Autism affects one in 58 in N.C.
Earlier this week, the Centers for Disease Control and Prevention reported that the prevalence of Autism Spectrum Disorder has increased by about 30 percent since 2012, to one in 68.
In North Carolina, one of the states monitored through the Autism and Development Disabilities Monitoring Network, the prevalence rate is one in 58 children, a 17 percent increase from the 2012 data, according to a statement from the Autism Society of North Carolina.
April is Autism Awareness Month. According to the Autism Society, it has been observed since the 1970s. It is a time to educate the public about autism and issues within the autism community.
For Jennifer Cook O’Toole, a local author, educating the public about autism, specifically Asperger’s Syndrome is a year-round profession. She is the author of five books and runs an organization called Asperkids, founded in 2012, which works to help explain, expose and help Asperkids, children with Asperger’s, around the world
Asperger’s Syndrome is a diagnosis on the autism spectrum that is characterized by difficulties with social interaction and nonverbal cues. The most recent copy of the Diagnostic and Statistical Manual of Mental Disorders (DSM) eliminated the Asperger’s syndrom diagnosis and folded it into the diagnosis of autism spectrum disorder. It is still used in the vernacular and many other organizations recognize it as a separate diagnosis. The Autism Society said it is differentiated from autism by having less severe symptoms and the absence of language delays.
O’Toole is diagnosed with Asperger’s, along with her husband and her three children. She uses her own life and experiences to help others in the community.
O’Toole said it was a relief when she was diagnosed. She said it was like figuring out a mystery and the relief that comes with that. She said they are well aware that there is something different and the diagnosis helped her and others realize there is a reason that certain things have not made sense, it is because they are wired differently, not that they are not trying hard enough or are not good enough.
After experiencing difficulties with her oldest daughter and her education, O’Toole decided to homeschool her for a while. She said people were interested in the techniques and methods she was using as a teacher.
Someone asked her if she understood that she could change the way people see these children and she decided to help. She wrote her first book in about three weeks and it was published soon after.
The books and Asperkids gained in popularity quickly through social media.
“The response was so visceral and so international and so fast,” O’Toole said.
She said there are a lot of resources for people and families with autism and Asperger’s, but there is a of resources that are in the first person, from a female perspective and hope-filled.
She said Asperkids focuses on “relentless” positivity. One of the things they do is send a “Congratulations! You’re an Asperkid!” kit to children with the diagnosis. The kit is meant to empower and encourage children, who can often feel isolated and different.
O’Toole has heard from children and parents from around the world who have been helped by her books or by Asperkids.
She said that over and over the parents and kids are told what they can and cannot do and she thought, how dare you limit these children.
O’Toole has countless stories of children her organization has helped. For many parents and kids, hearing O’Toole speak is the first time they are hearing something positive and not pejorative. She said she sees a diagnosis as an identification and a gift. She said it allows people to know they are not a failure, they are just different.
O’Toole also offered advice for people interacting with someone on the spectrum.
She also said people should take the time to ask “why?” with everybody and not assume they know the answer and to challenge their own moments of discomfort.
She advised people to offer rules, saying that if you want people to play a game with you, they will lose without a copy of the rule book.
“Always remember, the smallest, smallest kindnesses can make the biggest difference,” she said.
It goes far beyond autism awareness, she said, people need to not be afraid of the label because it only confines them if they buy into the stigma. Otherwise, she notes that nothing new or wonderful ever happens without a change to the status quo.
People and families with autism have many resources available to them in the community. A school will provide services if needed, though not every child with an autism diagnosis will require special education or related services. Privately, occupational, and speech therapies available, along with behavioral supports. The Autism Society offers an online database of services and have information on treatment, families issues and autism itself.
Because it is a “spectrum” disorder it will impact individuals differently and to different degrees. Not every diagnosis means the person has limited cognitive functioning.
O’Toole has simple advice for autism awareness month. She said the most basic thing is to treat other people the way you want to be treated.
“Love wins,” she said. “The most courageous thing anybody can be...is kind.”