Neurodiversity, You’re Forgetting Someone Important
What Is Neurodiversity?
Neurodiversity, short for neurological diversity, is the idea that diversity in human behavior and thought is the result of normal variability. The implication of neurodiversity is that people who are neurologically different from most of the population, such as individuals with autism, should be celebrated, not ignored or taught to be “normal.”
Recently, society has started to jump on the bandwagon. It has become trendy to rebrand our eccentric geniuses, the Einsteins and Mozarts, as people with autism, members of a misunderstood and unappreciated tribe. The current idea is that autism was responsible for, or at least contributed to, their genius. This remaking of autism is a welcome departure from the notions of autism during the 20th century when psychologists of the day equated autism with schizophrenia or insisted the condition was caused by distant, frozen mothers.
Why should we care?
That brings me to the bestseller, Neurotribes, by Steve Silberman. The book has a dual purpose: 1) to provide a comprehensive history of autism, and 2) to explain that autism is not a disability, but rather, a different way of life. Silberman has done a great service in bringing awareness to a condition that, despite reaping attention from the media, almost no layperson recognizes, let alone understands. And the neurodiversity movement certainly feels right after the institutional mistreatment of people with disabilities.
At a time when we, as a society, are finally crawling towards equality across gender, race, and sexual orientation, it feels right to add individuals with autism to the list. That person in your office who doesn’t make eye contact is not bad-mannered, but different. That uncle who is always tinkering with machines but doesn’t say hello is not rude, but neurologically diverse.
But something Silberman said in a 2015 interview with Forbes Magazine throws a wrench in the neurodiversity machine. “I’ve talked to a lot of autistic people.” He talked to them, and they were able to talk back and speak well, at that. The chief problem with Neurotribes is that Silberman’s sample of individuals with autism was biased.
He interviewed people with autism who are leading the advocacy movement, people who are highly educated and motivated, people who can not only understand complex ideas but be at the forefront of changing perceptions. This leaves out everyone with autism who cannot speak articulately, or speak at all. Which then begs the question, how many people like this are out there?
The research and the reality
There is no one gold-standard study that reports the percentage of individuals with autism who also have an intellectual disability (ID), but reports range from 40-75%. One study that reviewed functioning levels of adults with autism found that 58% of individuals included in the study had ‘poor’ or ‘very poor’ outcomes. Other studies had slightly more optimistic results, but the biggest factor in determining adult outcome was ID. Many individuals with ASD and ID were shown to have difficulties in communication and self-help, had challenging behavior, such as aggression and self-injury, and needed assistance in completing basic daily tasks.
To say this is due to society’s unaccepting treatment of autism, or to institutionalization, is not only inaccurate but offensive to the families who battle daily to help their loved ones lead happy lives. For every child with autism who is quirky and struggles to be understood by his peers, there is a child who bites his hands until he bleeds whenever he is asked to shower. Was the former child’s life easy? Of course not. Would he have fared better if some tenets of the neurodiversity movement were accepted? Of course. But does he have the same difficulties as the latter child? No, he does not.
So where are all these people in Silberman’s book? In the advocacy groups? In the neurodiversity movement? Where are they, in general? They are forgotten. There is very little mention in Neurotribes of any individuals with intellectual impairments or challenging behavior. Whenever such individuals are mentioned, they are portrayed as victims to move the story along.
Before I go any further, I will say that neurodiversity is, overall, a positive movement that has the potential to help society. It is terrific that some people with ASDs have overcome obstacles, beat back stigma, and are now rising to become advocates. The problem is that they, along with Silberman, are equating their personal history with every person with ASD’s personal history. They need to be more careful and clarify that they speak for themselves, people with ASD who can speak, and speak well at that.
I have my own bias, to be sure. I am a special educator and applied behavior analyst who has worked in a residential school for the past three years. I have seen students who barely tolerated sitting in a seat learn to participate in group lessons. I have seen students who had no communication skills learn to ask for their favorite flavor of Doritos.
But I’ve also seen 16-year-olds who still aren’t toilet trained after several attempts by qualified professionals. I’ve seen students who still need to be restrained regularly due to severe self-injury, or aggression. I was once sent to the emergency room after a particularly bad aggressive episode from one of my students. And that’s not uncommon; this happens to many people who work on my end of the field.
Autism really is a spectrum, and it is upsetting that such a well-researched book only looked at one end of it. There must be some common ground, some happy medium between “there’s nothing wrong you” and “we need to fix everything about you.” Current research spends so much time and effort teasing apart every gene, every environmental variable that may be a factor in autism, and yet when it comes to helping those already affected, we fall woefully short. So what can we do to fix this?
How Can We Help?
First, we need to acknowledge that autism really is a spectrum disorder. We can’t keep looking down the same end of it and pat ourselves on the back. The neurodiversity movement must become even more diverse and acknowledge that for some people, autism is truly a challenge.
Second, we need to speak up. If you are a family member of someone with autism, make your voice heard! I have recently seen some articles from parents about the struggles of autism, and this is a good start. Once society starts acknowledging that these people exist, we can start talking about how to help them.
The neurodiversity movement, along with the Neurotribes book, has some great beliefs about how to treat people with autism, but both stop short of acknowledging the full spectrum. I ask you now to take a trip down the road less traveled. You’ve seen the socially awkward math whiz and the adorable kid with a speech delay.
Now I challenge you to accept the teenager who can say three words and the young woman who left public school due to her aggressive behavior. Some people with autism really do need a lot of help, and admitting that is not borne out of a desire to “normalize” these people, but rather, to help them achieve. They need a voice, so I ask that you lend yours. Together, we can remold a society that truly includes everyone. https://www.cdc.gov/ncbddd/autism/data.html https://www.ncbi.nlm.nih.gov/pubmed/14982237  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3769945/
Megan Cicolello is a sibling of an individual with autism, as well as a board certified behavior analyst with a master’s in applied behavior analysis. She currently resides in Massachusetts.
This article was featured in Issue 85 – Top Strategies for Supporting your Family