Where Advocacy, Special Needs Parenting, & Life Collide
Temple Grandin, Autism Awareness, and the Downside of Autism Awareness
As the Autism Awareness in Action Campaign Begins, Consider the Downside
One of the biggest reasons I wanted to put together the Autism Awareness in Action campaign was because so many folks out there are focusing on Awareness campaigns.
But there is a danger of what I like to call the social high of becoming involved with them. Yes they are sharing a picture or post that moved them, but they are forgetting the key aspect of any true success in raising awareness.
There must be come change, some result, something measurable that makes it possible to say that people weren’t sharing everything to do with the campaign just because of that social high. With that goal in mind, when I read the latest interview with Temple Grandin I was nodding my head.
Beyond the awareness campaigns, there is a responsibility that we as parents of these amazing kids have – we have to help them reach their full potential. Whether that is in their social interactions or academics, these kids being diagnosed with autism today have a healthy dose of awareness that goes into their every day.
From Disability Scoop – Temple Grandin on the Downside of Autism Awareness
Temple Grandin is arguably one of the most famous faces of autism. Nonetheless, the self-advocate says there are drawbacks to all of the awareness surrounding the disorder.
Grandin says she’s worried that focusing on labels means that today’s youngsters with autism won’t meet their full potential.
“To a certain extent it’s a good thing,” Grandin said of increased autism awareness in an interview with Salon.
“On the other hand… I visit people in (autism) meetings, and a 9-year-old will come up and want to talk about his autism. I’d rather talk about his science project. You get fixated on your favorite thing as a kid, and now kids are getting fixated on autism instead of dogs or medieval knights. I’d rather get them to fixate on that something that could give them a career,” Grandin said.
What’s the connection between Autism Awareness and this Downside?
If your efforts are focused on, say, finding a cure for autism, what are you doing to portray that to your child? Do all they ever hear about is how horrible autism is? How hard it is to deal with? How much stress it is placing on the family? Are your awareness efforts transferring to your kids, and rather than empowering them, are they helping them fixate on this fascinating thing that is autism?
I brought the above up as an example … we don’t actually focus on cures here in the Moody house, but on therapies, on goals, and on action that we can take, including the kids, to help them meet their full potential. It’s just a different way of looking at things, but what I want you to consider is how you are addressing your child’s autism with them.
Whatever your thoughts are about autism (depending on the day those thoughts could be R-rated or full of hope and inspiration) are you helping your child reach their full potential if they are now focused on that diagnosis as well?
It’s a hard balance – we want our kids to be comfortable enough with their autism, their epilepsy, any of their special needs, that they don’t feel like these labels define them, but strong enough to stand up for themselves and achieve success despite those diagnoses.
Kids have a hard time figuring out who they are in this big world, and autism makes the world, and themselves by default, that much more difficult to understand.
So, my plug for the Autism Awareness in Action Campaign here is with a warning as well – be involved because you want the “ACTION” part of that equation. And be involved because helping your kids reach their potential (or your friend’s kids, etc) is going to take a different kind of awareness to help a community view the child with autism as an amazing CHILD, first.
Are you a part of the Autism Awareness in Action Campaign? Do you have a child with autism? What do you think of Temple’s concerns about ‘awareness’ and how do you address this in your own home and community?
Katrina Moody
Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
@KatrinaMoody
Wife; Mom to 3 guys w/ARS, autism, epilepsy & awesomeness; Advocate. Writer, Graphic Designer, Wordpress addict, social media nut. Site: http://katsmedia.com &
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I think Temple Grandin is right and I can see that all this awareness could detract from our kids achievements. Saying that though just because there are awareness campaigns doesn’t mean people aren’t working hard to get their children aiming towards their individual goals. I know we are more focused on our children as individuals and helping them to develop rather than their labels. We only use their labels when we need to get support but at home our children are our children. As you say, its about getting a balance.
Deb recently posted..The trouble with caring
I couldn’t agree more, Deb. Finding that balance is hard as a parent, but very important. I think awareness in important too, but for the right reasons. Awareness is nothing if there isn’t some kind of action behind it.
Thanks a bunch Deb!
Thank you! I’ve been called horrible names for wanting to help my daughter have a more normal life. She is profoundly autistic. She will never live on her own or have her own checking account, but I’m doing all I can to make her life as full and “normal” as her sister’s. I’ve been called a monster for “forcing” her to talk and a “horrible parent whose children should all be taken away from her” for requiring my daughter to eat a variety of foods, to potty train, to keep her clothes and shoes on. I’m not “embracing” autism, I’m not letting her be “different, not less,” according to these very vocal activists.
I’ve met a large number of individuals who are so adamant about campaigning for autism awareness that I’ve wondered…what would they do if (God forbid) their children had been born with the curse of being normal?
I wish I could say it gets easier, but there are always folks who think they know better than you how to raise your child.
I know for me that campaigning for autism awareness has taken on a life of its own, especially since my boys have so many other serious issues … I feel like awareness campaigns are important, if only to raise public awareness … but they are not helpful because they are a limited promotional kind of thing. That’s why I started the Autism Awareness in Action campaign – to further discussion around what we can do to create goals and provide actionable change. The campaign will continue through the different awareness days and months (most especially the ones my guys all share) because I think awareness is great, but it doesn’t do enough without action behind it. I’m so glad to see I’m not the only parent who feels a little unsure about all the different campaigns out there.
(and just between you and I, I don’t know what I would do if my children had been born without their rare disorder or autism or epilepsy … or any of the other numerous issues that they have … I used to think about it, dream about it, hope for it. But I stopped that so long ago, because that isn’t my boys – they are extraordinary little men who have so much to offer the world. It isn’t my fault if the world can’t look beyond the autism and other issues to recognize that, but I will do everything I can to make them aware, to make it possible for them to help in real ways when they do realize …)
I salute those parents with autism kids for their patience,firmness and unconditional love for their kids despite what they going through.
Happy mother’s day to all Mom to their unconditional love!
Thanks, that was sweet Becca!