High and Low

Today was one of those days. They don't happen very often lately, but when they do, I start going to the dark place.

Liam had an "observation" at a social skills program I have been trying to get him into for three years. It is funded by Regional Center and has had, at times, up to a one-year waiting list. There are two levels to this program. Level One is for "lower functioning" kids. Liam qualified for this one last year (based on his behavioral difficulties) and after the observation, I decided against sending him. The location was a long drive and, in my opinion, the program would not have benefited him. After all his progress over the last year, I asked to have him re-evaluated. I took him to the assessment last week and was told that yes, he seemed to have the necessary cognitive and verbal skills for this level. He did not comply with the standardized portion of the assessment, which I believe raised the red behavior flag for him.

I dropped him off at the program this afternoon after telling him it was a place for him to learn to make friends. I had already prepped him about what would happen and this is not his first foray into the world of learned social behavior. He was already pissed off because his sister couldn't go with him, but he seemed ok at the drop-off, joining the other kids with no apparent problems.

Forty minutes later, with a handful of items in my arms at Anthropologie, my cell phone rang. I knew without looking at the caller ID that it was the site manager of the program. "What's going on?" I asked. She told me she wasn't sure this was going to work out for Liam; he had become aggressive, grabbing one child's hand and kicking another. He began spitting when asked repeatedly to do a non-preferred activity. I agreed to come get him and hung up.

My knee-jerk reaction was "God damn it! I knew he'd fuck this up. He needs this more than anything, it's almost too late to get it for him, and now he's lost himself his last chance." I was close to tears as I drove over to the school.

I went into the classroom where Liam and the director were alone. The other kids were on the playground. I told Liam to get over to the playground and explained to the director that keeping him inside was actually a reward for him.

She told me they just can't have aggressive behavior. I said, "Are you telling me that in the history of this program, no child has ever kicked or hit another child?" "Not in Level Two," was her answer.

So we're here again. We're at this place AGAIN where people with autism are divided into levels of functioning. Teachers do it, professionals do it and worst of all, parents do it. "My child has autism," a parent will declare at some meeting and quickly follow it with, "High functioning." Thank God. They have to make sure no one imagines their kid wandering aimlessly and friendless around a playground, muttering to himself--like my kid does. When I tell people my son has autism, they often ask, "How um, how does, he . . um..." "How high functioning is he?" I offer, "It depends on the day. Just like my level of functioning."

When I got the full story from the director, who I'll call Mary, it became clear that Liam had done quite well for about 2/3 of the session. He had participated nicely in two group activities. When the activity changed to a guided conversation with three peers, he freaked out, sliding down the chair, kicking the table and eventually becoming aggressive and disruptive. I explained to Mary that we had seen this kind of behavior before from Liam. It was a fight or flight response to what Liam perceived as a threatening situation. I'm still not quite clear on why I had to explain that to an autism expert. I begged and pleaded with Mary, making the case that I had seen these same behaviors disappear with the right supports. His teacher had virtually eliminated them at school. Mary pointed at Liam on the playground, "Look, " she said, "He gravitates towards the adults. When the kids he knows tried to talk to him, he wouldn't respond." "I. Know." I answered, with what I consider great restraint. "That's why I brought him here." I eventually got her to reconsider, although I half believe she said what she needed to to get rid of me.

While I sat there talking to Mary, she was approached by a mom I know slightly and had last seen a year ago, when Liam was at his absolute worst point and I was trying to get him to succeed in a private social skills group, at which I was paying through the nose and doing all the work. "Great," I thought, about to laugh crazily, "She sees me and thinks 'Oh, God. It's that really fucked up mom with the really fucked up kid. I hope they don't let him in.'" It was demeaning to be seen in this situation yet again, literally begging for my kid to be included in a group for kids WITH AUTISM. I pointed out the frustration of this to Mary. I said, "You have to realize how hard it is for me to hear that my kid needs help so much that you can't help him." "I'm just trying to think about what's best for Liam, " she said, "I'm trying to figure out how we can make this work. I'll have to talk to my supervisor and get back to you." I won't be waiting by the phone for that call.

Instead, I called my amazing friend Lisa, who told me what I, on some level, already knew. Liam was set up to fail in this situation. What really steams my ass is that there is one kid in there who is not autistic. I know her family quite well. Her mom fought like hell for her to get the diagnosis early and she received every benefit from the state--including 40 hours per week of ABA. For whatever reason, she is now indistinguishable from her typical peers. Her school district even ended her IEP--she doesn't need it. But she is getting respite care, MediCal and now this social program that my son is about to be turned away from--all funded by taxpayers. I can't even see straight when I think about it.

The way this looks to me is that there is a group for the non-verbal and/or behaviorally challenged kids and one group for the highly verbal, socially appropriate kids, but nothing in between. Yet again, my son slips through the cracks.

What does it mean when a kid with autism is turned away from a program to help kids with autism because he acted autistic?