It’s April again, which means, as I flip my free Easter Seals calendar over to page April, I’m going to start talking about autism again.
April 2, World Autism Awareness Day, marks the start of Autism Awareness Month all across the globe. We included some bits on autism awareness in The Wanderer over the last three consecutive Aprils, but now as we face a fourth April – ten Aprils after the very first Autism Awareness Month – I’m wondering, are we ‘aware’ yet?
Because, really, autism ‘awareness’ hasn’t really changed very much for Autistics or their families. Services for Autistics are still underfunded, supports are still limited, and Autistics are still fighting for their rightful place in society and for their voices to be heard.
The neuro-typical (NT) world still in large part excludes Autistics, still perpetuates damaging stereotypes, still uses the r-word in mainstream culture, and is still dictating the futures of people on the autism spectrum in almost all facets of their lives, especially in schools and in the workplace with a lack of jobs and unequal and unfair wages.
Since last April I’ve learned that many Autistic people aren’t even fans of Autism Awareness Month. Autistic activists and bloggers say blue light bulbs, puzzle piece pins, autism walkathons, and more “awareness” propagated by NTs actually undermines Autistics’ efforts by perpetuating stereotypes, eliciting pity through anecdotes, and talking about autism like NTs are the experts and offering no forum for the true experts on autism – Autistics.
“We don’t care for ‘Autism Awareness Month’ because it focuses on the negativity of autism,” said Chuck McIntyre, a 26-year-old resident of Mattapoisett who is Autistic and active in the Autistic Community advocacy scene. “It follows the perspective of parents who martyr themselves as people who have to ‘deal with’ Autistics and often brings up ‘cure’ culture and increases stigma. But most importantly, it leaves us out of the conversation; it really pushes us out of the conversation.”
I’ve given all that a lot of thought, and I have no option but to agree with him.
The growing pains of personal growth have hallmarked my time between last Autism Awareness Month and this one. Accompanying that was the nausea that ensues when a new idea conflicts with one’s flawed assumption, and the jolt of self-awareness I drove into was like a massive pothole out of nowhere.
This year marked the chapter in my life when I faced the ‘ableism’ I never saw in myself because it didn’t quite look the way I pictured it.
As an advocate for my child and an ally of the disenfranchised, I never considered that perhaps inside me were some unwitting ableist tendencies. I knew they were out there, trying fad “treatments” to “cure” kids of autism and parents withholding vaccines essentially believing that a sick (or possibly dead!) child would be preferable to an Autistic child.
“There are multiple forms of ableism,” said McIntyre. “There’s the ableist that denies that these disorders or ailments exist, or those who call people like me or others ‘fakers.’ There’s the ableist who can say that you can overcome if you just ‘try harder.’”
And among a litany of other examples, McIntyre said, “There’s the ableist who is bitter about having their tax dollars go to special programs [that benefit Autistics],” and so on.
“And then there are ableists who are just bullies,” said McIntyre.
Ableism is also the crass concept that Autism is a defect of nature versus diversity in nature. Ableism is often unconscious, and so is ‘abled privilege,’ which is as simple as being able to look at the floor while talking to someone without being “redirected” to “make eye contact.”
We see ableism on social media videos of people acting kindly towards an Autistic person and being hailed a saint for attending an Autistic’s girl’s birthday party.
“The media in general will form a stereotype of the ‘helpless’ handicapped person,” McIntyre said. “A lot of their stories will be about these people who can’t take care of themselves or some unfortunate family who is living with this ‘Autistic version of the child they dreamed of.’”
This April is the perfect time for NTs to consider a new paradigm, one in which Autistics are accepted and not simply noticed as existing parallel to NTs. If you’re reading this and you are Autistic, I hope with all of my heart that some April we can achieve that. And if you’re NT and you’re reading this, autism acceptance must begin, not with awareness of autism, but with awareness of ourselves and our imbedded assumptions, discomfort with diversity, and reliance on labels that guide us towards preconceived judgments of how people are and how we should treat them.
Awareness means we know that Autistic people exist. Acceptance means Autistic people matter.
“You can be aware of women, and how their body functions,” said McIntyre as an example. “Or, you can be accepting of women and treat them respectfully. It goes the same for Autistics.… You can know everything about autism, or think you do, and still not accept Autistic people; you can still shun them. And if you shun them, Autistic people will still have trouble finding work, and in higher education … leaving room for a stigma.”
“If there isn’t acceptance, then there’s trying to control it, trying to change it,” said McIntyre. “And we’re saying it’s not okay, we’re saying that that lack of acceptance is itself unacceptable.”
Autism is a complex neurological “spectrum” disorder exhibiting disabilities in core areas such as cognitive functioning, fine and gross motor and planning skills, social development, and sensory processing. There is no one cause of autism, although researches suggest a combination of genetic and environmental factors may play a role. Despite exploitative claims, there is no “cure.” According to the Center for Disease Control & Prevention, one in 68 people is diagnosed with some form of autism spectrum disorder, ranging in number and degree of common symptoms that may affect communication, over- or under-sensitivity to light, sound, or touch, social skills, and repetitive self-soothing movements (‘stims’). Often other diagnoses correlate with autism, such as epilepsy and gastroenterological issues.
It is important that parents know the early warning signs of autism, because outcome is often more positive when intervention occurs earlier in development. Some early signs of autism, which can sometimes be observed in babies as young as six months old, are not babbling, not exhibiting gestures such as pointing, waving, or shaking head ‘no,’ repetitive movements, fixated with objects (e.g. ceiling fan spinning), little to no eye contact, paying more attention to objects than people, limited play with toys, not responding when name is called, aversive to cuddling, isn’t reaching milestones, and sometimes a sudden loss of skills such as speech and social skills.
McIntyre is recording a mini-series of hour-long episodes about autism with ORCTV, which will be aired throughout the month of April, to include topics like autism and the Autistic identity, Autistic rights and self-advocacy, autism stigma and ableism, Autistics and the economy, Autistics and politics, and Autistic allyship.
“This is my campaign to take back the narrative on autism and take back Autism Awareness Month and repurpose it for Autistic acceptance and Autistic appreciation,” said McIntyre.
By Jean Perry