One of the struggles I have had as the parent of a child on the Autism Spectrum is knowing what to do, what to expect, and what is normal.
Autism is one of those ‘invisible’ disorders. It’s not obvious from appearances alone that a person has autism, unless their case is so extreme that a helmet is necessitated, or if the person engages in ‘typical’ stimulating behaviors (stims as they’re called in the community) like hand flapping or rocking. Even then, there could be different reasons for wearing a helmet or flapping hands.
For those considered ‘high functioning’ on the Autism Spectrum (also called ‘Asperger’s Syndrome’) such behaviors are sometimes lacking. It’s not the stims that make a person autistic. Nor is autism the kind of disorder that results in cognitive disabilities or delays. Trust me, my son is at least on par if not academically well beyond his peers.
Autism causes those with it to perceive and respond to the world in ways different than ‘neurotypical’ (more technically appropriate than saying ‘normal’) people do. It’s not that they’re stupid. It’s not that they’re arrogant. It’s not that they have no morals. It’s not that they’re aloof. It’s definitely not that they’re anti-social. It’s just that their world is different than most everyone else’s, despite sharing the same physical space.
This is the challenge. How do we, as neurotypical people – parents, friends, co-workers – work with those on the spectrum? How can we understand their world? How can we help them understand the world as it is perceived by the other 99 percent of the world’s population? How can we work together so that we can all interact and be happy without having to change who we are?
We can’t expect my son or anyone on the spectrum to suddenly become neurotypical any more than we can expect an amputee to suddenly grow a new arm. It’s cruel to expect them to change themselves to fit in with the rest of us. We need to all study, embrace, and celebrate the differences between us. With understanding, comes progress, and then true, meaningful change for the better.
How can I learn about how those on the Autism Spectrum see the world?
The best way, of course, is to find a friend or two or three that are on the spectrum and have an open conversation. Make sure that you’re explicit about being genuinely curious about their perceptions of the world, and be prepared to discuss your perceptions too. Such discussions are amazing. Ask questions like “Why does this bother you?” or “How come you carry a blanket?” Be open and frank.
But I don’t know anyone on the spectrum.
I’ll bet you do. You probably just don’t know it, and it’s possible that they don’t know it either. That’s ok. You don’t need to talk face-to-face with someone on the spectrum. With social media, there are ways to find a whole community on the spectrum and have the discussion that way.
Enter, Twitter – and the point of this post.
When my son was diagnosed, I felt rather lost. I thought I understood what Autism was, but I was totally wrong – overwhelmed by the misconceptions that a lot of people hold. I read blogs and browsed books, but it still didn’t help. A lot of what I found were things written by other neurotypical adults about their experiences with children on the spectrum. While it was helpful to know that the issues we were having weren’t unusual for kids on the spectrum, it didn’t offer many useful solutions.
Then one day, I found out that a person I was only barely acquainted with was also on the spectrum. We got to talking. She’s on Twitter as @MonkeyPliers. She introduced me to a couple of regular Twitter chats that happen, in which I participated.
Holy cow!
The participants of the Twitter chats are almost all adults – functional independent adults – on the spectrum. These people are my son, all grown up. I started asking questions. They answered. I understood. My mind expanded. They were all kids once. They know what my son is going through. They make suggestions on what I might do, and the suggestions actually help!
Recently, I introduced my son to MonkeyPliers in person. They chatted up a storm. They talked about Autism and what it meant. My son hasn’t said much about the conversation, but several things happened that show me that his experience was a good one. We went home later that day and he took a nap. He doesn’t really take naps any more, but he was worn out, probably from all the stimulation. The next week at school was phenomenal for him. For the first time in months, we didn’t get phone calls about disruptive or violent behavior. And, perhaps most significantly, he remembers the conversation positively. And he remembers MonkeyPliers.
We now have an open dialog between him and me (and his father, who might himself be on the spectrum) about our differences in perceiving the world. I also have weekly opportunities to chat with autistic adults about problems that may arise. My son can’t always express what’s happening, but I need only describe the situation, and my Twitter friends can tell me exactly what’s happening and what I might be able to do.
In this regard, Twitter has been one of the most helpful resources I have available to me as I’m trying to raise my son to be a functional independent adult in this society.
I know I’m not the only person in the world who’s ever been blind-sided when their child was given a diagnosis of Autism. So let me offer you access to the same resources I use.
The beauty of Twitter is that you don’t have to have an account to read the tweets, so if you’re nervous about using it, you can just observe for a while before signing up and entering the conversation.
I put together a list called ASDPals. These are people on Twitter who either have their own diagnosis of an Autism Spectrum Disorder, or are parents of kids on the spectrum. If you have an account, you can subscribe to this list without having to follow all the people on it. I have been slowly adding people to provide a broad range of perspectives on being autistic and raising kids on the spectrum. Oftentimes, there are links to blogs written by adults on the spectrum that are particularly enlightening.
There is a chat every Thursday night is on the hashtag #LIASchat, which stands for Living Independently on the Autism Spectrum. It’s hosted by @lynnesoraya who is an autistic adult who’s written a few books and blogs for Psychology Today. The weekly #LIASchat starts at 9pm eastern time.
“Shaun of the Stim Celebrates” takes place on the third Thursday of each month as well. It goes from 7-9pm Eastern time and is hosted by @MonkeyPliers. Its theme usually carries over to the regular #LIASchat. It has a different hashtag each month. If you follow @MonkeyPliers, she’ll announce it in advance.
Social media like Twitter are a huge opportunity to interact with others on a global scale, whatever your questions or needs may be. In understanding my son’s world, it’s been priceless.
Penny Higgins - Storyteller • Artist • Scientist 