(Please note: this post can be upsetting for some; depending on how emotional topics impact you, read or don’t-read accordingly. In short: take care of yourself.)
I spent a few years in therapy, speaking with a psychologist about the autism spectrum, learning to manage social challenges, sensory issues and so on. I was fortunate enough to find someone with a background in autism issues, so the discussion ended up being constructive, beneficial. I’m collecting those discussions, hoping to make them available soon. But after reading this post at Diary of a Mom, I wanted to share a particular session. In that Diary post, Jess writes about the need for parents to comes to terms with a child’s spectrum diagnosis, to feel at peace with it. The alternative…rejecting or denying the diagnosis…can be a devastating experience for the autistic involved.
My own diagnosis is something my parents refuse to discuss…for them, it’s a forbidden topic. I think they feel ashamed. And I am regularly contacted by parents who ask what they can do to help family members be more accepting of their child’s diagnosis…they describe negative reactions; sometimes shame, sometimes mocking disbelief.
Family members and negative reactions to an autism diagnosis: I don’t know how to address this issue. I don’t know the answers. I just know we have to tell stories, share what’s happening, because answers for these situations are urgently needed.
This conversation is from a session that took place in December, 2007.
In recent weeks, we’ve been discussing sensory issues, particularly how to manage light sensitivities. But today The Doctor asks what I do about haircuts. I tell her that the sense experience is unpleasant…and the social component, i.e. conversing during the cut, makes it more than I can handle. A few years ago, I just bought clippers, scissors and started doing it myself.
She says, “With your permission, I’d like to share some of the coping strategies we’ve discussed with a parent. I’ve been meeting with her and her son for awhile now.”
I nod, say, “I’ll sign the release thing.”
There’s a long pause. She leans forward and looks at the floor. Thinking…emotional…but smiling.
“He’s one of the little ones. Wonderful kid. Very articulate, bright, but struggling. He was going through this phase where any little change could push him over the edge. The sensory issues…there was just so much confusion for him, and he would become violent. He was beginning to hit and bite family members. He was beginning to scream constantly. So I meet with everyone. I do the screenings. I diagnose Asperger’s. We start therapy. And in this instance, I’m going into the community…meeting at his house, at school. If he has to be in a public location, we’ll arrange it so that I can meet him and his mom there. And at one point, the goal is to help him get a haircut. I meet them at the barbershop on numerous occasions and all I’m trying to do is establish a comfort zone. ‘You do not have to get your haircut today. There’s no pressure, okay?’ We really focus on that, the comfort zone…with something as small as a haircut, it can take a long time to prepare. It can take years. So we’re working on that…but then, on the 8th visit, the mom doesn’t bring him. It’s the dad.”
She breathes out.
“The dad…he sits off to the side and watches for awhile. He has his arms crossed and…you know, you just knew what was about to happen. You could see it coming. I’m working with the kid and we’re just talking, looking at a magazine. We’re not even focusing on the haircut. Eventually the dad gets frustrated, starts shaking his head. He storms over…picks the kid up…and forces him into the barber chair. He squeezes the kids arms against his body so that he can’t move; he holds him there. He tells the barber to go ahead…he pins the kid in place the entire time, until the haircut is finished.”
I ask, “What did you do?”
“In situations like that, there’s almost nothing you can do. Ideally, you can avoid these things by laying down ground rules in advance; by explaining, ‘Here is how sessions work…here is how they don’t work’. In this case, the father chose to disregard the ground rules. In a bad moment, you can calmly address the parent, try to de-escalate the situation…but if they’re angry and ignoring you…I mean, that’s it. You cannot confront. If a kid is frightened and confused already, and then they see the adults arguing, it makes things so much worse for them. What you really do in that situation is: you start thinking about the next meeting. You continue therapy. And with the haircuts…the small amount of progress we had made, that was gone. The forced haircut undid all of it, the kid was understandably thrown by that. There are just times when your best option is to start over. You work on something for a long time and if necessary you go back to square one, and you work on it again and again, over and over, for as long as it takes. Too often with autism, the focus is placed on one question: ‘How do we make progress?’ And when the time is right, that can be okay…but it can also put an overwhelming amount of pressure on the autistic. Sometimes, the better question is, ‘What does this kid need?’ Sometimes, you gotta set the framework aside for a bit, protect that little heart. That’s always what you go back to.”
“Did the dad show up at other sessions?”
“No. It was the mom after that. At a later time, the dad sought a separation…he left the state. He let it be known that he did not want a relationship with the child.”