young boy in supermarket grabbing carrots off a produce shelf

The Advice I'd Never Heard About Supporting a Child on the Autism Spectrum

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My son Jack gets on kicks. Remember those Magna Doodle drawing boards? We had several minis (understatement!), because we couldn’t leave the house without one for what amounted to a large percentage of my son’s young life. One of the many reasons? Jack would use them as signs — he loves signs. He’d pretend that a walk we were on was a train ride, and he’d write each stop on the board. We’d pause along our way whenever we “pulled into the station.”

broadway farm grocery storefront

One of the sweetest (says his unbiased mom) was his cash register kick when he was about 6. He had calculators with rolls of paper that print out the calculations that are punched in, and they were his “cash registers.” Everyone who works at our corner grocer has known Jack his whole life, and they were charmed by his sincere desire to help out. “Jack’s going to help me ring up customers,” one would declare when they saw us enter. “Oh, no — he helped you last time. I need his help today,” another would say. And Jack would beam. He’d take his station alongside one of the cashiers, who would call out the prices to him as he or she was doing the actual ringing up of a customer’s items, and Jack would happily plug in the numbers and crow out the final tally. The cashier would quietly adjust that to account for tax and complete the transaction with the customer, and on they’d go to the next.

The other sweetest? Label makers, when Jack was 7 and 8. He’d print labels for people in the building and the neighborhood that were mini “gifts” to them, and he would beam when the recipient “got it” that he or she had just been gifted something precious.

Every year, he trick-or-treats with his dad, always in a very singular costume of his devising, and goes into stores in the neighborhood. “What are you this year, Jack?” or “Wow, Jack, that’s amazing,” are the common refrains. And we live in a building with a doorman now, where Jack sometimes likes to sit in the lobby with his LED sign reading “Welcome to Our Building.” The sign scrolls. It has three colors. It’s truly awesome. In case you hadn’t guessed by now, Jack is on the autism spectrum.

Don’t get me wrong — Jack is actually quite shy. He hates being in the spotlight with every fiber of his being. But as I hope you’ve gleaned by now, he seems to enjoy connecting and forging relationships with people as much if not more than anyone you’ll ever meet, and that tends to win out over his shyness — so long as he can engage in his own way.

There’s nothing shy about me, though, and I wind up getting asked a lot to speak with moms of children newly diagnosed as being on the autism spectrum. I recently spoke by phone with one such mom who said, “My 8-year-old son does a lot of things people find annoying, and they get irritated. I just don’t know what to do. He doesn’t mean any harm.”

I hear her loud and clear. Same here. Jack’s challenges aren’t always visible to the naked eye, and it can be easy for a stranger on the street to misinterpret them. As he gets older and wants to go places on his own, I worry that he’ll bump into someone and be scolded, or worse.

I had two answers for the mom on the phone. The first was obvious: As her boy gets older, teach him to advocate for himself. “I’m sorry — I wasn’t ignoring you. I have trouble with auditory processing and didn’t know you were talking to me. Can you please repeat that?”

But equally important, I believe, was my second answer, and it’s not one I’ve heard or read anywhere, which is why I’m writing about it now: This mom and her child’s dad need to get out there and actively build their son’s “village.”

A dear friend of mine lives in an actual village — a small seaside town, where nearly everyone knows her son, who is also on the autism spectrum. They’ve known him since he was born, so they really know him. In their minds, he’s one of theirs, and so they all adore him and look out for him. I don’t live in a small town, but my neighborhood in my big city is akin to one, and Jack’s dad and I made sure from the get-go that Jack’s neighbors knew him — really knew him — so that they, too, could truly “get,” appreciate and care about him.

Communities often rally around those they perceive as their own. I urged this mom of the 8-year-old to get him out there in ways he could tolerate and see to it he becomes familiar to those around him. And to fill them in about his diagnosis — engage their empathy, which can override their prior irritation. He’s a wonderful boy with many attributes, strengths and challenges. Let them see the full picture. I urged the mom to turn the people in her area from strangers into her son’s community, so that they, too, can see what she sees when she looks at and smiles on him. Yes, incidents with strangers will be unavoidable. But there could be far fewer strangers and far more people looking out for him as he grows older, far more people cheering him on. Far more people sincere when they say their version of our corner cashiers’ “No, you had Jack with you last time — I get him with me today!”

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When I Couldn't Fully Prevent a Holiday Meltdown

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This year, for the Thanksgiving holiday, I did everything in my power to stick to my routine. I knew it would be important for me as someone on the autism spectrum. I still had my college class the day before, and then I requested to work on the holiday itself. Then, I had a meal with my family. To keep myself a bit busy, I decided to plan some shopping for Black Friday with a friend. For the most part, things ended up going pretty smoothly.

Two days after Thanksgiving, I was sitting in front of my computer and suddenly felt this extreme restlessness and anxiety. I couldn’t figure out what was going on, and I attributed it to the fact that maybe I was just upset over something I had lost a few weeks ago. Maybe it was just frustration from my school assignment. But the feelings escalated.

I ended up having a complete meltdown. So I messaged a friend of mine and started to vent. I was so upset and couldn’t calm myself down. At one point I asked, “Where did this meltdown come from? It seems so out of the blue!”

My friend stopped me by saying, “You’re coming off of a holiday.”

I believe she was right. My meltdown likely had nothing to do with the item I had lost or the school assignment I was working on. I believe it was simply because — although I had stuck to routine as much as possible — there was still a holiday. And my brain just wasn’t able to process it. I compared it to feeling dizzy and knowing the ground is not moving, but your brain just feels like it is.

The moment my friend mentioned this, my meltdown stopped. I understood. And I could think clearly again.

I realized no matter how much I prepare for the holidays as someone on the autism spectrum, sometimes there may be no way I can fully prevent a holiday meltdown. But that’s OK. It’s nobody’s fault. It’s just that my brain processes things a little differently.

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What I'm Thankful for as the Parent of a Child on the Autism Spectrum

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Social media in November is often filled with daily posts on thankfulness. This year, however, the posts have seemed to have a much different feel, with little thanks or grace. So here are a few things I am thankful for: two happy, healthy daughters; a husband who works hard so I can stay home during these early years; family and friends who love, support and accept us as we are; and my 3-year-old’s autism spectrum disorder (ASD) diagnosis.

We recently received an ASD diagnosis for my daughter Nora. The diagnosis wasn’t a bombshell; it wasn’t devastating news. It was an answer. An answer to some questions, to some concerns. We have always known Nora is unique, that she has some quirks. And those quirks are some of our favorite things about her. We love her personality; we love her spirit. We don’t want to change anything about her. She is still the sweet, affectionate, hilarious and adventurous girl we have always known — diagnosis or no diagnosis. Only our perspective has changed.

We aren’t searching for a “cure” or a cause. Our intention is to get supports in place to help her develop and maintain meaningful and appropriate relationships, as well as improve her skills to be successful in school and the community. She has so many strengths and is so motivated; we do not doubt her potential. I am thankful for Nora. And if ASD is a part of Nora, I am thankful for that as well. Not only has the diagnosis given me a better understanding of my daughter and her needs, it has also given me a renewed thankfulness for our family and friends. Their response has overwhelmingly been one of acceptance, encouragement and love. So as we continue on into the land of referrals, wait lists, and paperwork, paperwork, paperwork — it is with a sense of relief and gratitude.

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Helping My Daughter Understand That We All Learn at Different Rates

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My daughter is 11 years old and has an autism diagnosis. She is an amazing kid, but her self-esteem can be low and she can also be self-critical. I have been working in conjunction with a clinical psychologist recently to help my daughter build confidence in her abilities. She regularly compares herself to other students in her class, which sometimes makes her feel like she isn’t achieving enough.

I continually work with the school, trying to reduce any additional stressors that affect her daily school life. That includes support with transition into school and reduced homework at home. I want my child to achieve, but not at the detriment of her well-being. When it became evident my daughter was putting this added pressure on herself, I had to find a way to help her reduce it.

It has been highlighted that working with a child’s interest to understand social situations or learn in the classroom works well. My daughter has varied interests, one of which is swimming. It is an activity she does every other week with her dad and something she loves. But it is also something she has had to work at.

We have recently been working with a clinical psychologist and talking about how it is OK to ask for help in the classroom, as well as how we all learn and work at different rates. An analogy we have started to use with my daughter is to compare learning at school to learning to swim (something she enjoys), and it seems to help her understand.

We tell her we all learn to swim at different rates. Some of us enjoy swimming more than others, and this is OK. Everyone who learns to swim is probably more confident doing certain strokes over others. Some of us might prefer to swim breaststroke or front-crawl, while others might be more confident doing the backstroke. When we swim the length of a pool, we don’t all reach the end at the same time.

Swimming and learning are similar. Like swimming, people learn at different rates, and this is OK. Each person is more confident in different subjects. Some of us prefer to learn maths to English. Some people are better at physical education than learning in the classroom. We don’t all finish our work at the same time.

Using a comparison of something my daughter enjoys to understand a social situation seems to work for us. We have reinforced the learning by putting classroom rules on a keychain that include short statements like “I can ask for help more than once” and “It’s OK if I do not finish all of my work.”

What has been evident through helping my daughter is that she has a set of “rules” in her head, and sometimes the rules are too tough. She expects so much from herself that I have to balance this with reassurance she is doing enough, she is amazing and I am so proud of her.

My daughter may always be a little self-critical, and she may continue to put unnecessary pressure on herself to achieve alongside her peers. In turn, I may always have to be her reminder that we all learn at different rates, and this is OK. I hope with this continued support she will realize she is enough, exactly as she is.

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To the Parents Whose Children Love to Line Up Their Toys

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Dear parent,

Does your child love to line up their toys?

As someone who consults for families and gives talks on early intervention plans, this is one of the most common things I see amongst toddlers and younger children who are on the autism spectrum.

When I was a kid, I loved routines and order. Having a structure was important for me; it put me in a place of comfort. This started as early as I could remember. They would usually start with trains and Legos. I used to love to organize my trains in height order. As my love of toys began to grow as I got older, this became a common trend with my Teenage Mutant Ninja Turtles action figures and then other things in my house as well.

This fascination turned later into a love for spinning toys over and over. However, this stopped for me because I’d often twirl my hair to mimic the behavior of spinning when I didn’t have any toys around. This used to leave my hair in knots at a time when my hair was long because my parents couldn’t cut my hair due to my ongoing sensory issues.

I often enjoyed this much more than interacting with others, including my family and friends. I’m not going to lie, some of that structure has gone away as years have gone by (talking from the current perspective of a 28-year-old man who needs to clean his apartment when I hate to clean).

My parents used my love of lining up toys as a way to help me build on my social skills. I came up with stories for each lined-up toy and role-played different scenarios they were a part of. Then I recorded the stories I came up with and watched them during free time.

This helped me become more cognizant of my key interests, as many times the characters I created either loved basketball or loved movies, two of my favorite key interests.

As I always say to our community, when you play up to kids’ strengths while working with them on their challenges, they can do incredible things.

As Dr. Temple Grandin, one of our leading autism advocates, says…

“There needs to be a lot more emphasis on what a child can do instead of what he cannot do.”

Take this to heart, and the next time your child lines up toys, you can possibly help them have fun while also helping them as well.

Best,
Kerry

A version of this post originally appeared on Kerrymagro.com.

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Why the Holidays Can Be Hard for Me as a Person on the Autism Spectrum

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This time of year — the holiday season — can be especially hard for me as an adult with an autism spectrum disorder. It has been especially hard for me to deal with Thanksgiving and Christmas since both of my parents passed away many years ago, and I don’t see my family members often. I have been living on my own for many years now. Most of the time during the year, I do not mind being single and on the spectrum. I am as independent as possible with a little help, because I also have a medical condition that has to do with my heart and lungs. But when the holidays come near, I have a hard time dealing with it.

A few years ago, I was so down about the holidays I wrote a Facebook post saying I was not sure I was going to decorate for Christmas. Thankfully, many of my friends came to my rescue and encouraged me to decorate my place, which I did after much thought and prayers. For the past 15 years I have also been alone on Thanksgiving. It is also a hard holiday to get through. Thankfully, I do have a 17-year-old cat I love and adore who keeps me going. During that day, I usually keep Facebook on all day to keep me company to see what my friends are up to, and they can see my posts during that day. One little nice thing about being alone on Thanksgiving Day is that I can watch the Macy’s Thanksgiving Parade in peace, and I don’t have to deal with manners like I would at a family member’s place. I can cook my own turkey and have what I want to eat at Thanksgiving dinner, even though it can be a lonely experience.

Every year I have three close friends who visit me right before Christmas. I have known these wonderful friends since our college days together. Every year they bring Christmas presents to open on Christmas Day. If it were not for them, I would not have any gifts to open on Christmas Day. I do have an after-Christmas get-together with my family, which is nice. It’s nice to see everyone. But for some reason, maybe it is the Aspie in me, but I feel like I am looking in from the outside. I feel like I don’t belong.

If there is anyone else who has a hard time with the holidays, my advice is to remain strong. Maybe try to see if there are any family members who would like to invite you to their house for the holidays, or if you have friends you might be able to spend time with over the holidays.

Over the last several years, I’ve been trying to get myself in the holiday mood by listening to Christmas music a little early, and I try to get my place ready for Christmas by Thanksgiving Day. I hope this story will help others who are like me.

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