To an Autistic Girl and Her Family, From an Adult on the Spectrum
Someone I met in one of my Facebook groups, upon finding out I have autism, told me that she has a 9-year-old family member, a little girl, who has Asperger’s. She wanted to know what advice I could give to her family and what I might say to the little girl herself. I’ve actually been asked this question before, and I thought I would dedicate a post to it.
It’s hard for me to think what I’d tell a little girl with Asperger’s. See, I’d never even heard of Asperger’s or autism until I was an adult. So at age 9, all I knew was that I didn’t quite fit in at school or anywhere else.
People tend to think kids with autism aren’t interested in making friends. For me, the opposite was true. I was just about obsessed with making new friends. When I was 7, we moved to a new town. My brother and I were staying with our grandparents, and they brought us to visit our parents at the house where we’d be moving to. A group of curious neighborhood kids came wandering over. When I spotted them, I started jumping up and down, screaming, “Kids! Kids! Kids!” I grabbed my grandmother’s hand and pulled her over towards the kids.
In my memory now, I can see the kids looked startled and sort of taken aback, but at the time I didn’t notice the expressions on their faces. I just kept jumping and yelling and waving excitedly as my grandmother asked the kids their names and then introduced them to me. When we eventually moved in, I became part of the neighborhood kids pretty quickly and they were my playmates for many years. Later one of them told my brother that, when they’d first met me, they thought I was “retarded” and they’d been sort of scared.
I mostly played with the younger kids in the neighborhood. There were a few who were my age or older, but socially I was more at the level of the kids who were two or three years younger than me… my younger brother’s age. I didn’t think of them as younger than me at all. At school, I did have friends. In kindergarten, first and second grade, it was all about playing on the playground and it seemed like everyone was friends with everyone else. You could play on the monkey bars or build a sand castle with someone without even knowing their name.
But in third grade, kids were starting to notice who was a little different and who was the most “popular.” Girls were already starting to pay attention to clothes and hair styles. When I was invited to sleepover parties, the other girls spent less time playing, and more time gossiping and dancing to music videos. I wanted no part of it. I still just wanted to play. In my neighborhood I played Barbies and My Little Ponies and pretend games like School and House. I had a few weird “special interests” as well… I was obsessed with orphans and orphanages (I used to watch the movie version of the musical “Oliver” over and over) and “olden days” (I loved the “Little House On The Prairie” books.) I loved playing pretend games that were based on these two subjects. I found one friend who was somehow interested in the same things I was, and we played together constantly.
In third and fourth grade I no longer really played with the other kids besides that one friend, although I was in Brownies and considered the other Brownie girls my friends. I was still invited to their birthday parties and things. But these were the grades in which the kids were starting to notice I was different. I also noticed I was different, but I sort of blamed it on them. I thought the other kids were trying too hard to be cool and act like teenagers, and I was happy just being a kid. I also did some peculiar things that I had no clue were weird. For one thing, I loved to read, almost to the point of obsession. I hated math and science (yes, this goes against the stereotype of people with autism) and had a terrible time sitting through these subjects. So I devised a plan. In the morning I would get a book from the bookshelf, and hide it behind the toilet in our classroom bathroom. When it was time for a subject I didn’t enjoy, I’d get up and go into the bathroom, where I’d sit on the toilet and read. It never occurred to me that the teacher would notice me disappearing for 20 minutes every time math rolled around.
I also amused myself by pouring my Elmer’s Glue on my desk, letting it dry, and then scraping it off with my scissors, because for some reason it was a great sensory feeling for me. If you’ve never scraped dried glue off a desk with scissors, you should try it. But it has to be a thick layer of glue, or else scraping it off the desk will feel more like nails on a chalkboard. But I digress…
Fifth grade was where things got really hard. (Don’t worry, I’m not planning to tell you my entire autobiography… I’m getting to a certain point.) The school district had built a new school, and many of the kids I’d gone to second, third and fourth grade with were transferred to the new school. This included my one best friend who I played Orphans and Olden Days with, as well as my Brownie friends. At the same time, a lot of kids from other schools in the district were transferred to my school. I had been put into what would now be called “Gifted and Talented,” which meant I was in a class for “smart” kids.
Most of the kids in my fifth grade class had come from other schools. They took one look at me and pegged me as a “nerd.” They made fun of me every day. It would have been one thing if they had just ignored and excluded me… that would have been painful enough. But they actively tormented me. A group of them would surround me at recess and start making fun of my clothes, my hair (it was uncontrollably frizzy and wild at the time) and anything I said or did. I had never encountered bullying before. It broke my heart.
Our Brownies troop had also been discontinued, because it would have been Girl Scouts at this point and for some reason there was not enough interest to create a group. So I no longer had that built-in social experience. Keep in mind, I was undiagnosed, and been identified as gifted, so there were no social skills groups or counseling or mentoring or anything else available to me. The teachers seemed to feel sorry for me, but felt it was my fault for not trying harder to fit in.
My mom tried to help me by picking out clothes she thought were fashionable and trying to do my hair, but she, too, grew frustrated with me for not trying harder. I still played with the neighborhood girls after school, but that also irritated my mom because they were younger than me and I “should” have been playing with kids my own age, taking interest in fashion and hair and music and whatever it is girls that age are supposed to find exciting.
At the same time, adolescence was starting to get its icy grip around me, which meant even more heartache and pain. I got yelled at for not wearing a bra. (It was so uncomfortable, plus in my mind, in which I tended to have strict categories for things, a bra was something for an adult or teenager, not for a kid, and I still saw myself as a kid.) I got yelled at for not putting on deodorant. (That also fell into my category of teenager and grown up stuff.) My face was starting to break out in acne. My mom made me wash my face with this horrid smelling orange antibacterial soap. It was so harsh, it dried out my skin, leaving white flakes around my nose that gave the kids something else to make fun of me about. It did not get rid of the acne, though, leaving my mom to comment. “It’s like you make yourself ugly on purpose!”
So you see, it is hard for me to think of what I might tell a 9-year-old girl with Asperger’s, because my own experience sucked. There was one thing that helped me get through fifth and sixth grades. At my school there was a special education class. Most of the kids in the class were younger than me. I don’t know if that was just a coincidence, or if they just didn’t offer special education beyond fourth grade at that school. Somehow or another, a few of the little girls in the special ed class befriended me. I was always alone at recess, either just wandering around or sitting on the concrete reading a book, and one day they just walked up and started talking to me. I remember being a little nervous at first… but then realizing they were not much different from other kids. They were friendly, and playful, and funny. I became somewhat like a big sister to them. I played outside with them every day, helped them stay out of trouble, and defended them from the other kids’ teasing. I loved them.
My parents hated that I had found these new friends. They tried to discourage me from playing with them. They couldn’t come out and say, “You can’t play with the special ed kids,” but they just said things like, “Why don’t you hang out with the girls in your class,” and “Other kids will think you are weird” (which they already did anyway) and “If you spend time with those kids you’ll become more like them.” Maybe they noticed I was like “those kids” in many ways, and they didn’t understand it. One time I gave the girls my phone number and told them they could call me. When one of the girls called while I wasn’t home, my mom took the message. She told me. “If that is one of your special ed friends, don’t call her back. Don’t get that started.”
At school, though, I was encouraged to stay friends with the girls. The teachers thought it was nice that I’d befriended them and that I took care of them and played with them. One of my proudest moments ever came one day in the sixth grade. The school was starting a recycling program, and sixth graders were supposed to go to the other classes around the school and explain the recycling program to them. I offered to go to the special ed class where my friends were. When I walked into their classroom, my friends shouted greetings to me. Their teacher said, “It’s Angel! One of our favorite people!” I was bursting with pride, and I’ve remembered it for the rest of my life.
What would I say to the family of a girl (or any kid, I suppose) with autism or Asperger’s? I might say don’t put too much time and effort into trying to get them to look and act like everyone else. If you work too hard at making an autistic child “indistinguishable from their peers,” you risk turning them into a shadow of themselves. I would ask adults in the child’s family to focus on bringing out the child’s personality and strengths. The most important thing might be to make home and family a haven for the child. As they grow up, they will face situations where they may feel like they don’t fit in or they may be nervous about doing the right thing. Home and family can be a place of true acceptance and love.
Of course you still want to teach your child manners, social skills, and life skills, and don’t just let them do whatever they want. But avoid shaming them for things like stimming, or not participating in the things their peers enjoy. Let them be who they are. Encourage strong relationships with other relatives and family members who are accepting of them. A positive home and family can make a huge difference.
Also, help them find their community, their “tribe.” I still struggle with this as an adult. In my late teens and early twenties, trying to find a place to belong and be accepted led me into all sorts of hazardous situations. Helping your child find their place in the world might involve figuring out their interests and strengths and then running with those. If she loves to read, the local library could be an awesome resource; she could join book clubs, or be a volunteer. This would help her to form more positive relationships, with peers as well as with caring adults.
This may also involve looking outside of her chronological age group. If she is happiest talking with adults, then having an adult mentor through a local organization, having a volunteer job where she can have safe and positive adults around her, or “adopting” an elderly person at a nursing home may be very fulfilling for her. The important part is that she feels like she is part of something and she feels accepted and important.
On the other hand, if she seems to really long for more friendships with kids her own age, then you might want to spend more time helping her find those friendships. There are now play groups and social groups for kids on the autism spectrum. Activities outside of school might also help. If she loves physical activity, joining a gymnastics class can help her make friendships based on that shared interest, putting less focus on the things that are different.
I should also point out that schools are (hopefully, at least) different now. Teachers are more aware of bullying and of ways to make their classrooms safe and accepting environments. Teachers should be focusing on teaching all of the students to be kind and respectful of one another, and to appreciate differences. One of the things I hated most in school was when the teacher said, “Find a partner,” and all of the other kids hurried to be with their friends. I was left standing awkwardly alone, to be placed with whoever else was leftover or to be put into a group of three. Teachers can pre-choose partners and groups based on who might work well together, or encourage kids to meet others by having them randomly choose a shape or bracelet out of a bag and then find others with the same shape or bracelet.
To sum it all up, the most important advice I’d give to parents, teachers, and other family members is to give a child with autism or Asperger’s a place to belong. Help them find their strengths and interests. Build upon their personality instead of trying to get them to tone it down enough to blend in. The best things you can give any kid are a feeling that they are loved and appreciated, that they have a place where they belong, and a positive self image. These gifts can go a long way as they go out into the world.
All that being said, I think I’ve led an awesome life so far, in many ways. My childhood was rougher than it should have been. But because I was used to having to work a little harder than other people in order to accomplish things, and because I was used to dealing with anxiety to get through so many parts of everyday life, I’ve become stronger than many adults I’ve known.
When I was in high school, I still hadn’t been diagnosed with autism, but I’d been put in special education and my mother had been told by the psychologists that they thought I might have “some sort of retardation.” They told my mom I would never learn to drive, never get a job, never go to college, and never live independently. Well, I’ve done all that and more! It took me until I was 23 to get my driver’s license, but now I drive everywhere. It took me until I was 25 to start college, but I got a Bachelor’s degree. Last year I got my first full time teaching job, and moved into my first apartment, where I live alone.
I have a service dog who helps me with some of my social anxiety issues, and I have a kitten I found last fall under a building at work. Animals are one of my special interests, and I volunteer at an awesome rescue farm, where I get to spend time cuddling with goats and geese and pigs and sheep. I’ve gotten to have some cool adventures over the years, such as taking several cross-country trips by Greyhound bus or by Amtrak train (which sounds like torture to many people but it was a lot of fun for me) and spending a year in AmeriCorps working with at-risk children. Whenever I think of something I’d like to do, I do some research and find a way to do it.
So, to the kid with Asperger’s… I don’t really know how valuable my advice is, but after some thought, here is what I would say: This is not something you need to hide, or overcome. You can learn about your Asperger’s and figure out the tools that can help you do your best. You may meet some rude people along the way, but the friends you make will be the “diamonds in the rough,” the really amazing and good-hearted people you’ll feel so lucky to know. You may have some hard times in your future, but you can also have some awesome experiences if you look for them.
Finally, you may sometimes wish you could be an ordinary kid. But what you have is an extraordinary brain, and with it you can lead an extraordinary life. That is something special.
We want to hear your story. Become a Mighty contributor here.
Photo by contributor.