Monday, April 2, 2012

World Autism Awareness Day: working toward new therapies

Today is World Autism Awareness Day. The following is an excerpt written by Kristen Callow, a California native who now advocates for autism awareness, education and early intervention in Sydney, Australia. Her daughter Juliet was identified as likely being on the autism spectrum at 28 months of age. Kristen has since been encouraging more people to become familiar with signs of autism so they can get their own children diagnosed when they are young and while early intervention is most likely to be effective.
When I first started worrying about Juliet’s development, at about 12 months old, autism was nowhere on my radar screen. What little knowledge I did have was based on having seen the movie “Rainman.” Sure, Juliet had some unusual interests, behaviors, and sensitivities, but she was happy baby who loved to engage with me and Sean. Why would we need to be worried about autism?!

In hindsight, Juliet actually showed several early warning signs of ASD) as a baby and young toddler, but I failed to recognize them as such. I had niggling worries that something was amiss, but no one around me seemed to share my concerns.

Sean thought I was overreacting in stereotypical first-time mother fashion. “She’s fine. She’s just not an extrovert like you.” Well-intentioned friends and family comforted me with: “Don’t worry. All kids develop at their own pace” and “Of course she’s a bit different…just look at her mom!”

Likewise, our pediatrician wasn’t overly concerned by the fixations, the sensory issues, and lack of interest in other kids. “A lot of parents would love to have a 2-year-old who can read! Look how well she engages with adults.” A few loved ones did have concerns, but they were hesitant to say anything for fear of freaking me out. I clung to these reassurances as the reason not to probe my concerns any further.

Finally, two very brave friends approached me and suggested that we have Juliet assessed for ASD by a specialist. It was the very first time that anyone had even suggested that Juliet might be at risk, and the more I read about ASD, the more I saw glimmers of Juliet. I was overwhelmed with fear and grief. Meanwhile, Sean remained totally unconvinced that his darling daughter could be on the spectrum (both very common reactions, I later learned).
The world needs people who see things through an unconventional lens, and our job as Juliet’s parents is to make sure that she has the confidence and core skills she needs to shine on her own terms. ASD does not define our daughter, but it is an important part of who she is, and we are proud to embrace it. Now we just want the rest of the world to do the same!

If any of you reading this note has concerns about your own child’s development — be it suspected ASD or some other potential issue — I hope that our story provides a gentle push to take action. There is nothing to lose and potentially so much to gain. Please help me spread that message.

The CDC recently reported that 1 in 88 children has been identified as having an autism spectrum disorder. That’s up from 1 in 150 identified in 2000. Although there is no cure for autism, there are forms of therapy that can help kids overcome language delays and learn to interact with other people. The CDC has an excellent resource describing the symptoms and treatments.

CIRM recently posted a Spotlight on Autism featuring Laureen Forman discussing her son Brandon and the work of CIRM grantee Ricardo Dometsch, who also has a son on the autism spectrum. In that story Forman talks about her son:
"The biggest challenge is with other people. When we're walking around and he's ahing and oohing, people stare at him. How does that make him feel?"
Forman has said she hopes work like that of Dolmetsch will not only lead to a new cure for the disease, but will also change the way people react to those who have autism.

This page gives more information about work toward a stem cell therapy for autism, and provides links to the seven CIRM awards targeting the disease worth more than $10 million. We are hopeful that these projects will one day lead to new therapies. Until that day comes, it’s important that families know the signs of autism spectrum disorders and get children diagnosed as early as possible. The current approaches to helping kids with autism are all more effective the earlier children are diagnosed.


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