Shopping with autism

A reader asked me to describe what it means to shop the autistic way, and this seems like the season for it. I hate shopping almost as much as my son does, for different reasons. I rarely find anything I like, whether I’m looking for clothes that fit, food without garbage ingredients, or just about anything that is actually well made. But for Nick, it’s a nightmarish mix of sensory input, dizzying details and way too many choices.

So here’s how we do it and how I am teaching him to do it himself. Please bear in mind that he is 14 and I am writing about how it is now, which is different from how it was when he was small. Back then, the goal was to get the job done however possible. Now, the goal is to work with him to figure out what works, and to teach him how to get the job done himself as he moves toward adulthood.

Strategy #1: Shop online. You can buy anything online now. Our latest purchase was pants, after the store where we’ve been buying the one kind of pants Nick will wear stopped carrying them. I searched for the brand and style and ended up ordering them from the brand’s website where they actually had better sizing options available than they’d had in the store. They were reasonably priced and shipping was minimal. Win/win!

Shoes are another thing we order online whenever possible, once Nick has suffered through a trip to a shoe store to find some that he likes. Shoe styles don’t change that often, at least not the sneakers Nick wears, so I can usually find the exact same shoe online when he needs the next size. There are some sites that offer free shipping and free returns, so if I can’t find the same shoe and he can’t handle a shoe store visit, I can order several pairs for him to try on and return whatever doesn’t work. The shoes do cost more because of course the shipping costs are rolled into the price, but returns are hassle-free with labels they provide, and I budget for it by spending less elsewhere. (I’m dressed head to toe in Thrift Store Chic, myself, and happily so!) Eventually he will need to decide if his budget can allow for it.

Strategy #2: Shop with a list and do not deviate from that list. When Nick and I must go into a store, I always have a list of what we need and we go directly to those items and then directly to the checkout. I don’t stop to browse or ponder. This not only minimizes our time in the store and thus Nick’s exposure to sensory input, it also keeps us within our budget as we don’t spend impulsively. If the line at checkout is long, Nick is old enough to wait for me outside. Eventually, he will have to wait in lines himself, but he can choose times of day when it’s not so crowded or shop with a friend who can wait in line for him. Freed from the notion that shopping must go a certain way, he can be creative in how he gets the task done without harming himself.

Strategy #2: Get very familiar with one or two stores and shop there whenever possible. As much as I prefer to spend my money at small local businesses, the big stores where you can buy everything from food and clothing to garden supplies and tools are extremely practical. We also have a small market a block away from home where we do most of our grocery shopping. I can actually send Nick there with a list nowadays because he is familiar with it, it’s never crowded, the checkers know him, and he likes to be useful.

For some people, farmers’ markets are a great alternative to stores. Karla likes them because they’re outdoors and the food is interesting. Nick is not a big fan because they can be chaotic and require too much interaction. It’s important to explore your area for options and figure out what suits you.

Strategy #4: Allow plenty of time. Nick loves to go fishing and this means that he frequently needs to buy fishing stuff like hooks, lures, and line. We have a store near us that stocks a huge supply of fishing equipment—good because he can always find what he needs, but not so good because it’s a huge overwhelming place. When we go in there, he likes to be left alone to look by himself for a while rather than immediately approaching an employee for help. He prefers me to be nearby but not right next to him. If he can’t find something, he will eventually ask someone, but working up to that can take 15 minutes or more. I plan for that time (I always have crossword puzzles on my phone to pass the time) and don’t pressure him to pick up the pace.

Strategy #5: Use protection every time! By that I mean, of course, sunglasses and earplugs. Don’t underestimate the impact of the buzzing, flickering lights (I can’t see them flicker but Karla can), the noise of the PA system and constant chatter of other customers. We can’t do anything about the smells of things like cleaning products and people’s perfumes, but minimizing the other input can make the rest tolerable just long enough to get what we need and go.

Strategy #6: Carry cards to deflect eager employees. You can order custom business cards that say whatever you want and keep them in your pocket in to hand to store employees when you walk in. Karla has some that say something like “I’m autistic and I would appreciate if you left me alone until I am ready to talk to you.”

Strategy #7: Forget the mall. I know that some people go to malls for fun. I know that recreational shopping is a common American pastime. I don’t understand it myself (remember, I hate shopping too!) but just understand this: malls are not fun for people with sensory sensitivities or those who are overwhelmed by choices. If you have an autistic child or friend, please don’t ever say the words “let’s go to the mall!” If you happen to know one of the rare autistics who enjoys the mall, let them suggest it to you.

We all have to do things we don’t want to do sometimes, but we don’t necessarily have to do it the way society expects us to. Think and shop outside the box.

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On being wrong

As soon as we met, I saw Karla as a potential instruction manual for raising my kid. One of the first things she said was that she wanted to teach him to be proud of being autistic, to be happy with who he is. And while I said of course, I want him to feel that way, I didn’t fully realize at that time that the reason Karla wanted to teach him self-acceptance was that I had not done so. Because I had not fully accepted him myself.

I thought I had. But I hadn’t. I still wanted to change him, even though I thought that I wanted to change his behaviors and not who he was at his core. Deep down, if I am really honest with myself, I have to admit that I did in fact want him to be different, and I was sad and frustrated with the aspects of him that were not as I wanted them to be.

In those first few weeks as we got to know Karla and she started spending time with Nick, we emailed a lot, and I mean a LOT. Sometimes after Nick exploded I would lay out every step of what happened, what he said, what I said, in humble self-baring detail and ask her what went wrong. She could always pinpoint the moment at which I had “lost” the battle… but she kept pushing me to look back far earlier to the root cause of the problem, which always led back to my having an expectation of Nick that was unreasonable—and that was rooted in my attempts to change him.

Example: Before we had his current IEP in place, Nick often had meltdowns after school (and in school, too). He would yell, call me names, throw things, and was becoming ever more violent. I saw this as bad behavior and issued consequences for it. He would argue and yell even more and we’d get locked in a spiral of me trying to make him stop and him just getting more angry.

I thought I understood what triggered his meltdowns but needed help stopping them. Karla informed me that the things I thought were triggers were happening way too late in the game and that I needed to look for root causes. I’d say he had a meltdown because I asked him if he had homework. After getting more details, she’d say no, he had a meltdown because he hasn’t gotten enough sleep this week and he’s not doing enough physical activity, on top of being overwhelmed every day by school. The homework question may have been the last straw, but it was not the root cause, and punishing him for not answering politely would not stop this meltdown or future ones.

Stubbornly I’d think… I just want to be able to ask him about homework without him throwing a hissy fit. Is that really too much to ask?

Clueless. I was so utterly clueless, not to mention disrespectful and unaccepting in my thoughts.

The poor kid was barely surviving, thrown into a full school day with no supports, teased and provoked, bullied on the school bus, coming home to my chatter and his siblings’ noise, and he’d had to quit his favorite sport because he just didn’t have the tokens for it anymore. And my big complaint was that I wanted him to be polite to me? What about what he needed?

Clueless. And Karla told me so, in many different ways, over and over again until I started to understand.

It was really hard to hear that I had been wrong. I thought I was doing everything I could to teach and guide my kid, but I had failed to provide him with the supports that he actually needed, and I had not learned to accept him.

Now here was this person who could really understand Nick because she had already lived his life. And for some reason I trusted her immediately—maybe because her answers and suggestions were always so logical I could not argue with them, maybe because of her complete openness. Whatever it was, I am indescribably grateful that I was able to hear the message, dig a hole and bury my pride in it, and open my mind to a whole new way of thinking.

This new way that has led to my kid having the supports that he needs, including a short school day, protection from bullies, a strict sleep schedule, better diet, and the right to advocate for himself. I accept that he is just fine as he is and my job is not to change his behavior but to support him to be the best Nick he can be. And guess what? Properly supported, he is a lot more likely to answer me politely when I ask him about homework. Support + acceptance = good behavior!

Sometimes, being wrong leads to all sorts of things going right, if you can just hear the message.

Autistic, joyfully

When Nick was 6 years old we took a family trip to Hawaii. On the island of Kauai, we took a hike through Keahua Arboretum. While the rest of us were awed by the grand scenery–the big picture–it was Nick who exuberantly pointed out gorgeous details along the way, like the many colors of rainbow eucalyptus trees and the texture of yellow hibiscus petals.

He has always been detail-oriented and a huge fan of nature. I loved watching him walk ahead of us on many a hike, joyfully exclaiming “look at this! Look at that! And that!” Through his eyes, I learned to notice and appreciate details–and developed a love of macro photography.

Nick enjoys things—good food, beautiful details, fun activities–with his entire being, and keeps enjoying them afterward: “That really was a big trout that I caught! He was nice and fat, too. Definitely my best catch yet.” And I will hear this over and over again for days (or weeks or months) as he savors the memory.

I remember when I reached an age when exuberance wasn’t socially acceptable anymore. I had some embarrassing moments when I would get all excited about something and other kids would make fun of me, or adults would tell me to knock it off already, so I learned to restrain my reactions and “act cool.” As Nick got older, he never held back his exuberance and he didn’t care what other people thought about it. (Which is way cooler than acting cool!)

When I started hanging out with Karla, I saw the same exuberance in her. It was really easy to let my restraint fall away and step into the practice of thorough enjoyment.

The first time we spent a day together, we went to brunch and exclaimed happily over our yummy food. Outside the restaurant, she sat near a fountain and took in the sight and sound of the water while I followed my camera around, shooting close-ups of flowers. I took my time, and Karla not only understood but encouraged my detail-oriented pace. We learned that our speed of moving through the world is very compatible as she takes in all the details along the way and I examine them through my lens, both of us eagerly exclaiming over awesome discoveries the whole time.

Karla was the first adult I met who showed exuberance as a matter of course–some would call it child-like, but really, why shouldn’t we adults get to let loose too? Since we have become friends, I’ve come to love this easy and relaxing way of being. Hanging with Karla means I don’t worry about what other people think or say. I immerse myself in the awesomeness of swirly flower hearts and spicy Thai food and the silky feel of moving water and all the other great things we discover all the time. If people give us weird looks because she’s flapping her hands with excitement and I’m doing a happy dance… so what? I notice the looks with amusement, and Karla doesn’t notice at all.

Accepting and enjoying exuberance has been great for my relationship with Nick. I no longer feel anxious when I see other people looking at him funny. I don’t stress about what they might say to him about his joy because 1) I know he really doesn’t care and 2) they are the ones who are missing out. I let his exuberance infect me and I enjoy every minute of it. He knows he can share things with me and I will respond with genuine enthusiasm. We bond through joy.

As I write this, I am in Karla’s RV on the Washington coast and we have just watched an amazing sunset after a fantastic hike to an utterly gorgeous spot where you can watch the grand Columbia River meet the impressive Pacific Ocean in the shadow of a really cool old lighthouse!!!!!

While hyperbole may not make the best writing, it sure is a great way to enjoy life.