Should we rethink the notion of the Autism spectrum?

The phrases “autism spectrum” or “on the spectrum” have become part of everyday language. They are often used as different ways of referring to someone who is neurodivergent. Before 2013, this was not the case, there were four separate diagnoses: autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, and pervasive developmental disorder. But has the breadth of the autism spectrum become unwieldy, and the phrase “autism spectrum disorder” such a broad term that differently abled autistic people often have little in common with one another?

Further complicating the matter, a new population recently emerged who identify as “autistic” without having a diagnosis from a qualified health care professional.

The Autism Spectrum

The term “autism spectrum” was coined in the 1980s by psychiatrist Dr Lorna Wing, whose work transformed how autism was understood in the UK. At the time, her “autism spectrum” concept was groundbreaking. Instead of seeing autism as a rare, narrowly defined condition, she recognised a wide range of traits and experiences.

When most people hear the word “spectrum”, they may picture a straight line, like colours arranged from red to violet. Applied to autism, this suggests autistic people can be ranked from “more autistic” to “less autistic”. But that’s not how autism works.

 

The legacy of Asperger’s

According to The Conversation, Dr Wing also introduced the term “Asperger’s syndrome” - Like the concept “profound autism”, using this term also divided autistic people into those with higher support needs and those with Asperger’s syndrome (lower support needs).

However, the label was drawn from the name of Austrian physician Hans Asperger, who in the 1940s identified a subgroup of children he called “autistic psychopaths”. During the Nazi period, Asperger was associated with a genocide of autistic people with higher support needs. For this reason, many autistic people don’t use the term any more, even if that is what they were originally diagnosed with.

Underlying all these debates is a deeper concern that dividing autistic people into categories, or arranging them on a spectrum, can slip into judgments about their value to society. In the most extreme form, such hierarchies risk dehumanising those with higher support needs. It’s something some autistic campaigners warn could fuel harmful political agendas.

Using the DSM-5 to diagnose Autism

In the US, health providers use a handbook called the Diagnostic and Statistical Manual of Mental Disorders (DSM) to diagnose mental disorders, including autism spectrum disorder (ASD).  The updated DSM-5 (fifth edition) no longer separate autism into different types. Rather, autism is now a single diagnosis — ASD — categorized by levels of severity: level 1, level 2, and level 3.

Level 1 Autism: Level 1 autism means you require support to redirect your restricted, repetitive behaviors and navigate social communication challenges. These challenges may include initiating social interactions or having difficulty interpreting and responding to social cues.

Level 2 Autism: People with level 2 autism experience significant delays in both verbal and non-verbal communication and require substantial support. Impaired social functioning makes it challenging to form and maintain relationships, even with the proper support. 

Level 3 Autism: People with level 3 autism require very substantial support to address severe impairments in many areas of everyday life. Verbal and nonverbal communication is severely limited in people with level 3 autism. 

(You can read more on the DSM levels here)

Using the ICD-11 to diagnose Autism

The ICD-11 is the 11th revision of the International Classification of Diseases, the global standard created by the World Health Organization (WHO) for health professionals to diagnose, report, and monitor diseases, injuries, and causes of death. The ICD-11 defines Autism Spectrum Disorder (ASD) as a single condition characterized by persistent deficits in social communication and interaction, along with a range of restricted, repetitive, and inflexible patterns of behavior, interests, or activities.

(The full ICD-11 criteria for autism are available here)

 

What is Profound Autism?

According to Autism Awareness Australia, profound autism is a way of recognising people with the most complex, lifelong support needs. Many are non-speaking or minimally verbal. Many live with intellectual disability. Most need intensive support, often across the entirety of their lives.  

The Profound Autism Alliance defines profound autism as a term intended to provide clarification about autistic people who:

• Require 24/7 care from an adult caregiver throughout their lives;
  Present with an IQ below 50;
  or have minimal or no language.

Based on a study by the Lancet Commission published in 2021, the Centers for Disease Control released their first prevalence study on profound autism in April 2023.

The research concluded that 26.7% of 8-year-old children with autism have profound autism and compared with children with non–profound autism, children with profound autism were more likely to be:

• female;
• from racial and ethnic minority groups;
• of low socioeconomic status;
• born preterm or with low birth weight;
• have self-injurious behaviors;
• have seizure disorders;
• and have lower adaptive scores.

The Profound Autism Alliance also argues for the use of the term, because:

• People with profound autism consistently experience unique, devastating, and often unseen challenges that require solutions, not only for them but for their caregivers.
• Research indicates that the proportion of studies that included those with profound autism has decreased significantly over time. 

They believe that "the continuing recognition of profound autism will open the doors to more inclusive research. Only then can targeted advocacy increase access to critically needed supports and services for this marginalized population."

The argument for and against different diagnoses

Since autism’s earliest descriptions in the academic literature, researchers and clinicians have framed it as a medical disorder, with a set of symptoms to be treated. Many autistic people and their families have instead embraced the view that their difficulties lie not with their autism, but with a society that isn’t built to support them.

 Robert Naseef, Clinical Psychologist, Author, and Parent of a non-verbal adult autistic son argues that the label of “Profound Autism” does not add to understanding the complex support needs of the heterogeneous group of individuals with both Autism and intellectual disabilities. All functioning labels, including “severe autism” and “high functioning autism” actually harm people.

Self-advocates Shannon Des Roches Rosa also go to great lengths to explain her view that Profound Autism is segregation and not progress.

Naseef believes that the concept of neurodiversity has shown great promise in uniting people from all walks of life across race, class, ability, diagnosis, etc. He says that:
"Like many other groups pushing for change and social movements, the autism community has had numerous splits and factions. We don’t need more of that. I do meet some parent advocates who feel left behind as the stereotype of autism in the mainstream media has shifted from the non-speaking to the self-advocates."

According to Naseef, we need to unite as a diverse community of Autistic people, parents, professionals, and researchers and focus on every autistic person’s human right to access individualized, person-centered services that identify specific needs and personalized supports in their communities.

But, according to Alison Singer, president of the Autism Science Foundation, families like hers who face profound autism have advocated for this distinction for quite some time. She acknowledges that labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, she have seen numerous instances in which hurtful or inaccurate labels have been applied to her daughter. Yet, she believes that there are times when using accurate labels can dramatically improve the lives of those with autism. 

The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need.

She also says that: "It is time to admit that lumping everyone together along one spectrum has created rancor and ill will. There are real-world implications for people with profound autism when high-functioning advocates seek to defund and deprioritize medical research, block access to treatment and clinical care, censor necessary and accurate scientific language, and advocate for policies that cause real harm to those who will not and cannot ever live independently. Only by returning to at least two separate diagnoses can we begin to meet the highly diverse needs of both groups."

Conclusion

I have seen how the classification of autism as a single diagnosis has helped both my children to get the support they need. And, the fact that we are all grouped together has allowed those of us with lower support needs to advocate for and draw attention to those with much higher support needs

But, at the same time, I wonder how many people that self-identify as autistic have ever come into contact with someone that is non-verbal and require 24/7 support? Their lives are very different and their need much higher. With limited services and support available to the autism community, are we taking up resources that should be for them?

I don't know what the answer is.