A tweet just came across my stream and I felt pulled to respond to it but, gosh darn it, I had more than 140 characters to say. The tweet read: PLEASE RETWEET #Autism Rethinking Autism: Autism Support Group: youtu.be/eWnDPpfpLmM via @youtube
So I clicked on the link and was taken to a video put out in March 2011 by RethinkingAutism.com. The video features a group of parents, sitting in a circle, each talking about some of the most commonly voiced feelings regarding parenting a child with autism:
• He started screaming in the barbershop. It was so embarrassing.
• I feel like she's trapped somewhere in there.
• It's so sad; We can't have birthday parties.
• What about school? He just doesn't get it.
• He never tells me that he loves me.
Each time a parent says one of those phrases, a woman whom we assume to be the moderator of the group chimes in.
• Barbershop - Why didn't the barber ask before he touched him?
• She's trapped somewhere - She's right there in front of you.
• Birthday parties - Who are the parties for, you or him?
• School - He just learns differently.
• Never tells me he loves me - He is telling you that every time he touches you.
It turns out that the members of the group aren't actually hearing the woman at all. She is not the moderator, but an adult living with autism and, despite the fact that she is speaking right in front of them, the parents of children with autism in that room can't hear her. The point being that adults with autism are all around us and we are not including them in the greater conversation about autism. You know what? It's true. Whether we are teachers, therapists, doctors, or parents, we study autism, learning everything that we can about it. We learn strategies that help children succeed in a world that was built for someone who thinks completely differently from the way that they do. Without a doubt, more often than we ever have before, we need to be involving people with autism in the conversations about how best to help people with autism!
With that being said, what I really wanted to comment on were the feelings that those parents in the video expressed. It is so important that they are not discounted. Those are real and very valid feelings.
• Sometimes, a parent does not want to have to teach the barber the best way to cut their chid's hair. Sometimes, the parent just wants their kid to sit down in the chair and get a haircut like any other child.
• Most parents will agree that the woman in the video is right - the birthday party is supposed to be for the child, not for the parent. But, you know what? When I thought about what life would be like when I became a parent, I had a vision of birthday parties. Most of us do. They are going to be just like the ones we had or even better than the ones we had. They'll be at the bowling alley or the movies or at our house with streamers and ice cream cake. When it turns out that this is not something that is best for their child on that day, parents do avoid it - sure. That doesn't mean that there is not a loss there. They are losing a part of that vision that they had. They are losing something that they thought was a guarantee in life.
• The same goes for hearing your child speak the words, "I love you." Having worked with many children on various places on the autism spectrum, I know how meaningful and powerful it is when a child allows you to touch them, hold them, and hug them. I know how amazing it is when you get those moments of connection and parents know that only the most special people in the world to their child, the ones that they truly love, get those moments. But, for goodness sake, they just want to hear the words, "I love you." And it hurts when they don't. And those moments, that contact, the connection, doesn't necessarily happen at those moments when parents feel like they need the, "I love you," the most, either. Parents have to hold on to those connections and save them up for the hard times, to get them through the more difficult stuff.
Autism is just as much a part of who a child is as anything else about their personality. And the parents that I have had the honor of working with would not change that about their children for the world. But, while they are celebrating everything that makes their child wonderful and perfect and exactly who they were meant to be, they are going to grieve the loss of what they were planning on for, at least, the 9 months of pregnancy but, more likely, their entire lives. Autism is a life altering thing and it affects every moment of every day. Parents can wish that things were easier for both them and their child while, at the same time, not wanting anything to change. It doesn't seem to make sense, but we humans are awfully complex creatures and we totally want to have our cake and eat it, too.
So, let's definitely involve people with autism in the conversations about autism. Duh! But, in the process, let's be careful not to shut down a whole range of human emotions that parents are going through. There is room for all sorts of thoughts and feelings in our amazing community of people with and who love someone with special needs.
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