Autism is a terrible word.
It doesn’t roll off the tongue, it’s uncomfortable to say – both for the sound and the definition. And it affects so many, almost everyone knows someone with autism, either a family member or friend. And it’s getting worse. My son Shawn has autism. It sucks. Not only because of how he has to live his life, but for how it affects the entire family.
The Night of Too Many Stars is a benefit show that has attracted incredible celebrities and comedy stars to perform to raise money. Stars like Louis CK, Jim Gaffigan, Jon Bon Jovi, Steve Carell, Paul Rudd, Sarah Silverman, Chris Rock, Steve Buscemi, Bill Burr, Amy Schumer, Jon Stewart and so many more all come out to raise money to support families with autism. Since 2006, Night of Too many Stars has raised over $18 million, giving children and adults with autism the chance they deserve to learn, to contribute and to live the fullest lives possible. It exists to help families just like us, who need help but don’t know where to find it.
Night of Too Many Stars exists because comedian, writer, and actor Robert Smigel and his wife were unable to find resources to help them help their son who is autistic. Robert Smigel’s son is now 17, my son Shawn is 19. For these kids there was no early intervention program, no special schools, no socialization programs. As a family all we could do was watch helplessly and wonder if we would ever live anywhere near a normal life. When Shawn was diagnosed, autism was thought to mean rocking, no touching, no eye contact, and no speech. Shawn talked, he just talked late and had the “minimum” words he needed to get by. He looked us in the eye, he loved hugging and kissing and could follow kids at the playground. So as far as our doctor was concerned, he was fine just a late bloomer. He was our first, so we had no idea that he was different. I worked from home when he was little, so I didn’t see a difference between Shawn and other kids his age. So he didn’t get the help he needed early.
As he got older, he started freaking out in stores. He was so anxious all the time, he couldn’t sit in a
restaurant and wait. He’d rather play alone than with other kids, and was fine swinging on a swing or going down the slide with his Dad. Even education and medical professionals didn’t understand. When he was 4 I took him to the YMCA pre-school. On the first day, he got anxious and the teacher took him in a corner and held him down by his arms and legs while another teacher read a story. He freaked out and we were told he was too violent to be in the class. I never took him back. When we went to get his hearing checked because of his speech delay, we were told by the technician there’s something “wrong” because he won’t sit still so she couldn’t do the test. No one knew how to recognize what autism really is.
Shopping, going out to dinner or a movie, or taking a vacation was impossible and life eventually became dark and sad for everyone. There was no such thing as day care or after school care for Shawn, so my husband Mike had to quit work to stay home with him. Our lives changed in a big way then – we were suddenly a one income family. When Shawn’s sister Lauren was born, we were living a solitary life – alone, nowhere to go as a family. We had to start living separate lives just to give his sister some semblance of a normal existence.
The Night of Too Many Stars supports an organization called New York Collaborates for Autism. It helps families just like us, who need help but don’t know where to find it. The show/telethon raises money for lots of organizations within NYCA that help with life challenges. There are pre-school and after school programs. That would have made such a difference for us. There are programs that get the kids together to learn social skills by playing board games, group games at community centers, and things that help with everyday “life” like going to a restaurant, ordering at McDonald’s, and even getting a haircut, which is a major issue for kids with autism.
Shawn loves music, and has always liked singing. He loves to see his sister (the future Broadway diva) in musicals. But we always have to sit him way in the back and away from people because he makes noises, he talks, he even may sing along if he knows the songs. The NYCA supports something called the Theater Development Initiative, which works with Broadway productions to create “autism-friendly” performances. They’ve done Aladdin, Spider-Man, Lion King, and a lot of others. In those shows, there are no sudden loud noises, the lighting is more subtle, and areas are provided for kids to “chill out” if they become overly stimulated. They provide education materials and social stories to read and use in advance to prepare the kids for the show. Most important, nobody will get annoyed if your kid is being “himself” and standing, making noises, “stimming” with their hands and dancing. It’s something I hope we can do someday.
All of these programs, and so many more, helps families reach some level of “normal”, which is a VERY positive thing. Because of Shawn’s participation in these types of programs, we can now go to dinner whenever we want. He’ll even go grocery shopping. He does so well in haircuts that his teacher uses him as an example for other kids. Best of all, we can go on vacation. He loves Disney World more than anything and those trips we take there are so positive for him. He communicates with strangers, he participates in the world around him. Yes, we’ve had struggles. He has had overstimulation meltdowns where he has plopped down in the middle of a walkway and started yelling NO because he didn’t want to leave Tomorrowland. But we’ve learned how to deal with that, thanks to autism support programs. Just the fact that we can take the vacation is a miracle for us.
Marriages have broken up because of the strain of caring for a kid with autism. Fathers are especially hit hard when they realize they might have that boy to play ball and hang out and drink a beer with someday. In our case, Shawn is lucky that he has a father who is devoted to him and gives him whatever time he needs. Some of these programs can keep the families together, or fill in that gap for the kids who are being raised by a single parent.
So if you can give something, you’re not only helping kids with autism, you’re helping their siblings and their parents, too. Thank you, for Shawn all the kids like Shawn, their families and those who care for them. You’re helping them all live a better life.