By Katie Weisman, SafeMinds Board Member
So, it’s Autism Awareness Month again. Hmmm….
Facebook is abuzz with posts about autism awareness. Buildings are lighting up in blue to show support for autism, while Twitter is chirping with the hashtags #autism and #awareness. There are hundreds of events around the country celebrating that more and more people know what autism is. Frankly, I think you’d have to be a hermit not to have heard of autism by now. The problem is that nobody seems concerned about how common autism has become.
I’m still waiting for the part where our government and the general public wake up and realize that what was considered a “rare disorder” when my boys were diagnosed 14 years ago, is now affecting children in every neighborhood in America.
Actually, in my neighborhood, counting my boys, there are eight kids on the spectrum. Eight children! And only one is high-functioning enough that you wouldn’t immediately know he’s on the spectrum. The general disregard for the increased numbers of people with autism baffles me. It is, as my son Don would say, an “Epic Fail! “
So even if we can’t get others interested in why there’s an increase in autism prevalence, I thought I should write the truth about what our families need, so that those who do care can really help. This is my list, but please add your thoughts in the comment section below and share this on social media so that other families affected by autism can chime in about what helps them the most. And make sure it gets to your friends and families so that our support networks are activated.
What does the family of someone significantly impacted by autism wish for?
1) Our children with autism need friends – There are no two ways about it. Our kids don’t have the friends that they need and deserve. As parents with children older than five or six, it is really uncomfortable for us to ask other parents for playdates, knowing that initially our kids will probably ignore your kids or may not have the attention to complete an activity. Our kids are kind, naïve, and often have great, if quirky, senses of humor. Can you please ask us to get together – and keep asking – and keep asking? Can you please invite our kids to parties or movies or whatever? It takes time for our kids to feel comfortable with others and this gets harder and harder as the kids get older. And once our kids age out of school at 21, they may lose what friends they had, as those friends go off to college – so please stay in touch!
2) Our older children with autism need employment – Stop and really think about this. Parents worry enough about what their typical kids will do to earn a living in a tough economy. Now imagine how scary it is to be the parent of a young adult with autism who is minimally verbal, obsesses about routines, and takes time to learn new skills. Finding even part-time employment is challenging. If you own a business, look for the jobs you need to fill that might work for someone on the spectrum and reach out to families. If you have a friend with a business, reach out and connect them to local parents. If you’re just looking for some help, hire our kids to walk your dog, or water your plants, or shovel your driveway. Our kids are reliable, can be extremely focused, and don’t engage in personal drama. You may find that they become your favorite employees. But you won’t know until you try.
3) Our children with autism need to learn new skills – Offer to be a mentor or teach someone with autism a skill. Many of our kids have personal strengths and specific interests and they learn best by seeing something done. Reach out to your local schools and agencies and offer your time and expertise. Maybe you are a train conductor or a meteorologist or you work with computers or you are a professional musician. Helping someone with autism get a start in a field that they love may be the most rewarding thing you’ve ever done.
4) Families affected by autism also need money and time – There may be local families you know who you suspect are struggling financially. You are probably right. Medical, educational, and recreational costs for children with autism can be overwhelming. Often, only one parent can work and the other has to either work less or give up their job to be available for their child’s needs. Single parents have kids with autism, too. Think about anonymously making a collection to fund something they need – food for a special diet, gas to visit the specialist three hours away, or extra help with homework. Offer to do something fun with the kids and give the parents a gift certificate for a local restaurant. A one-time gesture of kindness goes a long way. Or you could even help set up a regular recreation program in your town that provides volunteer support for people with disabilities. Many existing recreation programs are too expensive for families affected by autism to afford, or require the parents to drive their kids further than they can fit into their schedule. Or find a way to help provide transportation if a family doesn’t have the resources to access programs that are available.
5) Our kids and adults with autism need volunteer opportunities – Help find ways for people with autism to volunteer in your communities. It is a win-win for everyone. Many community groups always need more help and many people with autism need opportunities to be out and socialize with others. Whether it’s blowing up balloons for an event, planting flowers to beautify your town, working in a soup kitchen, or packing boxes for our troops, giving back to others is a wonderful way to gain self-confidence and build lasting friendships. Find ways to be truly inclusive by inviting people with autism to volunteer with you.
We’d like this to be an ongoing dialogue. Please share your thoughts, your children’s needs, your family’s needs, and any great ideas that have worked in your community.
I truly hope that someday there will be no need for Autism Awareness Month and that we can all just “be” – members of communities all supporting each other.
Katie Weisman is the mother of identical triplet boys who all have autism. After a career as a technical designer, she is now a full-time mom and autism advocate. All three of Katie’s sons have mercury poisoning, which she believes is the primary cause of their disability. She chairs the SafeMinds Government Affairs Committee and sits on the Research/Environmental Committee. She lives in Mount Kisco, New York with her husband, Doug, and her three wonderful sons.
