Autism affects approximately 1 in 59 U.S. children. According to advocacy organization Autism Speaks, autism is characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. It has many subtypes; it’s a spectrum disorder, which means each child with autism has different strengths and challenges. Some kids are severely challenged and need significant support; others aren’t. But one thing is universal: They want to be treated just like everyone else.
Nancy Marin’s 16-year-old son, Isaac, was 2 when he was diagnosed with autism. His speech was delayed, and he began head-banging, she says.
“He would get upset and start banging his head on things. He would take toys and flip them upside down, and he would spin the wheels rather than play with a car,” she recalls. “Around Hanukkah, we noticed that he was just fascinated with spinning the dreidel.”
He began receiving services through early intervention, and remained at home until he was 10 years old. Eventually, however, it became unsustainable for his parents to care for him alone, as he grew larger and began biting and hair-pulling; they also had another child, a daughter, to consider. The family decided to place him at The May Institute, a residential program in Randolph that specializes in autism.
“They provide 24-hour consistent care, they’re very loving and they really are very thoughtful about the therapies he has. And, because it’s a school dedicated to autism, they’re able to have the tools necessary to adapt very, very quickly to what his needs are,” Marin says. “The unfortunate thing is that it’s better to miss your child than to be scared of your child.”
Today, Isaac is a happy teenager. His family visits him weekly and receives daily updates about his progress. It’s also important to the family that he get to socialize with family and friends.
Marin, along with Beth Segal, assistant clinical director at the May Center School for Autism and Developmental Disabilities, offer tips for including autistic kids in family outings, friend celebrations and social events so that everyone feels comfortable and welcome.
Anticipate wants and needs. When Isaac comes home, Marin is sure to stock his favorite food (tortellini) and ensures that his favorite toys are charged and close at hand (iPad, bubbles, videos). Do the same if you plan to host a family whose child has autism: Ask about preferred toys and food, and even labels. “Sometimes children with autism do have very specific food requests or food preferences, or only like certain brands,” says Segal.
Ask your friends what the ground rules need to be for each event. For instance, Marin asks friends to minimize noise because it tends to trigger Isaac.
Don’t be shy about tailoring activities to the autistic child. “Take Passover: It can literally be a four-hour affair, right? So, you’re sitting there, and you’re going through the Haggadah, you’re trying to get through everything, and you have this kid who doesn’t understand what’s going on,” Marin says. “They may be non-verbal, they may have violent tendencies and they’re already overwhelmed by being in a place that is going to be noisy. So, we have a very abbreviated seder.”
When it’s over, it’s over. “We have a very strict and fast rule that if he needs to leave, he leaves. There’s no hard feelings about it. If it’s a 15-minute visit, then it’s a 15-minute visit,” Marin says. Think quality over quantity. “It’s not about trying to cram as many traditions in as possible,” she says. “When it’s over, it’s over. Hard feelings have to be secondary to whatever’s happening with your child.” If your pals need to leave, give them a break. It’s not personal. (Also, the autistic child might only be prepared to stay for a certain portion; they rely on this game plan, so it’s important to stick to it.)
Take the initiative with interpersonal interactions. Ask how you can be helpful to the family, says Segal. “Every kid with autism is going to react differently in different situations, and families know their child best. That family is going to be able to provide you with a lot of guidance around how you can be helpful to them, and specific ways about what is going to be helpful and not helpful, and also just around expectations about what things you might see.” For example, ask about preferred types of greetings: Does the child prefer not to hug, even if it’s culturally normative for their family? Do they prefer to wave?
Offer up private, quiet spaces. If a child does get triggered during an event, it’s helpful for the family to have decompression space to help them calm down. Set aside a designated quiet place for that reason. Also ask about safety concerns, such as candles or electrical outlets, and prepare your home accordingly before the visit.
Simply be there, even if things go awry. “Everyone sometimes has a bad day. Sometimes a family event or a play date might not go the way you wanted it to go. But I think that coming back and telling the family, ‘Hey, it’s OK! I’m still here. You’re still important to me, and I still want to be involved. How can we make things better for next time?’ is so important,” says Segal. “Often families either stop [socializing] because it didn’t go well last time, or they’re just not being invited. And so I think saying things to them like, ‘Hey, I know it might be hard for you to come, but we’d love to have you. How can we make it work?’ is key,” she says.