When Things Feel Terrible: A Primer on Sensory Processing

Martin's ABA therapist taught us a very useful question: "Can you live with it?" When Martin is obviously having a hard time with something we can ask him this question. The question acknowledges that something feels wrong. It also inquires about whether or not Martin feels that the problem is insurmountable.

We use this question with Martin when he struggles with sensory processing, which is also sometimes called sensory integration disorder. There are sophisticated descriptions of sensory processing problems, but an easy way to think about it is to imagine moments when things you see, hear, smell, taste, and/or sense on your skin are beyond unbearable. For me, that would be seeing mauve slacks while hearing a car alarm and smelling a wet dog all the while wearing wool in summer. That situation would make me lose my mind. I could not easily live with it. Thankfully, I can't anticipate a moment when I'll have to.

For people with sensory processing issues, this unbearable feeling produced by sights and smells (etc.) happens a lot. It can be debilitating. It has been debilitating for Martin. Here's a partial list of the the things we either avoid (or must do) to address his sensory processing struggles:

• No Chinese restaurants (smell)
• No loud restaurants (which is almost all of them)
• Wearing exercise "soft" clothing all the time, even on Easter (sensation on the skin)
• No real haircut before the age of 6 (sensation on the neck and ears)
• No dentist visits before age 6 (all the senses)
• No hymn singing (which is not easy when you're born into a Mennonite family)
• No singing "Happy birthday"
• Sleeping in various tight-fitting spaces, such as under beds, in laundry baskets, ball pits, cardboard boxes, and once, with feet stuffed into a Tinker Toy can
• Swimming all the time (it's one of the only totally free feelings)
• So many foods to be avoided because of taste and smell
• Terror at loud toilet flushing and hand dryers in public restrooms
• Aversion to baby slobber (while at the same time adoring babies)
• No seeds on bread
• Sound-muffling headphones at elementary school music class 
• The list goes on.....

Now that Martin is verbal, we can ask him whether or not he can live with situations that test the limits of his sensory processing. I can ask him if he can live with the noise level in a restaurant. I can ask him if he can live with it if I put a bowl of cooked broccoli on the table. If he can't, we can determine if a work-around is possible. We can see about sitting outdoors where the sound can escape, rather than inside where it rings off the walls. I can put the broccoli on the other end of the table and Martin can grab a fresh carrot for his veggie. Martin's ABA therapist also works with him to increase his sensory processing capacity. It's hard to get through this world if any and all singing bothers you, so the therapist sings to Martin. She starts with a 10-second song and rewards him if he gets through it. Then she increases to 20, then 30, and so on. He has learned to live with the fact that some people (including me) just love to sing.

But the question is whether or not those of us without sensory processing troubles can learn to live with people like Martin, who have a sort of visceral need to wear exercise clothing in order to feel comfortable. Can we live with people who just can't go to Chinese restaurants, even if we don't understand how the smell can really be that terrible? Can we live with people who feel compelled to make negative comments when a beautiful, precious baby is slobbering? Can we live with people who respond to lovely home-cooked meals with a distorted face and slightly rude comments about how it smells?

Martin has been asked to live with a lot of things that make him uncomfortable. He works hard at it. He has to practice it. The question is whether or not the rest of us are also willing to live with things that make us a little uncomfortable?
  

Therapy

There are many reasons for the creation of Autism Awareness Month. One of them is the impact of early detection and intervention in the lives of children with autism. A common understanding among the varieties of doctors, therapists, and educators who work with people with autism is that the earlier the intervention, the better a child's chance to overcome some of the more debilitating aspects of the disorder. It's typical for pediatricians, psychiatrists, and neurologists to recommend a variety of interventions: a therapy called Applied Behavioral Analysis (ABA), speech therapy, occupational therapy, talk therapy, family therapy, and any of several possible medications that are otherwise used to address anxiety, ADHD, and impulse control. There's no definitive autism therapy cocktail. And it's not just because every kid with autism is different. It's that there is no handbook. There's no social worker or guide. Parents are often left to make up their own therapeutic regimen based on professional recommendations, online research, provider availability, insurance coverage (or lack thereof), and an assessment of the mental and physical wherewithal they have for all these therapeutic endeavors.

Even though it has overwhelmed our lives at times, I am grateful for the therapies that we've engaged for Martin. ABA has made possible everything from speaking sentences to toileting, from trick-or-treating to playing tag. Speech therapy gave Martin all the structures he needed to talk, converse, and understand. Occupational therapy allowed him to kick a ball, use scissors, and tie his own shoes. Family therapy has provided my husband and I all sorts of guidance for the parenting challenges we have faced. And medicine, well, I am grateful for it. Medicine has provided Martin a little help with impulse control. It has helped us immensely.

I would not be doing this week's duty of teaching readers about autism without mentioning that each of these therapies is also controversial to some degree. Many folks in the neurodiversity movement and autism self-advocacy networks are critical of therapies designed to "overcome" autism. They argue, instead, that society should learn to embrace a variety of ways of being in the world. They ask, for instance, why therapists make kids with autism work on eye contact. Why can't the rest of us just get used to a conversation without it? Some go further and wonder why the push for speech. They encourage folks without autism to consider that there might be ways to communicate without words.

This article from the New York Times, "The Kids Who Beat Autism," speaks to the many therapies that are used with kids with autism. It also explores the ambiguities that parents face. I hope you find it helpful.

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?