First-of-its-kind study finds nearly 30% of U.S. 8-year old children with autism have “profound autism”

Using data from the Centers for Disease Control’s Autism and Developmental Disabilities Monitoring (ADDM) Network, a new study has found nearly 30% (26.7%) of 8 year-old children with autism suffer from profound autism, with an overall birth-cohort prevalence of .46% 8-year-olds.

Children were classified as having profound autism if they met the recent Lancet commission definition of “profound autism,” that is, having autism with IQ score < 50 or being nonverbal or minimally verbal. For the children with IQ data actually available in the records, the profound autism rate was 29.4%.

“It is important to note that this 27% includes only a subpopulation most severely impaired by autism,” said Jill Escher, president of the National Council on Severe Autism. “Those with IQs of 50-85, who may have language but little ability to hold an age-appropriate conversation or benefit from regular education, would be excluded from this subpopulation. It is crucial to understand the “non-profound” population discussed in this study in no way means ‘high functioning’.” That said, she added, this data is an essential start for the urgent need to better characterize the needs of the severely impaired autism population to promote stronger research and policymaking.

Key take-aways:

• Sites. The data studied included 20,135 children aged 8 with autism during 2000-2016 (excluding 2012 and 2014 when nonverbal status was not captured), from 15 sites (Alabama, Arkansas, Arizona, Colorado, Florida, Georgia, Maryland, Minnesota, North Carolina, New Jersey, South Carolina, Tennessee, Utah, Wisconsin, and West Virginia).

• The percentage of children with autism who had profound autism was highest in the first study year, 2000, at 40.5% (this birth cohort is age 31 today). The lowest percentage of children was in the most recently included study year, 2016, at 24.3% (this birth cohort is age 15 today). The percentage of the autism population who had profound autism differed among sites, from 21% in Colorado to 38.3% in South Carolina.

• The birth cohort prevalence of profound autism varied by site, ranging from .28% in Colorado to .64% in North Carolina. New Jersey had the highest prevalence of non–profound autism, at 2.6% of the overall birth cohort.

• Prevalence over time. Over 16 years of surveillance, 2000-2016, the prevalence of non–profound autism increased dramatically, from .394% to 1.426%. The prevalence of profound autism also greatly increased, though at a lower rate, from .268% to .459%.

• Challenging behaviors. Profound autism was more common among children who had documented self injurious behaviors or seizure-like behaviors than among children without these behaviors. Most children with profound autism had:

• aggressive behavior (52.7%)

• low adaptive functioning score ≤70 (79.4%)

• self-injurious behavior (36.5%)

• seizures or seizure-like behaviors (31.0%)

• Lower community-level socioeconomic status and maternal education levels were associated with a higher percentage of profound autism.

• Racial difference. The prevalence of profound autism among Black children was higher than among White children,while the prevalence of non–profound autism washigher among White children than among Black children.

• Sex difference. While boys were significantly more likely than girls tohave autism, among autism cases, girls had 1.25 times the prevalence of profound autism as boys.

• Among 8 year-old boys, .72% are estimated to have profound autism and 2.3% have non-profound autism.

• Children with autism who were born preterm or had a low birthweight were more likely to have profound autism than children with autism who were not.

• The median age of diagnosis for children with profound autism lower (average 46 months), compared to those with non-profound autism (average 57 months).

• ADDM Network sites changed across study years and may not be representative of their entire state or the United States.

• Possibility of under-ascertainment of profound autism: The study classified children as verbal if they had no verbal ability information in their records, which might have led to underascertainment of nonverbal/minimally verbal status; furthermore, the ADDM case definition for nonverbal was stricter than the case definition for minimally verbal from other research.

The term “profound autism” comes from a 2021 Lancet Commission on the Future of Care and Clinical Research in Autism report. That report stated that the term “profound autism” was critical to distinguish people who have high dependency needs from the more verbally and intellectually able population of people with autism. In reviewing several international datasets of people with autism, the Lancet Commission estimated that close to 30 percent of the autism population falls into the category of profound autism.

Children and adults with profound autism often require round-the-clock care to assist with daily living activities and to keep them safe from self-injurious behaviors, wandering and seizures. In her keynote address at the 2022 Autism Europe Congress, Dr. Catherine Lord, the George Tarjan Distinguished Professor of Psychiatry at the Semel Institute of Neuroscience and Human Behavior at the University of California, Los Angeles, reported results of a 30-year long longitudinal study that showed that the outcomes of people with profound autism are drastically different and far worse than the outcomes of those who are higher functioning.

“We need to know how many people have profound autism so that we can properly plan for their school and residential needs and improve the services they receive,” said Alison Singer, president of the Autism Science Foundation and co-author of the report, “Their needs are going to be very different than those of an autistic person graduating from Harvard Law School.”

Escher warns that the data not be misrepresented. “Some news outlets are equating ‘non-profound’ to ‘high-functioning’ when this is clearly untrue. Having an IQ 50 or over hardly qualifies as high-functioning," she said. "This data is a radical undercount of ASD children with obvious and severe disability."

NCSA Comments on the 2022 National Strategy to Support Family Caregivers

NCSA submitted the following comments in response to ACL’s call for comments on the 2022 National Strategy to Support Family Caregivers.

Alison Barkoff
Principal Deputy Administrator
Administration for Community Living
330 C St SW
Washington, DC 20201
Via email: Alison.Barkoff@acl.hhs.gov

November 21, 2022

Re: NCSA comments on the 2022 National Strategy to Support Family Caregivers

Dear Ms. Barkoff and friends at the Administration for Community Living:

Thank you for giving us this opportunity to comment on the 2022 National Strategy to Support Family Caregivers. National Council on Severe Autism represents the interests of individuals, parents, clinicians and caregivers affected by severe forms of Autism Spectrum Disorder (ASD or autism) and related developmental disorders. In our population, ASD, alone or with comorbid conditions like intellectual disability, is often a debilitating or even ruinous disorder, as it can compromise higher-order cognitive processes, including language, social comprehension, abstract thought and learning. According to the CDC, nearly 60% of U.S. children with autism have significant or borderline intellectual disability (Maenner et al. 2021).

In addition to the impaired ability to engage in activities of daily living, many in this population have challenging behaviors, including aggression, self-injury, property destruction, and elopement, psychiatric and medical comorbities such as seizures. Due to pervasive functional limitations, these individuals are unable to live independently, and are incapable of earning a living. They typically require 24/7 support, for their lifetimes.

Autism rates, including rates for those most severely affected, have been increasing precipitously over the past three decades, with the CDC estimating that 1 in 44 children now have the disorder. While the reasons for the dramatic increase in autism rates have not yet been identified, the phenomenon has been well described across the country. For example, in California's Department of Developmental Services, the autism caseload skyrocketed 50-fold over the past 35 years, from about 3,000 cases to about 158,000 today. The vast majority of this population is under age 30, with ever-larger cohorts aging into a stressed and overburdened adult care system each year.

For this burgeoning population of dependent children and adults the preeminent issue is sufficient caregiving, both near-term and long-term, and this of course includes parents and other family members.

Many parents and family members in our community are not just caregivers, but extreme caregivers. They often must leave jobs and careers in order to devote themselves to the welfare of their loved ones. They often suffer financial distress, isolation, depression, chronic stress, trauma, and physical injuries. They routinely face discrimination in the community and the care system, with many barriers to accessing needed supports for their loved ones, such as in-home services, appropriate clinical care, and vocational services. And they bear the burden of immeasurable worries about who will care for their loved ones as they age and pass away.

The future for caregivers for children and adults with autism has grown into an issue of monumental national urgency. Having reviewed the 2022 National Strategy to Support Family Caregivers we would like to provide the following comments that we hope will be reflected in future revisions.

(1) It is important that the Strategy specifically call out autism as a major area of concern for national caregiving policy, just as the report specifically calls out dementia, for example. Autism is the fastest growing disability among U.S. children, and it is rapidly eclipsing other disabilities in our developmental disabilities (DD) systems. Autism already represents 42% of the DD system in California and is poised to make up half the system within a few years,

(2) The ACL Family Caregiving Advisory Council should include a representative from the National Council on Severe Autism to ensure the needs of this large and growing community are represented and addressed.

(3) We agree that a Needs Assessment Survey is critically important. It is imperative that we develop better data about the scope and nature of the dependent autism population, the health and welfare of their family caregivers, and the supports needed by those with autism as their relatives who are primary caregivers decline in ability and pass away.

(4) We agree that data development should include infographics about caregiving by the CDC and other agencies, representing data such as prevalence of family caregiving in autism, characteristics of caregivers (for example, age, socio-economic factors, income), and tied to the severity of needs of their dependent loved ones.

(5) The report makes reference to role of caregivers in supporting DD adults who engage in competitive, integrated employment (CIE), but makes no mention of caregivers who support adults incapable of achieving CIE — which is the norm in our autism subpopulation. This is plainly discriminatory, based on the functional abilities of the dependent loved one, and this discrimination in favor of only one sector of caregivers should be eliminated from the report. Adults who engage in non-competitive employment, volunteer work, or day programs surely deserve equal respect and support. It is simply reality to recognize that many adults with autism and DD cannot achieve CIE.

(6) We agree that family caregivers who are employed need stronger supports and accommodations from employers to remain employed whenever possible. 

(7) Case management, as may be funded by state Medicaid programs, is vitally important to help family caregivers at all stages of their journey. We need robust case management that can ensure all adults disabled by autism have appropriate medical care, crisis services, support services, community services, and supported housing. This is a major issue that will intensify as the autism parent population ages.

We note that while the report makes multiple references to "linking family caregivers to information" about services, this is often an empty sentiment. If the services do not exist in reality, this is just lip service to the caregiver. The report must place more of an emphasis on the development and real accessibility to meaningful services and supports, and less on "information," "webinars," "toolkits" and the like. 

(8) We agree that veterans who are caregivers need maximum support from the VA to ensure they have the resources to fulfill their roles.

(9) The physical and mental health of caregivers is very important. If they are not healthy they cannot provide quality care for their loved ones. Medicaid programs should fully cover the healthcare costs, as may be necessary, for family caregivers who devote themselves to the support of dependent, disabled loved ones.

(10) We agree that listening sessions are a good idea. We ask for a listening session by ACL with the NCSA audience to ensure that our concerns are heard and addressed.

(11) We strongly agree that Medicaid-funded in-home support programs should entirely eliminate any bias against family caregivers. Qualified family caregivers should be entitled to the same benefits and wages as those who are unrelated performing the same tasks, when caring for disabled adults or disabled children with extreme needs. The approval of 1915(c) HCBS waiver applications to pay family caregivers is very important.

(12) We strongly agree that it is urgent to increase, strengthen and support the paid LTSS and direct support workforce. Family caregivers can only do so much or last so long. 

More work must be done to address recruitment, education, training, retention and career advancement of DSPs in all the states.

(13) Assisting family caregivers with financial planning is a very good idea. Perhaps this could be effectuated via the case management package, referenced above. Perhaps also consider more flexible use of ABLE accounts to address caregiver needs.

(14) We were very alarmed to see the issue of Guardianship receiving scant attention. Only "alternatives to guardianship" are mentioned in the list of federal actions, and only once. Guardianship (or conservatorship) is a vital tool to protect the legal interests of adults incapable of managing their own affairs. It goes without saying that most autistic adults in our community lack the legal capacity to make a delegation of authority via power of attorney or supported decisionmaking. The report must emphasize the vital importance of guardianship and the need to improve the support for, and monitoring of, guardians and conservators, particularly as these roles move from family members to professionals and unrelated parties. 

(15) Another notable omission from the report is that parents will themselves need long-term care while they still bear the responsibility of caring for their disabled grown children. This is particularly acute in the autism field, as children with autism will for the most part outlive their parents (this is often not the case with other developmental disabilities). The longevity of the burgeoning autism population represents an unprecedented challenge for caregivers and this inevitable collision of care systems and must be explicitly addressed in the report.

We thank you for your consideration of our comments.

Very truly yours, 

Jill Escher
President