By Shannon Des Roches Rosa for KnowMore.tv
My son Leo is 13. He's a cheerful, curly-haired, soccer playing, iPad-loving, self-taught swimmer. He's also autistic -- one of those 1 in 68 kids, according to the recent CDC report about increased estimated autism rates.
And you might be surprised to hear this, but that increased rate was a relief to me. It confirmed what the autism research community has been saying for years, and what the CDC's Dr. Colleen Boyle finally stated outright: "It may be that we're getting better at identifying autism." It means autistic people have always been here. It's evidence my son is neither damaged nor broken -- he's an example of human variation, like any kid.
Though, obviously, Leo is not like most kids when it comes to specifics like talking and learning and tolerating crowds. I used to let Leo's autistic differences upset me: I came from outside the disability community (our society tends to be scared of autism), and I simply didn't know any better. I've since come to understand that my job as Leo's mother is to accept him for who he is, get him the accommodations he needs (and he needs a lot of them), and fight as hard as I can to make the world a more autism-friendly place, especially now that we have better estimates on how many Leos there are on this planet -- Leos of all ages.
Helping others understand what autistic kids need is an ongoing effort, mostly because of pervasive autism myths and misinformation. No one denies that early intervention can be helpful, for example, but parents should not abandon hope once puberty hits, as many autistic people gain skills throughout adulthood. We need better awareness about sensory sensitivities (hearing, smell), and how they can lead to meltdowns. We need to train parents and teachers and community members to be extra careful with autistic kids who don't have speech delays, just because those kids can "pass." And so on.
There are also specific things people should know about Leo, besides the fact that I adore him unreservedly. I have no doubt he would tell you these things himself if he were able, and perhaps he will, soon -- autistic children often increase communication self-sufficiency in late childhood or during puberty, plus Leo is learning how to use an AAC (augmentative and alternative communication) symbol-to-speech device to help him communicate more effectively. Until then, should you encounter Leo or a kid like him, it's my hope that you will consider these key messages -- from the mom of an autistic child to parents of non-autistic children:
1. No offense, but Leo is not waiting around for non-autistic kids to be friends with him. If you're interesting enough, and if you talk to him with respect, maybe he'll want to interact with you. Maybe.
2. Non-speaking does not mean non-intelligent. Leo understands pretty much everything people say to him, whether or not he responds in a way that makes sense to you. So, please, presume competence. If you talk about him in front of him as though he's not right there, he'll remember, and he won't trust you.
3. Eye contact is not a priority for Leo. You can have his attention, or his eye contact, but not both -- that dual focus overwhelms him. He will give you eye contact on his terms, but please don't demand it. (Autistic people are not the only ones who find direct eye contact discomfiting, by the way. It is considered disrespectful in many parts of the world.)
4. Leo appreciates your patience, because, like so many autistic people, it sometimes takes him a few beats to process spoken words. So give him a moment, once you've said something to him. You don't need to simplify your language or shout; he can hear you.
5. Leo craves sensory input. He finds it calming to have a weighted blanket on his lap, to sift through pebbles with his fingers, to bounce on a trampoline, or to chill out in a hammock or swing. It's a lovely thing, really, to see him achieve bliss so easily.
6. Repetitive movements, or "stimming," are another form of self-soothing for Leo, as well as for his autistic peers. So if he's repeatedly tapping on a book, fidgeting with a straw, or bouncing a ball on the counter, and it's not inconveniencing you, please let him be.
7. Leo has no qualms about stealing other people's pizza or French fries. Especially if he thinks you're an easy mark. He will absolutely outsmart you on this, so pay attention.
8. Leo is really great company, and a source of infectious joy. You'll never have a better time hiking, swimming, bobbing in waves at the beach, or just laughing at favorite silly movies, with anyone else. Don't miss the opportunity, should you be so lucky.
9. Leo is happy. We don't hear this enough about autistic kids, since messages about autism tend to center on pity and prevention. Of course many parts of Leo's life frustrate him, as when he can't communicate with others fluently, which limits his independence. But overall, he is a contented kid.
10. Leo knows he's loved. While his cheerful nature is partially genetic (my husband is a cockeyed optimist), I believe Leo's happiness also stems from feeling loved, and accepted, and supported. This might not be every autistic child's story, but it is Leo's, and I wish the media would tell more stories like his.
See Shannon Des Roches Rosa's blog, the Thinking Autism Guide.
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According to the most recent Centers for Disease Control and Prevention estimates, 1 in 68 children in the United States has an autism spectrum disorder, based on health and education records. That figure represents a significant increase from previous prevalence estimates, released in 2012, which estimated that 1 in 88 have an ASD.
Autism is roughly five times more common in boys than girls, according to CDC estimates. One in 42 boys have been identified with autism, compared to 1 in 189 girls. Children born to older parents are also more likely to have an ASD.
According to the NIH, early indicators include: No babbling or pointing by age 1, no single words by 16 months, poor eye contact, little to no smiling or other social responses and more. (Click here for more information from NIH.) The CDC says, "Health care providers will often use a questionnaire or other screening instrument to gather information about a child’s development and behavior. Some screening instruments rely solely on parent observations, while others rely on a combination of parent and doctor observations. If screening instruments indicate the possibility of an ASD, a more comprehensive evaluation is usually indicated.”
According to the Child Mind Institute both genetic and environmental factors could contribute.
Autism is treated with therapy, education plans and medication. Doctors and scientists say that early identification and intervention for children with an ASD can help them thrive in academically and socially in the future. There are still studies being done to find better treatments and perhaps one day, even a cure. A paper in Cell, a scientific journal, discussed a study with more insight into what could cure autism. The study found that feeding rats with similar symptoms to autism a gut bacteria called B. fragilis lead to an improvement in their behavior. "They became less anxious, communicated more with other mice, and showed less repetitive behavior,” according to the Atlantic.
Even when multiple vaccines are given to a child on the same day, they are still not at risk of developing autism.
Studies have also shown that if a child with an ASD has an identical twin, the other will be affected anywhere from 36-95 percent of the time.
There is an 83% chance of co-occurrence for developmental disorders and a 10% chance for psychiatric disorders. These disorders include Bipolar Disorder, Fragile X syndrome and Down syndrome according to the CDC.
Children whose language skills regress before they turn 3 have been found to have a higher risk of developing epilepsy.
The CDC recommends children be screened when the are 9, 18 and 24-30 months.
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