Presented by Brittany Ashmore, M.S, LMFT
“Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, “I wish my child did not have autism,” what they’re really saying is, “I wish the autistic child I have did not exist,” This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure…That your greatest wish that one day we will cease to be, and strangers you can love will move in behind our faces."
- Jim Sinclair, Autism Network International Newsletter, 1993
Most eating disorder providers will be familiar with the Health At Every Size (HAES) initiative, which was a significant paradigm shift in attitudes toward body size in eating disorder treatment. HAES actively challenges weight stigma, discrimination, and negative stereotypes that can act as a barrier to eating disorder treatment for those with larger bodies.
When it comes to neurodiversity, there is a similar shift away from the pathology paradigm. Eating disorder care providers are asking key questions about the society we live in and the beliefs that we hold towards the neurodivergent population, such as:
The neurodiversity movement is essential in the paradigm shift. The grassroots movement places importance on the lived experiences of neurodivergent people, viewing them as the experts of their own experiences. It encompasses all diverse brain types, i.e., any neurodivergence, including autism, bipolar disorder, dyspraxia, ADHD, and more.
The neurodiversity movement has seen an increasing number of individuals use identity-first language and honor autism as an identity, i.e., instead of referring to themselves or others as a “person with autism,” they use the term “autistic” to describe themselves or others. The majority of autistic adults believe that autism is a key part of their identity.
Looking at autism through a neurodiversity-affirming lens challenges and dismantles the stereotypes and stigma that have been historically associated with this neurotype. Also, it reinforces the belief that autism is a neurological difference that is a natural and valuable part of human diversity.
Research has shown that autistic individuals have higher rates of health problems throughout childhood, adolescence, and adulthood, which may result in an elevated risk of early death.1 Common medical complications for autistic people include (but are not limited to):
Autistic adults have a shortened life expectancy compared to the general population. Studies have suggested an average life expectancy between 36 and 54 years of age, with a median of just 39 years. This is significantly lower than the 79-year life expectancy of the general population.1,2
Among the leading causes of death are heart disease, cancer, suicide, accidents (such as accidental poisoning or choking on food), and complications due to medication side effects.1
Review research indicates that the prevalence of autism in patients with an eating disorder is 23% on average across studies, with the highest rate being 30%.3 Individuals with eating disorders that have autistic traits are more likely to experience chronic and long-lasting eating disorders, as well as poorer outcomes than their neurotypical peers.3
Accessibility issues for autistic patients can serve as significant barriers to treatment. Healthcare providers may not take into consideration aspects of the treatment environment that can be challenging for those with autistic traits, such as:
Ableism can also cause issues for autistic patients, for example:
These barriers to treatment can mean that an autistic person with an eating disorder may seek treatment later in disease progression. Furthermore, once they are in treatment, their autistic traits are more likely to be labeled as “treatment resistant” as the standards of eating are often derived from neurotypical people.
Then there is the “Double Empathy” problem. Simply put, the Double Empathy problem suggests that when people with very different life experiences interact, they will struggle to empathize with each other.4 Research shows that non-autistic people struggle to read the emotions of autistic people or form negative first impressions of autistic people,4 which would undoubtedly have an impact in a healthcare setting.
These issues surrounding accessibility highlight the importance for healthcare providers to have an awareness and understanding of the autistic population.
Much of the history of autism research focuses on finding a cure and a cause rather than looking at it as a difference. In the early days of research, there was a distinct lack of diversity in the sample, i.e., the majority of participants were white children with privileged backgrounds. These studies formed the foundation of the DSM diagnostic criteria for autism.
Historically, autism has always been approached as a deficit and measured as a deviation from “normal.” The eugenics movement of Nazi Germany saw autism traits as “undesirable” human qualities and something to be eradicated. Still, some may be surprised to know that there has been marginalization of the autism population in our more recent history.
An example is the controversy surrounding what by some is still considered the gold standard of autism care—ABA therapy. Many practitioners criticize Applied Behavior Analysis (ABA) as it is too focused on eliminating behaviors instead of building skills, which is viewed as trying to make those with autism fit neurotypical standards.5
The majority of the current diagnostic criteria for autism describe the outward behaviors that typically occur when an autistic person is in distress. This is extremely limiting and does not account for:
For an idea of what a new perspective may look like, Matt Lowry, a psychologist and advocate for those with autism, has —somewhat playfully—rewritten the DSM-V diagnostic criteria from a strength-based perspective, which can be found in the meme gallery of his website.
Masking is a term that describes hiding autistic traits, differences, and needs to appear more neurotypical. It requires a tremendous amount of effort in scripting, planning, and practicing interactions internally and causes a great deal of anxiety. Masking is known to be detrimental to mental health, contributing to burnout, identity crises, and feelings of shame.
Autistic individuals engage in masking in an attempt to protect themselves from social judgments and due to the pressure to conform to neuronormativity. High-masking individuals are unlikely to be identified as being autistic if healthcare providers only know the stereotypical “symptoms” of autism.
Intersectionality considers how a person can experience a variety of identities, be it around neurodiversity, gender, class, gender, sexuality, or otherwise.
As providers, what does it look like to shift from being ill-informed about autism to being in an allyship with autistic people? To work collaboratively with autistic clients, there needs to be some important mindset shifts to incorporate into healthcare in general and in eating disorder care:6
It’s worth reinforcing that for eating disorder patients who have autistic traits. The overlap is associated with chronic and long-lasting eating disorders, as well as poorer outcomes than their neurotypical counterparts.3