5 mistakes I made as a parent of an autistic child that you can avoid
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 good fortune of being connected with some of the most insightful autistic and autism professionals and thinkers on this planet who have transformed my parenting approach completely, to the benefit of my teen son, Leo, as well as myself.
As my writing has always been 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 that I hope you can avoid.
1. Focusing on awareness instead of acceptance.
Autism acceptance isn't really a thing in the American culture in which I was 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.
2. 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 to say ignorant things like, "Oh, I heard you can cure autism with a bleach enema," or "I'm so sorry about your son'sautism epidemic," or even "Aren't autistic people all
Awareness underlies misunderstandings such as assuming all autistic people are children or remain children for life, which then leads to autism efforts that neitherinclude nor consult autistic people and parents or professionals ablesplaining "what autism is like"toactual 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 black caregiver, Charles Kinsey,frombeing shot for trying to comfort an agitated autistic person.
This is why parents need to work on autism acceptance, on helping not just themselves but the whole damn world understand that our autistic children have autistic traits that make them autistic and that they are also real human beings with real needs that deserve real respect. Real acceptance means supporting and accommodating our autistic kids without being hell-bent 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 to work toward 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 him or her to not be autistic.
3. Obsessing over "age-appropriate" interests
It should be good 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 appropriate only for people younger than he or she is!
This is part of that acceptance mindset again: Parents need to jettison worries about autistic kids' interests being age-appropriate andfocus on what, for your child, is happiness-appropriate.
Otherwise, you'll not only make your child sad and possibly even miserable but you could also be destroying opportunities to connect with him or her. 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 also 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?
4. 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'm now seeing this sort 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 Pokémon Go has helped her autistic son leave the house and socialize 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 him to be but he isn't" and "this thing is making my kid happy and making it easier to do things that are hard for him." Let your autistic kids have fun, people!
5. 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 "nonverbal" 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 everyone can communicate (even if it's as basic as "yes/no" or even just "no") when given the right tools to do so, but 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.
6. 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 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 and people with other disabilities say Finding Dory is hard to watch because they lived through and so empathize deeply with how other creatures constantly 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 him and are on his side — no matter how badly the rest of the world behaves.
Let autistic kids 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 they will.
This post was originally published on BlogHer.