Since the early 1970s, the Autism Society has been celebrating Autism Awareness Month in April. However, there is still work to be done to clear up a blurry - and often inaccurate - image of a disorder that for decades had gone misdiagnosed and untreated.
One of the biggest misconceptions about autism is that everyone who has the condition is like Dustin Hoffman’s character in “Rain Man,” says Lois Rosenwald, executive director of the Connecticut Autism Spectrum Resource Center (ASRC).
“It’s a huge spectrum; some people are far from ‘Rain Man,’” she says. “Some go to college, live independently, can drive and work.”
Rosenwald says her own son, who was diagnosed 15 years ago with a high-functioning form of autism called Asperger’s syndrome, has since graduated from college and is moving out of mom’s house to start living on his own.
“He’s had a lot of appropriate growth,” she says of her now 30-year-old son. “He’s a great joy to me.”
However, Rosenwald says that she and her son did not get to this point without having to jump over some high hurdles and – even after all the progress from more than a dozen years of treatment – some sadness remains.
“There’s certainly some sadness around certain things,” she says, like the fact that marriage might not be a viable life choice for her son because of the social problems tied to Asperger’s. But treatment has brought her son to a level where he is capable of living on his own, and for that, Rosenwald says she is grateful.
For a long time, though, her son’s condition went undiagnosed.
“When he was younger, [before] preschool, it was different,” she says. “In those days there was no understanding. We went for many years not knowing what was going on.”
Now, as the executive director of Wallingford-based ASRC, Rosenwald is a passionate advocate for spreading the truth about autism, which, according to a December 2009 report by the Centers for Disease Control and Prevention, is prevalent in one out of every 110 births in the United States.
The ASRC’s annual Walk and Run for Autism, one of its major fundraisers and awareness-raising events, is now in its 13th year. As of April 16, the event, held at Choate Rosemary Hall in Wallingford on May 1, had raised more than $39,000 in donations, according to a running ticker on the event’s homepage. Donations go directly to the ASRC to fund support groups, training programs, workshops, and other resources to serve those on the autism spectrum and their families.
Rosenwald says it is the goal of her organization to consolidate a variety of resources to parents and families of loved ones on the spectrum. She says she wishes she had the use of these resources when her son was younger and undiagnosed.
However, even now with more resources at hand, the cause of autism remains a mystery, which makes it that much more important to detect early.
“We don’t know what causes it, so the earlier we can diagnose it the better,” says Tara Glennon, an occupational therapist and professor at Quinnipiac University. “Because we don’t have a cause, we have to screen everybody,” she says, referring to an autism screening program spearheaded by the American Academy of Pediatrics (AAP). The AAP announced the program in 2007, when autism reportedly affected one in every 150 children in the U.S.
Here are a few “red flags” – as told by Autism Speaks – that might mean a child has symptoms of Autism:
- No big smiles or other warm, joyful expressions by six months or thereafter.
- No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter.
- No babbling by 12 months.
- No back-and forth gestures, such as pointing, showing, reaching, or waving by 12 months.
- No words by 16 months.
- No two-word meaningful phrases (without imitating or repeating) by 24 months.
- Any loss of speech or babbling or social skills at any age.
Sara Reed, executive director of ASCONN or the Autism Society of Connecticut, agrees with Glennon in that the earlier symptoms can be detected, the better.
“Kids with autism can be taught to do many things, and symptoms can be ameliorated and alleviated and they can be successful,” she says.
Once accurately detected and diagnosed, the next hurdle comes: treatment.
There is no one exclusive treatment for a person on the autism spectrum because “symptoms and impact on participation is varying for each child,” says Glennon, adding that that’s the reason why the common term for autism nowadays is autism spectrum disorder.
She says her job as an occupational therapist working with children with autism is to first zero in on what is meaningful to the child.
“There’s a whole range of concerns that a child might show or demonstrate,” Glennon says. “So there’s a whole range of treatments that may or may not be appropriate depending on the kid.”
One common issue with children with autism, Glennon says, is their obsession to become fixated on things that may not be all that out of the ordinary, such as a flickering light. She says, instead of something going off in their brain saying, “You don’t need to pay attention to that,” the child can’t stop staring at the light.
“We look at what the barriers are,” Glennon says, i.e., what is so alluring about that flickering light. From there, treatment can be facilitated to the child’s needs, she says. And from there, progress.
“There’s a misnomer that the kids aren’t funny,” says Rosenwald. “People on the spectrum have a great sense of humor; we should all be a little looser.”