Wednesday, October 10, 2012

How To Address Parental Fears About Autism

Brenda Rothman

Parents of autistic children are exposed to fears about their children way too early and too often. We hear fears about cognitive ability, fitting in, relationships, bullying, adulthood, job opportunities, independence, financial support, catching up. What we read on the internet scares us. What we read in the paper scares us. What service providers, teachers, and well-meaning people tell us scares us.

Sometimes we get stuck in fear and we can't find a way out. Our brains are wired to produce more connections to the areas we use more. So the more time we spend stuck in fear around our children and their futures, the more connections we build, the stronger those areas become. We build more neural roads between our synapses of autism and fear. We get stuck on those roads.

Autistic children and adults have valid and genuine challenges. And parents need to address those.  But we cannot solve all the future challenges that may happen ... or may not happen. If we spend our energy worrying about all those possibilities, we lose the energy and creativity to solve the problems of right now.

How do we move away from those fears?

1. Is it happening right now?
This thing that I'm worrying about for my child, is it occurring today? Or is it something I'm afraid of for the future? Is it about whether they'll be able to live independently, how they'll financially support themselves, what kind of job they'll have, whether they'll be able to hold a job, whether they'll be bullied, whether they'll have friends or important relationships, where they'll live, whether they'll be happy? All those things are in the future. We can imagine all sorts of scenarios. We can work on those stories for hours. But they are pure fiction. If it's not happening right now, it's just a story, a story that hurts.

If it is something happening right now, congratulations. You can do something right now. Work on a balancing exercise so that fear doesn't grip you. Talk to other people to vent your feelings. Seek advice for this specific challenge. Find out if it's a real concern or if an adjustment to our understanding of autism is needed. Create a plan, listen to other explanations, and take some steps.

2. Is the thing we're worried about certain to happen?

If our fears are about the future, can we know with certainty that they will happen? It might happen.  It might not. Can we know for sure? We can't. So what does it mean that we're using our precious time and energy on them right now? How do those stories make us feel? Does that make us more empowered or less?

3. Do you have any support, any happiness right now?

Right now, where you are, the way you are, the way your child is, take a minute to think about you, about your environment. Do you have things you're taking for granted? Do you have blessings surrounding you right now? Do you have family, friends, teachers supporting you and your child? Do you have the basics to sustain life? Do you have the beauty of nature, connections to people, the feeling of love? Really think about these things. Feel the supports. Acknowledge the blessings. They aren't meaningless affirmations. Appreciating what we have right now, in our hands, under our feet, right in front of us, is doing the hard work, the necessary work, of providing for ourselves and our children. Being our own best friend and modeling perspective is critical.

4. Can I be here, present and available, for my child when I'm worried about the future?

Your children need your attention right now. They can't tell you what the future will hold. You can't know. No one knows. But what we do know is that you have limited time and energy, your child has limited time and energy, for this day right here and now. Use what you have to focus on what your child needs now, what you need now. Use your energies to create moments of joy right now.  This moment is your first priority.

6. Will my child's life be sad if I don't worry about these problems now?

Ah, so there's the real fear. "I'm afraid that my child's life will be sad." Will it? That's the kind of thought that we need to sit with and reflect upon.

7. Are those kinds of people -- autistic persons -- sad?

What we're really thinking then is "disabled people like that have sad lives." "Autistic people like that are sad people." Are those scenes that we're imagining for our child making us feel sad? Do we think our child will have a sad life?

Okay, let's start there. Do all disabled people have sad lives? Are autistic people sad people? Do you really think that? Are they? Every last one of them? Autistic people are people first. Just like you and me. I've had some tough situations, but I'm not sad. Lots of people have challenges, genuine challenges, and they aren't leading sad lives. Autistic people are people. They come in all shapes and sizes. They aren't all sad. Some of them might be. Some might be happy. Some might have moments of sadness. But if you really think all autistic people are sad, let's go meet some. And listen some more.  Some of them are downright bouncy.

So maybe you think only certain autistic people are sad because they're non-verbal, unemployed, living with parents, in a group home, don't have a job, or have a part-time or low-income job? Do you think that's sad? Why? Do you think it's possible they could be all those things and be happy? Is it possible those could actually be good things? Like never having to pay rent? Never having to answer a boss? Not having so much clutter? Being free from a high-stress lifestyle? Having lots of time to devote to outside interests? I mean, it's different from what you experienced, but is it a given that it's sad? 

What if instead you thought autistics' lives are happy? Would you be better able to help your child?  Would you be focusing on the things that make him happy? Would he have a foundation of happiness to build the rest of his life on? Would that help you be a better parent?

8. Who is your child right now?

Let's really look at them right now. They're a kid. In the midst of childhood and all those playful, messy moments of childhood. They love their family. They love their pets. They get lost in the things they enjoy, like no one else can. They are supported by many people. They don't care about conforming to narrow minds. They are real mischief-makers. They're really, really good at being themselves. They are happy.


Part of the culture around autism is that we parents should worry about our children.  If we want to  be responsible autism parents, then we have to take all the fearful possibilities into account. That's our job. And if we're not afraid of the future, we're avoiding the reality of autism. I'd like you to question that assumption. I'd like you to notice what's in front of you right now, to uncover the root beliefs that cause us fear, and to see the joy that's available to us.

A version of this essay was previously published at