Surrounding My Autistic Son With Community That Matters
By Shannon Des Roc... on May 30, 2014
BlogHer Original Post
When I think about my son's future—and that includes his future without me, seeing as autistic kids, like most kids, tend to outlive their parents—there are three things I desperately want for him:
1) I want Leo to be known and loved in his community.
2) I want Leo to be understood and accepted for who he is.
3) I want Leo's personal wishes respected.
These might seem like the most basic of rights. Yet when families feel isolated from the local community, don't have the resources or role models to understand their kids' autism, or are parenting children who struggle to communicate, those three goals might also seem irrelevant at best, inachievable at worst.
But they're not impossible goals. They're actually critical goals for the health, happiness, and well-being of both you and your autistic child. I'll tell you how I'm working towards them with my son Leo, and then I'd really love to hear how you're working towards them in your family.
1) I Want Leo Known and Loved in His Community (Communities, Really)
Being part of a community matters. It feels nice to be included, to walk into the cafes and the grocery stores we visit regularly and be greeted warmly and by name. It also matters because people in our community know us, and care about us, and see us regularly, and are more likely to notice if something is amiss—whether with me or with Leo. Our community routine is one of our safety nets, much as Giulietta Carretti's community routine is hers (as reported on This American Life):
...it's why she takes the same routes, day in and day out, around San Francisco-- so she can be recognized. When people interact with her, say hello on the street or call her name, it can do the same thing that cold water does when she swims -- knock her back into herself. It can mean the difference between her getting home or wandering lost around the city."
I realize being out in the community is not easy for many of us, nor is it always easy for our kids—they can be overwhelmed by sensory stimuli like noises and lights, we can be apprehensive about being in public with kids who have unique ways of expressing themselves. I personally feel Leo has the same right to be in public as anyone, as long as he's not creating a disturbance—and sometimes even if he is, if he can work through it. The local cafe owners who are part of our routine feel the same way and go out of their way to take Leo's side if need be, in asking other clients to be understanding. Community matters.
Another, very critical part of building community for parents of autistic kids is making friends with autistic adults. Why? As Kassiane Sibley writes,
"If you have culturally connected Autistic friends, your child also will have a head start on a connection to the community. As he grows older, he will have a life apart from your family. This is a good thing and an essential part of growing up. The Autistic community is his birthright. We as a general rule (can't speak for everyone) welcome friendly parents, but your child is one of us."
So forge as many ties to your local community as you can, but remember that the Autistic community will have your child's back forever. Leo and I are grateful for our community of autistic friends.
2) I Want Leo Understood and Accepted for Who He Is
This is both a broad and an individual goal, so Leo and I work on it both day-to-day in our community, and also by sharing information on social networks. For example, researchers are discovering that autism has always been here, plus many autistic people are starting to see a whole lot of autism in looking back at their family trees. Consider this excerpt from John Elder Robison's recent talk on autism research and ethics:
"My father and I [are descended] from another philosopher and minister who founded the Anglican church in Bruton Parish, Virginia in 1678. [...] And I believe those ancestors, of mine, were autistic."
Mr. Robison also goes on to affirm that, as autistic people are now recognized as a significant sub-population, society needs to work on incorporating autistic people, rather than excluding them.
You can help work towards understanding and acceptance of autistic kids like Leo and adults like Mr. Robison by sharing his essay widely. You could also share specific information about understanding autistic people like Leo:
"Helping others understand what autistic kids need is an ongoing effort, mostly because of pervasive autism myths and misinformation. No one denies that early intervention can be helpful, for example, but parents should not abandon hope once puberty hits, as many autistic people gain skills throughout adulthood. We need better awareness about sensory sensitivities (hearing, smell), and how they can lead to meltdowns. We need to train parents and teachers and community members to be extra careful with autistic kids who don't have speech delays, just because those kids can "pass." And so on."
And please, please, please myth bust whenever you can about the absurdity of "high" versus "low" functioning autistic people, because there are no such categories despite individual variation of autism traits, as K-Pagination describes:
"We are all Autistic. I am not saying that we are all the same. We all have different needs and we all have different minds and sense of selves. But the spectrum is not made up of some linear thing where one person is “more Autistic” than another. Our traits intermingle and are all over the place."
3) I Want Leo's Personal Wishes Respected
While Leo might not have much speech, he is a powerful communicator. Unfortunately, our society prioritizes spoken language so highly that communication efforts like Leo's are often dismissed by those who aren't paying attention. That means his wants and needs are often being misinterpreted or dismissed. I cannot imagine how disheartening this must be, yet Leo persists because he has no choice.
It doesn't have to be that way, not for Leo, not for any autistic person. Most people who have no speech or limited speech can learn to communicate more effectively through AAC (augmentative and alternative communication), no matter the age at which the communication training starts, and no matter which form it takes —sign language, letter boards, typing, or the digital symbol-to-letter system Leo is currently learning (or he will, once we work through some rather labyrinthine insurance processes).
And here's where we circle back to community. I corresponded with fellow parent Ariane Zurcher about the hard work her daughter Emma put into learning to communicate through typing, and asked if Emma had any advice for Leo as he starts out. Here's an excerpt from what Emma wanted Leo to know (thank you, Emma!):
"[People] never listened to my real thoughts before this, because every time I talk with my mouth, the wrong words come out. You need to be ridiculously patient with the adults who try to work with you."
I suspect any autistic person who has not yet achieved the three goals of this post has more than enough practice in being ridiculously patient. And though not a patient person myself, I will absolutely keep supporting Leo in his striving towards those goals.