Every parent worries about their children. How will they do in school, how do I keep them healthy, how do I help ensure they have a better life?
Today, 1 in 36 families will discover they also must learn about how autism spectrum disorder (ASD) will affect their child’s life. And of that group, between 30% and 50% [1] will learn that their child’s ASD is severe or profound and complicated by co-occurring intellectual disability, resulting in the need for their child to have lifelong care long after the parents are gone.
This group of people represents a significant portion of the individuals served by organizations like Catalight. But portrayals of autism in popular culture sometimes show a different story: very bright autistics who are expert mathematicians and medical professionals. It is estimated that about 50% of people on the autism spectrum have average or above average intellectual abilities; those who have superior intellectual abilities are only a small group (Katusic et al., 2021). The portrayals of very bright people with autism overshadow the realities of the many families that we support in our clinical practice.
ASD has not existed as a diagnosis for most of human history and was not established as its own diagnosis until 1980. But, perhaps in efforts to help individuals with ASD and their families’ overcome stigmas around the developmental disability, society is retrospectively suggesting that famous people, such as Albert Einstein, Wolfgang Mozart, Andy Warhol, Michelangelo, and Sir Isaac Newton, among many others, are thought to have had autistic tendencies. [2]
These speculations, and the many contemporary television shows and movies portraying very bright autistic individuals, can leave groups within the autism community feeling marginalized—people with severe or profound autism and their families may feel unseen and unheard.
What is Severe Autism?
There is no set, agreed-upon definition of severe autism. The National Council on Severe Autism (NCSA) considers severe autism to be individuals who “satisfy the diagnostic criteria of the DSM-5, and who, by virtue of any combination of cognitive and functional impairments, require continuous or near-continuous, lifelong services, supports and supervision.”
The “Lancet Commission on the Future of Care and Clinical Research in Autism” report, released in 2021, stated that the term “profound autism”–often used interchangeably with severe autism–is needed to distinguish people who are very likely to need substantial support throughout their lives, but who still have opportunities for improved quality of life through positive daily activities, supported independence in everyday actions, and social contacts. [3] Importantly, co-occurring conditions such as ID and minimal language abilities add to disability severity in individuals with severe or profound autism.
Regardless of the term, it’s important to remember that a proportionately small percentage of individuals on the spectrum may be applying to medical school or making scientific breakthroughs, while a larger group of autistic people with average intellect can independently live their lives. Meanwhile, families of those with severe autism face major day-to-day challenges, like self-harm patterns that result in hospital visits and lost employment and income because caregivers have to spend much more time caregiving than working.
Those major day-to-day challenges for children with profound autism include [4]:
- aggressive behavior (52.7%)
- low adaptive functioning score ≤70 (79.4%)
- self-injurious behavior (36.5%)
- seizures or seizure-like behaviors (31.0%)
And it’s not just popular culture and society’s tendency to focus on autistics with average or above average intellect—some data show children with severe ASD are also being left out of research. One study showed, as of 2019, the proportion of studies involving children with severe autism had consistently fallen over the previous three decades. [5]
Has the Spectrum Gotten Too Wide?
As written above, the Centers for Disease Control and Prevention (CDC) recently reported that, based on the latest data, the prevalence of autism spectrum disorder in the United States has now risen to an all-time high of 1 in 36 children. [6] In California, the data show it is now 1 in 22. [7]
In 2013, when the Diagnostic and Statistical Manual (DSM-5) criteria for autism spectrum disorder (ASD) was released, it broadened the definition of autism so it would apply to a wider range of people. Much of the growth in ASD diagnoses may be related to the increase in high-functioning ASD diagnoses which had previously been unrecognized. According to the NCSA’s position statement on Diagnostic Labels, this change “has had the effect of rendering the diagnosis essentially meaningless, as it allows for the same diagnosis to be given to wholly disparate individuals.[8]”
That has led many parents, advocacy groups and other stakeholders to campaign for a separate diagnostic label of severe autism.
The Catalight Approach
Catalight, one of the largest behavioral health networks in the U.S., delivers person-centered care across the ASD spectrum. Its clients include more than 12,000 individuals and families, treated with the philosophy that one size does not fit all.
That’s especially important in working with the families of people with severe ASD. Every individual with ASD is unique, with a wide range of circumstances and needs. In people with severe ASD, that is especially true. Catalight works with families to design personalized treatment plans that are as unique as the individual, their needs and their family’s needs.
Catalight offers highly flexible programming and modalities of care. Catalight Connect, for example, is a caregiver-mediated program designed to improve the wellbeing of people with profound intellectual multiple disabilities (PIMD) and their families. With the support of a Catalight Connect clinician, parents learn how to teach their child new skills while better connecting to their child’s needs and wants.
Catalight’s North Star is meaningful outcomes for individuals and their families. One of the key ways we measure this is through groundbreaking research into new modalities of care. Catalight has also developed a proprietary set of surveys and scales to gauge the overall wellbeing of families and the individuals with ASD – these are outcomes focused not on outward behaviors but instead on markers that show overall happiness, satisfaction with life, and positive outlook on life.
It remains to be seen what will happen with diagnostic labels for ASD. Whatever changes may happen, Catalight’s purpose remains the same: provide the highest quality person-centered care, while tailoring treatment to what will drive the best outcomes and overall wellbeing for each unique individual and their family. In the case of profound autism, the realities of the day-to-day challenges, and the clinical differences, deserve to be recognized.
[1] Frequently Asked Questions
[2] History’s 30 Most Famous People with Autism
[3] The Lancet Commission on the Future of Care and Clinical Research in Autism
[4] The Prevalence and Characteristics of Children With Profound Autism
[5] Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies?
[6] Data and Statistics on ASD
[7] Autism Data Visualization Tool
[8] NCSA Position Statement on Diagnostic Labels: The Need for Categorical Recognition of Severe Autism in the DSM
