Paravacini is severely autistic and has been blind since birth. He is also a musical savant. He can play just about any song, from Bach to Britney Spears, after hearing it just once.
The concerto Paravacini played Wednesday night was written specifically for him by Matthew King, who met Paravacini a few years ago and was inspired by his abilities.
"He's not like any other musician I've ever worked with," King said. "I think music is almost like a substitute for language. He's spent his whole life communicating through music."
What's less cool is the way that ABC News tells his story.
I am not someone who objects to seeing savants on the news. I know that some people think it creates the impression that all people with autism have similar gifts, but I disagree. Savants are newsworthy because they are unusual, even among people with autism. They are some of our lights. We need to extend the coverage of more ordinary autistics, not object to showing off the talents of someone like Derek.
But the emphasis on nickname "Human iPod" bothers me-- it reminds me of "Tape Recorder," the name Temple Grandin's friends classmates used to make fun of her at school. And the way he is shown playing a song after hearing it once is impressive, but it reminds me a little much of a pet trick.
That people think of people with autism as machines or animals is not news. What would be news is showing them that we are people. Derek has a life away from the piano, but we learn nothing about it. What we mostly get is neurotypical people telling his story for him. If the piano is Derek's language, he might have been allowed to speak through it. And pictures could have told us about his daily life, even if his words might not have.
E explains how she manages Hollywood parties with autism.
E is an actress with autism who also works as an ABA therapist. In this video, she explains what she does at Hollywood parties. Excellent tips on networking and socializing!
Please read this really shockingly awful post that the Washington Post's On Parenting Blog just published.
It's about Banana Man, autistic rapper Brian Thompson, AKA Leon Knight. He got a little attention because he was treated very harshly by his school for running around in a banana costume at a football game. (Read about it and watch video here.)
And the Post's Mari-Jane Williams is shocked that anyone would ever pay attention to someone with autism doing something interesting or fun:
The autism spectrum is vast, but public perception of children with autism should not be of a boy gleefully traipsing around a football field in a banana suit. If anything, the more accurate perception should be of a child sitting in a cafeteria, alone and overwhelmed, wanting desperately to connect to one of the groups of friends around him, but almost always on the social outskirts.
She honestly seems to feel that people with autism should only be depicted in the media as we were shown in Kathie Lee Gifford's infamous "All Alone" song.
She does not recognize that people with autism need to see all kinds of images of ourselves. We are not all the same. We are not all equally disabled. Some autistic kids do come in banana costumes.
Some make videos about bananas that make grownups giggle:
In a twist that makes this somewhat similar to the incident that started the current Thinking Parent's Guide to Autism dialogue, the Post gives added credibility to Ms. Williams' point of view by identifying her as the mother of a child with special needs.
Here's the thing: if you are the parent of a child with special needs, especially needs other than autism, than you are going to believe that everyone with autism is like your child or the children of your friends. And you are going to be very wrong about that. Autism is a spectrum. As I tried, and I guess failed, to explain last week:
It's not like this:
The autism community does not fall within a discrete disability community.
It's like this:
The autism and disability communities overlap, and each blends into the general population.
The autism spectrum is broad-- it includes many people who do not look like disabled children. The more different kinds of people who have autism we see in the media, the better the general understanding will be. Some parents complain whenever they see a story about autism that does not fit the "Autism Every Day" narrative that they have grown accustomed to.
Ms. Williams also accuses Brian and his family of "playing the autism card":
Thompson’s behavior might have been harmless, but the coverage has been another story, because it unnecessarily evoked autism for a stunt that any class clown could have pulled.
Did the family play the autism card to try to get school officials to lighten his punishment? Did the media trumpet that aspect of Thompson to make him a more sympathetic character or to call Colonial Forge school officials on what many thought was a gross overreaction to a benign disruption?
Here's something I will promise Ms. Williams, based on fifteen years teaching in public schools: it is not at all uncommon for children with Asperger's syndrome or even more obviously disabling autism to be held to a completely different disciplinary standard from other pupils. It is not at all uncommon for the difficulties they have with social interactions to result in punishments that are much more severe than those that would be given to students without disabilities, or those with disabilities that do not tend to make people think they are being deliberately rude when they are not. If you do not understand that there were very real concerns here, that is due to your ignorance about them, not the fact that they do not exist.
It is especially annoying to see Ms. Williams single out Theresa Vargas' "In Va. assault case, anxious parents recognize 'dark side of autism'", the story that the Post did on Neli Latson's trial as an example of how autism should be covered. Here's how I described that story, in the fourth most popular thing ever posted on thAutcast:
We are being demonized by the Post as a way of driving up page hits and selling papers.
And let's talk about that headline. This is "the dark side of autism?" Not the suicides. Not the people murdered by their parents. Not the torture of people with autism at the Judge Rotenberg Center in Boston, ignored by American papers but documented yesterday by The Guardian. Autism has many, many, many dark sides. To suggest that violent tendencies we wouldn't have without co-morbid conditions is the dark side is more than misleading-- it's stunningly lacking in that thing you always claim we don't have-- empathy.
There are so many things wrong with this article that it has taken me this long to get my main criticism of the media when reporting on autism: of course Vargas didn't talk to a single person who actually has it when writing her story. She talked to tons of parents (although Latson's mom wouldn't blame his autism, so there is only one quote from her.) She talked to Autism Speaks. She talked to the International Association of Chiefs of Police. She talked to-- unbelievably-- Holly Robinson Peete.
But one person who actually has autism? Apparently not.
It's not enough the Post had to publish that once-- now they have a special needs mom praising it as the way we should be talked about?
Williams herself pulls the "autism is only important because of how it affects the parents of people who have it" move, too. Of course she does. She closes with it:
Parents of children with autism struggle every day to help their kids cope with the world. They see how their atypical child cannot connect, sometimes even with them. They bear the financial burden of paying for treatments that insurance often doesn’t cover. They worry about what will become of their children when they graduate from school and enter a world that offers very little in the way of adult services.
It does them no favors when any of us dress those problems in a banana suit.
But sometimes people with autism dress themselves in banana suits. And to ignore them just because they don't match your image of what people with autism should be like is harmful.
Please email the On Parenting blog to let them know that sometimes autism does come in a banana costume. Tell them politely that our lives aren't only awful-- they can be silly and fun, too.
Spend an hour learning from someone who understands autism as well as anyone else.
In the spirit of the dialogue between parents and adults with autism that began at The Thinking Person's Guide to Autism and has continued across the autism web, I would like to share this video of a lecture that Alison Singer gave at Yale. I wrote a couple of weeks ago that you should watch this video instead of the horrid "Autism Every Day," and you should, but the lecture above is an amazing resource, for parents and anyone else who wants an extremely brief and accurate assessment of autism science.
This relates to the current dialogue in two ways:
A. I have been extremely critical of Alison in the past. Most of that has been fair, but some of it has not.
I still disagree with Ms. Singer about many things, and I'm sure I will criticize her in the future. But I'll try hard to be fair, and not to be unnecessarily mean.
The best way for me to make amends is to give all of you the chance to see her at her best. And I think this lecture will prove to you what an intelligent and remarkable person she is.
B. I think Alison understands autism as well as anyone else. This will sound arrogant, but I understand autism extremely well. This is in part because of my own brain, but mostly it's because I've studied it a lot and I have a lot of relevant experience. My Masters of Science is in education, and I have worked fairly extensively with kids across a pretty wide part of the autism spectrum during my twenty years of teaching. And unless you have equivalent experience, combining the personal and professional, and supporting by years of directly relevant education, I probably understand "autism" better than you.
That does not mean that I understand your autism, or your child's autism, half as well as you do. And there are many people who read my blog who understand autism a little better than I do (if you think you are one, I would probably agree)
But there are very few people I would say without hesitation understand autism much, much better than I do. Most of them are people who on the autism spectrum themselves: Temple Grandin, John Elder Robison, and C.S. Wyatt are the first to come to mind.
Alison Singer also understands autism much better than I do.
I disagree with her on some major things, but I know that her conceptual understanding of what autism is is superior to mine, and the knowledge base that supports it is broader. Her brother and her daughter have autism, she has spent years working with other families affected by it, and she has spent years in serious study with the best resources available. And when I listen to her talk the way she does in this lecture, I have the same experience I have when I listen to Temple or John Elder. I learn.
Here's why I think any of this matters: it is my opinion that parents can understand autism as well as people who have it. Not in the same way, but in ways that we can't, and that matter very much. I absolutely do not believe that parents should not be shut out of any public policy decision regarding people with autism. I think even parents with whom I vehemently disagree should be listened to, especially when their opinions are intelligent and well-supported.
But I think the status quo is that, outside the autism community, only the opinions of parents are listened to. And, unfortunately, I see parent advocates reinforcing that attitude, among themselves and outsiders, more often than not.
What we need to work toward is a situation where people with autism and parents both have a significant voice in things like the CDC wandering code-- the current situation is that virtually all parents ignore adults who disagree with what they personally want. And some parents do demonize and abuse adults who dare to disagree with them. And virtually no parents are willing to stand up in a situation where one parent is talking down to autistic adults and tell him to knock it off.
In response to the animation I posted yesterday, thAutcaster Kristin said this:
Does it really hurt physically or just emotionally to be touched? or loved? I want to understand but dont. My hubby has aspergers and hates to touch/be touched and its really hard on us that love you guys. Do you try sometimes or just give up like he has? isnt there always hope it can change? Explain more if u can, im interested in hearing about this.
I make pictures or animations about feelings I can't put into words, so the little video above is probably the best I can do by way of a response, personally. However, when I asked people on the thAutcast Facebook page, they had many of the words I do not. So I thought I should share some of them with you.
In my case it can be painful and I don't like the feeling of being restricted in movement
I just don't like it. It doesn't hurt really, but makes me very uncomfortable and axnst
I tend to feel awkward when someone hugs me. I don't mind it when someone does hug me but i rarely hug someone else first.
I've always loved firm touch, but light touch or touch I am not expecting can be a problem. I prefer to touch others. It's better for me to give a backrub to others than to have others touch me. That way I can communicate with them via touch w/o having to make eye contact or do the small talk.
I've never liked "casual" touches. At all. While I don't suffer from physical pain when touched, the emotional and mental anguish is not to be under estimated. I don't even know how to properly describe it, the experience makes me tense and the sensation is extremely unnerving. While some thing like a handshake i can deal with just fine, Even something as simple as a hand on my shoulder or unintentional contact in crowded areas makes me want to crawl out of my skin just to avoid it. Its a startling and alarming feeling even if I know it's coming; It requires most of my self control to avoid social awkwardness by recoiling as if burned and I'm often "out of sorts" for a long time afterward while I try and "get myself back together". I suppose I could liken it to something like a "fight or flight" reaction or a short term "traumatization". Even people I'm comfortable with like my parents, sibling and best friends elicit this reaction from me.
Our neurological wiring on us is different so we get different "messages" from our brains as regards sensory information. For me, light touch often feels like my skin is burning or raw. Unexpected touch I dint see coming (to prepare myself) can startle me. Hugs can send me into a mild panic (especially "forced" hugs), as I feel trapped and have a sense of a loss of control.
yea, to me light "tickle" touches are maddening but a more firm touch is fine. this may sound nuts but somebody standing really close to me is as bad as the light feathery touches. this is mostly if the person is a stranger and/or i'm already having some sensory overload.
To me, light touch often feels as if sandpaper is being rubbed right beneath my skin; this can be physically uncomfortable or extremely painful or anywhere between. Unexpected light touch startles me too--it gives me a physical start, kind of like static electricity.
For me, social hugs and handshakes just seem awkward. When I was little, though, being hugged by adults other than my father felt claustrophobic.
But I do like heavy, firm touch and confining full-body touch from people I have come to trust over time.