Variety

 The autism spectrum includes people who speak and people who don't. People who use the toilet and people who need diapers. People who struggle to understand social expectations and people who figure them out. People who are great conversationalists and people who would rather not converse. People who memorize stuff and people who don't. People who hug and people who would rather not.

It's all sorts of people. Here are a few resources that exemplify the variety, the labels that are sometimes used to describe that variety, and the shortcomings of those labels.

"Ask an autistic" - Video series made by a woman on the autism spectrum. In this segment, she explains what autism is from her perspective.

This American Life, episode 317, Unconditional Love, act 2 - A father of a severely autistic child faces decisions about his son's future, including whether or not he can continue taking care of his child at home. (Listener note: have tissues handy)

"Where the Vocabulary of Autism is Failing" - An Atlantic article about how labels such as high-functioning and low-functioning obscure as much as they illumine.

It's hard to say where Martin is in relation to the cases presented in these examples. He's not like the woman in the first video, Amethyst, who clearly has no trouble speaking. Martin could not put sentences together, even at age 3 and 4. Learning to speak and have conversations took years of speech and ABA therapy. Martin is not like Ben in the second story. Martin is verbal. Martin sleeps. But like Ben, he has had meltdowns that have taken us to the emergency room. The final article speaks to the strange set of characteristics that Martin has. He is "high-functioning" in many ways and "low-functioning" in others. The power of that article comes in its acknowledgement that every story involving autism is different, which means becoming friends with every particular person with autism requires patience and diligence and openness.

Let's Radicalize Autism Awareness Month, Motherscratchers!

I hate Autism Awareness Month. I know the educational pieces produced for this month are intended to help non-autistic people understand more about what it's like to be on the spectrum. But I sometimes feel that these efforts also make it so that non-autistic folks know more about the spectrum and, therefore, are even more relieved that it doesn't affect them or their kids. Perhaps I feel this was because every April I experience an uptick in messages that say things like, "I don't know how you do it." The authors might as well be saying, "Thank God, it isn't me."

Martin and I don't really need the world's awareness. We need the world's transformation. So I would like to declare April "Get Your Shit Together Concerning Autism" Month. This process involves four easy steps, which can nicely correspond to the four weeks in April.

Step 1 - Learn about autism in its many forms.

Step 2 - Commit yourself to becoming familiar with and close to people with autism.

Step 3 - Commit yourself to being comfortable around people with autism and their families.

Step 4 - Become a positive presence around people with autism and their families.

This week, I'll post some resources related to Step 1. I'll start today where all my undergraduate students start their inquiries: Wikipedia. I'll add some more interesting stuff in the coming days: journalist pieces about various therapies, videos by adults with autism, some books about the history of this diagnosis, etc. There's a lot of stuff out there that can help you understand the many ways people inhabit the spectrum. But that is only the first step.

Martin has two behavioral therapy appointments a week. He takes medication. He has endured thousands of hours of speech, occupational, behavioral, horse, and talk therapy. He is already working hard enough. It's your turn, readers. Get ready to get your shit together. The world will not get better for people with autism if you know more. It will get better when you change.

An open letter to the members of OK Go

Dear Damien, Tim, Dan, and Andy:

I know you by name. I watch your videos all the time. Your pictures hang in my living room. But I'm not a creepy stalker. I'm simply the mother of Martin, who has made you and your music the subject of what I call "autistic devotion." His past devotions have been United States presidents and maps of Africa. These devotions include intense study as well as creative elaboration. And while your own work is already elaborate, let me list the ways Martin riffs on you:

1. Martin has built you out of legos. The lego figures wear different outfits that correspond with the costumes in your videos.

2. He uses Dungeons and Dragons figurines to recreate the marching band formations from the "This Too Shall Pass" video.

3. He learned the xylophone part to the same song and plans to play it at an upcoming church talent show.

4. He built the car from the "Needing/Getting" video out of legos. He drives it all over our house singing. He would also like to build a machine that includes all the instruments from this song so that he can play them all at once.

5. He has drawn the parts of the Rube-Goldberg sequence from the second "This Too Shall Pass" video on a roll of paper. He can draw it from memory.

6. He has planned your visit to Austin and designated sites for you to sing your songs. He wants you to recreate the "Here It Goes Again" treadmill sequence at our nearby YMCA. He's still figuring out how to procure the dogs necessary to recreate "White Knuckles." He's stumped about how to get marching band uniforms. He's hoping Goodwill might deliver.

7. I could keep going.

On the one hand, I would love for him to meet you. To that end, we are taking him to your upcoming concert in Austin. On the other hand, he would be paralyzed by the fact that you are real people. In his mind, you are only what he has seen on the screen and heard with his ears. In his perfect world, he would use you like real-life figurines to recreate all the scenes he loves. He would not know what to do if you expressed ideas of your own or if you resisted his plans.

This is why I never attempted to get him a handshake with Obama, even though everyone we know has said it would be great. "He loves presidents. You should do it," they say. It's true that he loves presidents and that his autistic devotion has led him to learn more facts about presidents than anyone else I know. But I also know that Martin would want to tell Obama what to do. To ask only questions that interest him. Martin would not follow Obama's directions. He would not answer Obama's questions. And my guess is that a president would not appreciate that.

So Martin dreams of meeting you, but not a real-life meeting. He envisions a meeting that fulfills the dreams of his autistic devotion. In that sense, he loves you like teenagers love. Intense, but not really grounded. The stuff of great love letters, but perhaps not real-life encounters.

In conclusion, I love your music and crazy videos. But my kid loves you more and with a kind of purity and energy that we adults can only remember fondly from our youth. If you'd like to meet your biggest fan and can accept him on his terms, we'll be at your concert in October.

All the best,
Rainmom

your reward shall be in....the lego store

People, things are getting better! And they were really bad there for awhile. The list of interventions over the past few months includes a new doctor to manage medicine, a new counselor, a new ABA therapist who comes to our home, a social worker, and a few occupational therapy sessions. It has taken a lot of time. And money. But people, we are starting to see some results.

Martin went to church today and had fairly good behavior. He has not been to church in weeks because he knocked someone over and regularly yelled and hit. Although school was a nightmare for him back in April and May, he now says he's looking forward to its start tomorrow. Although he sometimes still struggles with following the social rules of the world, he has been going to places like the pool and the YMCA without much incident. It feels like a miracle.

To be more scientific, that miracle has been realized through ABA therapy. You can find a good synopsis of this once-controversial, and now generally accepted therapy, as part of this article. Most basically, ABA involves breaking down daily tasks and behavioral expectations into tiny chunks. When children perform one of these small acts correctly, they receive rewards. When Martin had ABA therapy as a 4-year-old, he was rewarded for answering yes-or-no questions and making two-word sentences. He was then motivated to work for the rewards offered for three words and four and so on. With ABA, Martin learned to talk.

Martin's current ABA therapy is focused on behavior. It establishes a set of expected (or good) behaviors as well as unexpected (or bad) behaviors. As part of the therapy, we check in with Martin every 15 minutes of the day. He gets checkmarks for every 15 minutes of expected behavior. When a certain number of checkmarks add up, Martin gets a reward. On the flip side, we ignore bad behavior. Even if Martin screams at us or hits or kicks, we pay no attention to it. The goal is that Martin learns that bad behavior does not get him what he wants. Good behavior does.

Martin is currently at the lego store because he made it through church this morning. I know that some of you might think, "Wow, buying kids legos to fulfill basic family obligations? No way." If I didn't have a kid with autism, I'd feel the same way. If a kid can apprehend the rules parents can and should create the expectation that these rules be followed. But what if your kid can't apprehend the rules? What if no amount of explanation gets through? What if the only way to learn it is to do it BEFORE understanding it?

Since Martin got through church today and received a reward for it, it will most likely be easier for him to go next week. And we won't need as big a reward as incentive. Perhaps some ice cream after lunch. The hope is that rewards will no longer be necessary within a few weeks. And then we'll have a kid who understands that he's capable of going to (and maybe even enjoying) church.

Right now, we're still breaking down our days into 15 minute blocks. But soon it will be 30 minutes. And then hours. If I really let myself dream, I think about a time in the near future when there are no charts and checks necessary. And Martin is happy. And I'm happy. I will buy a lot of legos now in order to have the chance of such a day in the future.

You can go your own way

https://www.youtube.com/watch?v=6ul-cZyuYq4

I just returned from a blissful vacation hiking the California coast. The day I got home I took Martin on a special outing to the roller rink. Martin is an excellent skater. He's had roller skates for a few years and loves to zip around the neighborhood. Everyone smiles when Martin skates.

Even though Martin skates quite often around our house he has rarely been to roller rinks. It was a huge delight for him. When we walked in the door his eyes grew big. "This place is amazing," he said. I helped Martin lace up his skates and started working on my own. Before I could finish mine, Martin was out on the floor.

When I looked up I saw the most magical and scary thing. 150 people skated counterclockwise while Martin went the other way. As people flew by him he simply charged forward with a look of joy, howling at the top of his lungs. He was thrilled. I was fascinated and terrified. 

Martin seemed to have no idea that everyone else was doing things another way. That's quite typical with autism. Folks like Martin simply don't seem to apprehend the rules. There is something quite beautiful about it. But there are also dangers. I rolled onto the skate floor, caught up with Martin, and asked him to pay attention to my eyes. I told him that everyone needed to skate the same way. He would have to join the others skating counterclockwise. He looked at me with total surprise and said okay. He began to skate with everyone else and things were fine for a little while. But after he took a break and entered the floor again, he went the wrong way once more. Again, I told him he needed to go the same way as everyone else and again he looked at me with a little surprise and said okay. 

With autism, you have to say the rules over and over and over. Not only can you not trust that folks with autism will apprehend the rules on their own, but you also can't be sure that the rules will stick in their heads once you've communicated them. Your best chance is to make the rules available visually by creating a social story. Social stories are little books in which the rules are written down and illustrated. I've written many social stories over the past few years: social stories about getting on airplanes, social stories about where it's appropriate to pee, and social stories about going to the zoo. But at the roller rink I didn't have the capacity to make a social story and I could tell that the rules I told Martin with just my voice were never going to stick. If he's ever to learn that he needs to skate counterclockwise, he'll need to see it written down. 

Our society let's certain people go their own way. Great artists. The filthy rich. Toddlers. It's also the case that certain people feel they have no chance to do things in a different way. Imagine if Martin had brown skin. Imagine him growing up into a tall teenage boy who doesn't follow every rule and might not understand when a police officer commands him to do something. It's a question of privilege. Who's allowed to go their own way? By our society? By the police? By the roller rink staff?   

Bells and ears

Last night, I cried like a baby in front of 40 people at a public pool. The day itself had not been terrible. In fact, some good things happened. But I was tired and someone said something. And it was too much.

Perhaps it was too much because yesterday at 7am Martin had to get his annual blood draw to make sure that his medication is having no adverse effects on his body. I did not attend this blood draw. I just couldn't. My husband and father-in-law did the work. It wasn't pretty. There were full-body holds and lots of screaming and yelling involved. But the techs got the blood. And then the guys went out for breakfast. Martin came home and slept.

Perhaps it was too much because at 10:30 I took Martin for an occupational therapy evaluation and we were able to complete about 25 minutes of what was to be a 90-minute appointment. We were in a new place with new people. These people asked Martin to do things like bounce a ball, jump on a trampoline, and tie his shoes. Even though the appointment didn't go so well, the therapists were able to make an evaluation and we will get started with some appointments next week.

Perhaps it was because we had a two-hour appointment in the afternoon with an ABA therapist. She was AWESOME. When we called her last week and explained our situation, she recognized our struggles and worked around the usual wait-list for services. She will come to our home for appointments. She is drafting a behavior plan to help us overcome and end Martin's worst behaviors: the kicking, screaming, throwing things, hitting, and pinching. But she was clear with us. Things will get worse before they get better. The behavior plan calls for Martin's caregivers to do things that will completely piss him off. She told us to buck up for the next few weeks.

Perhaps that's why - by the time I got to the pool last night - I just needed for my kid to swim happily and freely. I just needed to sit by the poolside quietly and watch him enjoy himself. And so when a parent came to me to tell me about the way Martin had "traumatized" his daughter at the pool several days ago and when that parent kept repeating this information over and over even after I said that I had heard him and would take care of things - well, I just didn't have it in me to keep it together.

While I don't get to read much about medical care outside of autism, I'm really interested in it. I've heard about two studies recently that have made me think a lot about my own situation. In the first, researchers found that parents of children in NICUs experience months of PTSD-like symptoms even if their child survives and eventually flourishes. Just the experience of being in the NICU - with its constant alarms and sense of crisis - leaves parents scarred for months. Living with the possibility of death at any moment makes these parents of newborns more like Iraq veterans than like those of us who have never stepped foot in a NICU.

My friend is the researcher for another study. She studies palliative care techniques and their effects on families. She devised a study - informed by therapeutic responses to veterans with PTSD - in which family members who have made end-of-life care decisions get to tell their stories to an empathetic listener with no connection to the ill person. My friend has found that family members feel better and show fewer symptoms of trauma when someone just listens to them without judgement.

Thinking about these studies helps me understand why I broke down at the pool yesterday. It had not been a terrible day. In fact, I was incredibly grateful to have gotten the ABA therapy process initiated. I went to the pool hoping for a little moment of happiness for both Martin and myself. Instead, I got talked to. The alarm bells went off. It was a crisis when I wasn't expecting one. And when I tried to respond, the parent wouldn't listen. And the parent certainly judged.

The takeaway? Let's not be people who set off alarm bells. And let's be people who listen.

PS - The movie is coming along!

When you can't write and can hardly move forward, make a movie!

There is some progress to report. The new behavior chart from the therapist is making a difference in Martin's choices and behaviors. It's not a dramatic difference, but we've seen some changes. We have finally worked through the process of identifying and scheduling an in-home ABA therapist's visit and some occupational therapy. I have also submitted an appeal to my employer's office that handles insurance coverage (or in our case, lack of coverage). Things are happening.

But it mostly feels like they are not happening. Yesterday, Martin still had some explosions. He kicked and pinched me at a public pool. He yelled at some children who stared at him in disbelief. His behavior at church on Sunday was the same old pattern of quiet interrupted by inexplicable physical and verbal chaos. Getting the new therapy appointments on the calendar seems to have taken forever. The insurance appeal will surely be turned down. And I can't finish a paper that's supposed to be drafted in less than a week.

So I am making a movie. Completely rational choice, right?

And I'm trying to make it through these long days with Martin, hauling him from playscape to pool to museum to YMCA in an effort to keep him busy and eventually make him exhausted.

You're all invited to the movie premier a few days from now.