One of the seminars I attended at the ASA Conference was led by a panel of parents on the spectrum raising kids on the spectrum. They got their diagnosis after their children were diagnosed. One of the many things they talked about was the invisibility of this disability and the difference in how society responds to those with ASD compared to those with visible, physical disabilities. To the latter, society says, adapt and adjust! To the former, society says, remediate remediate remediate!
With the exception of one person, these people had aspergers. They had spouses and children. Most had jobs. They were making their way in the the world. I don’t say that to take anything away from them, their valid experience, point of view, political self-appointment as the voice of ASD, and real frustration with the fear, ignorance and limited vision of those suffering from neurotypicality. But I did note there is an assumption that all kids on the spectrum are experiencing the same thing when they’re not. And neither are their parents.
It was enlightening and I was glad to be there but I left wondering, where is the place for NT parents to talk about their experience? It isn’t a lament of raising a child with ASD; it’s a struggle to provide for their child, to give them a good life, a whole life, an independent life. I’m all for expanding the breadth of acceptable neurology. I’m all for respecting and broadening the scope of acceptable behavior. But when I hear angry calls to get away from the ‘grief model of diagnosis’, for aggressive slaps of CONGRATULATIONS! YOUR CHILD HAS ASD! I tell you, I pause. What is this? What is going on? What has happened to acknowledging the process? The human process of coming to a new understanding? Of moving through the unexpected to acceptance and in the process, changing, growing, containing more?
It reminds me of when my ex-husband left me. I met a woman who had been through a divorce years earlier. I barely knew her but when she found out about my situation, she flashed a clown smile and practically shouted, OH I'M SO EXCITED FOR YOU! I wanted to punch her in the face. She danced around, boogying to the pulse of my new life. The freedom! The choices! The discoveries! The opportunities! But I was in the middle of the explosion and I needed time to sort through the mess, to step around and FEEL WHAT I NEEDED TO FEEL, grieve what was lost, and then slowly see what was now possible. My life eventually got better than I ever imagined. My new relationship happier and more realized. But I had to go through something to get there. Many people were uncomfortable with my process, with my hanging it out there, with my dark feelings, my fear, my sadness, my anger. They wanted me to clean it up, get over it! Or at least suck it up long enough so that they didn’t have to see it, so they didn’t have to let it rustle up anything in them.
Now, discovering your child has ASD is NOT the same thing. No no. Please do not misunderstand, pull my words out of context, quote me and then tear me to pieces! But, as with any profound change, there is a shift, and in that shift, a loss, and in that loss, grief, and in that grief, a process and through that process, an expansion or at least the possibility of an expansion that makes for MORE ROOM for GREATER SIGHT. Why the rush to push it away, brush it under the rug? What is threatening about it because I can only think it must be threatening for there to be this reaction. If it were only a matter of not relating or identifying with this process, wouldn’t there be more curiosity?
I don’t hear people acknowledging enough that ASD is a SPECTRUM disorder. Okay, right there. I should not say disorder? But I may say spectrum, yes? It is a wide spectrum with a wide band of expression and for lack of better word, severity. It often (always?) comes with other co-occurring conditions that increase the challenge both for the child and the parent raising the child who is trying their best to provide what that child needs most, for their happiness, for their actualization, because that is what parents are trying to do, help their child actualize. They have a role that lasts a certain length of time (usually) before they pass the baton, and they want to do their best by their child and for their child and the confusion and difficulty made by the perplexing nature of their child’s unusual neurology coupled with the paucity of services and supports out there in the world and the level of misinformation bombarding our circuitry, well, it’s a lot to deal with.
Some kids on the spectrum are socializing and communicating and moving on their own, dressing themselves, developing relationships, walking, talking, using the potty. Others are blind and having seizures, unable to physically navigate, still in diapers, eating through a feeding tube, struggling to communicate their feelings thoughts and needs and unable to connect to others easily for a whole host of reasons. It is so completely obvious to me that these children are every bit as blessed and precious and valued as any other child, that they need and deserve respect, love, education, care, attention, that their lives are as important as every other life. ISN'T THIS OBVIOUS??? And isn’t is also obvious that their care is more complicated? That their parents are moving through something very different than most, certainly then what they anticipated? That the parents in the first group, on one end of the spectrum, the families on the opposite end and all the families in between are experiencing something that is hard? Couldn’t it be possible that these parents experience a kind of worry and concern about their children every day? About their future? About who will care for them when they are no longer alive? Let’s not sweep our arms across the room in a blind gesture of mild irritation, impatience and judgment for those that are, at the very least, experiencing stress and anxiety about providing for their children who require something more and different because they are not of typical neurology.
Yes, ASD is not just a disability issue but also a diversity issue. Yes, we can and ought to shift the message from tragedy to hope. Yes, we can shift the focus from a pressure to normalize our kids to have them be “indistinguishable from their peers” to a genuine and serious effort to educate society, to move toward acceptance. One panelist, said, what’s so awful about hand flapping? Why isn’t it okay to hand flap in this world? Why can’t we take the stigma out of the ASD diagnosis and the expression of unusual behaviors. Yes! I want to stand up and say, Hand flapping is fine with me! And, Stimming is a stupid word! We all stim! And, Why do we have interests and passions and those with ASD have obsessions? And, Why don’t we look more closely at our language and choose our words more carefully? To words of acceptance and inclusion rather than rejection and exclusion? One goal, spoken by an autistic activist, was to grow a feeling of competence in those with ASD, to help them better navigate the social interactions that are a very real and everyday part of life. Yes, again! (RDI anyone?)
And while we’re working to take the stigma out of an ASD diagnosis, let’s also take the stigma out of talking about what’s hard in dealing with autism. Let’s stop pushing away the necessary process of acceptance that occurs when your child is diagnosed with autism. That is not the same as having a round table discussion of whiny parents complaining about how hard it is to care for their child, which I hear is a big problem in the NT population. Huh. Is this true? I’m not hearing this but maybe I’m out of it?
And it’s certainly not the same as thoughts of harming one’s child. My god. Killing your child is mental illness. Thinking of killing your child is mental illness. Promoting the idea that NT parents of ASD kids are all straining against these sort of thoughts is fucking lunacy, dangerously irresponsible and quite possibly, mental illness.
But for me, there’s a tiny elephant in the room and it looks sort of like this: There is a difference between those on the spectrum who mostly “pass” and those that stand out. That is just the truth. It’s harder if you stand out. If you sound funny when you talk or if you don’t talk at all. If your pants are up around your armpits and your fingers are in your ears. If you look at things sideways. If you scream and hit rather than say, no thank you. If your typical stroll through the mall is following your tongue as it drags against shiny metal surfaces. It is. I want to live in a world where all of that is okay, where it ISN’T harder, where no one scowls or laughs or wishes "it" would all just go away. I really truly do. In the meantime, we live in a society where wearing size 6 is a sign of being a fatty pants, where nursing in public is considered lewd and disgusting, where stepping inches out of the narrow and ever changing target zone of hip and cool and acceptable is cause for ridicule and sometimes, terrible violence. How close are we to embracing hand flapping? Really? Sadly, we are closer to abiding a careless, bigoted, greedy moron as the leader of the free world than rising above panic or alarm over a beautiful child flapping her hands off to the sides.
Still, we must create the change we want to see. We must create a society that extends equality, respect, and acceptance to all.
What and who is society? According to Barbara T. Doyle, one of the ASA Conference presenters, it is Everyone. Everywhere. All The Time. Society is the one lady who sees how you are with your child in the checkout line; society is the class who observes how the teacher responds to the child’s difficulty in the hallway; society is the group at the neighboring table who watches how you interact with your child in the restaurant. Society is everyone who sees you resist the urge to hurry up and get out when the going gets rough and instead, use the opportunity of being looked at to educate and demonstrate the child’s unconditional value and worth. Every time. As best you can.
Doyle suggests coming up with your own definition of autism that is simple and direct that you can say in an instant so others can begin to digest it. Here is mine: Autism is a developmental issue that makes social situations and dealing with sensory things harder than the typical person.
She said many other wonderful things. Here are just a few:
Put the relationship ahead of compliance. (Do we really want our kids completely compliant? Consider someone saying this: Drink that up. Get in the car. Take off your clothes.)
See all behavior as communication. Don’t seek to extinguish behavior until at least you understand what is being communicated.
Respond to all communicative signals as quickly as you can.
When you’ve erred, when you’re stuck, choose a respectful response that minimizes the tension.
Help eliminate the US versus THEM mentality that is reinforced every time someone says something like, you are SO patient to deal with that every day! You are such a special person! God chose you because such and such and la la la. Phooey. The message is, YOU must be SO SPECIAL to be able to deal WITH THEM. We are not divided that way, or we ought not be. We are we. I do what I do with my son because I love him, I rejoice in my time with him, I learn from him and I am compelled to be the best mom I can be because it’s important to ME.
What is this world we want to create? The one we don’t have because, in part, we’ve never tried to create it? Because up until now, we haven't seen the ‘affected’. We’ve been busy keeping them in, keeping them away. But now it’s time to bring them out. Bring everyone out. And here is what everyone needs:
To be safe, to belong, to be valued, to make a contribution.
And if we experience difficulty in creating this for our children, let us keep making the space to talk honestly about it.