Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.


Autism Speaks' 100 Day Kit

Autism Speaks has created a "100 Day Kit" for newly-diagnosed families. It is said to walk a family week by week, through those first 100 days after receiving an Autism diagnosis. I've never been a supporter of Autism Speaks, as anyone reading my blog can plainly tell. But, I am also one to give credit if and when credit is due. My initial reaction for this, is that it could be a great resource for parents. But, having vivid images of "Autism Everyday" and most of the talking points coming out of Autism Speaks reps, I also fear what could be in this kit.

The 100 Day Kit includes basic information about autism and dealing with the news of a diagnosis. The personalized kit lists local service providers, support groups, recreational activities, sources of legal information, conferences, local autism and disability organizations and information about the local chapter of Autism Speaks. It provides insight into getting services for a newly diagnosed child and explains various available treatment options. A week-by-week action plan helps walk a family through the steps it needs to take to ensure that it is on the right track. The kit also includes a glossary of terms associated with autism, as well as a safety plan and a list of recommended books and informational web sites.

Will they advise newly-diagnosed families watch their "documentary" (not how I would categorize Autism Everyday)? Who exactly are the service providers? What books are they recommending? What treatments do they suggest? Do they make mention of DAN! or chelation etc.? My other concern is the support groups they list, the majority of them are cure-related or pathetic "why me?" gatherings. Those first 100 days are crucial, and at a time when parents are emotional and confused, a kit like this will make a tremendous impact. This issue is: will it be a positive impact? Will parents find themselves three months later seeing all the potential in their child? Or, will they be the next bunch of parents for Autism Everyday Part II?
The 100 Day Kit was created by the Autism Speaks Family Services staff in conjunction with a professional advisory committee comprised of twelve autism professionals, a parent advisory committee that included parents from across the country, and members of the Autism Speaks Family Services Committee.
Shuttering to think exactly who was a part of this committee. The fact that Allison Tepper Singer is their executive vice president for communications and awareness, tells us a lot. Autism Speaks' irresponsibility in picking their "leaders" is apparent. I want to get my hands on this kit, it is available online. When I have some more time, I will read and digest its contents.

I hope this will be a helpful tool for families, it would be one of the first major things Autism Speaks has really done that would personally touch families. Only time will tell if this ends up being a saving grace for Autism Speaks, or the same old, disparaging, negative views we are accustomed to from this group.

The press release is available here: http://www.autismspeaks.org/press/100_day_kit.php


Chaoticidealism said...

Here's a link to the online version of the kit. Remove the spaces after the periods.

http://www. autismspeaks. org/docs/family_services_docs/100_day_kit. pdf

Lisa Jo Rudy said...

took a quick look at the "kit" (really just a document) and will review it shortly... long story short, it's nothing people haven't seen a million times before, except that the design includes lots and lots of repetitions of the Autism Speaks logo, and the package recommends lots and lots of Autism Speaks programs... personally, I think there are FAR better "kits" out there already!

Lisa Rudy (autism.about.com)

Nicole Grant said...

I am really interested in the types of resources parents would actually benefit from. Lisa, you mentioned FAR better "kits". Are you able to direct me to any? I would really appreciate it.


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