.2-, and 2.1-times higher odds of poorer health, respectively. Future research and implications on policy and practice are discussed.

GHOST

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Parents of aging autistic people often say "I can't die."  But they do.

What happens when autistic people have needs that outlive their parents? Susann Senator at Psychology Today:

Clearly, there are problems with the Mom-as-ghost approach; I understand that this is not actually an option. And yet, by paying attention to that terrible longing I have to float over Nat and guard him forever, I came up with an idea that actually has legs. I called my new idea G.H.O.S.T., "Group Home Oversight and Support Team," with the idea that members of the disability community would help out with oversight of each others' disabled loved ones by spending a little time with them.

The GHOST concept soon evolved into "General Help, Outreach, and Support Team" because that name can encompass far more people than those in group homes. Rather than just being about those living in group homes, GHOST could focus on caregivers and family members helping each other out in general but especially when it comes to spending a little time with the disabled loved one.

What is GHOST and how would it work?

It didn't take long for my idea to gain support. In particular, Cheryl Ryan Chan, a good friend and a huge community advocate proposed that GHOST become a subgroup within the Community Builders of Massachusetts TimeBank, which she is still in the process of organizing and launching. In Community Builders Time Bank groups, which exist nationwide, members “bank” time by performing tasks for other members, who would then “repay” this by contributing time and tasks of their own to the bank. For example, Jane visits Andrew in his group home and shares a snack with him. Or Jane goes to the group home to help Andrew with a clothing inventory. This means that now Andrew's family member would now have to donate the same amount of time or more to a member of the GHOST Community. GHOST members donate only what they are comfortable with, but the time they give determines the time they get. Some GHOST members might donate time in other ways in order to get another pair of eyes on their loved one, like looking after a sibling or cutting the grass of a time bank member. In other words, members commit time to gain time. If “it takes a village,” then GHOST would provide that village for families.

Black Single Female Caregivers

 In The Politics of Autism, I write about the everyday experiences of autistic youths and caregivers.

At SSM - Qualitative Research in Health, Jennifer S. Singh has an article titled "Intersectional analysis of autism service inequities: Narratives of Black single female caregivers."

Abstract

Despite the wide range of research on autism disparities in early identification, diagnosis, and access to services in racial and ethnic minorities in the United States compared to White children, few studies focus distinctly on the experiences of Black single female caregivers of children with autism. The dominant research and cultural narrative of White, married, and upper-middle-class families of a child with autism devalues the standpoint and experiences of caregivers whose social and economic position situates their differential experience of raising a child with a disability. Based on a narrative analysis of three Black single female caregivers who have a child diagnosed with autism and rely on Medicaid health insurance in the southern United States, this study offers an intersectional analysis of autism service inequities in diagnosis and services driving evident disparities based on race, gender, and social class. The analysis highlights intersecting ideological, political, and economic domains and associated institutions (i.e., education, employment, housing, and governing laws) that reflect and shape these narratives of autism service inequities. This study re-centers much-needed attention to the silent voices of Black single female caregivers made invisible in the structure of our society and offers a way forward by thinking critically about universal systems of care that can benefit all people.

From the article:

One important finding of this narrative analysis was the effects of caregiving on the mental and physical health of Black single caregivers raising a child with autism. This finding was also evident in the larger sample (Hong & Singh, 2019). While there is limited research in this area, especially among minority caregivers, population-based research indicates that the burden and stress on caregivers have a greater physical impact (i.e., more chronic illnesses and functional limitations) for Black mothers (Lee et al., 2022). Future research in this area is needed to investigate the long-term physical and mental impacts of structural inequities on parenting a child with autism at the intersection of race, class, and gender.