One in 36 children in the United States is diagnosed with Autism Spectrum Disorder, based on 2020 survey data from the Centers for Disease Control and Prevention (CDC).
Autism is a developmental disability caused by differences in the brain. Because this definition is rather broad, the severity of symptoms and how they manifest can vary on a wide spectrum. Individuals diagnosed with autism may behave, communicate, interact, and learn in ways that are different from others.
However, for all the differences that set them apart, children diagnosed with autism are still children. They smile, they laugh, they have their likes and dislikes, and they love just like anybody else – nothing there makes them any different from other kids.
“I think too often when people see kids with autism, or don’t hear them talk, they take the mindset of ‘they can’t think and act like me’ and attribute it to that disability,” said Ryan Lamping, a Business Development Director on our Educational Services team. “I wish more people knew that autism is just a different way to communicate.”
Maddox and Lilly
Ryan’s son Maddox is five years old, and was diagnosed with autism at 18 months when his parents noticed he was regressing in his speech development. According to Ryan, Maddox had a couple of words he would try to say, and then suddenly he stopped altogether. Now, Maddox mainly uses an iPad to communicate, and he knows a few signs in American Sign Language, such as “more,” “please,” and “thank you.”
While the iPad has been a great tool for helping Maddox to communicate and express himself, it can be limiting. As Ryan said, the iPad helps Maddox communicate effectively, but not easily, and misunderstandings can create frustration.
Greg Steiner, Regional Vice President of the West Region, shared that his 13-year-old daughter Lilly was diagnosed with autism when she was about 20 months old. Lilly was their first child, and at the time they noticed that she seemed to be developing at a slower rate compared to their nephew, who was about a year older than her. Lilly was later diagnosed with epilepsy and gastrointestinal complications. These secondary diagnoses can be commonplace for children diagnosed with autism, and Greg said parents should be aware of this possibility.
“Lilly will live with us forever,” said Greg. “She can walk around for the most part. We bring a wheelchair though if we go anywhere in case she gets tired. She was nonverbal for a long time but she occasionally talks now.”
But again, for everything that sets her apart, Lilly is still one of the happiest girls you’ll ever meet. She loves her younger sister Scarlett and uses her iPad to play games and watch YouTube videos. Lilly also loves her L.O.L. Dolls – of which she has many! Every night at 6 p.m., Lilly turns the downstairs of the Steiner household into a disco dance party. Prior to the COVID-19 pandemic, Lilly loved to swim – a love that Maddox currently shares. Maddox also loves puzzles, books, Legos, and anything Disney – especially Frozen or Toy Story. He even got to go to Disney with his family in early April and had a great time!
Adapting to the Change
To put it simply: When a child (or an individual) is diagnosed with autism, the world doesn’t come to an end, it just changes.
“You grieve the loss of the life you thought you’d have, and the loss of what you maybe hoped for your kids,” said Greg. “But then you get to a point where you make peace with it. It doesn’t mean that it can’t be this remarkable life for us, for her, for everybody. Lilly’s happy, she didn’t have these pre-conceived notions of what her life was going to be.”
Ryan shared Greg’s sentiment; he said: “Over time I think we really wrapped our arms around the fact that this is our life, this is Maddox’s life. It does look different but it’s a life nonetheless and we can make it fun and fruitful. Some days can be struggles but who doesn’t have tough days?”
Anyone diagnosed with autism, or who has a loved one or someone they know diagnosed with autism, understands that unique challenges arise as a result. There are often behavioral complications associated with autism; sometimes individuals have physical reactions to stimuli, negative or positive, that can result in injury. Caring for individuals diagnosed with autism takes a substantial amount of patience and adaptability.
“My whole life, all I wanted was to be a dad,” said Greg. “The thing that helped me make some peace with our new reality is that now I get to be a dad for much longer.”
The Significance of Support Systems
Having a strong support system in place can make a world of difference – both for the diagnosed individual and for their families. But sometimes establishing a support system is easier said than done; allowing others to help care for your loved ones can be difficult – especially when it comes to children.
“You have to strengthen your circle and trust them. Have fewer people in your life, but trust them dramatically more,” Greg admitted that he and his wife struggled with this when Lilly was diagnosed. “Let people in earlier so it’s easier for the child, and that person becomes part of their everyday life. We hung onto everything so hard that now when we bring people in it’s a dramatic change for Lilly.”
Having a routine in place can also be helpful; oftentimes children diagnosed with autism have very regimented personalities, so having a structure in place helps them thrive. Ryan shared that he and his wife are currently discussing whether they want to send Maddox to kindergarten at a public school or keep him in his autism-based school.
“We’re probably leaning towards keeping him where he is for this year for the smoothest possible transition,” said Ryan. “Something as small as that routine change can mean the difference between his behaviors increasing or not. When he gets comfortable with something, he can adapt way better.”
Whether your support system is based around school or family members and loved ones, it’s important that everyone involved understands what autism is, how it can manifest at the individual level, and what specifically they can do to support that individual and the family. For those who haven’t experienced autism first-hand, having that understanding can be difficult.
This is why it is so important to increase awareness around autism and celebrate recognition such as Autism Awareness Month. Increased awareness for this disability will help individuals understand more about it, and give them an outlet to educate themselves on it – not just during Autism Awareness Month, but all year long. (You can find additional information and resources on autism and Autism Awareness Month in the latest edition of the D&I Newsletter).
The Best Way to Be There
Having increased education and awareness around autism allows individuals to understand more about how they can be helpful. Sometimes the best thing people can do to support family members of children diagnosed with autism can be summed up in two words: “I’m here.”
“I think being a special needs parent defines us a lot more than anything else. So I think we need those moments where we’re not that,” said Greg. “If we want advice, we ask for it. But just be there for people – be unassuming and don’t try to fix anything. We want time to just be us.”
As human beings we want to be empathetic and helpful – and the way we show that sometimes is by commenting on what the other person is going through. To Greg’s point, sometimes the best thing we can do to support those we care about is to just be present and enjoy being in the moment with them.
Children diagnosed with autism at their core are truly no different from those who are not. With a loving support system in place for them and their families, they can succeed and thrive just like anyone else.
“There are some incredible stories about kids and adults [diagnosed with autism] who are super successful in life and in the workforce. They operate a little differently, but that doesn’t mean they can’t be just as successful if not more so,” said Ryan. “I’ve learned far more from Maddox than I think he’ll ever learn from me. I didn’t know autism before him, but he’s the happiest kid alive.”
“I would say autism is beautiful. I think Lilly sees things almost like a more evolved human; she looks at things so much more simplistically. She doesn’t have the jealousy, she doesn’t have the things that handcuff typically-developing humans,” said Greg. “I really think that Lilly was made this way, she’s one of the most beautiful humans you’ll ever meet.”