In 2020, 1 in 30, or 3.49%, of children ages 3 to 17 were diagnosed with autism spectrum disorder (ASD).1 Children with autism often receive support through the public education system, but as they transition into adulthood, they “age out” of many of these services. Adult services are often more fragmented and harder to access, requiring individuals or their families to navigate a complex array of providers and eligibility requirements.
Further, as Polly Tommey, founder and editor-in-chief of The Autism File and founder of the Autism Trust, explained to Children’s Health Defense (CHD), even the “gold-standard” autism institutions for adults fail to provide proper care. Tommey described one well-respected facility in Texas as a “zombieland” where “everyone is walking around heavily medicated.”2
The gap in support between children and adults with autism highlights the need for comprehensive life-long support systems that transition smoothly from youth to adult services, but many people end up falling through the cracks.
As noted by Michael Nevradakis, Ph.D., senior reporter for The Defender, Tommey says “increasing numbers of parents are teaming up to develop communities where their adult autistic children can receive care for the rest of their lives.” Further:3
“Tommey warned that if something doesn’t change, society will face a dual tsunami going forward: the need for housing for adults with autism and the growing number of autistic children exhibiting new and more severe symptoms.”
World Autism ‘Awareness’ Day Changes to ‘Acceptance Day’
In 2024, World Autism Awareness Day became World Autism Acceptance Day. In a 2024 briefing from The White House, it’s noted:4
“America was founded on the idea that all people are created equal and deserve to be treated equally throughout their lives. Today, we champion the equal rights and dignity of the millions of Americans on the autism spectrum, and we celebrate the immense contributions of all neurodiverse people, whose perspectives and experiences make America a richer Nation.”
The 2023 verbiage from The White House regarding Autism Awareness Day reads:5
“There is no one way to be autistic — each individual with autism experiences it differently — but together, autistic people make industries, communities, and our Nation stronger. Today, we celebrate the achievements of neurodiverse people everywhere and champion the equal rights and dignity of all those living on the autism spectrum.”
But according to Age of Autism, “The verbiage is shiny and happy and a warm embrace that appears wonderful to the untrained eye” but “acceptance is a cop out:”6
“The Presidential proclamations EXCLUDE people with DSM-V full autism. The ‘Neurodiversity’ community has HIJACKED the message. We do not forget this. Acceptance is BASELINE humanity … We’re told to accept everything today, willy-nilly without thought. But acceptance is a cop-out designed to cover up the myriad ways in which those children and adults diagnosed with full-blown autism are routinely discriminated against.”
Normalizing Autism May Distract From Finding Its Causes
Tommey, whose son Billy is vaccine-injured and has been diagnosed with autism, was critical of the recent media push to normalize autism and describe it as a gift, stating that it may take attention away from causes such as vaccine injuries and environmental factors. She told CHD:7
“‘They have no choice but to make it a wonderful gift … and I want to make it clear that Billy, my son, is my gift. The autism they labeled him with from the vaccine injury is not a gift. It is, at times … honestly pure hell to live with. It’s a very difficult journey to go on. We love him and we’re proud of him, but it can destroy the family,’ she said — noting that 80% of marriages in households with autistic children end in divorce.”
By normalizing autism, there might be a decrease in the urgency to research its causes. Acceptance could lead to complacency, where the impetus to delve into the biological, environmental and genetic factors contributing to autism wanes because the condition is viewed as a natural variation of human neurology rather than a disorder that might require intervention.
Normalization could also shift funding away from research aimed at understanding the origins and development of autism and toward social integration initiatives. This could slow progress toward discovering potential treatments or interventions that could improve quality of life for those affected, or help prevent the condition in the first place.
Further, if autism is seen simply as a difference rather than a condition that can sometimes involve significant disabilities, there might be a reduction in the perceived need for supportive services. This could affect funding and availability of tailored education, therapeutic services and other support mechanisms that are essential for many individuals on the autism spectrum.
Meanwhile, normalization might gloss over the struggles faced by those at the more disabling end of the spectrum, underrepresenting their needs and the severity of challenges they face.
Costs of ‘Autism Tsunami’ Projected to Reach $5.54 Trillion by 2060
As autism rates continue to climb, there’s a growing need to understand and project the financial impact this has on society. Many models that try to estimate these costs assume that autism rates have stayed the same over time, which isn’t accurate. Further, models often overestimate how much is currently being spent on adults with autism and hugely underestimate future costs as more people are diagnosed.
A new model that takes into account the actual rise in autism diagnoses over time paints a clearer picture.8 It looks at different age groups, inflation and future predictions of autism rates to forecast costs. According to this model, the annual cost of autism in the U.S. was around $223 billion in 2020. This cost is expected to jump to about $589 billion by 2030, reach $1.36 trillion by 2040, and could hit between $4.29 and $6.78 trillion — estimated to be $5.54 trillion — by 2060. CHD noted:9
“Their ASD prevalence model showed that based on current trends, the U.S. could surpass 6% rates of ASD in children born in 2024 and 7% born in 2032, and then would likely rise more slowly after that. This differed from previous models, which predicted continuous exponential growth.
Costs associated with ASD included ‘non-medical services’ like community care and day programs, individual and parent productivity losses, estimated special education costs, early and behavioral intervention and medical costs.”
The sharp increase in predicted future costs, especially as more adults will need support, means that the financial burden will shift significantly from families to the government. This underscores the urgency of developing prevention strategies, including better regulation of environmental factors that might contribute to autism, to help mitigate these rising costs.
“Paradoxically, the future costs of autism loom so large that, rather than responding with a sense of urgency as one might expect, policymakers thus far have generally failed to engage with the policy implications at all. We hope this paper will serve as a wake-up call for the public health emergency that the societal cost of autism represents to the economic future of the U.S.,” the researchers wrote.10
Shortages of Adult Care Facilities Already a Reality
As an increasing number of people with autism enter adulthood, resources for proper care are already running short. In Massachusetts, state-run facilities are not only in short supply but also dealing with allegations of abuse and neglect. The Boston Globe reported:11
“A record number of children with intellectual disabilities or autism turn 22 years old this year and qualify for adult services with the [Massachusetts] Department of Developmental Services. The number of people reaching this milestone each year has doubled since a decade ago to more than 1,430, driven by the tremendous increase in children with autism. Autistic children now account for more than half of these new adults.”
Severely disabled adults with autism, who may be nonverbal or engage in self-injury or aggression, may qualify for state help to live in group homes. But the Department of Developmental Services says such housing is “extremely limited,” in part due to staffing shortages. According to the Boston Globe Investigation:12
“While the state has directed millions more dollars to group home providers to help them recruit and keep staff, pay remains similar to that of some retail and fast food workers; $17 to $20 an hour is typical.
The low pay ‘feeds the problem of abuse and neglect because many agencies are still using temp agencies to staff residences or not getting the most qualified applicants,’ [Michael] Borr, [former chairman of Advocates for Autism of Massachusetts,] said.”
“There has been very little planning to prepare for this,” Bore told the Boston Globe. “[In the past,] I would talk about the tsunami that is coming. It’s not coming anymore; it’s here.”13
Big Pharma Sees Dollar Signs in Autism Treatment
The global autism treatment market is expected to reach $11.42 billion by 2028, up from $9.01 billion in 2021.14 James Lyons-Weiler, Ph.D., author of “The Environmental and Genetic Causes of Autism,” told Children’s Health Defense:15
“For decades, the increase in autism was denied, and any discussion of the treatment of autism was met with the same derisive forces that would malign and mischaracterize the parents and physicians trying to give these kids a better day.
Now that Pharma has recognized the scale of the clinical population of people on the spectrum and is charting a translational path toward their profits, it’s finally considered OK to admit the increase and to rush headlong into treatment programs. I say to the parents of kids with autism, and to adults with autism: Beware Pharma.”
Yet, many people with autism end up on a cocktail of drugs, oftentimes unnecessarily. Among children with autism, 1 in 6 are taking antipsychotic drugs, for instance.16 Tommey said:17
“Before you know it, you’ve got this whole cocktail of drugs that do not work. It is not sustainable to have that many drugs in you and survive. They’re seeing it as a money-making opportunity. It is a huge, barbaric money-making machine … and somehow we’ve got to stop this.
It is everybody’s problem what we have done to these adults … with autism and what the future is going to hold. It’s going to be a really desperate situation. It already is a desperate situation, but it’s going to get a lot worse.”
Seek Help in Your Local Community
Tommey suggests parents must band together and take control to protect their autistic children’s future. “I implore parents to get together in circles and fix the future for your child. You have to do it, otherwise, they’re going to take them,” she said.18 Tommey and others have built their own self-sustaining care communities, using donated land where families can live together.
Others have bought houses to leave to their adult autistic children and established a board of individuals to care for them. For parents who are looking for help, Tommey suggests reaching out in your community or to local churches to ask for help. She told CHD:19
“Keep going, because there are people out there that will help you. Just don’t give up, because these adults with autism, they need you to protect them in the future.
And maybe, get together with people like us and see what we’re doing, see if you can get involved with that as well … I can tell you there are more good people here in America … There are some strong, powerful human beings here in America who will help you and who want to help you. So lean on them.”
