I’m attending the Aspen Ideas Festival for the next six days. As a result I am meeting a great many interesting people. But many people who see my Press badge are curious, what do I write about? How is it that I’m at the Aspen Ideas Festival? Inevitably the conversation comes around to autism, because let’s face it, that is what I write about more than anything else. Autism is something that everyone has an opinion on, or if not an opinion, then a great many ideas.
Most of the comments I hear are in the – It’s an epidemic, vaccines must be the reason, or questions about where on the spectrum my daughter Emma falls. If I say something positive about my daughter, they usually respond with the mistaken assumption, “Oh she must be Aspergers,” or “You’re so lucky she’s so “high functioning.” As though that could be the only explanation for words that aren’t negative. Amy Sequenzia eloquently describes her journey from ableist to advocate, on the blog, Autism Women’s Network. It is the single best description I’ve read, which explains beautifully how our perceptions and ideas about autism affect those who are autistic.
Often people want to tell me stories about someone they know whose cousin, brother/niece/son/grandchild/best friend’s step brother/best friend’s neighbor, is autistic. Sometimes people are genuinely interested and will ask me questions, but most of the time, they prefer telling me about that person they know twice removed who knows an autistic person. There is a tremendous amount of fear out there. I hear it all the time. People talk about autism with the same grave tones they speak of the environment.
So I wasn’t surprised this evening when I met a couple who’s close friend’s grandchild was autistic. “It’s so sad, just awful,” the woman said. And then shaking her head she added, “It’s such a dreadful disease.”
“Actually it’s not a disease. It’s not contagious. It’s neurological,” I interjected.
The woman paused and stared at me and then said, “It’s horrible. Very, very sad.”
“I don’t see it as a tragedy,” I began.
“Oh,” The woman interrupted me, “well, of course you don’t.” She took a step back and smiled. And just like that, the conversation was over.
When I have these sorts of conversations, I see just how far we have to go in educating the public. I know we will have to undo centuries of ingrained thinking about disability. I understand that some people will never be convinced. I hear others who have an opposite and yet equally unrealistic view of autism. They are the ones who usually bring god into the mix, or talk about angels, or how these children are all geniuses or shamans, but whichever extreme they choose it is still an extreme and both do damage to those who are living their lives on the spectrum. Whether they are being condemned as a tragedy or placed on an altar, they are being put in an impossible position that does nothing to actually help them.
It’s tricky. How do you think about someone who needs tremendous support? For many it is impossible not to project pain, suffering and the idea of tragedy onto them. But very few people I know who are autistic or disabled want pity. They want help, support and acceptance so they can flourish. Pity or the converse of that, adulation, holding them up as divine creatures put on earth to teach the rest of us some hard-earned lessons, is not something I’ve ever heard an Autistic say.
One of the presenters at the Aspen Ideas Festival, Louie Psihoyos, who directed the amazing Academy Award winning documentary, The Cove, said during the Festival’s opening, “A few thoughtful people can change the world.”
I believe that absolutely, I believe.
Emma on the 4-Wheeler
Emma's Hope Book 
I loved this blog this morning. I agree with so much you have to say. It’s actualy harder to deal with people when they say things like “where on the spectrum is ….”. I never knew how to deal with this. I found a funny joke come back though and I plan to use it when I hear people being stupid this way. “Are you a high functioning or low functioning NT.” Lol no one thinks of it that way. That people are people. Even often as parents it’s hard not to get so caught up in the lable when your dealing with treatment or helping your person get through life. But what I have found hard is that I get things ” like they are so well behaved” then they say “so they are high functioning then.” Like I now would like to share the nitty gritty of there cognitive with a total stranger. When I stare at them now I’m the one Being rude lol. I hear things like my friends kids worse he can’t behave like yours. If I say we have been doing therapy and it has helped us then I’ve implied the other mother isn’t doing enough and that’s not true at all if I say nothing then I’m rude again and so on. My point is it’s hard to talk to anyone thease days about it cause a lot of stupid stuff comes at you. And just like they don’t know what to say to you and put there foot in it. I find with my self anyway I put my foot in it right back. I don’t know how you do it. Talking to others about Autism is so hard in person for me. My hat goes off to you. Im just not comfortable with people like that. The computer isn’t so face to face so it’s not the same. Thanks for allowing me to share my thoughts with you. Ramble on over:)
Personally, I love a good ramble!
It’s true, it isn’t just other people who have a hard time talking about autism, it’s most of us. I do too, often because I know people mean well, but their views are so divergent from mine and I question whether they really want to hear a differing point of view, most people don’t, it seems. Many times they express feelings that I once had, and that too can be painful. I don’t mean to offend, or come off as being brusque, but I know I sometimes do. I think for most though, it really is a matter of meaning well and not knowing what to say. Often people don’t want to say the wrong thing so they talk about the person they know who knows someone who’s autistic. It’s the, “have you tried ________?” that I have the most trouble with.
I find questions where they are really curious easier, but I can get carried away and go on and on, while the person gets that glazed look in their eyes and then I realize they were a little interested, but not THAT interested!
Lol I do that too! I get too technical and then they wish they didn’t open that can of worms. I’ve ran into the well intended and I’ve ran into the not so well intended. My family has gone through a hard time living in small community. Some are the first just well intended. The other is more hurtful. I have two boys. My eldest is verbal and my youngest is considered non verbal. We have made great progress with ABA based school. When my eldest could not speak he was less excepted. When his words returned he was given a chance. Often we would find the mothers picking and choosing if they would include kids who lived in the community who were on the spectrum based on ability so, called high functioning kids were treated better then what some call low functioning. My youngest son having no speech often put aside or judged. I have to say I believe that speech has nothing to do with reasoning. His ability is often affected by many parts of the disorder so he functions just the way he functions no more no less but how can I explain that with out the crazy long explanation I just gave. I saw some of the other answers they were the best things I’ve read in a long time some had me pondering and me and my husband talking way into the night. The way to find exceptance for all abilities and different thinkers. One thing that came up that I would like to share with anyone who could read this who may interact with someone on the spectrum is when it comes to ability never count a person out cause they can’t speek. And unless you plan to teach or give a type of service you don’t really need to know high or low functioning. It’s how you intend to treat the person that matters. Ps biggest pet peeve is the pitty or the it’s what god has done to teach us stuff. That’s just me though and I am a proud Christian firm in my belief in Christ but I just feel it’s not nice to say when I’m having a bad day. I know ramble ramble
I think people in general get sucked into the vortex of comparisons and this is only worsened when they don’t understand something. I imagine if I were parenting an NT child I will not be spared of the level of functioning except it will be called grades or achievements and then the child and I will be judged on these as our worth. This means the people judging put themselves through the same filters of worth and self worth, not a pleasant state to live.
I do believe my child has taught me incredible lessons and that has more to do with comparisons and how we measure what passes as worth, value, contribution, and meaning in life. However this is only my perspective and my child may very well want to get on in life free of any grand lessons in meaning, or not… This is his right to perspective. I find it strange that people who don’t know are in such a hurry to show how little they truly know (maybe this is built in Darwinian selection I’m guessing) when they are speaking to someone who knows from first hand experience or personal experience.
But those who do know from personal experience, I tend to be more lenient on, so if believing that god did this or angels have something to do with it and this helps them spend energy less on blame and more on doing what their loved ones need, then I can live with that, they have a right to their biases as I do mine.
It sounds like society in general is thinking about autism in checkboxes, can they sit and eat in restaurants? Check means high functioning, etc. when autism is not a standardized multiple choice test, but rather a narrative and personal essay that will read differently from person to person even as it all describes a common set of topics. Like literature, not standard forms 🙂
Oh Jane absolutely, my daughter is an amazing teacher, I just don’t want her ever to feel that’s her role or responsibility. My son is also a wonderful teacher and I can honestly say that about a great many people in my life, but that isn’t their sole purpose in life, to serve me. I would personally not appreciate those labels and thinking being applied to me no matter how true it might be for the other person.
I’m guilty of getting caught up in the labeling. I often think that if Risa was Aspberger’s or “high functioning”, I could HANDLE it. That it’s her being so “low functioning” that is killing me. True, it’s harder dealing with a non-verbal, non-potty trained kid. But higher functioning kids have sets of issues all their own. It’s a tough gig no matter where on the spectrum your kid falls.
Angie, I am guilty of those labels too! I have to be vigilant and even then I can make those types of comments. My daughter is not “Aspergers” and it is different, yet other than dividing an already divided group, I don’t know what else it does. These are difficult issues and I certainly do not have the answers. The best I can do is hope that I continue to learn and make progress.
This post struck me hard. I have to say Angie it really is hard having a child non verbal, untrained and still growing. I have not met any mothers in my same boat yet. So it’s pleased to meet you here. Being a mother with children who have both have ASD has been tough. Tough because I’ve been the biggest provider of therapy for both children. The organizer of treatment for two. I’ve been able to make steady and fruitful gains with my first child. I continue to work every day. It’s 12:41am right now lol and I just gotten a moment to do bedtime reading. It’s been the most hardest thing for me to see that I can teach and deliver therapy for one with loads of success, train one, get one in regular class placement and achieving and not get that for the other son. When others point the finger at me and say I have failed I have to often talk my self out of the bad thinking and know I’m doing my best and he is too. It’s the hardest road to walk when your child grows and is considered non verbal and is not gaining true independence.
Thank you. This is beautifully put. As the father of a nonspeaking almost-twelve-year-old autistic child who also has other challenges but is basically a happy and determined young woman, I too often encounter these (often ostensibly “well-meaning”) discourses of pity. Your way of responding is a great model for me to contemplate.
Hi Dellantonio, It’s nice to meet you out here in the virtual world!
Beautifully said. I must go to bed, but had to comment:) Amy is a dear friend and I, too, love that post. She’s also written an incredible post on “functioning” issue, ..http://www.shiftjournal.com/2012/01/11/non-speaking-low-functioning/ .
Thank you so much for the link. I just added the link to her poem Happy To Be Myself on tomorrow’s post!
It is suc great poem! she’s a very talented writer and amazing human. We are lucky to have her write for ollibean, but even more lucky to her as a friend. having adults with autism as mentors has been so very important for Henry. Important for our whole family. really like what you are writing about that, too. looking forward to more of your posts!
Also a mom to a non-verbal 8 year old little boy! Great to see you all on here! Great input! 🙂
Reblogged this on wincharles.
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