Autism

Counting the Cost


Warning: strong language and Bible verses.

Introduction.

Luke 14 (New International Version):

28 “Suppose one of you wants to build a tower. Won’t you first sit down and estimate the cost to see if you have enough money to complete it? 29 For if you lay the foundation and are not able to finish it, everyone who sees it will ridicule you, 30 saying, ‘This person began to build and wasn’t able to finish.’

31 “Or suppose a king is about to go to war against another king. Won’t he first sit down and consider whether he is able with ten thousand men to oppose the one coming against him with twenty thousand? 32 If he is not able, he will send a delegation while the other is still a long way off and will ask for terms of peace.

Part One.

Lynne Soraya tells a story that could have come directly from my life: she saw a sign for a library book sale and went, not taking into account just how taxing that situation might be for someone with her sensory sensitivity. She made it through and got home, then felt awful and didn't know why:

Sitting alone in the quiet house, it seemed that everything was OK – until a few hours later when I found myself getting frustrated at my computer. On edge, I suddenly felt a billowing rage overcome me. I wanted to scream and throw the computer against the wall. All this negative energy was boiling over, with no place at all to go – and simply no reason for it that I could see.

I gave myself a mental time out, took a deep breath, and asked myself what was wrong.  That’s when I made the connection. Of course…the library. I was chagrined to realize that even after decades of living with this body, I still hadn’t realized the full cost to myself of such situations, and how long after the consequences can linger, and the many ways that they can disguise themselves.

For my own sake, I should have been more vigilant, but this is what comes of spending most of my life suppressing my differences instead of trying to understand them. Sensory overload is an assault, and is experienced as such. Recovering from an assault takes more than just removing yourself from the situation. It has emotional after-effects, too. Ones that can effect not only you, but those around you.

This is what so much of my life has been like. I try to do an ordinary thing and sensory or emotional issues make it way too much. Sometimes I can do it and sometimes I give up and go home. And afterwards, there will be pain, exhaustion, and anger.

And shame.

Maybe the thing I love best about what Lynne has done is the light touch with which she indicates that part of why this cycle of sensory assault is so awful is humiliation. We should know better, but because our bodies and the situations we find them in are so unpredictable, we don't. We can't.
Sometimes, autism makes it impossible to count the cost.

 

Part Two.

So I hear through the grapevine that the Autism Bloggers group that this guy hurt my feelings in no longer exists.

I think this is good thing.

People got so distracted by the anger and the ugliness that this post inspired that I think they missed it was largely about counting the cost.

I was invited into that group as an autistic person, to broaden the perspective of a group made up mostly of parents. And then there was simply no effort made to establish norms that made that group accessible for autistic people. Instead, an atmosphere of competitive, mostly friendly sarcasm and snark arose.

And here's the thing-- if you don't know that aggressive sarcasm is going to disable many autistic people and make it impossible for them to participate in a conversation, you don't know enough about autism for it to be okay for you to run an autism blog. You need to shut it down and shut the fuck up.

Or, if you think that autistic people like me are "too angry" and you are willing to deliberately exploit our communicative challenges in order to discredit us or entertain yourself, then you are simply an asshole. The idea that you are an autism advocate is a joke. You are not better than anyone else who uses someone's disability against them-- the teller at the bank who tries to give a blind person a $1 bill and say it's a $20 is only one step below you. If you think taunting and shaming autistic people is a public service, you also need to shut the fuck up.

Even if you are autistic yourself.

It is HARD for me-- I have to work at it-- not to use other people's autism against them when they make me angry. It's very easy to do it-- every middle school bully has figured it out. I don't always succeed because I am not perfect, but I do try.

If you are not willing to count the cost of treating autistic people with respect, of doing the really hard work of listening to us and helping us hear you, you need not to ask us into your little shindig to begin with. If all you can do is listen to people like yourself, then focus on them and leave others alone. Don't try to shut them up just because you don't like what they have to say.

Just because I identify as autistic myself, that does not mean I understand what life has been like for people who have lived with that label in a public way since childhood. Even if I get diagnosed, the majority of my life has not been lived in the same way that someone's has if they have lived through special education. Even though my best friends have kids who have challenges much more disabling than mine, I don't know what it is like to have those challenges and I don't know what it is like to parent those kids. I try to extend my knowledge and compassion. I work so hard at this that it hurts me. I still fail. I try again.

If you think you are doing an autistic person or her parent a favor by listening to her, you probably aren't ready to hear what she is saying.

Work on yourself first.

They'll be there, when you've counted the cost.

 

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.
 

 
 
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