Autism

John Elder Robison on Where We Are and Where We Are Going


John Elder Robison, the autistic person on the science board of Autism Speaks and one of three autistic men on the Interagency Autism Coordinating Committee, begins his big picture consideration of where the autism community is and where it needs to go in a familiar place-- anger:

What have we done for our community?  Angry parents direct that question at the IACC, the CDC, NIH and Autism Speaks every day.  They say we’ve spent hundreds of millions in research, and talked about all our great accomplishments in research, yet the lives of the autistic people around them are not one bit better.  How come?

I’m beginning my seventh year as an autism advocate – whatever that means – and one thing that’s clear is that the dissatisfaction expressed by members of our community is just getting louder.  The inescapable conclusion is that the organizations that purport to be here to help are not delivering whatever it is we want or need.

I want to respond to John Elder's piece in some depth soon, but first I want you to read his arguments without my comments on them, because what he has to say is smart and important. There's a lot I agree with and a lot I disagree with, even in his final summary and call to action:

1 – We have developed a number of promising therapies – some medical, some behavioral, some environmental – that seem to offer meaningful help to certain autistic people.

2 – We see the promise of new technologies like tablet computing/apps but we’ve left most development in the hands of private companies, which leaves the resultant products unaffordable as things stand today.

3 – History shows that some of the greatest discoveries come from basic research and I believe we must continue in that direction.  At the same time, we can’t overlook the needs of people today.

4 – The reason most new therapies are not covered by insurance is that there is not a strong body of evidence that they work, nor are there standards for how they will be delivered. Consequently, insurers wriggle off the hook saying they don’t know what they’re paying for, or if it will work.  That’s why there’s such a critical need to fund studies that build evidence, and develop standards for delivery.

5 – Changing the way our education, legal, and social systems accept, engage, and help autistic people is going to be a massive and expensive effort; one that is just now beginning.  It’s even more critical as we begin to understand the true size of the autism community (including the large numbers of previously undiagnosed or misdiagnosed adults.)

Please read it and think about it.

Then let's talk.

 

Autistic Man Sentenced to Prison for Killing His Mother


Brent Mack, a 27-year-old autistic man from Perth, Australia, has been sentenced to twenty years in prison for killing his mother, Ah Bee Mack. Her body has never been found. Brent claims she killed herself, and he hid the body because he promised to keep the suicide a secret.

Justice John McKechnie found Mack had killed his mother to benefit financially from the lucrative real estate assets she had inherited only months before her death from her late husband.

After his mother's death, Mack moved almost immediately to start siphoning hundreds of thousands of dollars out of her accounts.

Mack kept his head bowed and eyes closed through his sentencing in the Supreme Court of WA on Friday.

Psychological and psychiatric assessments of Mack had ruled out his autism as a factor in the murder.

"Your autism does not explain your crime let alone excuse it," Justice McKechnie said.

But he did find Mack had lived a solitary and sombre life due to his condition, that he had been the target of abuse from his elderly father and incapable of forming relationships.

"You are a very damaged young man," Justice McKechnie said.

 

When Our Autistic Heroes Disappoint Us

Published in

So there's this thing that happens?

Where an autistic person will say or do something dumb or thoughtless?

And then we're all supposed to decide not to like them anymore?

 

Let's try not to do that.

 

Let's remember that autism impairs communication and socialization, pretty much always.

So-- those big famous autistic people who speak so well and write so movingly?

Still are likelier to mess up and say something wildly off-key than our neurotypical heroes are.

 

And we have to remember that,

In order not to make some faction of Autismland hate you with what you say or do,

You have to walk such a complicated network of tightropes that sooner or later you're going to fall.

 

Hard.

 

And if you talk publicly about autism, you're going to be spectacularly wrong from time to time.

No matter how smart or good-hearted you are.

No matter how autistic you are.

 

Because autism is hard.

 

So--

when I read that someone autistic who I admire is working with a celebrity who says dangerous things

Or a charity whose work I oppose

Or has made insensitive comments about gender

Or about "functional levels"

Or what have you

 

I try to say-- "Oh, autistic people are just like everyone else.

Imperfect, and frustrating and

Different From Me."

 

Why do I try harder to do this with autistic people than with most other people?

 

Because they have social and communicative challenges that most other people don't.

Because they are My People.

Because I know that probably not enough other people are trying to understand and keep empathy

When people get autistic, not in a nice way.

 

It's not my job to be Fair.

 

It's my job to promote the rights of autistic people.

One of those rights

Is the right to disagree.

 

Even with me.

 

Learning to Speak, Learning to Listen


"I think this kid's cool. I think I'm like him."

 

My friend Adam Bailey wrote this, in part because I asked him to. He's the guy who does the OWL comic strip, and he did the music for this cartoon we made together based on it. Adam has Asperger's syndrome. He works full-time repairing things. His wife and he have two sons, Colin, who just turned six, and Brendan, who is four. Colin has the sort of autism that makes life very difficult for himself and his family. Brendan is not autistic. When his mother recently asked Brendan what autism is, he replied, "when you need help to play."

Colin at Six

by Adam Bailey

When Colin turned five years old, his vocabulary was very limited and its use was seemingly irrelevant or incomprehensible to the outside world. He could say "eat" if he was hungry or when eating, and he could say "no" with some relevance, but for the most part he was grunting, screaming, and signing what he intended us to understand. His behaviors seemed animal-like at times, territorial, easily spooked, prone to violence if provoked; similar to a cat in a dog pound.
 
He received regular speech therapy and occupational therapy, both crucial for brain development, neither covered by insurance. These therapists encouraged us, telling us things like "Colin will speak someday, just be patient", but these things are near impossible to believe. Nobody can know how long it will take for his language to develop, and It's hard to believe people who are paid to bolster his development. I didn't think they would have ever told us that Colin will never be able to speak, even if they really believed it. They would likely continue taking our money and working with him forever, still telling us to be patient. Maybe I'm wrong, but I just didn't believe them. 
 
Day by day, the smallest advances were means of celebration...
Colin- "BLOO"
Me- "Did you hear that? he said Blue! he wants to watch Blues Clues! GOOD JOB COLIN!!"
Colin- "BUUUT"
Me- "YES Colin that's your butt! GOOD JOB!"
 
I want to feel proud of my son for exactly what he is, at any time. I don't like the thought of always wishing him to be more developed, but its so obvious that his slow development is harmful to him as well, as he turns to self harm and violence to get his message across.Time starts to move so fast, and development moves so slow, that any development seems like illusion. But things began to change...
 
There are certain movies and television shows that he really likes and always requests. Whether he can verbalize the title or not, he will point and grunt. One of them is "Blues Clues", and like i mentioned above, he can say "BLOO". We noticed him mumbling unintelligible words during the opening credits of almost every episode. Soon we started to realize that he was using his very limited vocabulary to explain which episode we are about to watch. The more we paid attention, the more we realized how many of these episodes he had memorized. He knows what is going to happen in (my guess) 80% of all the episodes he has seen, and he has at least 2 words for each episode. I think there are over a hundred episodes.
Colin- "Majet-an gal-assa"
Halfway through the episode, it becomes clear that this is the one where Magenta gets glasses.
Colin- "BLOO TEEF"
middle of the episode, Blue goes to the dentist.
And on and on and on.
 
There is a scene in the movie "Annie" where Annie is being chased up a railroad bridge and Punjab is rescuing her from a helicopter. There's a close up of Annie crying and yelling "Help, Punjab! Help!". Colin seemed to have picked up on the feeling of helplessness in that scene and related it to many areas of his own life. I want to warn readers that he has difficulty saying "Punjab" and my interpretation here is exactly how he says it. Its funny, but not meant for humor.
If he gets hurt: "POOP JOB HEP!"
If somebody leaves and he wants them to stay: "POOP JOB HEP!"
Sometimes if he just wants attention: "POOP JOB HEP!"
I can think of more examples of this from different movies.
 
He is not communicating in the way society is accustomed to, but he IS communicating. He is expecting us to know that how he feels, is similar to the scene in that movie. He wants us to feel what he thinks he feels, the only way he can figure out at this point. He is developing, and he is speaking in symbolism, in art. He is intelligent. he does have strong feelings and reasoning.
 
Colin has just turned six years old. Whether he had just started doing this, or if  we had just come to the realization of it, it was a breakthrough for me. I learned that when he has to work extra hard to communicate, we have to work extra hard to understand. It makes me wonder what other "communication" we are about to unlock together.
 
I wrote this for other parents of non verbal or barely verbal young children. I know how much it hurts, and how blinded one can be in the middle of very expensive therapies, and in a high stress parenting scenario that seems like a marathon race where you are out of energy but there is no finish line. It can be a lot easier to give up and pull out of the therapy, and admit to yourself  "my son will never speak" and imagine the worst for him. But don't....Don't give up.
 
When the therapists tell you to keep believing, KEEP BELIEVING. When you think the development will never happen, look a little harder and sometimes it already has happened. Don't think for a second there is nothing going on in that little brain. Don't think your autistic child will have nothing to give the world. Most of all, realize that crucial to your child's difficult development, is your understanding and love for exactly who your child is, at any level of development.
 
Your child is beautiful, and "they" are correct when they say "please be patient".
 
 
 
Adam Bailey
 
More writing from Adam here, here, and here. OWL lives here.
 

There Is Power, and There is Power


One of my primary metaphors for the autism community is the LGBT community. And, by the way, my choice not to include other letters there is deliberate, and I will not appreciate being corrected for it. Because I'm talking about history, and history is specific.

It's hard for parents of autistic people to understand that they have power that we do not, because they are themselves a disenfranchised community. How can we say that you have all the power when you are powerless to affect the changes you really need?

Well, there is power, and there is power.

And I think it might help a little bit to think about the differences between the power that the people represented by the letters L,G, B, and T have.

I'm a gay, white, man who lives in California. There are powerful organizations like the Human Rights Campaign who are going to make sure that my interests are not ignored. If I were a trans woman of color who lived in Arkansas, who would be looking out for me?  Me and my friends, that's who.

There are gay men who are taken seriously, like Nate Silver. There's a lesbian in the Senate. The L and the G are doing a lot better than the T, even though we aren't doing okay. The appearance of trans people on television or in sports can still give rise to shameless and outrageously bigoted reactions. Trans teens are less safe than gay teens, and gay teens are not safe. This segment of The Melissa Harris-Perry Show was unusual for showing real trans people in a substantial conversation on TV. I can see a gay guy talking about gay stuff on MSNBC every week. I can see a lesbian tell me the news every night.

I have the HRC behind me. I get heard in ways that transgendered people don't. I hate that. Actually, I don't like the HRC. I wish their top priorities were passing laws that made it illegal to discriminate against LGBT people in hiring or housing and getting LGBT people appointed to political positions. Instead, their top goals have been marriage equality and the repeals of Don't Ask Don't Tell. Those are good things, but they won't save as many lives as making it illegal to deny homes and work to trans `people and gay people in the states where that is still legal (most of them).

Do I have equality as a gay man? No.

Does this piss me off? Yes.

Do I have tremendous privilege, in comparison to trans people, especially if they aren't white, especially if they don't live in very blue states? Of course.

Is that my fault? No.

 

The parents of people with autism are represented by Autism Speaks and other powerful organizations. Parents may disagree with what Autism Speaks or the Autism Science Foundation do, they may cringe at some of the statements made by their leaders, but Autism Speaks is almost always going to get a seat at the table if they ask for one, just like the Human Rights Campaign. The HRC is never going to have a board made up mostly of B's and T's, just like the Autism Speaks board is never going to favor the interests of autistic people over the interests of our parents.

 

And in some ways this is fair and right. Gay people built the Human Rights Campaign and have contributed most of the money that makes it strong. Parents founded Autism Speaks and have paid to make it as powerful as it is. It's not wrong to have this power.

We just have to acknowledge it.

I don't think the organizations run by autistic people have a combined annual budget of $2 million dollars. Autism Speaks alone reported income of over $50 million and assets of over $20 million of 2010.

There's just no comparison.

 

And it's okay that it makes me angry that the parents of autistic people have something like 100 times the power that autistic people do.  This should make me angry, it's an unhealthy state of affairs.

Just like it's right for transgendered people to be frustrated that gay people have power that they do not.

 

And in each case, some members of the more powerful minority group buy in to the majority prejudices against the less powerful minority group. Christian Siriano, Dan Savage, and Ryan Murphy are all white gay men who have wounded the transgender community with unthinking bigotry. Murphy and Savage have both also done wonderful things for transgendered people.

Many parent advocates for autistic people have sometimes acted with unthinking bigotry toward autistic people. Several of those same people have also done wonderful things for us.

 

It's good for trans people to praise Ryan Murphy when he gets things right and complain when he gets things wrong.

It's good for me to do the same for parent advocates.

 

One place where both autistic adults and trans people still have to fight that gay people and the parents of autistic kids don't have to is get acknowledgement that we even exist. My friend Jay Jackson told me this story:

I look young and was going to play a teenage patient for the local hospital's "simulation day", where they would run medical simulations to test out their new pediatric ER. Once they found out I was transgender though, they asked me not to play a patient because "it is very unlikely that a young person would be transgender".

Even the MEDICAL COMMUNITY is grossly misinformed about transgender issues and it causes a lot of hurt.

I can imagine an adult with Asperger's syndrome being turned away for the same reason. I would not be as a gay man-- although someone might find an excuse to get rid of me for being gay, they would not tell me to my face that gay people are unusual. They might get rid of the parent of an autistic kid because they think it will be too much trouble to make things work, but they won't doubt your existence. That still happens to autistic adults. It still happens to trans people.

There is power, and there is power.

 

 
 
Syndicate content