“What you see is often just a piece of the full picture. Perception can be misleading and the truth is a spectrum of experience – inner, outer, spoken and unsaid. This isn’t just true for people with autism. It’s true for everyone, everywhere. We’ve all felt the sting of being misjudged by how we appear, rather than seen for who we are. Everyone wants to be understood. In order for that to happen, we have to start looking at the full picture.” ~ AutismIs.org
How beautifully true is that?
In honor of World Autism Month in April, I want to shed some (blue) light on what #AutismIs and awesome autism events and resources in the Cleveland area.
Autism is one of the fastest-growing serious developmental disorders in the U.S. One in 68 children has autism. This includes 1 in 42 boys and 1 in 189 girls, according to the CDC. In 2013, the American Psychiatric Association merged four separate diagnoses into the umbrella of Autism Spectrum Disorder (ASD). These included autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.
According to Autism Speaks, ASD refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. It is a “spectrum” because there are many types caused by different combinations of genetic and environmental influences. Every individual with autism is unique. Signs tend to appear between 2 and 3 years of age, sometimes as early as 18 months. Early intervention for developmental delays can improve outcomes, and in some cases even allow individuals to “test out” of the diagnosis after a period of time, so parents with concerns should seek evaluation immediately.
A number of medical conditions are associated with ASD, including anxiety, depression, ADHD (attention deficit/hyperactivity disorder), gastrointestinal problems, sleep disturbances and epilepsy. Allergies are also common.
While about 1/3 of people with autism remain nonverbal and 1/3 have intellectual disabilities, oftentimes, autism brings just as many exceptional abilities as limitations. Many people with autism have normal to high IQs and some may excel at math, music or another pursuit. Strengths often include visual processing (thinking in pictures), attention to detail, honesty and direct communication. As many as one in ten people with autism may have special savant abilities like the main character on TV’s “The Good Doctor” or Dustin Hoffman’s Rain Man.
Despite its prevalence, misunderstanding often leads to bullying. Research shows children with autism are five times more likely to be bullied than their neuro-typical peers. Encouraging awareness, understanding and empathy at an early age can help. Schools like Redwood Elementary in Avon Lake conduct activities simulating the challenges of autism where students try to communicate solely with pictures on an iPad, for example. Nationally, Sesame Street introduced Julia, an autistic Muppet, as a regular cast member, and Sesame Place in Langhorne, PA is the first theme park designated as a Certified Autism Center.
Here are a few points to keep in mind for interactions with autistic individuals:
- If a person with autism doesn’t make eye contact when speaking with you, it doesn’t mean they are ignoring you or not understanding what you are saying. It just might be uncomfortable for them.
- Behaviors like meltdowns are not a result of inadequate parenting or the individual’s desire to be “bad.” They can be caused by overstimulation, too little stimulation and/or difficulty managing emotions. It can take time to get comfortable in a new environment.
- Struggles with social skills can make peer interaction difficult, but it doesn’t mean the person is unfriendly or lacks desire for relationships. People with autism are more likely to feel empathy and compassion for others when emotions are communicated more directly.
Cleveland has several upcoming events and resources available:
- April 19: Connecting for Kids Meet & Greet free public event 6:30-8:30 p.m. at the Don Umerley Civic Center in Rocky River to connect families with local resources, therapies, after-school programs and summer camps for children struggling with or without a formal diagnosis.
- May 16: Meet Author Temple Grandin, world-renowned autism spokesperson, scientist and consultant on animal behavior, at the Cuyahoga County Public Library Parma-Snow Branch Auditorium at 7:00 p.m. Her latest book, Calling All Minds: How To Think and Create Like an Inventor is a book of personal stories, inventions and facts that creates a blueprint for different ways to look at the world.
- June 14-15: Milestones Autism Conference at Cleveland IX-Center
- July 28: Cleveland Autism Speaks Chef Gala 7:00-10:00 p.m. at the Cleveland Museum of Art to raise funds and awareness for people with autism
Other local resources:
- Free Autism Help Desk from Milestones Autism Resources: 216-464-7600
- Autism Speaks of Northeast Ohio
- Autism Society of Greater Cleveland
- Ohio Department of Health Help Me Grow (early intervention services under age 3)
- Cleveland Clinic Center for Autism and Lerner School for Autism
- University Hospitals Rainbow Babies & Children’s Hospital Autism Center (Division of Developmental & Behavioral Pediatrics and Psychology)
- Monarch Center for Autism and Adult Autism Program
- Spectrum Consulting Services, Resource Center and School
- Building Blocks Therapy (ABA)
- The Quiet Space is a room at The Q arena for individuals with sensory issues. Guests can also check out free sensory bags with noise-cancelling headphones, sensory toys, weighted lap pads and more.
In Ann Arbor, MI May 14-16, The Play Project will hold a conference and intensive workshop on its evidence-based parent-implemented autism intervention program.
To learn more about the signs or what to do after receiving a diagnosis, Autism Speaks offers a First Concern to Action Tool Kit and 100 Day Kit for newly diagnosed families, which includes a week by week plan and glossary of terms.
How do you look at the full picture? What autism resources would you add?
Please note, this information is meant to serve as a primer on autism and local resources available, NOT medical advice. If you have developmental concerns or seek a diagnosis and/or treatment options, consult a healthcare professional. The majority of this material is derived from Autism Speaks and represents just a sampling of information and local resources available.