Monday, April 10, 2017

Hey Parents of Autistic Kids: Here Are Five Big, Avoidable Mistakes

Shannon Des Roches Rosa
www.squidalicious.com

Resting after a long hike. Photo © Shannon Des Roches Rosa
[image: White teen boy with short brown hair, seen from
behind, sitting on a hilltop bench overlooking an ocean.]
If you're the parent of an autistic kid, you probably get advice thrown at your head from every angle, all day long. You may even be all done with advice. And I hear you, because I am you.

But I also have had the great good fortune to be connected with some of the most insightful autistic and autism professionals and thinkers on this planet, who have transformed my parenting approach completely, and to the benefit of my teen son Leo, as well as myself. 



As I have become increasingly devoted to "learn from my mistakes, so you don't repeat my mistakes," here are five bonks I made during the early years of parenting my autistic son, and how you can avoid repeating my fails:

1) Focusing on Awareness Instead of Acceptance



Autism acceptance wasn't a thing in the American culture in which I was both raised and taught to parent. Americans tend to think of autism and disability as either other people's problems, The Worst Thing That Could Ever Happen to a Family, or grist for arguments that non-disabled people should appreciate their special non-disabled lives. Even respected progressive media outlets tend to take these stances. 



Parents like me are told we need to focus on building awareness, which means opening  other people's minds to the concept that autistic people like my son exist. Which would be fine, if awareness also came with the benefits of respect and understanding.  But it doesn't. "Awareness" lets people think it's OK say ignorant things like, "Oh, I heard you can cure autism with a bleach enema," or "I'm so sorry about your son's autism epidemic," or even "Aren't autistic people all violent psychopaths?"

Awareness underlies misunderstandings such as assuming autistic people are either all children, or remain children for life. Which then leads to autism efforts that neither include nor consult autistic people, plus parents or professionals feeling entitled to able-splain "what autism is really like" to ... autistic people. These too-common results are the opposite of helpful.

Awareness also doesn't prevent innocent autistic people like toy truck-holder Arnaldo Rios from being mistaken by police for a violent suicidal gunman, nor does it prevent autism professionals like Arnaldo's caregiver Charles Kinsey from being shot for trying to comfort an agitated autistic person while Black.

These are just a few of the reasons why parents need to work on autism acceptance, on helping not just our own selves but the whole damn world understand this truth: our autistic children have autistic traits that make them autistic, and they are also real human beings with real needs who deserve real respect. Real acceptance means supporting and accommodating our autistic kids without being hellbent on "fixing" them, and being conscious of “the law of expressed emotion,” as described in the recent Invisibilia podcast, The Problem With The Solution, that “our private thoughts about a person, our disappointment in them or even our wishes for them to get better, shoot out of us like lasers and can change their very insides.”



Acceptance means rejecting the idea that there's a "normal" child trapped inside your autistic child, for the sake of your child's health, heart, and soul—as well as your own. It is reasonable to want your child’s life to be easier, and work towards that. On building skills for better coping with people and situations that are rarely considerate of autistic needs. But if you have an autistic child, it isn't realistic or healthy to expect them to not be autistic.



2) Obsessing Over "Age-Appropriate" Interests

 

It should be fine and dandy for people to like what they like, as long as they're not hurting anyone. Unfortunately, when it comes to autism, things people really really like tend to be viewed solely through the lens of disability, if not pathology: what might be viewed in a non-autistic person as a passion becomes an "autistic special interest." And woe to the autistic person whose passions are seen as only appropriate for younger people!



This is part of that acceptance mindset again: parents need to jettison worries about autistic kids' interests being age-appropriate and focus on what, for your child, is happiness-appropriate. Otherwise, you'll not only make your child sad and possibly even miserable, but you could be destroying opportunities to connect with them. In the new movie Life, Animated, an autistic young man's love of animated Disney movies gave him scaffolding not only for making sense of and relating to the world, but provided him with scripts—functional echolalia—to communicate with his delighted family (who had been told by professionals that his echolalia served no purpose, grrr). 



With people like my son Leo, for whom speaking comes slowly and carefully, building language skills requires extended observation, absorption, and scripting. Sometimes he needs to practice hundreds or thousands of times before feeling comfortable trying new words, and watching familiar videos or scripts (and yes, even ones meant for younger kids) can help with that. My son says novel things about videos he’s watched thousands of times before, almost every day. Why would I tell him he can't watch what he loves, when his favorite videos continue to help him learn?



3) Making Everything Therapeutic. Even Fun Things.



I have been guilty of this in the past (and possibly in the paragraph directly above): making sure that everything in Leo's life has some sort of therapeutic value, instead of making sure he has space in his life for happiness and fun. I recently observed this type of "what is awesome for non-autistic people is therapeutic for autistic people because they are autistic" with Pokémon Go:
“A mum has described how Pokemon Go has helped her autistic son leave the house and socialise with other people for the first time. She hopes that the effects of the game will carry over into the rest of his life, with Ralphie becoming more social, less rigid and wanting to get outside. "We're letting him enjoy the game but we're also trying to help him learn he doesn't need the game in order to do those things," she said.” 
As parents, we need to be really careful to distinguish between "this thing is making my kid be the person I want them to be but they aren't," and "this thing is making my kid happy and making it easier to do things that are hard for them." Let your autistic kids have fun, people!



4) Assuming Speaking Is the Only Form of Legitimate Communication



This is an intense one. And one that makes me so sad. I hear from and read accounts from parents nearly every day, talking about their "non-verbal" kids, about how speech therapy never worked, about how they can't reach their kids and how it makes those parents so sad.



I'm guessing it makes their kids even sadder. Especially if their kids have never been given communication options other than oral speech. Because not only can everyone communicate (even if it's as basic as yes/no, or even just "no") when given the right tools to do so, many autistic people have motor planning or related disabilities that make it hard to speak or respond appropriately even if they understand everything being said to them.

So if your child needs communication support, be sure to press hard for alternative communication evaluation and options. If your local resources or school district don't know where to start, send them to the website PrAACtical AAC, which is dedicated to best practices for Augmentative and Alternative Communication (AAC) professionals, and which you should read through yourself for ideas.



5) Buying Into the Stereotype That Autistic Kids Aren’t Empathetic or Social 



It is extraordinarily damaging to treat autistic people as emotion-free, antisocial robots. As Louise Milligan writes in The Guardian,
"The idea that people on the autism spectrum don’t know or care about other people is offensive and wrong. It makes their ability to navigate a path through this world so very vexed. Let’s be very clear: how people with autism might appear in company and what they know or think about, or care about, are quite distinct things."
And this goes back to that Acceptance concept: If you understand that being with other people can be challenging for an autistic child because social cues are confusing, and the world is filled with “light, colors and noises so intense” that your child can't think let alone interact, then you're more likely to stop confusing inability to handle socialization under stressful circumstances with dislike for other people.

(Though, to be fair, as with non-autistic people, some autistic people do prefer their own company.)



What Can You Do? Just Keep Swimming.

How can you get it right? Well, I recommend acceptance, as you might suspect by this point. And learning from the parents in the movie Finding Dory. As Alice Wong writes, "[Dory's parents] Jenny and Charlie are like many parents of kids with disabilities:

"They worry about her future
"They teach her life skills that she will need
"They are protective about Dory and her safety (“Watch for the undertow!”)
"They show joy and love of Dory being Dory"

Some autistic people, as well as people with other disabilities, say Finding Dory is hard to watch, because they lived through and so deeply empathize with how other creatures shun and second-guess Dory, and condition Dory to constantly apologize for existing. But Dory's parents never wavered in their complete love and acceptance for her.

Be like Jenny and Charlie. Love your kid. Let your kid know you love them, and are on their side -- no matter how badly the rest of the world behaves. Let them know they can always depend on you, that you accept and adore them, and that anyone who doesn't automatically feel the same way just needs to catch up. Because if we all work hard enough on that acceptance thing ... maybe everyone else actually will catch up.

A version of this essay was previously published at www.BlogHer.com.