The Autism We Talk About

On Saturday morning, Lisa sent me Bonnie Zampino's article called My Son Has The Kind Of Autism No One Talks About, in which Zampino addresses a neighbourhood in California that filed a lawsuit against a local family's Autistic son for being violent towards their children. While the neighbourhood claimed that, "This is not about autism. This is about public safety", Zampino calls it out for what it is - discrimination against an Autistic person and their family, and a reflection of the widespread misunderstanding of the autism reality.   Zampino writes that one of the major factors behind this incident is that the boy in California doesn't have "the kind of autism we talk about when we talk about autism". She's talking about the Autistic success stories that are so widespread in the media lately - the Jacob Barnetts of the world, the Autistic prodigies that redefine our idea of what human beings are capable of - and the off-beat, but acceptable Autistic kids, teens, and adults featured in feel-good news stories. She writes:  For every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people. Zampino talks about her son's aggressive behaviour as a young child, and how for many years, she would flinch whenever he came near her, because she couldn't predict whether he would be loving or lash out. She argues that we, as a society, aren't aware of autism - not truly - because we only talk about the high points. We don't talk about the sad, messy, violent parts of autism, and so a community in California can say: "This isn't autism." But we used to talk about it. Less than ten years ago, the media narrative surrounding autism often displayed it at its worst - highlighting the devastating effects autism can have on a person's family, outlook, behaviours, etc. Chief culprit in this narrative of negativity was Autism Speaks - putting out videos like I Am Autism (transcript), in which the narrator, "autism", tells a parent: "If you're happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either." Zampino's article reflects a sentiment that tells us we have gone too far in the other direction - spotlighting only the most positive of autism stories - that we have ended up alienating the majority of Autistic people and their families from the conversation.  I believe we are starting to find a balance. We have seen a massive shift in media awareness of autism over the past ten years, reflected in shows like Parenthood, Criminal Minds, and Grey's Anatomy, prominently featuring Autistic characters, and delivering a sensitive portrayal of what the lives of these characters and their families are often like, for better or for worse. Movies like the biographical Temple Grandin, or fictional accounts like Extremely Loud and Incredibly Close or Salmon Fishing in the Yemen, strive to depict the unique perspective of Autistic individuals, celebrating their successes while acknowledging their challenges. In print, we have potentially seen the most complex, and engaging portrayals of Autistic individuals in works like House Rules and The Curious Incident of The Dog In The Night-Time (now a Tony-award winning play!) I think that we, as people who care deeply about Autistic children of all ability levels and personalities, have a responsibility to think critically about the media coverage of autism, and give thought to the kinds of depictions that would provide a fair and honest picture of the roller coaster that autism can be - both the incredible highs and the devastating lows.

A Job For Life

This week, we're looking at a great blog post from catonatrampoline, an Autism Mommy Blogger, who writes about Autism and parenthood. In her post, A Job For Life, she imagines an introduction letter from the Human Resources Manager at 'AutismLand' to the newly-minted Autism Parent, complete with required qualifications, on-the-job training, and employee benefits and incentives. 

catonatrampoline writes: 

"Congratulations on your successful appointment to the position of Autism Parent.

We understand that you may be confused by this appointment, as you never actually applied for the post in the first place. You may also be concerned that there are no contact details in this letter, so you cannot write, call, or email us to turn the position down. Your concerns are to be expected, and will become less over time."

(catonatrampoline, A Job For Life)

For "Qualifications", she states: "the only essential qualification required is to be the parent of an autistic child", and in terms of "Training You Will Receive Before Taking Up The Post", she wryly notes: "None." (ibid.)

catonatrampoline captures the common anxiety and desperation of a new parent coming to terms with their child's diagnosis, and starting down the path of educating themselves about Autism, and how they can best support and guide their child through a world that will, at times, overwhelm them, exclude them, judge them, or deny them the same opportunities as their neurotypical peers. The battle for these parents has just begun to ensure that their child is provided with compassionate and knowledgeable caregivers, access to effective education, and inclusion in the social landscape of their environment. 

I think this post is a great reminder for all of us that while the start of a new school year can be stressful for any parent, the job of an Autism parent is an even more nerve-wracking affair. Our parents are starting on a 10-month adventure of attending countless IEP meetings, dealing with teacher communication, helping with homework, pushing behavioural strategies and support, fighting tooth-and-nail to make sure that their child doesn't fall behind, and much, much more. 

We need to be a haven for these parents - always, but especially during the tough first few months of school. We need to be the welcoming arms that greet them with the same compassion we extend to their children. We need to be the people that have their back, even when the day has been long, and we're tired, and they're tired, and their child is tired... It's our job to be the positive energy in the room, to be empathetic to their concerns, and to give them an account of the day that doesn't drive their cortisol levels through the roof! 

Throughout September, let's all remember to check ourselves at the door (literally!) when we are greeting parents before or after a session, and to recognize that their batteries are often more depleted than ours, and that by being their cheerleader and coach, we can make the biggest impact in the lives of our families.