Panarama's troubling documentary on abuse in the Winterbourne View faciity.

Last week, the BBC program Panorama broadcast an episode that documented horriffic abuse going on at Winterbourne View, a facility that cares for people with autism and other disabilities.  Yesterday, the New York Times told a disturbingly similar story about the Oswald D. Heck Developmental Center, where a 13-year-old boy with autism named Jonathan Carey was crushed to death by one of the men hired to care for him:

Yet on a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan.

“I could be a good king or a bad king,” he told the dying boy beneath him, according to court documents.

In each case, the most shocking element is that the people who tried to alert authorities, both inside and outside the institution, were ignored.  Mary Maioriello recorded a conversation in which she could not get Kate Bishop, who supervised homes across New York to acknowledge that hitting patients with a stick constituted assault:

“Well,” Ms. Bishop said, “in the original report that you made, it didn’t appear to rise to the level of ...”

“Hitting someone with a stick?” Ms. Maioriello asked.

“In the initial manner described ...” Ms. Bishop responded.

“Really?” Ms. Maioriello said. “So what’s the severity that you have to make an assault?”

When disciplined for being one of several staff members under Ms. Bishop's supervision who attacked a patient, one employee posted this on Facebook:

“im on administration vacation as well,” adding, “cheers brother here’s to beating retards.”

James Hobley on the finals of Britain's Got Talent

James Hobley, the astonishing 11-yar-old dancer with autism, gave stunning performances on both the semi-final and final rounds of Britain's Got Talent.  Although he ultimately lost the competition to singer Jai McDowell, James has already gotten a full scholarship to a ballet school that will begin in September.

Watch James' semi-final performance here.

And his final performance here.

What my emotions look like, sometimes.

It's well known that most people with autism have difficult emotional lives, but the nature of those difficulties is profoundly misunderstood. They are usually described as "a lack of empathy" or "difficulty reading social cues."  In other words, the discussion usually focuses on the problems we have understanding the feelings of other people.  But those problems arise first from how hard it is to understand our own emotions.

"How are you?"
"How do you feel?"

For me, these are not easy questions to answer.  I have intense difficulty both identifying my own emotions and understanding why I have them.  I think the reasons for that have to do both with my neurology and my experience.  

In the first part of this series, I explained my belief that autism is at root a tendency for the brain to make connections, and therefore to develop, in unusual ways.  There seems to be at times almost no connection at all between the parts of my brain that feel things and the parts of my brain that are supposed to analyze those feelings.

The stronger my emotions are, the harder it is for me to understand them.  When I am heading for a meltdown, all I know is that I feel bad and that that bad feeling is more than I can deal with.  Later, I am usually able to go back and figure out what the emotion I felt was and why I felt it, but at the time?  No.  

I become increasingly confused, frustrated, and agitated.  I feel under attack.  I feel stupid and incompetent.  And because most people do not seem to have these problems to the degree I do, I also feel increasingly isolated, lonely, and sad.
But none of those are the root emotion that caused me to become overwhelmed in the first place.  They are simply layered on top of it, making it even more difficult to identify.

My emotional problems begin, then, with a brain that makes some connections that are too weak and others that are too strong. They are compounded by living a world which expects people to have emotions that I don't.  

Children learn to identify their emotions by seeing them modeled by the people and stories that surround them.  We learn that hugs make people feel connected and happy.  If they make us feel constricted and desperate instead, it's deeply confusing.  That makes it very hard for us to learn to understand our own emotional lives.

We learn that our emotional reactions are somehow wrong, and that things are easier if we pretend that we feel the same way about things that other people do.  So there does not seem to be much value in going to the difficulty of understanding our emotional lives.  They confuse us and the people around us so much, isn't better to just pretend they aren't there at all?

No, it isn't.  

And if you have autism, the most important work that you need to do is to learn to understand your own emotions.  If you don't know how you feel, you cannot know what you want or what you need at the time that you want or need it.  If you cannot learn to recognize your feelings, you cannot learn to express them in ways that help other people to understand and care about you.

It frustrates me to no end that people seem to think that the only problem people with autism have regarding emotions is with recognizing the emotions of the people around us.  Neurotypical people do not not understand our emotional lives better than we understand theirs, and they have none of the disadvantages that I've been describing up until now.

Some of the problems that people with autism have with emotions, originate with what I affectionately call "faulty wiring."  For an interesting discussion of one element of this that someone who isn't an expert in neurology, see John Elder Robison's discussion of mirror neurons in his book Be Different.

But some of the problems we have with emotions have to do with lack of education and modeling.  The idea that autistic people have emotions that are different, but no less real and important, than those of the people around us is controversial,  but it is the most important thing I have to say to you about autism.

And, again, because autism is this tendency to make unusual connections in our brains, and those connections effect how we experience emotions, people with autism have a much wider range in our feelings than neurotypical people do.  Two people with autism are not only unlikely react emotionally to an event in the same way a neurotypical person would; they are also unlikely to experience the same emotions as each other.

Of course, it needs to be said that two neurotypical people are also very likely to have different emotional reactions to the same event.  But NT people don't tend to have the experiences of overstimulation that make interacting with others so treacherous for people with autism, and which make our reactions to such basic building blocks of relationships as eye contact and parties so unusual.

There are a few generalizations about the emotional lives of people with autism that I feel comfortable in making, with the caveat that they are tendencies, not rules.

1.  In general, our emotions are simpler than those of neurotypical adults.  They are more like those of children and animals.  However, this tends to be a delay rather than a deficit.  People with autism can learn greater emotional sophistication when they are taught, especially when everyone recognizes how slow and difficult progress will be.  

2.  Because of our tendency to be overwhelmed by the physical and emotional presence of other people, we experience mixed emotions when interacting with others more often that not.  Because of our simpler emotional systems, we find these mixed emotions overwhelming as well.  This is ultimately the root of most meltdowns.

3.  People with autism usually have a harder time dealing with things that are extremely important to us than things that do not matter.  When something matters very much, it's importance becomes something that we need to worry about, and can become overwhelming.  When I want something too much, working toward it can become impossible because the experience of need and desire is too painful.  This is an area where it is very possible for us to support each other, but for the most part we have yet to learn how to do so.

In closing, a few words on theory of mind, the thing that I'm supposed to lack since saying I have no empathy sounds mean.  It's the idea that people with autism have a hard time understanding the thinking of other other people.  It should be clear be now that I think a lot of this comes from the fact that our actual emotional experiences are different from those of most people.

But I think people with autism often have a difficult time with the concept of causality-- understanding how one event results from another.  This is because our brains develop in ways that tend to make relationships between events hard to observe.  This is true for me, whether or not I am trying to guess what someone else would think.

The ten year sentence given to Neli Latson for assaulting a police officer who assaulted him first has been reduced to two years.  The year he has already spent in prison will count toward his sentence:

Prosecutor Jim Peterson yesterday urged Sharp to uphold the jury verdict.

“This is a case, not a cause,” Peterson said. “This is not about autism. This is about a violent man.”

But defense witnesses, who included doctors, a social worker and Latson’s former wrestling coach, said both Latson and society would benefit more from intense treatment rather than prolonged incarceration.

The song I listen to every year on my birthday

Today is my birthday.

I am 46 years old.

I am in Washington, DC, far from my California home.

My boyfriend Max has brought me here to see the Kennedy Center production of Follies, starring Bernadette Peters.  Fourth row, center.  For a straight guy this would be the equivalent of seats on the 50-yard-line at the Super Bowl, if the Super Bowl happened only once every ten years.

Yesterday, I got overwhelmed by the stress of traveling and was on the verge of a meltdown.

But I held it together.

Max helped.

I let him.

I'm proud of both of us.

And I'm very grateful to you for visiting my site today, or any day.

Thank you.

This is the day I was born.
This is the day I begin.
With the rain still tapdancing on my head,
The sun is starting to grin.

Happy birthday.