I took Nat to the Autistic Self Advocacy Network (ASAN) meeting on Saturday, at the invitation of a friend who is on their board. I’ve been wanting to write about this but I’m afraid to. Talking about autism is a freakin’ landmine, and the only way to get through it alive is with honesty, compassion, and sensitivity. So here I go, hopefully.<\/p>\n
I really like the people at ASAN and I approve of most of what they stand for; they do things like push for legislation that would end the use of aversives in the state of Massachusetts, or comment publicly on the new definition of autism in the DSM. To me they symbolize the neurodiversity movement, or what I think of as real autism awareness: to make society aware that autism is not a tragedy or a disease; it is a difference in neurology.\u00a0 Autism Spectrum is a political minority that must be respected and accommodated, like any other group that is outside the norm.<\/p>\n
Even though we parents of autistics (most of us) want nothing more than for our children to lead fulfilling lives, be happy and healthy, and even though adult autistics (most of them) likely want as good a life as possible, health, and happiness, there is a lot of animosity between the groups.\u00a0 Why is that, one of the ASAN members asked the other day.\u00a0 I ventured to answer, “Because you don’t look like their children.”\u00a0 He was upset by this, because he felt it was an unjust judgement of him and others like him, with high-functioning Asperger’s Syndrome.\u00a0 He asked how could these parents make this assessment of him, not knowing his functioning level as a child?\u00a0 Maybe he’d been nonverbal as a kid; maybe he’d been self-injurious or aggressive. Just because he is not like that now doesn’t mean he is not on the Autism Spectrum with your (my) kid.<\/p>\n
I completely understood his point, and agreed with him. And yet I also completely get where these parents are coming from, the ones with more deeply autistic children.\u00a0 And it was very significant to me that the ASAN members there were mystified by the antipathy of some autism parents, because I had brought Nat with me to the meeting.<\/p>\n
We were in a very very quiet Trustees room in a public library. There were four ASAN members there when we walked in, a little late. Two of them I knew and one of them is, as I’ve said, a friend. Everyone greeted us warmly, and then continued with their conversation, which was about the DSM and its boneheaded intent to alter the definition of autism and effectively lop off a significant number of Aspies who will no longer fit the criteria. Who will then no longer be eligible for any disability services.\u00a0 Comes the Revolution…<\/em><\/p>\n The moment we sat down Nat turned to me with those Bambi-in-the-headlight eyes. “Party,” he said. “Snacks.\u00a0 Cookies.” In other words, “Mom, you said there’d be snacks here! You said it would be like a party.”\u00a0 So right away I felt a little bad because Nat was not happy with what we’d found there. Somehow I’d thought he would know what I meant by meeting. I guess I had said that it was kind of like a party. Well, some meetings are.<\/p>\n This meeting was the other kind, the pin-drop-silent kind.\u00a0 The very very intelligent, cerebral angels-dancing-on-the-head-of-a-pin kind. And there was Nat, feeling a little miffed and uncomfortable, and so his solution was to talk to himself.\u00a0 This will be very interesting, I thought, as I noticed everyone noticing Nat’s self-talking. They were noticing but they were not remarking; they spoke over him and along him.\u00a0 They were okay with it, in other words.<\/p>\n But I, of course, was not. I am the Queen of Oversensitivity. I see insults where they don’t exist. I feel the hot flash of shame when other people are in the wrong. I feel embarrassed pretty easily.\u00a0 And so I worried that Nat’s self-talk was a big distraction to everyone. I wondered if anyone in the room had issues with too much noise, with essentially two conversations happening at once. I had no reason to believe there was a problem, but I felt that Nat’s sounds were awkward.<\/p>\n It was like the proverbial elephant in the room. I wanted to ask people if they could concentrate okay, but I thought that they would be offended for Nat. Even though they might actually have been having trouble, it felt like it just wouldn’t do for anyone at an ASAN meeting to complain of someone else’s stims. I am not being facetious here. I was overly conscious of what we could have talked about but were not. They were either too polite to or did not notice.<\/p>\n At one point the conversation turned to “what is repetitive behavior?” and Nat’s talking became so loud that I whispered very very quietly to him that he should try to whisper… He, my lovely Nat who always tries SO hard, obliged, and whispered to himself for a good long time after that.<\/p>\n I’m the one who is very very unlovely, because I was trying to stifle his stimming even when we were among autistics! I nearly choked on the irony. No one gave a shit about the self-talk: so why the hell did I?<\/p>\n We stayed through the meeting; every now and then someone would try to draw Nat into the conversation, sometimes guessing (wrongly) at what he’d answered, sometimes just high-fiving him. I truly enjoyed the discussion, because I really do want to be a bridge between autistics and parents of autistics. I feel that in highly incendiary situations like that, my oversensitivity is a good thing. I felt that I did a good job explaining how the angry parents feel, that the adult Aspies do not resemble the “low-functioning” autistic people.<\/p>\n I did everything but point out the elephant taking up so much space in that quiet little room.\u00a0 “Look!” I could have said. “Case in point! Look how different Nat is from you guys! Do you think he even knows half of what you are talking about?” I wanted to ask this but I didn’t because it would be disrespectful to Nat and because I didn’t want to piss anyone off.\u00a0 And maybe it wasn’t even true.<\/p>\n Driving back home, I asked Nat if he’d want to go to another meeting. “NOoo,” he said immediately, definitely. I smiled sadly to myself, feeling something like, “See, he didn’t get anything out of it.”<\/p>\n But still I wanted to talk about it all some more. I decided to go right to the heart of the matter. “Nat, those people at the meeting have autism.\u00a0 You have autism, too.”<\/p>\n “Yes.\u00a0 Have autism.” He was staring at me, clearly waiting for a conversation.<\/p>\n Whoa. “So, okay, you have autism, and I don’t. Autism means you have a hard time talking to people, a hard time understanding things sometimes.”<\/p>\n “Yes.” He was still staring at me as if I were giving him the key to the universe.<\/p>\n “Autism is called a disability, Nat. Disability means it is hard for you to do some things. Like talk. Autism is a disability.”<\/p>\n “Yes.”<\/p>\n “You have autism, Nat, and so you do some things differently, okay?”<\/p>\n “Okay.”<\/p>\n “And that’s okay.”<\/p>\n “Okay.”<\/p>\n But I did have to admit to this second irony of today, which is that clearly I’m the one who still doesn’t know that it really is<\/em> okay.<\/p>\n","protected":false},"excerpt":{"rendered":" I took Nat to the Autistic Self Advocacy Network (ASAN) meeting on Saturday, at the invitation of a friend who is on their board. I’ve been wanting to write about this but I’m afraid to. 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