He replied, “No! She looks like a rat!”
I ran away before he could see my tears, with Wet ‘N Wild mascara streaming down my face, no doubt.
Now I am a mother of a 12-year-old girl who is on the autism spectrum. She is what some might call high-functioning: She is verbal, can read and write and is starting to progress in many areas. But she also has many challenges to overcome.
Next year she will begin middle school. I cringe thinking about what that will be like for her. And it made me wonder how kids with autism can navigate the strange, new world the tween years. Here are some key things to think about, based on my maternal experience.
Having autism can make it more challenging to establish friendships. I’ve seen my daughter struggle for years, but she understands the value of relationships. She wants to have friends—she just doesn’t always know how to go about it, and that breaks my heart.
This school year she has blossomed. Instead of being afraid to say hi or make eye contact with others, she is now doing both. She still experiences anxiety—every time we have a sleepover for her birthday with a few friends, she barely makes a peep—but just wanting to do the sleepover is a win for me. Tweens on the spectrum can and do make friends, and progress toward friendships will happen as long as the opportunity to develop them is available.
A few years ago, a boy who also has autism decided that he was going to marry my daughter when he grows up. They have been friends since they were toddlers. He’s been planning their future wedding and has it all figured out—where they’re going to live, what he’s going to do for work, how many kids they’re going to have. It’s been a beautiful thing for both families to witness.
We plan to do everything in our power to help make this wedding a reality, though we all acknowledge that we have no idea what the future holds for them. One thing is for sure—having autism does not mean relationships are impossible. My daughter gets those same little feelings that other girls get, and is starting to ask questions. It’s both thrilling and terrifying at the same time. But mostly, it gives me hope. When I started this journey with her, I never imagined we’d be talking about boys.
Because hormones are raging at this age, girls on the spectrum might exhibit new behaviors, or a more severe version of their existing behaviors. The tantrums or meltdowns might become more frequent or unpredictable, or in many cases, violent or self-injurious. They might start stuttering, have more repetitive behaviors and become more withdrawn or aggressive. They might have high levels of anxiety or depression.
When these things strike in our home, I have found it best to let my daughter ride her way through them. I have to view these behaviors as a coping mechanism for her—something that calms her and helps her regain control of her world. Unless she is seriously harming herself or others, I have found it is best to walk away, and also pay attention to what might be triggering the meltdown to try preventing it in the future, if possible.
As my daughter is rapidly approaching middle school, I’ve noticed a drastic shift in my views about education. In elementary school, I always felt she was pretty safe. She has a 1:1 aide who helps tremendously, and friends who protect her on the playground. But middle school is different. Will her friends still be there for her? Her aide will stay, but now there will be more of a stigma attached to that, so bullying will most likely occur. How will she handle being bullied? She’s been in a large mainstream class, but next year I want to help her ease into the idea of changing classrooms and teachers, so she will be placed in a smaller, self-contained setting.
I have always asked her how she feels about school, and she’s been able to tell me when things don’t feel right. I plan to do the same in middle school. I am confident she will let me know.
During the tween years, kids have the chance to try many things, especially in school. New experiences aren’t always easy for kids with autism. My daughter has little obsessions, some of which might be considered too immature for her chronological age. But I’ll let her watch “My Little Pony” and collect dolls for as long as she wants. It makes her happy, and she’s become quite the expert.
However, exposing children with autism to new things also fosters more opportunities for social interaction and learning. Last year our daughter played softball on a team with typically developing peers for the first time. I can’t say I loved everything about the experience, but seeing her do something new and outside her comfort zone was rewarding—for us, for her and for everyone involved. Encourage your child try new, even frightening, things—you’ll be surprised how much growth can take place.
Branching out and reaching for independence
This is still a tough one for me. I worry constantly about what might happen if I’m not with her, or if someone else isn’t with her—at all times. Children with autism often don’t know how to advocate for themselves, especially in situations where bad things could happen. My daughter is very trusting of most people. But little by little, I’ve given her opportunities to do things on her own.
We used to wait by the school gate for her aide to get her in the mornings; now she goes in with her brother. And when he is sick, she walks into the school by herself. Progress is happening, though I’m still terrified of the unknown. But the end goal is a high level of independence when she reaches adulthood. Make small, measurable goals for your child, and do everything you can to help her reach them.
The social scene
Social events become more important during the tween years. My daughter wants to be a part of things, and feels sad if she is left out. I try to support her, but I have trouble watching my child, who is outgoing and talkative at home, act scared and silent in a large group of kids her age. Anxiety can be paralyzing. Often, I’d rather not be there, because I don’t like seeing the stark differences in her ability to socialize and have fun. But it is important for her to go. She is learning from the other kids, even if she’s not outwardly expressing it.
As my husband said a few years ago after I went back and forth about sending her to an event she was invited to: “If she wants to go, we will take her.” If she’s willing to be brave, we have to be brave, too. Every social situation is a chance to learn something.
At almost every IEP (Individualized Education Plan) meeting I have with my daughter’s teachers and specialists, I am asked what I want most for her, and in recent years, my answer has been confidence. I want her to believe in herself: In her ability to make friends, try new things, tell others when she feels uncomfortable, stand up for herself when she’s in danger. When others believe in her, when her parents believe in her, that confidence grows. When she is able to do things that other kids do, I see her growing self-esteem beaming in her eyes. These days, she gets upset when she can’t do the same things as her peers. Again, this gives me hope.
I’m 12 years into parenting a child on the autism spectrum. I naively thought that things would get easier once she got a little older, but I am finding that there is never an easy phase of parenting—each age presents new obstacles. But I am up for every challenge that I might face with her, and determined to help others see that autism is just a diagnosis—the child comes first. The sky’s the limit for my daughter.
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