When people hear the words “autism” – the 1988 movie Rain Man starring Dustin Hoffman and Tom Cruise usually comes to mind. In my house – it’s as common as hearing “soccer practice” and “ballet lessons”. Why? My husband and I are the parents of not one, but two beautiful little girls who are on the autism spectrum.
Let’s back up and talk about what autism is and why understanding it is so important. Autism Spectrum Disorder is defined by the American Psychiatric Association as “a complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behavior.” Autism is not detectable before birth or PGS testing. It also cannot be detected via bloodwork.
There is no definitive reason as to what causes autism. There is nothing one can do, or could’ve done to prevent it. This is the hardest part of the diagnosis.
Those with autism struggle to adapt to change and often focus on one particular interest. They cannot look you in the eye for a conversation, but can talk for hours about the specific interest they have. They may only wear a particular pair of pajamas or like foods served in a particular order. My girls are particularly attached to each of their special blankets that were crocheted by my grandmother before their births. This item can be a huge help in getting the person to calm down or feel better in an unfamiliar situation.
Signs of autism are often present before a child is 24 months, but with the ongoing research being done today, autism is being diagnosed at younger AND older ages. This may seem wild, but a friend of mine received an autism diagnosis in their 20s.
If you’re concerned your child may have signs of autism – the first place to go for information is your pediatrician or Grant Wood AEA. They can help direct you to what your next steps should be. We have had a great experience with the special education department in our school district, Witwer Children’s Therapy in Cedar Rapids and Hiawatha (big shout out to Katie, Taylor and Haley!) and American Behavior Consulting of Iowa for (Hi Jenny!). There are lots of other places that assist families with a child with autism in this area. Some are in private practice and others are small companies.
If you are not familiar with autism at all – there are several ways you can learn about it:
For your little ones – Sesame Street introduced Julia- a character with autism – in digital format in 2015 and on television in April 2017. Alan introduces Big Bird to Julia as she paints with a paintbrush next to Elmo and Abby Cadabby. He explains why Julia may not answer you right away and why she may do things that may seem different than you. Later, while he helps her take a break, Elmo and Abby talk to Big Bird about how loud, unexpected noises can be hard for Julia too. The scene rounds out with everyone singing “we can all be friends” after discussing how all people are different. This sweet 10-minute clip is available on YouTube. I cannot recommend this clip enough.
For older children – TruConfessions, a Disney Channel Original Movie available on Disney Plus – is a good way to discuss the topic. While Shia LaBeuof’s character Eddie does not have autism specifically – the film talks about how people who are different (like Eddie or my girls) just want to be accepted like everyone else despite how they may seem when they cannot control their emotions. This is a big point in teaching your kids about bullying.
A good book option for older kids – “Kristy and the Secret of Susan” from the Babysitters’ Club series. Kristy babysits a child with autism named Susan. Kristy tries to help others see that Susan is enough like other children to be able to stay in fictional Stoneybrook and participate in regular Special Education versus her parents sending her to a boarding school for others like her. This also brings up the bullying point which is very important as kids get older and enter middle school.
For adults -if books are more your thing- Jodi Picoult’s 2009 novel “House Rules” depicts Jacob Hunt, a teenage boy with Asperger’s syndrome (a high functioning form of autism). Each chapter is told by a different character and takes you through a story that makes you go “WHAT?!” at the very end. I read this book long before the births of my daughters. It does help you see the world from the eyes of a person who is wired a little differently than the rest of us.
I cannot talk about autism without bringing to attention – television’s lovable science nerd Sheldon from The Big Bang Theory. Jim Parsons’s stellar performance as Caltech theoretical physicist Sheldon Cooper won him four Emmys and a Golden Globe. If you’ve watched, you know what I’m talking about. Sheldon has “his spot”, rarely understands sarcasm, and struggles with unexpected changes in his schedule. He often says the wrong thing at the wrong time, could talk about video games and Star Trek for hours, and is uncomfortable with physical contact from others. Sheldon also possesses an eidetic memory (or photographic memory) which serves him well occasionally in the series. This can also be referred to as “savant syndrome” in the autism world. Sheldon Cooper is a representation that those with autism can go on to lead amazing lives.
If I could tell new autism families one thing I’ve learned since my oldest daughter was diagnosed on a cold, dreary day in November 2017: Autism will change the future you had dreamed of for your child, but your child will go on to amaze you in ways that you never could have imagined.
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