There are days when living Âûtistically is a wonderful time of joy, peace, acceptance and success. Today was not one of those days. Today could be better described as a day of getting it wrong, being misconstrued, misunderstood and struggling to understand what the hell happened, and how did I get here.
It has been an intense few days. With Âûtistic pride day, which saw me monitoring my Facebook page On Being Spectrummed. I had scheduled posts to go every two hours. In the midst of this was meeting some new people after a long public transport trip across town.
The weekend came along with responding to some posts on social media that were aligned with cure culture themes. This was energy sapping and distressing. I struggle greatly when faced with the reality of parents seemingly willing to do anything to convert their children from Âûtists into NT’s.
There was one post which seemed to imply that a particular parent was open to Chelation and Bleaching as cures if they could be shown to work.
Another post was the presentation of an Autistic pride meme replete with puzzle pieces. Some like the puzzle piece. I for one have lots of difficulties with it as it connects so closely with Autism $peaks. Much discussion was had on these posts. An energy sapping experience of trying to have my Âûtistic voice heard amidst a stream of NT voices. A challenge in its own right. This was coupled with the emotional baggage of parents feeling you were telling them how to parent their children and that you were saying that you somehow knew their child better.
The culmination of this was a post thread that developed into a dialogue about ABA therapy. There was much emotion, much misunderstanding, taking personal what wasn’t and throwing around of opinion.
For me ABA is just horrid. There is no question that a therapy, which, has still on its books aversion, restraint and isolation as legitimate parts of a therapy. The very real concern about all this was the statements spilling forth of but that’s not my ABA. That ABA has changed and things of the like. What was impossible from my point of view was actually having the Âûtistic persons perspective, rather than the perspective of the NT parents who felt they needed their children to be “normal” whatever that means. However, none of that is really the crux, of all that I am trying to say.
So what am I trying to say. I guess I am trying to say. It is so frustrating when you get it all wrong. So what happened and how did I get here?
Thinking I was presenting factual unemotional information and having a logical and dispasionate debate. Followed on with the missing of the emotional responses and mistaking them for factual rebuttal. This situation goes back and forth and escalates dramatically over time whilst the rapidly increasing emotion is continued to be missed and therefore not taken into account.
Trying to keep explaining in a dispassionate way, whilst being told you are 100% wrong, and believing your voice is being silenced.
Eventually stepping back from the situation and feeling like you tried. Discovering later that you have effectively insulted, hurt and offended people. Not really being able to understand how this has happened.
The situation that follows is that after a few hours standing back from the situation and the time for the mind to percolate some of what has gone on, is a feeling of deep self-loathing, guilt, and pain.
Apologies are then presented, but relationships are impacted. Burnout, or shutdown, are risked. Real feeling of anxiety and depression rise and deep wondering of how much hurt has been caused is prevalent.
Is this a factor of empathy? Or is it communication? Is it reciprocity? I am not sure. I don’t think it is an empathy thing, that is, I believe the cop-out line that is often levelled at Âûtistics. I believe that really is a furphy and that Âûtists are often deeply empathetic. Yes, absolutely the expression of that empathy can be at times problematic, but the actual feeling empathy and being empathetic is not really the reality. Clearly there is a range of empathy feeling and expression across the human species regardless of neurological standing.
A day in the life living Autistically. That’s what it is. Would I want it to be different. Not if it means not being me.
Thanks for reading.