World Autism Awareness Day: It’s Time To Listen To Those On The Spectrum

When I was first asked to write to increase awareness for World Autism Day, I was elated. However, this feeling was quickly replaced by a sense of fear that I might contribute to the misrepresentation.

Though I serve those on the spectrum, I myself am not autistic. What do I know about it other than providing “treatment,” which to be perfectly transparent, is controversial to some of the autistic population? Nonetheless, there are still disparaging levels of stigma and an immense lack of awareness surrounding an Autism diagnosis, especially within our Muslim community, which I would like to try to dispel.

What is Autism?

Autism, or autism spectrum disorder (ASD), according to the CDC, is characterized as a developmental disability that may cause significant social, communication and behavioral challenges for an individual. Previously, ASD was separated into different diagnoses, which are now included under the ASD umbrella: pervasive development disorder not otherwise specified (PDD-NOS), Asperger Syndrome and autistic disorder.

According to the World Health Organization (WHO), an estimated 1 in 160 are diagnosed with Autism globally, and here in the U.S. it’s 1 in 54. Before health insurance accepted ASD as a diagnosis, to access some therapies such as Applied Behavior Analysis (ABA) and affordable services those with ASD had to prove some form of traumatic brain injury.

Chances are if you don’t already know someone on the spectrum, you know someone who does. ASD does not discriminate. It occurs across all racial, ethnic and socioeconomic groups, but is more prevalent among males than females — possibly because the diagnosis is based on white male traits and so may look completely different for females.

Pictured: Jim Parsons as Sheldon Cooper in the Big Bang Theory

Signs and symptoms of autism primarily include difficulty with social communication and social interactions of varying severity. In severe cases, this may mean an inability to live independent and functional lives. Often Autism is depicted by savant-like TV show characters such as the Rain Man, or Sheldon from The Big Bang Theory.

These characters invariably come off as quirky, communicative and highly skilled with their individual gifts. However, this is not an exhaustive representation. While autism has no marked physical difference that would set people apart from others, some may communicate, interact, learn and respond in ways that are different from the general population.

Pictured: Dustin Hoffman and Tom Cruise in Rain Man

 

Research suggests that autism has no actual “cause” and develops from a combination of both genetic and environmental influences which may increase the likelihood of diagnosis. If you think someone you know might have ASD or that there are play, learning, speaking, or behavioral barriers, recommend reaching out to that individual’s doctor so that these concerns can be shared, or ask for a referral to a specialist who can do a more in-depth evaluation such as a developmental pediatrician, child neurologist, or child psychologist.

Moving From Awareness To Acceptance

Now that we all know what Autism is, it is imperative that we move from discussions of awareness to acceptance. In order to do so, we need to talk about the neurodiversity movement which destigmatizes and expands what is viewed as “normal” and “acceptable.” So people with ASD, Tic Disorders, Intellectual disability or Attention Deficit are not abnormal they just think differently and perceived deficits need to be reframed as strengths. For instance, we could see perseveration as having deep focus and concentration or absorbing and retaining facts.

There are some hot button topics in this field, such as using person-first versus identify-first language (e.g., Person with autism versus Autistic person). The individuals I have spoken to express a preference to be called an Autistic person, as they feel it is a part of their identity and nothing that needs to be fixed. This leads to the controversy surrounding the autism symbol itself — the puzzle piece originates from the idea of sufferers of  a “puzzling condition.” Autistic advocates don’t see they have a ‘missing’ piece and prefer the infinity sign instead (gold for autism as the elemental symbol is Au, or a rainbow for neurodiversity).

As a practitioner I consciously avoid using terms such as high- versus low-functioning because research shows such labels can infantilize people, taking away their agency or access to accommodations and services. For the most part, it is best to use functional labels that describe what the individual is able to do.

A big part of the problem regarding current therapies is that treatment goals focus on ableist goals and compliance. Critics say this leads to ‘masking’ (being forced to hide your feelings,) so instead of helping individuals function better within society, they are being taught to fake it to make society feel comfortable around them. This can create an adverse psychological effect and it’s believed to contribute to their three times higher suicide rates than the average population, and even higher than that in females.

What We Can Do

The first step is to educate ourselves and those around us. Continue to raise awareness and acceptance simultaneously. If you are a professional within the field, we can help reframe a parent or caregiver’s child’s autism from a problem to be solved to a part of them to be embraced and supported. When creating goals, build on the child’s strengths, ensuring the autistic person remains true to themselves, while still being able to function within society comfortably.

We can also learn more about autism from autistic people. The diagnosis does matter in treatment. However, behavior should be addressed based on neurology, and their lived experience should be heard and valued. This means that as practitioners we should make sure we are including them in their goal development and teach them self-advocacy and self-regulation skills so that they have agency.

As a community, we can also amplify autistic voices by being there to listen and learn and sharing their information with the community around us. Finally, we can follow people, pages, and groups such as Alfie Kohn, Autism Level UP, Neurodivergent Rebel, Unmasked, or the Autisticats to name a few. 

It is not my intention to speak for the autistic community, and it is important to note that everyone’s lived experience may not be the same. However, I am dedicated to learning and growing in my understanding, and a part of that is asking questions and starting dialogues like these.

Note: Additional information about risk factors can be found on the autism speaks website at Autism Speaks, or on the CDC website.

Naureen Surti, M.Ed., BCBA, LBA has a M.Ed in Special Education with a specialization in autism intervention and ABA from The University of North Texas. She has been in the field of ABA for the past 16 years, and a Board Certified Behavior Analyst for 6 years.