When a child is diagnosed with autism, parents often feel a wide range of emotions from relief to despair and everything in between. These are all normal. Learning your child will struggle his/her entire life to do things most people take for granted is not only frightening, but heartbreaking.
As parents, we want to see our children happy—we don’t want them to struggle. Autism is a gift for certain people, but for many others, it’s also—and mainly—a lifelong disability.
Some autistic children will grow up into independent adults who can communicate and live on their own. I’m one of them. But I’m also the mother of a severely autistic child. I see both sides of the spectrum every day. I personally live with the struggle of a disability that’s often ignored because it’s not obvious, and I’m fighting each day to take care of my child whose struggles are severe.
Many autistic children will never grow up to live on their own, learn to communicate, or get dressed, and they’ll need someone to care for them for the rest of their lives. In those instances, parents become caregivers who dedicate their lives to their children.
If you’re the neurotypical parent of an autistic child and speak about your child’s autism online, you’ve probably been told by autistic adults that you need to “listen to autistic adults” because they are the ones living with autism. They’re right to a certain extent. You should listen to autistic adults, but not only. Autism affects the whole family unit, so it’s important to listen to parents too.
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It’s important to listen to parents, like my mom, so you can hear her perspective on what it was like raising a child with high-functioning autism—her struggles but also her joy. It’s also important to listen to parents of severely autistic children—those who can’t advocate for themselves on social media. There are many autistic children and adults with no voice of their own who need someone to advocate for them. I don’t think there is a better person for this role than the one who cares for them 24/7.
I want to hear from parents. I want to hear from the mother who’s never heard “mom” from her 10-year-old son. I want to hear from the dad who will never get to watch his son play football or anything like it. I want to hear from the grandmother who longs to play Candy Land with her granddaughter. I want to hear the success stories of parents who fought for their children and succeeded, no matter how small.
I want to hear the story of the autistic child who was able to get a haircut without tears or screams. I want to hear the tale of the autistic girl who learned to tie her shoes as a teenager. I want to hear it all. All voices and stories are equally important in the autism discussion.
And when listening to autistic adults, it’s also important to remember there isn’t one single autistic voice. Just like with neurotypical people, we’re each our own person with unique views and feelings. Sharing a diagnosis doesn’t mean we all understand what every autistic person is going through. The spectrum is too broad. Each autistic is an expert on their own autism, and that’s it.
Parents of autistic children can offer a perspective that’s important to the discussion. They know their children. Sharing struggles we all go through as parents help us feel less alone. It helps us feel supported and connected on this journey that can be so lonely. We need to work together to raise awareness, to be compassionate, and to hear each other’s stories.
This article was featured in Issue 102 – Supporting ASD Needs Everyday