Landon, question - when you have a child of any age who cannot speak, who should speak for them?
I reject the idea that anyone cannot speak, because for me "speak" as used here should really mean "communicate." I believe that everyone can and does communicate. Ultimately, the only person who can speak for anyone is that person himself or herself.
When people have extremely limited communication, the people who best know their needs are usually their parents. Their parents need to speak up as accurately and as passionately as they can about the needs of their children. They should never be told that their voices do not count, that they are not knowledgeable, or that they are not part of the autism community. I try hard to listen to parents, but sometimes I do a terrible job. I have impaired communication and social skills. I'm trying.
But I really don't like the idea that parents can speak for their children. Not because I think adults with autism can speak for them better but because, again, I think no one can really speak for them but themselves. So we all need to do our part.
Part of that is recognizing that autism is a developmental delay. Many people who cannot speak clearly today will do so in the future. Many, many more will be able to if we abandon the idea that we should basically stop trying as hard as possible to teach basic skills as soon as kids hit the age of 21, or otherwise age out of school.
Christopher Flanagan is 54, and we should all be grateful that no one stopped trying hard with him, especially that his parents did not, because he can communicate now in ways he never could before:
"Only in the last few months when we go to visit him, I will sit down and read a chapter of something," says Mr. Flanagan. "When I stop, he will put my hand on the book and indicate that I must continue. It shouldn't have taken 54 years to have learned that."
But, maybe, for Christopher, it just did take 54 years. I think we need to spend 54 years trying, if that's what it takes. He uses a letter board now. Maybe if everyone, especially Christopher, keeps working hard for ten more years, he will have the skills to articulate something that only he knows that will change the world for all of us.
While we help Christopher and every other autistic person with communicative challenges to get to the point when they will be able to speak for themselves, others are going to need to do our best to help communicate their needs and advocate for them. The best people to do that when we talking about individuals are not the best people to do that when we are talking about social issues.
No one knows your child better than you, other than she herself, and no one can speak to your child's needs better than you, other than he himself.
But those of us who were autistic children understand the experience of being one better than our neurotypical parents do. Many of us know what is like to be nonverbal, although I don't. Many of know what it is like to experience interventions like ABA when they are well-applied, and when they are poorly applied.
And all of us know what it is like to be autistic adults. It's hard for parents to think of their children as adults. But they will only be children for a short portion of their lives. Parents will tend to choose safety over freedom for them, and that's not usually the right choice for grown ups.
When the government is setting an agenda, when private organizations are setting priorities, I think we have more to offer than parents do. I think, rather than having a token presence on boards and committees, we should be in about half of the chairs. And parents, professionals, and interested others should fill the rest. It's our destiny. We should have the strongest voice in controlling it.
So-- who should speak for your child?
Who is going to do the next best job of understanding and advocating for your child as an individual?
Who is going to do the next best job of advocating for your child as an autistic person?
Other autistic people.
"That's what a mama's worth-- to give her child the earth."
My mother has new cancer.
About ten years ago, she had cancer in the cells between her kidney and her bladder. It was very rare and very bad. And it spread. She was given six weeks to live. She lost her hair to chemo, but it grew back. The radiation destroyed one of her femurs, but something made her well. She's lived a miraculous decade, with many biopsies and a couple of surgeries. Nothing big.
This is big.
They removed a chunk of her lung, biopsied it, biopsied it again.
And told her they wanted her to do a six week course of both chemotherapy and radiation.
When she first got the news, she did not want to do it. She changed her mind, but I am very worried that, even if the treatment works, it will destroy her body. And even more worried that it will not work.
Last week, I went home to help. My father had hernia surgery and my mother was in her second week of chemo and radiation. I mostly just drove them places. It is hard for me to be home, but it was nice to be helpful.
I got to meet my best friend. He drew a comic strip about it. In two parts. It's hard for both of us to be social, but we did okay-- he wasn't obnoxious like he thinks he was. I thought that people seeing us together might mistake us for brothers-- we are a little similar in height and build (I'm older, shorter, fatter). And we act, you know, sort of autistic.
I saw my real sister, one of them. She is nice to me but has a hard time being as nice as I would like her to be to my mother. Mom says she is talking to my other sister, but I didn't have to, and that was good.
Family is hard.
My mother's attitude is good. She is trying to get better and accepts that she may not. In some ways I worry more about my father than about her. She knows how real it is. It is impossible for me to know if he does.
Last week, I did that thing I used to do all the time, the one where I just don't feel my feelings and instead try to exist exclusively for the feelings of other people. It makes me good in a classroom or a hospital, but it is exhausting and leaves me numb.
It has just been the last two days that my feelings have really come out. Before now, I've focused on how my parents feel.
I am really sad.
I'm sad because I will miss my mom so much if she dies.
I'm so sad that it is nice to think about the fact that one of big reasons I don't kill myself is that I don't want her to see the son she worked so hard to give life to throw that life away. If she dies, I won't have to worry about that. I will have one less reason why I need to pretend that I think things will ever be okay for me, that I will ever a life that is worth the pain and expense I cause myself and others. If my mom dies, maybe I can die, too.
There's my dad.
But that's how sad I am, and how overwhelmed.
When I was very small, my mother was the only person I was really able to take in. She was the good part of the world. The rest was baffling and frightening. She was safe.
And she taught me to connect, something that was very hard to do. She used her voice to call me into the world. She sang to me before I was born. Her voice is love to me. She taught me that music is love and reason, and a way that I can always comfort myself. She taught me that words have music, and that, if I could get the tune right, people would understand me, even if they didn't understand the words.
And that was how I learned to be a person who could interact, however awkwardly, with others. That's why I am not obviously disabled to most people who meet me.
I do not worry about missing my mother's voice. My own voice is derived from hers, and it is the finest part of me. She is in every word I say, every tune I hear. She always will be. I will always be able to hear her.
But my heart is breaking because I am afraid that soon I will be unable to touch her ever again.
I am weeping now, and the greatest possible comfort to me would be my mother's embrace. I want to hold her hand, to feel the primal love that maybe is only possible when you used to be part of somebody's body. Her body was the world for me. It still radiates a warmth that I have never felt anywhere else.
That thought of that body being cold forever is crushing me.
My mother's mind, her soul, her voice-- these are things that will not die while those of us who loved her, and who she shaped with her love, are alive. I will honor those things, as best I can. But my body grieves for hers, already. And I think part of me probably always will, from now on.
Many parents of children with autism consider homeschooling, and there are often very good reasons for doing so. Especially for a child who has severe social or sensory problems, the school environment may be so aversive that learning is impossible. And many parents find that their school districts offer no appropriate placement for their child's needs.
It is entirely possible that at some point in your child's educational career, homeschooling will be your best option.
But I want you to consider making it an option that you use sparingly, and only if you really can't find a placement outside the home that will work for your child.
I am not a fan of homeschooling.
Granted, this bias comes mostly from unhappy personal experience. My sister homeschooled her kids, and she should not have. When her son did not pick up reading as easily as his older sister did, his mother decided he was stupid. Actually, she just didn't know how to teach. When my mom paid for him to attend a reading clinic, he learned in two months. But by then a lot of damage had been done to his self-esteem, and to their relationship.
The stress of being with three children at all times, with a husband who had mental health issues, was too much for my sister. She began drinking. A lot. Her marriage ended. And she lost custody of the kids she was so protective of that she wouldn't send them to school. To a man who worries a lot about what when the voyagers from another planet are going to arrive.
Parenting is the hardest, most stressful job there is.
Parenting a child with autism is often much harder and much more stressful than parenting a neurotypical child.
And it is a long haul, with few breaks.
You've got to conserve your strength. You need your kid to go to school if possible so that you have a chance to have a life that is not 100% about being a parent. You need to have a self. You need to be a person apart from your child.
Parenting fatigue is a real thing. And it has ugly results. As a middle school teacher, I worked with literally hundreds of kids who were not getting what they needed because their parents thought they really shouldn't have to work so hard at being a parent anymore. Because they were exhausted.
You've got to guard against giving so much now that you have nothing to give later.
And then there's the stress-and-blame thing.
It's not possible to educate a child, especially an autistic child, without making mistakes-- big whopping ones that cause actual damage. You're going to make some of those mistakes as a parent, no matter what you do. And you are probably going to feel guilty about that.
I don't you to put yourself in a position where you are making ALL of those mistakes. Where you feel personally responsible for every place where your child suffers unnecessarily or fails to reach potential. It's not that I don't trust your choices-- I just don't want you to carry the weight of every choice that will be made in your kid's school career.
Always consider a partial day before going to homeschooling. I think almost every kid with autism should be in school part of the day. I think very few kids with autism should be in school all day, every day.
And take care of yourself, as well as your child. Don't disappear into a big autistic hole. Your life, your potential, and your happiness matter, 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.
One of the things that inspired this series of articles on privilege was seeing the movie The Help. I've already written about how much it bothered me that the movie, which I enjoyed, depicted a cartoon version of racism that nobody sane would see themselves in. I didn't talk about how unrealistic it was that all of the African American characters seemed to believe that they should be treated equally. None of them showed any evidence that they had internalized the message that they deserved to be treated as property. None of them thought that white people really were smarter than them, and that it would be better to leave things as they were.
Leaving out that part simplifies the story, and it might make the characters easier to relate to, but the most terrible thing about bigotry, and the hardest to admit, is that it makes the people who are its subjects believe that they are worse than the people who despise them.
Another inspiration for this series was the ruckus surrounding a piece that parent advocate Robert Rummel-Hudson wrote about bigoted language in the movie The Change Up. Zoe, an autistic self-advocate complained about Robert's piece, and Robert and a bunch of other parents descended on Zoe with such force that Ari Ne'eman felt the need to call others to rally around.
And Robert treated Ari, who is the only openly autistic person ever to receive a presidential appointment, and all of the other self-advocates who were angry with him, like angry trolls. And other parent advocates seemed to me to offer Robert nothing but support.
This made me angry enough that I wrote this.
This week, The Thinking Person's Guide to Autism is hosting a series of letters between Zoe, Robert, and Ari. Zoe wrote the first letter, which was published today, and which you should read.
This is my loose and lengthy response to it.
"I just think I'm a problem."
An autistic teenager said that to me after the bullying he was undergoing at his school became so bad that his family withdrew him for homeschooling. He knew the school was a problem, and he knew the way other kids treated him was a problem. But he also thought that he himself was a problem. And that breaks my heart.
And it's why it matters to me that parents of kids with autism learn to understand and respect autistic people.