This post originally appeared on the blog Panda Speech.
As a mother of a child diagnosed with Asperger’s Syndrome,* I see first hand how difficult simple daily tasks and routines can be at times. I also get the pleasure of watching my child grow and learn in his own inspiring, unique way. I have sought out professional advice, have taken him to countless therapies, and have worked hard every day to help him adapt to the world around him. My son struggles the most with sensory input,* repetitive interests,* and social skills.
*Asperger’s Syndrome is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction and nonverbal communication, alongside restricted and repetitive patterns of behavior and interests. Source: DSM IV. Asperger’s Syndrome was taken out of the DSM-5 (diagnostic criteria manual) and replaced with a general Autism Spectrum Disorder diagnosis (ASD). My son was diagnosed at seven years old. He has received therapy since three years of age due to his sensory struggles (occupational therapy and therapeutic horse riding).
*Sensory Input: My son’s body has a hard time regulating sensory input, which results in extreme reactions. He struggles with background noise that most people ignore, he doesn’t liked to be hugged or touched, he struggles with bright lights, he doesn’t like getting his hands dirty, tags & seams in clothing hurt him, etc…
*Repetitive interests: An intense preoccupation with one thing, which can interfere with daily routines.
My son and I are very close. We talk daily about social situations and how to respond or react (we do social skills lessons in the car on the way to school almost every day). He has a difficult time understanding sarcasm, figurative language, harmless teasing, and body language. He is a very literal thinker! He will often ask me about stuff like this and I will tell him how to interpret it. He has become more independent and aware now that he is older (he also attended a social group for over a year). I also explain that EVERYBODY has some kind of sensory issues and it is okay (I can’t stand some food textures and my husband can’t stand the sound of chewing). I work with him on how to cope and deal with the uncomfortable-ness (to reduce the extreme reactions like crying or screaming).
His therapists have been working with him on different strategies to deal with sensory struggles and social situations at school and home. When he told me about them, it inspired me to ask him some questions to see what it’s really like for him on a daily basis. I asked him questions relating to sensory, social, and repetitive interests. Please note: he approved this post!!!
Question: Can you tell me what Asperger’s is?
Response: It’s just something that makes it hard for me to understand other people and I have a hard time with sounds and stuff. My brain works differently than other kids.
QUESTIONS ABOUT SENSORY ISSUES
Question: Can you describe what it is like when you cover your ears and shake when someone is cutting their food (knife on plate) at dinner time?
Response: When I hear that noise, it feels like a lightning bolt is zapping my brain. I know it is rude to put my fingers in my ears at dinner, but it’s just terrible.
Question: Are there any other sounds that bother you this much?
Response: At lunchtime at school, it feels the same (lightning bolts) when people drag their tray down the lunch line. I ask them: “Do you hear that? Doesn’t it bother you?” They always say no and look at me weird. I lift my tray up the whole time!
Sometimes in class, the sound of the pencil scratching on the paper overwhelms me and I have to stop writing. It helps when I put another piece of paper under it. I wish I could ask everyone in the class to put another piece of paper under theirs, too.
Some days the lights in my classroom make a loud buzzing sound that gets in my brain and stops my thinking. I get in trouble for not doing my work sometimes when this happens.
Question: What other types of things bother you?
Response: Tags in clothes feel like I have a cactus in my pants or shirt. Bright lights feel like my eyes are being burned by the sun. I don’t like being in crowded places. People bump me and it makes me feel nervous.
QUESTIONS ABOUT SOCIAL ISSUES/FRIENDSHIPS
Question: What do you like to do at recess?
Response: I like to walk around the playground.
Question: Do you play with other kids?
Response: I usually walk by myself, I sometimes play knock out, because I am really good at knock out and usually win.
Question: Why don’t you play with the other kids?
Response: Mom, other kids just play together. I don’t know how they do it.
Question: Why not ask them to play?
Response: Kids don’t go around saying “Do you want to play” to each other. They just do it. It just feels weird for me to ask someone to play.
Question: What is the hardest part about making friends at school?
Response: I don’t get jokes or sarcasm, Mom. You know that. Kids at school are always joking and I don’t know what is serious or what is a joke. I also get in trouble because kids laugh at me during class.
Question: Why do they laugh at you?
Response: I don’t know. They say that I am “hilarious” but I am just doing and saying normal things. I have to ask them to please stop laughing because I might get an orange note if they don’t (behavior note). I am really getting sick of it.
Question: I noticed some of your classmates said hi to you at your brother’s basketball game. Why didn’t you look up at them and say hi?
Response: I wasn’t expecting to see them at MY brother’s game. It overwhelmed me. I didn’t know what to say or do because it was unexpected.
QUESTIONS ABOUT REPETITIVE INTERESTS
Question: You like to count a lot. Can you tell me about that?
Response: I am counting things about 40% of the day, which is better than it used to be. I used to count 50% of the day. I like to count things. It is fun.
Question: Give me some examples of things you like to count.
Response: I had 12 lima beans last night in my veggies at dinner. I usually average about five lima beans, so last night was great. (He really likes lima beans.)
I like to calculate how many minutes per question on tests so I can make sure I am not taking too long. If I take too long on one question, I will re-calculate.
I count how many times Fannie (our dog) licks me every day. Yesterday it was 115.
I know by math that you hogged the popcorn the other night. (I asked how he knew that). I average 105 bites per bowl and the other night I only got 75 bites, proving that you hogged it.
Did you know that one finger is 20% of your fingers on one hand and 10% of your fingers if you are counting both.
I just like counting. I am working on not counting things because you told me it clogs up my brain and distracts me from paying attention at school.
My son is truly a joy to my life and I am very proud of him for sharing this information. He may struggle with some things but he also excels in so many other things. He loves science and math — and he reads on an accelerated level. He even wrote a poem in the 4th grade that made it to the state level in an art competition. He is a high level belt in Tae Kwon Do and is also very active in Cub Scouts.
I wanted to share this interview to give parents, educators, and therapists an idea of what it is like from a student’s perspective. Please keep in mind that every student will have their own strengths and weaknesses (diagnosis or not!). Students with Asperger’s are often misunderstood by adults and peers and I was hoping to shed a little more light and to raise awareness. As a parent, I work so hard to provide him with the love and support that he needs to become as independent as he can. I see great things for his future. He wants to be a geologist or an engineer!
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**Note: Mandi is a Speech Language Pathologist sharing this post as a mother of a child diagnosed with ASD. She is NOT sharing this to give any professional opinions or advice.