Today I had a brief conversation with an autism parent in Missoula, MT. (For those of you who haven’t discovered the joys of Periscope, I highly recommend it. This is a social media interface offered by the folks at Twitter, and handshakes nicely with Twitter accounts. Periscope allows you to broadcast from your smart phone, connects you to worldwide viewers, and allows them to chat/connect/interact with you and other viewers in real time.) So, this was really less of a conversation than an observation with a few text based comments thrown in from me.
What drew me to that particular ‘Scope was that is was an “Autism Chat”. Curious, I joined the phone broadcast–not sure what I would find. The parent was sitting in a Starbucks with an older tween boy, probably about 11 or 12. The boy was looking at a slew of pictures on an iPad and having a breakfast pastry. The parent explained that the boy is autistic.
A whole flurry of thoughts ran through my head, and probably just as many emotions, but I have a harder time identifying those in the heat of the moment. First, should any parent be putting their child on display to the world courtesy of social media? Second, how many times now have we heard the story of an autism parent who exploits their child to gain internet notoriety–and several I can think of off the top of my head used that attention to justify murdering or attempting to murder the child. (There are exceptions to that, because I also know parents who use a child-centered approach.) Third, this broadcast seemed to not be for the benefit of the boy at all, just the parent, which had me asking WHY?
I asked if the boy knew he was being broadcast, and was told that he did. Listening to the parent talk, I really didn’t get the impression that this was outright exploitation. The parent seemed to have a positive outlook toward the boy’s autism, and I slowly eased up on my feelings of dread, and desire to protect the kid.
At one point, the parent was asking if there were any other autism parents watching, and I piped up to say that I was on the spectrum. Another person admitted the same, but also stated they were ashamed to tell anyone. The parent missed this information, and kept asking if anyone had any questions or if there were any parents. So I let the other person know that they had nothing to be ashamed of, that there really wasn’t anything wrong with them, and that acceptance is key. The parent tried to scold me, but apologized after I informed about the unseen comment. And that gets me to the point I really want to make tonight, and why I had to let this space sit still for so long.
When you put resources onto the internet and in social media venues with an autism focus, you become a magnet to all the hurting, misunderstood and underrepresented voices that live this topic. Some will be parents. Some will be kids. Some will be undiagnosed, recently diagnosed or long ago diagnosed folks on the spectrum. Some will be friends of these individuals, significant others and family members. Many will be hurting, and many are reaching for any kind of life raft on that particular day they turn to the internet for help. I’m not saying everyone is in that space, but to me, the ones that are in this space are the ones that matter.
Maybe that’s because I’ve been there. I’ve been too depressed to get out of bed, afraid to talk to anyone lest I have to admit my autism–or worst of all that my autism might show (to quote my mother’s stage whisper, “people will think something’s wrong with you”). That isn’t the space I’m in now, today, but there are good days, better days and sometimes bad days for me at this point. Once, it was bad, worse and worst, so I’m thankful to have come this far. I also recognize that getting back to that space again and having a rotten day is not something I will always be in control of: there but for the grace of God go I. In other words, the last thing I feel for the folks who are struggling is pity or contempt, there is only so much compassion and empathy, and such a desire to help, that there is pain to think I might not be able to do right by someone.
I guess that’s why I let this blog lie fallow for a time. I knew I had a responsibility to deliver positive messages that were honest, clear and helpful to those who were struggling. My journey has finally progressed to the point that I feel I might be able to serve that mission better, so I hope you enjoy the return.
Then, this morning, watching that ‘Scope I realized what bothered me about it–beyond the fact that no 12-year-old should be the topic of their parent’s Periscope broadcast (unless they are clearly leading it or somehow otherwise gleaning their own benefit). You see, the parent was so focused on meeting other parents, because that was their need, and how they hoped to benefit. That person didn’t know how to deal with the fact that 20% of the viewers admitted to being on the spectrum, and instead the parent kept trying to point out to us how flapping meant the boy was happy and asking if we had any questions. Preaching to the choir, for sure. We were all there to connect with one another, to tell the story of autism in our own worlds, but none of us found a way to bridge the chasms between us.
In hindsight, I wish the parent had welcomed those on the spectrum instead of continuing to look for the population desired (other parents). I wish instead of asking us if we had any questions, we had been asked questions about autism from the inside. Now, let me be clear, I don’t think this parent had an obligation to do so, clearly this individual was looking for a support network of others who were also parents. Still, autistics showed up, also needing support. They were brushed aside, most likely unintentionally, but the end result was a type of silencing.
Why do we have such a hard time hearing the needs of others?
Perhaps this is because we don’t recognize the similarities between us. We focus on the differences rather than our feelings, which can’t help but be similar.
Hope some of you chime in here. I’m still processing this whole ‘Scope event, and still don’t feel great about it. I think it is wrong for people in power (parental figures, bosses, teachers, etc.) to extract their needs through those they have power over. In fact, this dynamic is exactly what sets up emotional abuse, and sexual abuse. Whether or not the individual circumstance is wholesome or abusive isn’t really the point. The point is, the dynamic makes it possible for an abusive situation to manifest, so it doesn’t sit well with me under any circumstances. But maybe I’m blowing the whole thing out of proportion? Would love some help reasoning this one through–hopefully with multiple points of view.
All in all, I think this brief experience helped me gain a little clarity on how to approach this blog, and how to be welcoming to all who need a little injection of positive solutions and support–regardless of their role in their own world of autism. Hope you’ll share with me.