young woman looking at trees in forest

The World I See as a Person With Autism Spectrum Disorder

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A lot of people ask me what the world is like through the eyes of someone with autism spectrum disorder (ASD)

First, it’s different for every individual, but we have some things in common. From a young age, I knew I had an amazing imagination. Who didn’t point at the clouds and describe things that they saw like maybe a giraffe, an elephant or sheep? But I saw animals and objects in the clouds that even adults couldn’t see.

I look at the ground and see patterns formed by rocks with all different shapes and sizes, or I’ll see a pattern on a wall in my mind. I’ll start by doing a dot-to-dot drawing, and I’ll see an image in my brain that most people couldn’t see.

When I meet someone, the first thing I look at are their feet. I know it sounds weird, but here’s why: I love shoes. I find they can tell you a lot about someone’s personality. Next I look for tattoos, which can tell you about a person’s interests, life events or childhood. Then I’ll look at their clothing, since I love fashion. Again, clothes can tell you a lot. I’ll do this in a matter of seconds before I even say hello to a person.

When I was doing pet photography, one of my clients was running with her dog for some photos. When I looked at them, I could tell she was into sports by her running style. I asked her if she liked sports, and she looked surprised. She told me she loves sports — mostly soccer and anything with running. Then I showed her the photos and told her I could just tell she liked sports just by the way she ran.

Then there are sounds. Imagine hearing every clock tick, every fan blade swooshing above you, the kettle as it’s boiling or someone tapping on something or clicking a pen.

For some people with ASD, these noises can sound louder than they should be, and you hear them all at once. I went to an ASD workshop last year, and I had to leave early because a kettle kept heating up every five minutes or so. After two hours, I couldn’t stand being there anymore. Imagine a normal pitch that you might hear every day. To me, that can sound like the highest pitch in the world.

Think about what your brain would be like if you had five coffees one after another or three energy drinks. From the minute I wake up to the second I fall asleep, my brain is going 100 miles an hour non-stop. I have medication for it now, and I’m not afraid to say it took me 10 years to find the dosage that worked for me. 10 years!

I think of my eyes like a DSLR camera. They capture everything I see in full detail. While you might see a park full of trees, I see small trees, big trees, trees with missing bark and trees with birds or ants on them. I see leaves of all different shapes and colors, rocks and twigs all in a few blinks.

I see things others miss.

Lead photo source: Thinkstock Images

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Why Don't They See What I See?

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I watched you tonight during your dance class, sweet girl. Don’t take that the wrong way — I’m always paying attention while you dance. Tonight, though, as I sat on my side of that mirrored window, I watched you and got a glimpse into your little world. What I saw as I was watching evoked a myriad of emotions I’m still trying to sort through, hours later.

Emotions in and of themselves are complex things. Trying to understand the reasons behind them is like peeling back layers from a ball of rubber bands. The outside layers are obvious enough to separate from one another. But as you get closer to the core, the process becomes far more daunting. The bands down there are so tightly intertwined, they almost seem to want to stay tucked away there in the middle, protected underneath the more superficial layers. The more I think about my own emotions, the more confused I become. How is it that in 45 minutes, I can look at you and feel so many different things?

unnamed

In one moment, my heart is swelling with so much pride, I truly feel it might burst. There you are, standing in a circle with 12 other little girls in your class, blending in seamlessly. You’re smiling, laughing, and going through the motions, right along with them. Things shift then, and moments later, I’m so anxious that I have to remind myself to breathe. Your class is lined up against the back wall as each of you wait for your turn to try a new dance move with the instructor. You follow directions and take your place in line, but then, like every week, you find yourself in the mirror. The dance class has now become background noise to you. You’re busy dancing your heart out to your own music. I am not anxious for you. You are happy, and that’s all I want when I bring you here. I’m anxious for me, I suppose. I hold my breath because I wait for a question or comment about you from another parent watching the class. We’ve been coming to class for four weeks now, and I’m pretty sure the other parents have figured out, or at least suspect you are on the autism spectrum. Each week, the likelihood of anyone commenting on your actions probably decreases, yet I hold my breath and brace myself, anyway. Your turn in line comes. You try harder this week than ever before to mimic the instructors steps, and pride once again prevails over anxiety. It’s amazing to see these transitions get easier for you each time you come.

Class ends, and you come out and hug me. As you remove the ballet slippers and replace them with your new “rainbow shoes,” a hint of sadness creeps in. It’s just you and me, now. The other parents are chatting about getting ready for kindergarten as they pack up with their daughters to go home. I’m not involved in the conversation, and honestly, that’s OK. I’m not here to connect with them; I’m here for you.

I’m sorry no one in class has reached out to you. They’ve watched you, but they haven’t seen you, and that makes me sad. I wish they understood as you sit with me tonight, changing your shoes for the third time in 45 minutes, that you wore the same pair of bright pink Nikes with every outfit for nearly a year. Only in the past two weeks have you worked through the panic the idea of new shoes has always brought you. I wish someone else here was cheering for you.

I understand that other parents might not know what to say — to me, especially, and so they don’t initiate conversation. They problem is, their daughters are watching and learning from how their parents regard you. Many of them will model these very behaviors. Of any potential obstacle you could face, this is the most heart-wrenching. Nothing consumes me more than the idea that because you are different, you might be lonely.

The pride I felt earlier as I watched you blend in wasn’t because I wish for you to be like the other girls. You are beyond incredible exactly as you are. My pride was a result of watching you be yourself, while also watching you truly be a part of something with other children your age. There are many more months of dance class. Hopefully, in time, everyone will begin to really see you. Hopefully they will reach out. After all, a few of their daughters have begun to join you as you dance in the mirror. As it turns out, all 4-year-old girls love to watch themselves dance.

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My Autistic Son Doesn’t Flap

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My autistic son doesn’t flap. He doesn’t line things up or hum or shriek. I have another child who occasionally does these things but not my son.

When I tell people two of my children are on the spectrum, I often see pity in their lowering gaze, or worse, hear a guttural sound indicating misplaced empathy. Often they make efforts to identify with our family by telling stories of children they know who are on the spectrum or talking about articles they’ve read. I appreciate the effort but not the undertones.

My autistic son isn’t interested in specific subjects, doesn’t avoid eye contact and isn’t a loner. He doesn’t run off or strip his clothes off unexpectedly, and he isn’t affected by loud environments. My son’s autism is none of these things.

I tell my son that autism is many things and no one person is the same. You can no more generalize about a neurotypical child than you can an autistic one.

Autism for my son is his ability to absorb and assimilate vast amounts of information about every subject. He has no limits.

Autism for my son is his ability to tune in to the most subtle of reactions. He empathizes with people even if he sometimes needs confirmation of their intentions.

Autism for my son is his sensitivity to space, movement, taste and texture. He seeks out a high-level input for his senses.

Autism for my son is his sensitivity to his emotions.

Autism for my son is his skill of interpreting abstract information and his creativity with language. He can create images using words alone.

Autism for my son means he likes to be leader, helper, teacher or coach.

Autism for my son has taught him to accept everybody as they are.

Autism for my son is brutal honesty.

My autistic son is 6 years old. He likes Minecraft, theme parks, McDonald’s, swimming, making dens, climbing trees and trampolining. He wants more ice cream than he can eat and stays up later than he should.

My autistic son doesn’t flap, nor is he likely to start. If you want to know about him, ask. If you want to know about his autistic influences, ask. If you want to understand his challenges, ask.

Please don’t make assumptions about his intelligence, his friendships or any other aspect of him. My son is as individual like you or me — autism or no autism.

Lead photo source: Thinkstock Images

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7 Ways We Try to Make Parties Less Overwhelming for Our Son With Autism

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My son Vedant’s first birthday was a grand affair for us — magicians, balloon makers, face painting, clowns, mascots, the whole nine yards. We celebrated each of his birthdays with just as much enthusiasm, expecting that soon our son would be dictating how he wanted his birthday to be celebrated. But over time, he didn’t seem interested in having birthday parties. He never asked for gifts or showed interest in the gifts he received. That’s when we realized we don’t have to follow the crowd and do what is expected on birthdays. We instead decided to do what we knew our son would enjoy any day of the week and just give him an overdose of that experience on his special day. Now we book a night at an indoor water park and let him have a field day. He loves it.

Though this took care of the anxiety of his birthday, there were still other social gatherings, like BBQ parties, birthdays of other kids, Christmas, Halloween parties and more. At times, Vedant would cry, try to escape the gathering, or try to take us back to the car. At first, we stopped going to these gatherings. But I realized this wasn’t a solution; we wanted Vedant to learn how to cope at these gatherings, and we wanted to help him with that.

Over time, my husband and I came up with a few ways to help our son with social gatherings:

1. Change expectations: This was the biggest change we made. We could not go into a party expecting that our son would sit down with other kids and play a board game or run around playing tag. We had to accept that it’s going to be tough on him being around so many people and so much noise, and that it’s going to be some work for us to help keep him calm. When this expectation changed, we were more prepared.

2. Define a baseline: This was the second most important thing we needed to agree upon. We needed to figure out how much is too much for him. Some parties can get really noisy, and some can be relatively laid-back. We had to know when it was time for us to thank the host and leave. We needed to ensure that the experience was at least tolerable, if not enjoyable, for our son so he would not be anxious the next time he was in a social situation.

3. “First in, last out” is not important: I told the host every time that we would come in late and leave early. That minimized the stress for us because the duration was short and sweet, and it gave our son the opportunity to be at a fun event but not get overwhelmed by it. We try to leave before it gets too much for him. As he gets used to being in situations like these, we can slowly start to stay longer and enjoy more.

4. Take turns: To avoid the sensory overload, Vedant had tried to escape some parties. So my husband and I decided to split time. While I spent the first 15 minutes keeping an eye on our son, my husband could hang out with his friends, and then we switched roles. This strategy has worked really well for us. This way, we are able to catch up with our friends and also not let our son feel insecure or unattended. One of us is always with him or watching over him.

5. Participating is not mandatory: My son never showed interest in his own birthday, so he may not be excited about someone else’s. I stopped dragging him around the birthday cake, forcing him to sing, clap, and pose for pictures. Previously, I would try to push him to do that because I thought that’s what kids do. We both ended up being upset. Now that I’ve stopped, I notice he gets excited watching other kids and sometimes claps on his own. He is more invested when it’s not imposed on him. Same for party games. I know he doesn’t like getting his face painted or being inside a bouncy castle so I don’t push him anymore. I encourage him, I want him to experience and try something new, but not by making him uncomfortable. I would rather have him leave the place feeling happy and relaxed than upset and stressed.

6. Try sensory activities: A sensory toy can keep my son calm for a while, so I carry one with me. This keeps Vedant engaged and more in control. Whatever sensory diet I can think of, I offer him that every now and then — a tight hug, a swirl or two, tickles, some calming music — while he tries to cope in a challenging environment.

7. Talk about it: When we go to a social gathering, I make sure I talk to Vedant about it on our way to the venue. I tell him where we are going, the people we’ll meet, what the party’s about, and what to expect there. I don’t know if he understands everything, though I hope he does or one day will, but I don’t want him to be taken by surprise when we arrive at the party. I also make it a point to excitedly talk about what all we did at the party once we are back home, too.

The strategies we use seem to be working well, but then there are always days when, like any other kid, he throws us a surprise. But we will continue to work through any challenges and keep trying.

Follow this journey on Tulika’s blog.

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autistic boy's drawing where he labels himself as bad

When We Realized Our Autistic Son Thought He Was 'Bad'

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When my son Edward was little it seemed he was constantly getting told off by most people he came into contact with, certainly by my husband Nick and I and his older sister, Leila. Back then, we didn’t know he was autistic, and I think we would have been more patient with him had we known. He was forever at the receiving end of “don’t do that,” “stop it,” “be quiet,” “sit down,” “calm down” and so on.

His behavior was often “inappropriate” compared to other children the same age, and so he got frequent feedback that he was doing things wrong.

When I picked him up from his first full day at preschool the super experienced teacher said, “Edward has settled in OK today, but I have to say he is the most assertive child I have ever met.” Curious and a little disconcerted I asked for more information. It transpired that Edward had quickly found the large wooden building bricks and had spent his entire time at preschool playing with them. He must have viewed the bricks as his own, as he had defended them like a bear defends its young, shoving and shouting at anyone who dared try and take them away from him. To him they were his bricks and he needed them, every single one. Taking turns and sharing didn’t exactly come easily to Edward, but he got there in the end. His love of wooden blocks has never really passed, considerable hours have been devoted to the stacking and rearranging of these wonderful items – here’s one of his creations from a few years ago.

bricks stacked like a castle

I used to dread picking Edward up from school throughout his reception year; his teacher would invariably want to have a word with me. On one of these occasions, when the teacher was telling me how badly Edward had behaved, Edward started humming a happy little tune while running his hand up and down the teacher’s back. In that moment it dawned on me that in addition to helping Edward learn how to improve his behavior at school I was going to have to train him in how to respond when being told off by a teacher.

Knowing how to behave appropriately while being told off must surely be part of the essential school survival kit. Most kids simply know they need to look solemn and get their “I’m taking this seriously and I’m sorry for what I have done” face on. No one teaches them this: they just know what to do. Autistic kids are likely to have trouble picking up these untaught social conventions, and so they may have absolutely no idea how to respond appropriately to a teacher who is telling them off.

In our family the “being told off” game was birthed when Edward was still in reception – I would  impersonate his teacher telling him off (which he actually found quite funny) and his job was to respond by 1. Standing still. 2. Looking down at the ground 3. Keeping his hands down and possibly most importantly 4. Keeping quiet. Please be assured that we managed to keep this game fun and Edward was always up for playing it.

One day I discovered a piece of paper in Edward’s bedroom and I realized all the negative feedback he was receiving, day in day out, was taking a toll on his self-esteem. He was 7 years old. On the paper he had drawn a single line with the word “good” written at one end and the word “bad” at the other. Above the word “good” I saw he had written “mummy,” which made me feel ridiculously smug for a short moment. The rest of the family names were written fairly close together at the good end, although not necessarily in the order I would have predicted. When I noticed Edward had written his own name directly above the word “bad,” miles away from the rest of the family, I felt so sad. I had a chat with him and told him he wasn’t bad, but I could see my words were just bouncing off him like rain on stoney ground.

autistic boy's drawing where he labels himself as bad

Nick came home from work, and I showed him the piece of paper. He didn’t try and chat with Edward. He simply got another four sheets of paper and taped them to the first one. He crossed out the original “bad,” extended the line so it went across all four sheets and at the very end of that long line he rewrote the word “bad.” He left all of our names exactly where Edward had written them and quietly, without any fuss, placed the paper on the mantelpiece.

dad's drawing on a mantle

After a while Edward came in and took a long look at the revised version of his work. He didn’t say anything, but I could see him visibly relax as if a weight had lifted.

Sometimes visual communication can get to the heart of the matter in a way words cannot.

A year later Edward was diagnosed with Asperger’s syndrome. The understanding that came with the diagnosis helped Edward see himself in a different light. He wasn’t bad, he was autistic. His self-esteem had taken a wobble, but his diagnosis helped him get back on track.

Follow this journey on A Blog About Raising My Autistic Son.

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When a Shopper Told My Son With Autism He Was 'Badly Raised'

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You are rude and have been badly raised.”

I turned around to face the person who had said that to my son. In a split second I had figured out what had caused such harsh judgment. My son had reached out and touched the woman, making circular movements with his fist on her left arm. That incensed her even more, and she yelled louder at him. The words seemed directed at me though for being such a terrible parent. She was after all, saying Ethan was badly brought up and had no manners.

We were at the supermarket, and Ethan had probably been distracted and ended up separated from his brother and me by the now irate shopper. In his need to join us, he rushed past, stepping on her foot and triggering the rebuke that first caught my attention. Ethan is on the autism spectrum and has severe language delays in English. The enraged shopper was speaking in French, a language he neither speaks nor understands. He did, however, understand that the shopper was annoyed and that he was the cause. He tried to apologize using the universal language of touch and completely missed the mark. Rather than understanding, he provoked a volley of insults.

I was calm when I turned to face the shopper and spoke to her in French, my fifth language. I apologized for my son having stepped on her and explained that he has autism and not only has a language delay but does not speak French. I told her my son didn’t mean to offend her by touching her but rather, had been trying to apologize.

A few years ago, before Ethan developed any language at all, I had tried teaching both of us American Sign Language (ASL). He never quite got the sign for “sorry” and would rub his fist on the other person’s chest instead of his own. Over the years I’ve managed to persuade him to avoid touching people’s chests. For that, I was extremely grateful that day at the supermarket. At least the police were not called.

Ethan at supermarket

Although the woman’s facial expression remained set and dark after my explanation, she did at least stop her yelling thus allowing us to complete making our purchases.

As soon as I had shepherded my sons outside the door, I switched into parenting for the benefit of those around me. I made sure all the people passing by heard me tell my son to ask to be excused rather than walking into people. I continued in my microphone voice to tell him not to touch strangers since some of them don’t like being touched. (I had to make sure they all knew he was well brought-up!)

I pulled out of the parking lot feeling anger, regret and worry. I regretted having put on a performance for the benefit of complete strangers, many of whom would probably continue to judge my family anyway. I was angry at the woman. How dare she question my child’s upbringing! Has she any idea how much deliberation, research, soul-searching, sleepless nights and even money go into raising a child with special needs?

I even found myself wondering if the woman would have been as angry and judgmental if, a blond, blue-eyed boy had stepped on her foot and then touched her. What role did the fact that a tall black kid had done it instead? What did the future hold for us when Ethan became a tall black, teenage boy with autism in our neighborhood?

It’s been a few months since the supermarket incident, but it definitely left an impression on Ethan and me. Ethan remembers the incident as being funny. He always laughs when he recalls the incident in bouts peppered with “the lady’s foot,” “French gibberish” and “Madame,” the first word I said to the woman. More importantly, it taught him in a rather dramatic way, the consequences of not asking to be excused when one walks past people and accidentally steps on their feet. It achieved in a few minutes what years of my theoretical lessons had failed.

As for me, I laugh at the absurdity of trying to parent for the benefit of complete strangers. What was I thinking? At least I know I will get a chance to redeem myself in the future because the judgmental looks, whispers and reproaches happen far too frequently.

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