Monday, June 4, 2012

Fifteen Ways to Accept Autism Every Day

Emma Apple

The month of Autism Awareness and Acceptance -- April -- is more than a month past, but the campaigns continue. There's Autism Acceptance Year, all those Facebook "Every Day is Autism Awareness Day at Our House" images that go around (which I love!), and there's the ongoing efforts of self-advocates, parents, and allies who want you to be aware and -- more importantly -- accepting and understanding of what autism is and what it means for autistic individuals and their families.
So, aside from Blue Hijab Day, here's my contribution this year for Autism Acceptance.

Five Ways to Accept Autistic Kids
  1. Be Patient. This really goes for kids of any variety. They have as much right as you to be out in the world and to take part fully in a world that will soon be theirs. Kids in general -- but often especially kids with special needs -- are learning appropriate social behavior, they might not be quiet in the library (but they might be loudly loving books, and who can be annoyed at that?), they might not sit still next to you on the plane, they might cry for that chocolate bar in the supermarket checkout line (chances are, you want it that much too, but have learned to want it in a more socially appropriate manner). No doubt we've all behaved badly at one point (or many) in our lives, and if we're lucky, the adults around us were patient and gentle when we needed them to be, even when we weren't.
  2. Ask and Listen. My son talks. For that we are blessed and have all worked hard. What he says is usually full of meaning though sometimes only he knows it -- and of fascinating perspective. My son also talks very, very slowly, often repeats parts of sentences, and talks in a quiet monotone with little facial expression, little gesture, and little eye contact. If you stop, and you kneel, and you listen to him, give him time, let him speak he does have something to say. He's taught me so much and I've learned to believe him -- even if I think a pink cement truck sounds wild and imaginary, he did see it, and it happens to live at a construction vehicle lot just down the road.
  3. Talk About Their Interests. A quote from Temple Grandin recently got me thinking about kids and their own awareness of their autism -- are some of us inadvertently creating too much focus on it? I think while it's important we adults are understanding, these kids are far, far more than the sum of their diagnosis, deficits, and neurological differences. I think that's the point of 'acceptance' over 'awareness' that many are campaigning for, to accept is to truly say something is OK and to allow it to be a part of your world and your life -- it doesn't need special focus all the time, it just is. Many kids on the spectrum have fascinating interests or interests that fascinate them, these can be things that give them balance or calm, or things that they are experts on that could lead to amazing careers if nurtured correctly. Ask my daughter about condors and you'll be in for a long -- and very informative -- conversation, and I have no doubt you'll enjoy it just as much as she does. Join my son while he's raining the hand fulls of little stones at the park; it's quite relaxing and you'll have an instant bond that you wouldn't get just by speaking to him.
  4. Communicate With Them and Accept Their Communication With You. Most kids on the spectrum struggle with communication in some way, whether significantly or almost unnoticeably. If a child is non-speaking and has no way of communicating, you can look at their behavior, what they are doing, what they seem to enjoy -- and communicate that way, or simply be comfortable in their presence without conventional communication; that alone is a big step for many. Admittedly, I don't have a lot of experience with non-speaking kids but I do know that behavior is communication -- and that accepting them and being comfortable in their presence is a form of communication in and of itself that can be liberating for both of you. Kids who can speak also have communication differences, so with them, we just have to understand we aren't going to get some parts of stereotypical communication (i.e., eye contact in many cases), and expect to interpret language differently. See point 2.
  5. Love Them. Because what do kids need more than love and acceptance? (Aside from oxygen, food, water and shelter, but you know what I mean.)
Five Ways to Accept Autistic Adults
  1. Show Some Respect. Whether someone is obviously disabled or not, whether you're struggling to communicate or not, every person deserves to be treated with respect and dignity. I don't think I need to elaborate on that, but I do think we all need to give it some serious thought.
  2. Communicate. Whether someone is using an iPad, a computer, texting, typing, or speaking when they communicate with you: listen to them, ask them questions, and listen to their answers. Autistic individuals are the authority on their own experiences and everyone else has an immense amount to learn from them. Many adults on the spectrum are working hard to share their perspectives with others and provide the necessary insights to accept autism as a part of our world -- whether it's Carly's new book, Temple Grandin's biopic, or the witty cartoons of Dude, I'm an Aspie!
  3. Look Inwards. You know that weird thing you do when no one's looking? The way you interrupt people sometimes? The way you bob your leg or tap your fingers on the desk when you're nervous or bored? We all engage in self-stimulating or -regulatory behavior. Autistic behaviors can just be a bit more noticeable or a bit more stereotyped or a bit more intense. We also all make the occasional (or regular) social faux pas and some of us are downright obnoxious. Everyone break the unspoken social rules sometimes.
  4. "Make Excuses." As Muslims, this is an important part of my family's every day life (or should be). Some complain that people on the spectrum can be rude or obnoxious, but if we know someone is autistic -- or even if we don't -- we should "make excuses" for their actions or behaviors before dismissing them. Someone might seem obnoxious; as John Elder Robison describes in his book Be Different, they might switch the channel without taking any notice of other people in the room. But did they do so out of malicious intent? Or were they genuinely not aware the others in the room were watching something or were even there?
  5. Lose The Pity. To pity is to feel sorry for someone, to assume their misfortune and feel superior in your fortune. You might pity someone who has lost a relative, who has been diagnosed with cancer, whose home was destroyed in a hurricane -- these are things they are powerless to control. But to pity someone because their mind or body developed differently than yours is to consider them powerless, to assume they suffer for it rather than just get on and make use or make do with the abilities, the strengths, and the power that they do have. To pity is counter to acceptance -- just don't do it.
Five Ways to Accept Parents of Autistic People
  1. Stop Using Devastating Language. It's dangerous. We can control how we respond and how we communicate with parents, and the media holds much of the responsibility here. Don't pity, don't say you're sorry, because parents are taking despairing attitudes to heart and children have been killed because of them! [Ed. note: to quote self-advocate Lydia Brown, "Don't let your children grow up in a world where society devalues their lives."]
  2. Be There. This is one sure way you can help. If parents are stressed or fatigued, listen to what they have to say. Offer to bring some meals, do the dishes, give respite. And see point 1.
  3. Don't Judge or "Know Better." "I heard about this diet/theory/study/cure," "You know Jenny McCarthy..." "I'm sure they'll grow out of it," "You definitely have to be more consistent," -- You mean well, we get it, it's just that we've heard it all before, it's just that it's based on media hype, it's just that it's rooted in parent blame. I've learned to ask questions instead of offering advice or opinion on something I don't understand: "What sorts of therapies are you looking at?" "I'd definitely bring that up to the doctor/teacher/therapist, just to see what they think. Keep me posted!" or just simply "I wish I had some helpful advice for you. Let me know if you want to talk, I have a good listening ear."
  4. Invite Them. That party that you know will be overwhelming for their special needs kid? Invite them anyway. Really want them to come, ask early in the planning stages and work with the parents -- and the child when possible -- to figure out what can be done to make the party more accessible, more sensory friendly, safer, gentler, more welcoming and accepting. It might be hard for you to plan around a child's needs you don't fully understand, but it will mean a lot to a family who really doesn't get to go to many Eid parties (for example).
  5. Give Them a Break. Come for coffee and be prepared to wipe up if it's spilled. Go for a walk and be prepared to grab a child who may run past you into the road. Have a chat and be prepared to talk around loud stimming. Go shopping with them, because four hands are better than two. Accept that your friend/family member has an autistic child, accept the autism, get comfortable with it and enjoy the company of it -- it definitely makes life interesting!