If you want to help me, give me hope.
I was honored to be mentioned in a post that Brenda Rothman wrote today about how to build hope in autistic children. After referencing the picture above, she wrote:
In a later post, Landon noted that he's creating graphics right now because he feels less verbal, less able to express himself through words. If Landon was a child, the autism experts would label this situation a "regression." They'd compare his language ability with "normal" ability. They'd create a goal of improving language usage. They'd recommend speech therapy and also occupational therapy, in case it's a physical writing problem. And they'd tell his parents that they are part of the "problem" because they "give in" to Landon by recognizing what he's saying when he's not "using his words." Would that make his parents or Landon feel hopeful?
The things she suggests that might make little Landon hopeful are great, and you should read the whole post.
I know one thing about myself now that might also have helped, if someone had been able to explain it to me when I was younger. Those periods of what looks like regression, when I am less able to do things like speak or relate to others, are actually periods of growth.
I'm like a caterpillar that keeps turning into more wonderful butterflies.
Every so often, I shed my wings so that I can grow better ones.
And that means living without wings for a while, which can be hard.
It was harder before I realized that there are other things to do than fly. Wings kind of get in the way when you need to do things on the ground.
Even if I need to spend some time in a pupal stage, just changing, just growing, I have learned that this is okay because the end results will be worth it.
I have learned to trust this cycle.
I am starting to learn to enjoy it.
Other people might look at me at those times when I am less verbal or less relatable and see regression.
Because I live inside them, and have been going through these cycles for almost half a century, I know that they are part of what happens when I grow.
Brenda Rothman's white autistic son Jack wants to grow up to be bald and black. And, while she tells him that only part of that is possible, she's okay with what him liking things that are different from himself, and talking about it. Even to bald, black strangers at the store.
She believes that we are quiet about differences because we are ashamed of them:
I wish we could see, like Jack can, that differences are what makes us interesting and beautiful. If we appreciated the beauty of black people, we'd see them celebrated like Barbie images are. If we appreciated the beauty of learning differences, we'd see it embraced in schools, not fought against. If we appreciated physical differences, we'd see it as more than gold-medal inspiration for positive thinking. If we incorporated a daily appreciation of differences - for skin colors, learning differences, physical disabilities - in our families, we could change the world.
One of the most important lessons that any parent can learn is how to listen to an individual child. Three mothers describe listening to their autistic children in ways I would like to learn from.
Brenda, at Mama Be Good, talks about how her son's unhappiness can be communicated in ways that make it hard to understand what he needs:
My child is autistic. He has a different way of expressing his feelings. His sorrow at leaving a fun place looks like anxiety, like aggression. But it was sorrow, bottled up tight inside him, pressing on his chest and his head, making it hard to breathe.
Would an NT child be upset about leaving a fun, exciting place? Sure. And the same is true for my child. It looks different, but it's the same feelings. And I want to treat those different expressions the same way. Comfort the NT child who is sad and expresses it the way we expect. Comfort the autistic child who is sad and expresses it differently.
Outrunning the Storm wonders about how to handle situations in which her son's behavior attracts the unwanted attention of strangers-- should she explain about his autism?
How, I wonder, can it be so hard to get something so important right.
Then it finally occurs to me, in a stroke of genius, much, much later than it should have; the right answer is to ask him what he wants.
So, I remind him of the situations and ask him if he would prefer that I try to explain to people what his needs are in those situations so they understood him better or if he would rather just move on and let people think what they want. In saying it out loud, it is clear to me what I would want at his age.
Its embarrassing, he tells me. He doesn’t care what people think, he just wants to move on when it’s over. He doesn’t want to hear people talk about it.
Jean, at Stimeyland, asks her son about a noise that he is making, and not only gets the message he is relaying but embraces his way of communicating it:
I tell him I understand and then I think about the noise and how it isn't a noise that most people tend to make. And I start to say to him, "Instead of making that noise, maybe we could have a code word for when you are too overwhelmed..."
And then I stopped.
Because I had just reread Quiet Hands that very morning. And it was fresh in my mind that not allowing free expression, even in unexpected (by NTs) ways is maybe more disabling than anything else I could do.
So I paused and then I asked, "Does it make you feel better to make that noise?"
And he said, "Yes."
So I said, "Good," and the subject was closed.
I was a little taken aback by some of the responses to this story about a family with an autistic child who were harassed for using a disabled parking place. There is tremendous resistance to the idea that autism is actually a disability that requires real accommodations, even in our own community.
People wanted to blame the family so much that they made up things that they might have done wrong.
Maybe they didn't have the permit (They did.)
Maybe it wasn't visible (No suggestion of that in the story, not what the officer asked them about.)
Well, anyway, those parking spaces are REALLY for people with REAL disabilities.
Autism is a real disability, folks. And we need to learn to support each other better, because few others are going to. We want so badly to identify with the majority, to pretend our differences don't limit us, that we attack autistic people for needing or getting support.
In order for most autistic people to fully participate in life, we need some accommodations. Those of us who need fewer of them should never sit in judgment of those who need more. And the parents of those who need a lot of support should never assume that the less obvious needs of other autistic people are not real, or that acknowledging them endangers their children.
These are difficult ideas. Brenda Rothman is explaining many of them very clearly in a series of posts about a failure of accommodation when her family visited Walt Disney World. Most recently, she posted her letter to the resort:
It should be of little comfort to you to place the blame on me. Whether I used the "right" language, whether I should have complained, whether I should have requested a supervisor doesn't matter in the end. Partly because we actually did receive the correct disability pass at WDW City Hall, but mostly because denial or ill treatment could happen to anyone, including an autistic. The accommodation request system should be set up with access to the disabled. It should contain system fail-safes to ensure that a disabled person is not denied accommodation because of their very disability - social, language, and communication differences n autism particularly.
Receiving a disabled pass at Disney is of less concern to me than how my son and his fellow autistics are perceived and treated. If Disney, the company that sets the bar for how disabled persons are treated, prioritizes physical disabilities and treats non-apparent disabilities with distrust, then imagine how worse other places will treat them. If a member of the general population at Disney shouts at an autistic child for going through the disabled entrance at an amusement park, where everyone will ride as many rides as they want all day long in a pleasant, stress-free environment, imagine how they will treat an autistic when they feel threatened by a perceived loss of income, job position, taxes, or services...
My concern is not so much individual, but for autistics as a group. WDW should provide accommodations to all autistic persons, not some. WDW should recognize the physical part of autism. WDW should have accommodations and systems already in place for autistics. Autistic persons should not have to prove their needs in a public and dehumanizing way. Autistic persons should not be treated as not really disabled, not as disabled as those with physical disabilities. Autistic persons should not b refused accommodation because they don't appear to have mobility, hearing, or visual disabilities.