some thoughts about autism including my latest bad metaphor
kyra anderson | Friday, May 15, 2009 at 7:34AM As far as I can tell, autism is getting shortchanged everywhere.
Autism activists inadvertently communicate disability by saying our kids are their autism so stop trying to change them, effectively ignoring advances in modern neurology.
Medical and mental health professionals do the same by sagely reporting what autistic children will be able to do or think to terrified parents.
Educational professionals seem to take a more 'tough love' approach by deeming this accommodation or that device inappropriate because they are sure our spectrum kid can do or say this or that if they really want to as if dyspraxia is a choice, a child ‘acting out’, as if the solution to difficulty following the rules and instructions is the removal of favorite objects and privileges.
Society outlines how much autism is okay to express out in public.
Parents feel guilty and competitive about who is more accepting of their child or whose child is autistic enough for services, understanding, and support.
The one thing I don't hear enough is that nobody knows what autism is. Nobody.
So how can things like, "Autism is a life-long condition" be said? And further, what does that really mean?
I worry that autistic kids aren't all going to be given the opportunities they need to learn. But I also worry that parents of autistic kids are being led to believe that their child’s fate lies in their own particular talents at play therapy or at being a brilliant manger or at finding the perfect professionals or at securing gushing rivers of cash to pay for it all. The ghastly pressure, the flip side to having ‘caused’ the autism is the responsibility to cure the autism or be completely at peace with the autism, be held up as not doing enough or not letting go enough and on and on and on.
I woke up this morning and thought, what if we changed every word like 'therapy' and 'intervention' and 'remediation' to simply 'teaching'. And what if everyone agreed to stop spending millions of dollars looking for the autism gene or the autism cause and instead made a commitment to pour energy and funds into TEACHING and helping to PROVIDE what everyone needs. Everyone. Kids, teens, adults.
Everyone.
And what if the world had a gigantic pow-wow during which it was decided that autism (including aspergers) is a developmental and neurological issue that brings disability and ability, both.
BOTH.
The levels of ability and disability, and therefore the degrees of care and support and teaching will be complicated because we are dealing with individuals. It's not possible to make sweeping generalizations other than we all need to feel safe, loved, to feel that we belong, that we have the opportunity to make a contribution.
And a few more generalizations:
We ought to slow down.
We ought to practice more curiosity.
We ought to be careful about pouring toxins into our environment AND into our body.
We ought to value all communication including behavior and seek not to eliminate any expression but rather to understand what is being said.
We ought to value above all else, what can be learned in the context of a truly loving relationship.
I spend a lot of my time running different metaphors through my head. I can't help it. They are often awful, they don't hold up and so I add new metaphors to the existing ones, wave upon wave until most people tune me out or walk away, waving back at me as if I were a cloud of flies. This morning I wondered if some of the trouble, some of what makes up the 'Autism Wars' is that we parents and the autistic activists are coming from such different sides that it's not so much a matter of us not agreeing but of us discussing two different topics. Like making bread. We parents are making the dough. The activicts are the loaves of bread, already baked.
See? I'm losing you already. It doesn't hold up, I know. We don't MAKE our kids and adults are not DONE like bread. But if you will indulge me, what I mean is, we are talking about what we need to support our dough, to bring out its intrinsic beautiful unique nature. And activists are saying, this is who we are. Please don't denigrate it, toss it in the trash, pick it apart, analyze and criticize its qualities.
But children are not dough and they are also not adults. To be sure, the brain keeps learning its whole life. But they don't call childhood the 'formative years' for nothing. It is a powerfully fertile time. Parenting changes the parent and it also changes the child. Once the child is grown, the focus begins to shift to how to support what's there rather than how to support what is not yet there. That's not to say they are DONE. Far from it! There is always learning that can happen no matter the age or situation.
One day, my son Fluffy will be "fully grown and wandering around" as he once told me, expressing his perfect self in his own singular way. I would hate to hear him called disordered or wrong. I would rise up like a T-Rex and rip people to shreds. I'm sure that's how it feels to the activists, to hear themselves called wrong, to read accounts of autistic children, teens, and adults being marginalized, abused, killed.
We are with you, activists! All we ask is that you see that most of us parents are passionately working to understand and provide for, to teach, our kids. When we talk of fear or loneliness or financial pressures, exhaustion and worry, it's not a call for a pity party. It's a call for greater understanding and support, for the doctors and educators and neighbors and relatives and therapists and activists to recognize that extraordinary children need extraordinary care, extraordinary teaching, and we cannot do it alone.
Reader Comments (7)
Wonderful, as always Kyra. Really wonderful. I think your metaphors can apply to children with epilepsy as well. I especially like this sentence and thought: " And what if everyone agreed to stop spending millions of dollars looking for the autism gene or the autism cause and instead made a commitment to pour energy and funds into TEACHING and helping to PROVIDE what everyone needs. Everyone. Kids, teens, adults. " To me, it pertains to the almost constant need for respite, above all.
So much to chew on here. LOVE the thought of changing words like 'therapy' and 'intervention' to TEACHING. And this really resonated: 'And what if the world had a gigantic pow-wow during which it was decided that autism (including aspergers) is a developmental and neurological issue that brings disability and ability, both.' Well said. Thanks, Kyra.
That's it, yes!. Teaching not therapy. Teaching, and nurturing and guiding.
This is lovely and thoughtful- thank you. As a parent of an 18 yr. old, once Pdd, now AS son, I have often felt that the language, programs and mind sets bubbling around the autism world just aren't right, somehow, inadequate for the complexity and weird beauty of it all. It is almost as though we are in a car and our children are the landscape and we just want to SEE the landscape and understand it, but every different specialist/educator/activist/know- it- all pounds our windshield like the rain, sleet, snow, fog and the damn wipers keep getting stuck- all keeping us from just seeing and understanding the beautiful, if rocky and sometimes difficult landscape of our children's minds and selves. Too bad we can't talk about autism using poetry. I look at my son and think of Emily Dickinson - "the brain is wider than the sky...the brain is but the weight of god." Maybe the truest thing of all (not DSMV though, or IEP worthy.)
Amen, amen, amen! Brilliant!
Beautiful post, as always. I was particularly struck by this:" I woke up this morning and thought, what if we changed every word like 'therapy' and 'intervention' and 'remediation' to simply 'teaching'." Hmmm ... I like that. "Teaching" (or "learning") sounds like something that can be done with a parent's and child's own intuitive wisdom, with the help of some other gifted teachers, like speech therapists and RDI consultants, *IF* the family feels they're needed. It doesn't sound like something you need to be bullied into, handing your child over to some program lest you miss some vital window of opportunity. It sounds like something that's part of everyday life.
Once I started homeschooling (unschooling, freeschooling ... whatever I'm calling it these days), I started questioning everything. I no longer thought my child's future was dependent on state-licensed teachers or a hard-won IEP. What other assumptions could I challenge? Is this therapy or that therapy (which usually caused me great guilt, because we couldn't afford it) really necessary? Would my daughter be hopelessly screwed if we missed an important moment when we were supposed to be remediating that Asperger's when she was 7, or 8 ... or whatever? Does her life, and her learning process, need to be cut up into a dozen tiny pieces and distributed among various professionals?
Kyra, I find myself in the middle of this argument, too. I get that my boys (both of them autistic) are fabulous and unique and perfect the way they are. But that doesn't stop me from wanting to help them learn to be the best, most interesting and interested people they can be. The same is true for my NT daughter.
It's frustrating to me to feel so marginalized as an unaccepting of my boys and disrespectful of who they are when I talk about the different ways I help them learn. (I would have said "therapies" before I read your post, but I think I'm going to make this a permanent change in how I think about this.)
Thank you.