I didn't intend to write tonight, but in surfing my amazing blog friends on Facebook, I came across an article someone else had posted about a recent C-Span feature in the US about federal responses to autism. Now, I don’t pay a whole lot of attention to US politics in general, but the principle of the article interested me – that two of the panelists in this tv feature had autism themselves, and the author’s take on it was that no one had really listened to what these men had to say about themselves and their community.
I’m not even going to attempt to get into the political murkiness of which organizations fund what and why, but I do know that as awesome as all the bio-medical and causation research is, it’s not helping my students, who need funding and supports for programs that will help them communicate, self-regulate, and participate in the world as much as they want to.
Now, I’m not complaining, either... Room 10’s little slice of life in the autism world is pretty beautifully supported in many ways – our complete sensory room, our community programs, our visiting therapy dog, and our amazing new gross-motor play structure (thank you grant funding and anonymous donor!) But none of that helps my buddies when they go home, and I know the wait lists for IBI, respite care, social groups, OT, PT and SLP support are long and often expensive. Maybe instead of focussing on a “cure”, we could at least SPLIT focus and spend as much on supporting kids and adults with autism in ways that they need now?
This is the author’s take on the uneven funding and focus:
How is it that we can say we "care" about autism and those who are autistic, yet not fund programs that will make their lives better? How is it we can use war terminology and ignore that these words make those who are on the spectrum feel badly about their very existence? Is this how we want our children to feel? Do we really want our own children to grow up believing they are fundamentally wrong, at fault and "broken"?
Let's just say, for the sake of argument, that our autistic children, whether they speak or not, whether they are in a special education classroom or are included with a regular classroom, most of them, if not all, can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate in a way that we, who are non-autistic, can understand or recognize. Can we at least imagine what that would be like if this were done to us? Can we try, just for a moment to have the empathy needed to imagine? Are we compassionate enough to pause, even if for a moment, and consider the implications of what we are saying and doing? Even if we cannot or do not want to think about all the autistic adults whom we do not know, can we think about our own child? Our children will be adults one day, do we really want them to feel as so many autistic adults do? Do we really want our children growing up feeling they are a "burden" to not just us, but to society? Is this the message we want to pass along? Because at this moment, that is exactly what we are doing.
Which not only explains eloquently why funding needs to be re-distributed, but also brings me to a pet peeve in general when it comes to my students – the assumption that they can’t or don’t understand or hear what is going on around them. This DRIVES ME INSANE. And I’m not even talking about big things, like discussing complicated world issues in front of them, using inappropriate language or talking about our private lives in a way that we would never dream of doing in front of NT kids. I’m talking about little things. For example, how things went in the washroom. I mean, really?
Let’s just imagine, for a second, that a neuro-typical 8-year old with some kind of physical mobility issue needed help in the washroom regularly. Would we really announce, arriving back in the classroom, “Ok, Junior here went. He had a big poop, and it seemed to really be hurting him, but he got it out and washed his hands nicely.” REALLY? How embarrassed would that 8-year old kid be to have that announced to everyone in the room? THEN WHY ON EARTH DO WE DO THIS TO OUR KIDDOS WITH ASD??? Seems like nothing, but why is it that just because a kid is non-verbal, we assume they don’t understand or hear (or feel/react to) what is being said.
I will never for a second forget the words of CarlyFleishmann’s father, Arthur, in an interview he did about Carly learning to type. He said the worst moment was the one in which he suddenly realized that for years, they had been talking about Carly in front of her as if she wasn’t there. It stuck with me, and it changes the things I say and do every day.
I try to remember to talk TO my kids, not about them. And even when I do talk about them, I try to do in such a way as I would any kid – recognizing that they can hear and understand what I am saying, and speaking accordingly. Honestly, if I could change one thing about Room 10, it would be some kind of magical filter that reminds adults that our kids CAN and DO understand, and to speak and behave accordingly. About the bathroom... about our personal lives... and most of all, as the author points out, when we are talking directly about autism, or behaviour, or ability. No one should have to constantly feel as though the way they are is some kind of problem that needs to be solved, or that everyone around them feels sorry for them, or their families. And maybe, just maybe, they’d be a whole lot more motivated to communicate with us if we would just shut up and listen.