Disorder or Difference? The Ongoing Autism Debate

In honor of Autism Acceptance Month, Healthnews takes a closer look at the controversy surrounding whether autism is a disorder or a neurodivergence that society should unconditionally embrace and accept.

The scientific, medical, and neurodivergent communities have debated the true definition of autism for decades. This ongoing conversation primarily centers on whether autism is a medical condition that needs to be “fixed” or a neurodiversity with traits that society should embrace.

These two opposing views are often clinically referred to as the medical and social models of autism.

In general, medical models align with the idea that autism is a disorder that needs to be fixed or treated, so the person functions more effectively in society. In contrast, the social model suggests that an autistic individual’s brain is wired differently and that society should accept and accommodate these differences instead of requiring autistic people to change themselves to fit societal expectations.

These differing opinions have caused confusion among researchers about how to describe autism and autistic individuals in their scientific papers. For example, is it autistic symptoms or traits? Disabilities or challenges? Autistic person or person with autism?

These opinions have also caused controversy over therapies like applied behavioral analysis (ABA) — an evidence-based intervention designed to teach autistic individuals new skills to reduce unwanted behaviors.

One of the main criticisms of ABA is that it’s focused on teaching autistic people to behave in a way that is considered "normal" or neurotypical rather than respecting their individual differences and neurodiversity.

To explore these opposing views further, Healthnews spoke with the experts on the subject.

What people with autism have to say

Golden Globe award-winning TV and Film Producer and Stone Village Films President Scott Steindorff, who is autistic and has ADHD, is currently producing the documentary, Understanding Autism, scheduled for release in 2023. He is also finishing up the production of another documentary called ADHD: Wired Differently.

During the last five months of filming Understanding Autism, Steindorff has conducted hundreds of interviews with psychiatrists, doctors, schools, families, and autistic people across the spectrum.

I really believe in acceptance, you have to accept people that have neurological differences, and they should be treated with love and respect.

Scott Steindorff

Steindorff believes changes are needed, especially with ABA therapy. “There are elements of it that are okay, [for example] from age one to four teaching kids the alphabet, but after that, they're trying to take neurodivergent children and make them neurotypical,” he explains.

“You know, if you're a duck, you're a duck — you're not gonna turn me into a goose.” Steindorff says.

Steindorff says he understands that many people rely on ABA because that’s the only therapy some insurances reimburse. But he highlights the need for better therapies and programs.

"Teaching kids how to regulate their emotions, identify their feelings, process and understand those feelings, and learn how to express them," Steindorff says, is more helpful than ABA, as learning about emotions has changed his life for the better.

Still, he notes that the lack of autism services and medical professionals that understand autism in many regions across the country is a significant barrier for autistic people.

Tori Clarke, artist, illustrator, and motivational poet in the autistic community in the United Kingdom told Healthnews, “Some people think autism is a learning style, but it’s more of a way of 'being.'”

She says, “An autistic brain takes in messages from the world very differently, and sometimes there are no messages at all, and it can feel like big chunks of life’s explanations are missing.”

Imagine hearing two different songs playing simultaneously in your head, whilst your brain is constantly talking to you — and when you close your eyes, you see patterns moving and swirling around. That’s the fun side, and as long as you have nothing else to do, that can be enjoyable.

Tori Clarke

However, Clarke also points out that when the brain and body get overstimulated and need to shut down to recharge, it can lead to what’s referred to as an 'autistic meltdown' — which “is no fun at all.”

“These are the side effects of being autistic, I don’t choose these, and I can’t control them,” Clarke states.

A doctor weighs in

Sharief Taraman, MD, DABPN, DABPM, FAAP, and CEO of Cognoa, a pediatric behavioral health company, tells Healthnews, “as a clinician who sees these children in my practice, what we know is that when the brain is developing, it can create pathways that then present with autistic features or traits.”

“But if you don't identify these children early, those traits are strengthened to the point that they begin causing dysfunction for that child and causing them to have problems interacting with the world,” he explains. “For example, engaging in self-harming behaviors, restrictive eating, or elopement behaviors that get them injured because they were hit by a motor vehicle, etc.”

At that point, Taraman says, it becomes a disorder because it causes significant impairments or challenges for the child.

Taraman adds, “So, the more important question really is — how do we help these children early so that it's not a disorder?”

With one in 36 children now diagnosed with autism — an increase from one in 44 in 2018 — conversations surrounding treatment or therapy have been a hot topic.

He explains that if autism is identified at a young age, such as 18 to 24 months, or even under the age of three, “there is a window of opportunity where you can maximize interventions that make those traits simply that — autistic traits — and don't allow them to really manifest as a disorder in many children.”

Yes, we should accept neurodivergence, and yes, we should accommodate autistic traits in individuals, but to not call it a disorder, not really identify children early, and not give them the ability to have equitable access to interventions that we know can help them — such as speech therapy, occupational therapy, behavioral therapy — then we have failed as a country. And we failed as a nation.

Sharief Taraman, MD, DABPN, DABPM, FAAP

Do autistic people want to be 'cured'?

One of the driving factors in this ongoing debate is the idea that autism requires a cure. And a “cure” might be on the horizon. For example, recent research discovered a medication used to treat epilepsy reversed autism-like behaviors in mice.

However, not all autistic people wish for a "cure."

Jess Owen, an autistic blogger and creator of TheWyrdSisters.co.uk, tells Healthnews, “I firmly believe that autism is not a disorder and absolutely does not need to be cured. Whilst there are many disorders — such as depression and anxiety — that autistic people may be more susceptible to and should be treated, autism is not one of them.”

Autism is not a disease. It's not worse or lesser than — it's just different.

Jess Owen

She says, “I am proud to be autistic, and I think if neurotypical people spent less time thinking about curing us, and more time considering how to accommodate us, life would run more smoothly for everyone.”

Steindorff tells Healthnews he believes autistic individuals should seek a diagnosis to understand themselves better. But, he adds, “[autism] shouldn't be cured. Maybe there'll be a cure for heart disease or cancer, and maybe in 100 years or whenever, we’ll understand the [autistic] brain allowing people to function better.”

“But accept people as they are in this moment,” he says.

Clarke calls autism a disability with “unique superpowers.” She says, “I don’t know who I’d be without it, and I wouldn’t trade it in if it meant losing me.”