Pinning down ‘profound autism’ for reliable research
https://www.thetransmitter.org/spectrum ... ew-siegel/
A clear and actionable definition for the term could enhance research and improve care, Matthew Siegel says.
By Katie Moisse
13 June 2024 | 7 min read
6
comments
https://doi.org/10.53053/WTUU4152
Cite this article
Portrait of Matthew Siegel sitting on a staircase.
Best definition: Matthew Siegel is working with a large group of researchers, clinicians, autistic people and advocates to reach a consensus on “profound autism” and how it should be measured.
Photography by Webb Chappell
Headshot of Katie Moisse.
Katie Moisse
Contributing editor
The Transmitter
Share this article:
Facebook - opens a new tab
Linkedin - opens a new tab
Mail - opens a new tab
Share more - opens a new tab
Tags:
Spectrum, Aggression, Autism, Diagnostic tests, Health care, Intellectual disability, Language, Profound autism, Q&A, Treatments
The term “profound autism” describes autistic people who need around-the-clock supervision and support with activities of daily living. The Lancet Commission on the Future of Care and Clinical Research in Autism coined the term in 2021 to address the unique challenges and needs of a swath of the autism spectrum that is underrepresented in research.
But putting the definition to good use has proved challenging. Although the Lancet commission stated that most people with profound autism have intellectual disability, minimal language or both, researchers have relied almost exclusively on measures of cognitive and verbal abilities. What’s more, those measures vary dramatically among studies.
Measuring adaptive functioning—a person’s ability to carry out activities of daily living—would make it easier to compare findings across studies, says Matthew Siegel, chief of clinical enterprise in the psychiatry and behavioral sciences department at Boston Children’s Hospital. It would also highlight opportunities to support people with profound autism and their families.
To this end, Siegel is working with a large group of researchers, clinicians, autistic people and advocates to pin down the term “profound autism” and reach a consensus on how it should be measured.
The Transmitter spoke with Siegel about the process and why it’s so timely.
The interview has been edited for length and clarity.
The Transmitter: If profound autism is defined as needing support with activities of daily living, why are researchers relying on measures of intelligence and language ability rather than adaptive functioning?
Matthew Siegel: Perhaps out of convenience in terms of what data are readily available. The Centers for Disease Control put out a pretty important publication last year where they concluded that 26.7 percent of their sample would meet the criteria for profound autism. But they operationalized the definition using intelligence quotients and a measure of communication status. They didn’t use a measure of adaptive functioning.
”
Between 1990 and 2013, the proportion of studies that included [people with profound autism] dropped from 95 percent to 35 percent.
— Matthew Siegel
This is important because in relying solely on measures of cognitive and verbal ability, we might be missing people with profound autism who can’t be left alone—people who have higher cognitive and verbal abilities but challenging behaviors, such as physical aggression or self-injurious behavior, for instance. Both of these are associated with low adaptive functioning.
TT: What data exist that support measuring adaptive functioning alone?
MS: We did a study in our Autism Inpatient Cohort, which includes more than 1,500 people. If we defined profound autism using a cut-off for IQ, a cut-off for communication ability or a cut-off for adaptive functioning, we found that 72 percent of the sample met the criteria. If you drop the IQ option, that percentage only went down a little bit, to about 70 percent. And if you drop the communication measure, it went down about the same amount.
Those findings suggest that adaptive functioning alone provides much of the information you would have if you used all three measures. And it keeps us focused on what I think matters the most, which is how people are functioning and what supports they need. IQ and measures of communication status don’t really get at this.
TT: How do we measure adaptive functioning?
MS: There are two widely used measures: the Vineland Adaptive Behavior Scales and the Adaptive Behavior Assessment System. They both cover the whole lifespan and are widely used in the field.
We did a recent analysis looking at 367 autism treatment studies between 1990 and 2013. We found that in the areas of IQ and of communication, researchers were using an unbelievable variety of measures—about 30 different measures for each. The one area where there was broad agreement was in adaptive functioning, where something like 90 percent of the studies used the Vineland.
TT: What does the Vineland measure?
MS: It includes very practical questions about a person’s ability to function in the world. They go from questions about being able to tie your shoes or dress yourself to things that are more abstract, like understanding the concepts of money or time.
TT: Does the Vineland overlap with measures of intelligence or verbal ability?
MS: There is a relationship between the Vineland and IQ measures, yes. And there is some direct overlap with communication, as part of the Vineland asks about communication ability.
Portrait of Matthew Siegel standing in an elevator.
Profound process: Measuring adaptive functioning—a person’s ability to carry out activities of daily living—would make it easier to compare findings across studies, Siegel says.
TT: What are the next steps for the field?
MS: I’m part of a group that’s launching a consensus process using the Delphi methodology, a scientifically validated method for developing consensus around a question or an issue. That effort is launching in the next couple of months, and we’ll seek input from a wide range of people—clinicians, researchers, autistic people and advocates. I think it’s critically important to take this approach because it will lead to the best definition. If you have broad representation, the consensus you produce represents a broader group of people.
TT: Is there a consensus that profound autism is a category of autism that warrants special support?
MS: I think most people would agree there’s a group of people with autism whose needs, challenges and outcomes are distinct from those of the rest of the spectrum. A recent study looked at people with autism over three decades and found those with profound autism had different outcomes in almost every domain—employment, independent living, friendships and more. I think it’s reasonable to assume that if a group has very different outcomes, they likely need very different supports—very different interventions.
The spectrum is broad and important in its entirety. Different parts of the spectrum need very different kinds of support. Someone with profound autism might need to live in a residential treatment setting with constant access to an adult; or in their family home, they might need in-home services from behavioral health technicians who assist with activities of daily living.
TT: Are there other questions that need to be explored?
MS: We need to wrestle with the age at which we should use the term profound autism. The Lancet commission said it should not be used for children under 8 because cognitive and verbal abilities are not stable yet. But a recent study found that adaptive functioning prior to age 6 is highly predictive of your adaptive functioning at 13.
TT: Autism prevalence has increased. Is there evidence that the prevalence of profound autism has increased?
MS: We don’t know for sure. It’s clear that most of the rise in prevalence of autism over the past two decades has been in the non-profound group. There’s a number of reasons for that, not the least of which has been the diagnostic expansion of what autism is. I think most people would say there appears to be some increase in the prevalence of profound autism, but there’s a lot of debate about how much and what it represents.
It’s also worth noting there are fewer and fewer studies including people with profound autism. Between 1991 and 2013, the proportion of treatment studies that included this group dropped from 95 percent to 35 percent. And I don’t know for sure, but I think that trend has likely continued.
TT: There is evidence that early intervention can lessen the intensity of certain autism traits. Is this the case for profound autism?
MS: This is a key question, because we don’t just want intervention; we want targeted intervention. It’s a challenging question, too, because once something moves into the diagnostic lexicon, then you start interfacing with the world of health insurance in the United States. We don’t want to create a situation in which health insurers use the presence or absence of the term “profound autism” to approve or deny certain services for people. That’s not something we can control, but it’s certainly something we need to think about.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 36,113
Location: Long Island, New York
The article is correct in pointing out profound Autism and cognitive and verbal disabilities are not synonymous.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
My issue with the term "profound autism" is that it essentially means "autism plus intellectual disability and/or verbal disability." In other words, it is not necessarily the autism per se that is "profound," but rather the conjunction of autism plus other developmental disabilities.
So it seems to me it should be called "profound multiple developmental disability" or maybe "profound complex developmental disability" (with the recognition that autism is one component) rather than "profound autism." Or maybe resurrect the term "pervasive developmental disorder" to refer to severely disabling combinations of developmental disabilities?
_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
So it seems to me it should be called "profound multiple developmental disability" or maybe "profound complex developmental disability" (with the recognition that autism is one component) rather than "profound autism." Or maybe resurrect the term "pervasive developmental disorder" to refer to severely disabling combinations of developmental disabilities?
I understand what you mean but the main problems with the idea of creating a new label, i.e "profound multiple developmental disability" :
1. The disorders are separated on paper to make it easier for medical services to deal with the relevant disorders individually, i.e some people with ASD & ADHD might do well on ADHD meds, maybe there is a new learning tool for those with ASD + ID.
Biology & genes however dont work like that, the same genes that cause some autisms also cause ID or epilepsy etc..so they are not separated in real life only on paper.
Scientific links showing this:
https://www.biorxiv.org/content/10.1101/715755v1
https://www.nature.com/articles/s41398- ... 63-7#Sec27
https://www.ncbi.nlm.nih.gov/books/NBK573607/
Some simple quotes if you don't want to read all of it:
2. There is no real cut off, or identifying one is difficult its not black & white, profound autism / ok autism for example.
As the below article suggests profound autism should really be expanded to include more than just 26%, maybe nearly half or more if you consider real living skills & normal IQ.
Your back to the same issue with Autism / Asperger's, drawing the line is considered too difficult.
In other words its a tangled mess and science has so far failed to identify peoples needs correctly or properly diagnose the different conditions
https://www.ncsautism.org/blog//the-pro ... und-autism
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
Having been raised with Non verbal sister,,but with much effort could finally get her basic needs met , even some understanding sometimes . If the """ Individual """. emphasized for examination by an individual assessor or support person
has much patience . My sister did not make effort to / or could not always process information through a rote calculation method of interpeting words .
On her average day . These test or studies seem very much to draw on information from interacting with groups of Autistic individuals . Not to coin a old adage , " when you meet one Aspie, you have only met one Aspie ."
These studies need to be done individually..Then cross reference results .If indeed there is a need to form generalities.
Literally to get an inkling of a whats , what with a non - verbal . first most, Trust has to be shared by the studied individual and the interviewing person . ( And your insane ,if you thinking this can be done just offhand) am referring
to profoundly non verbal since birth . My primary extended life experience with this type of Aspie . Am pretty sure these Type of Aspies rely on a hieghtened sense of intuition . From personal experience. And would benefit from a extremely supportive environment....One on one limited interaction at the pace of the Aspie being engaged
In addition to this, a interveiwer, worth their certificate in Psyche stuff,Would get a family history , hopefully from multiple sources .
And of course this might cost money ...but we are sending people to space , and making giant International atom smasher .( Hedron collider) ...And a Kabillion dollars on Warfare ,Universal basic income ,....And Aspies do not represent a huge part of the population. So it could cost much less . And their are lots of peeps out there whom can use intuition and empathy quite
regularily. Ideal for working with non verbals, if they have alittle patience, or understand the gravity of their work
And be paid .. Large amount of money , to be able to get a more accurate picture of these people in real life.
And. perhaps. figure guidelines to help them,for development.
( but I am being presumptous ,perhaps they are already doing this.).
_________________
Diagnosed hfa
Loves velcro,
At the moment scientists are concentrating most of their efforts for neurodevelopment disorders on the genetics side.
All kids in the Uk presenting a serious ND disorder are given whole genome sequencing.
This picks up about 30% of cases where a harmful genetic mutation is found
What on the past would have been dumped lazily in the “autism” category by clueless assessors is now labelled one of the many weird and not so wonderful conditions usually named after the person who discovered it or the gene itself.
It still leaves about 70% where nothing is found even among the most seriously affected.
No doubt that 30% will grow and the autism sausage will be salamified further in the future.
What will be left as autism who knows maybe nothing eventually
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
Imagine being kicked out of Alcoholics Anonymous because they didn't think you drank enough. (See above, this time quite literally.)
What is autism? A few behaviours questions on a bit of paper that need to be fulfilled?
If there was a universal level of symptoms and disability then call it autism otherwise the condition is too broad to be logically thought of as the same thing
There’s also a huge inequality of disability, even if you think Ellon Musk has ASD, how can his problems be reasonably compared to those with severe symptoms that are unable to do anything themselves.
A person may as well say everyone who lived in Rome under the empire lived in luxury when that obviously isn’t true.
_________________
"The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends upon the unreasonable man."
- George Bernie Shaw
Similar Topics | |
---|---|
CBS video story about facility for “profound” autism |
07 Dec 2024, 12:13 pm |
Research survey: Discover new presentations of autism |
06 Dec 2024, 12:22 am |
I want to be a research technician and may drop my PhD |
25 Nov 2024, 1:28 pm |
Research on Self Identification - Call for Participants |
26 Sep 2024, 6:08 am |