When Anne Cardwell's son Teddy was diagnosed at age 2, she didn't know a lot about autism. She had received some exposure as a psychology major in college but like many parents, Cardwell and her husband, Chris, were shocked.
Cardwell says the toughest part is getting a diagnosis. Even if educators notice something is wrong, they can't legally say what they think the problem is. “If you think something is off, then pursue it yourself. There is nothing to be gained by staying in denial,” she says.
Cardwell took Teddy, now 16, to four doctors, including a neurologist. He was finally diagnosed by a doctor at the North Bay Regional Center in Napa, a resource center for children with special needs. The center was a huge help, she says. Before Teddy was school age, Cardwell was provided with an in-home aide and case workers explained her child's rights.
An autism diagnosis is devastating; parents often go through a grieving process. “You have to deal with that loss, because you'll have that realization you're not going to see Teddy go to prom or get a drivers license,” says Cardwell.
Early intervention can make a difference. “The sooner you can get to the place where you can do something about it, the better,” she says. Some kids make a significant turnaround and can be mainstreamed. Because of the severity of his autism, Teddy was not able to join a regular classroom.
Initially, the plan was to send him to a private school because public schools could not offer what he needed, but things have changed. The Benicia Unified School District does integrate most children with special needs into public schools. Teachers agree that it benefits everyone because it teaches students acceptance, patience and sensitivity. Special education is much different than it was 25 years ago. “The school has taken ownership of these kids," says Cardwell. "There are people out there who can help.”
The level of autism varies greatly. Some children have mild autism while others may be severely affected. Teddy is nonverbal, so he's like a toddler cognitively. He can't communicate his desires or how he feels. “Unless he's showing some obvious symptoms, you're just kind of guessing,” says Cardwell. “That part gets really frustrating.”
It's even more frustrating for Teddy. His teachers work on sign language but the signs are forgotten if not used often. “Usually, if he gets agitated or aggressive it's because he can't communicate effectively," says Cardwell. "If he has to use the bathroom he has to figure out a way to let the teacher know.”
“You're going to have a different and rewarding experience, even though it's crazy, busy and very challenging — some days you wonder how you are going to keep doing it,” she says. “But you'll also get to meet some really amazing people like the teachers that Teddy has had. These are people who are really something special.”
Cardwell recommends that parents connect with others whose children are autistic. “It was really helpful because nobody knows what your world is like.” Groups such as Families for Early Autism Treatment (FEAT) are extremely supportive. Cardwell recommends a book for parents called Just this Side of Normal.
There is a debate over whether autism is increasing or if numbers are higher because of better diagnoses. “I have always felt like it's a little of both,” says Cardwell. “I do think there's been an increase and there must be something in our environment. There's obviously a genetic component, too. I don't think it's well understood.”
There is a sense of urgency about intervention with young children, which fades as they get older. “It's not that we don't try anymore, but the urgency is gone,” says Cardwell. “Now it's almost a relief because we can focus on what makes him happy at home. We do still keep on top of information about autism.”
When Teddy was younger, he was easier to wrangle but now that he is 16 and bigger than his mom, it's a challenge. The Cardwells have two other sons; Patrick, 13, and an 18-month-old. “We're a busy house. Teddy had taken an interest in the baby — they like the same shows.”
Teddy's autism has been a learning experience for the whole family. “My personality pre-Teddy was go-with-the-flow,” says Cardwell. “I had to learn to be way more assertive, more demanding and willing to face conflict with people — to say if I disagree with doctors or teachers. You do have to learn to advocate and stand up for your child. It's made me a better person personally and professionally.”
Cardwell says her son Patrick is very in tune with people for a 13-year-old. “He has to look at Teddy and just read him. It's really helped him,” she says. Even the neighborhood kids are more tolerant and sensitive because of Teddy. Parents have thanked Cardwell for that. “There are a lot of things to thank Teddy for. Not a day goes by that something in our lives isn't different because of autism.”
It's been a challenging journey for the Cardwell family. “Sure, there are plenty of days when we wished he was a regular kid. In the beginning I wished I could wave a magic wand. But now, even if I could, I don't think I would want to change him. Teddy is Teddy. It's a part of who he is and we've accepted him and love him for it.”
Cardwell recalls a poem given to her by a nurse years back. It was about preparing for a trip to Denmark but finding oneself in Italy instead. “You've just got adjust and realize that you're not in Denmark, that you're in Italy and Italy is great, too.”