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Sibling Perspective: What Autism Awareness Month Doesn’t Mean to Me

Jennifer RoseBy Jennifer Rose

Well,  we've said goodbye to another long April, aka Autism Awareness Month, which has done about as much good for autism as the Spice Girls have done for feminism. If it were more like Breast Cancer Awareness month, which actually does care about people with breast cancer and is about more than “awareness,” it wouldn’t be so bad. Autism Speaks has become notorious for trying to cure autism. But, they also want to make autism look like a “gift”. They also tell us to “Light it Up Blue”- what does that accomplish? Can you say “contradiction?”

Don’t get me wrong, I don’t mind causes making autistic people feel good about themselves…as long as they don’t treat autism as “alternate thinking”, or worse, a “gift.” It’s only a gift if it inspires people to think outside the box and be more creative. Some famous creative minds may have been autistic (Tim Burton, Andy Warhol, Lewis Carroll) though that’s only speculation. And I found it very sweet for Jodi DiPiazza to sing with Katy Perry, and for Alexis Wineman to overcome autism to become Miss Montana that same year. (I’m also pretty envious of both girls, though Mom and Dad say that I’ll be doing so much more work with autism.)

If they were all Jodi DiPiazzas and Alexis Winemans, it would be easy. However, autism is not a Jenny  Flora Rose“one size fits all” diagnosis. There are many kids who struggle to get a word out, like my sister. However, autism coverage in the media is a lot like “missing pretty girl syndrome.” If you’re cute, pretty, and “marketable” (read: sugary sweet), you get coverage. Unfortunately, this not only leaves out kids who are severely affected, but also kids who have recovered, like me.

Last September, the mother of cheerleader Keely Pettingill announced that she had recovered, but the media didn’t report that. Her mother was pretty ticked about that, because she wanted a recovery story. She had been told that her daughter would end up in an institution, and she was like “Yeah-college!” My father said “At the next Congressional hearing in November, we have to have a panel of recovered kids.” Thanks, Dad! Too bad Congressman Issa had to cancel.

Recovered kids? Are you serious? Kids can’t “recover” from autism, don’t be silly! If it ain’t broke don’t fix it! Man, do I wish people will wake the hell up, because it is a disorder, not just a difference. If people out there stopped seeing homosexuality as a disorder, and autism as just a difference, and instead thought the other way around, we’d be living in a much better world.

I even wrote a poem last March, about “what I would do to help the world”:

If I could change anything about the world…

I would help kids.

Not just in any “normal” way.

I would help kids with autism.

I remember when the numbers were 1 in 150

I was 11

The numbers are now 1 in 50

That’s two percent

I am now 17

People say it’s just a difference

Or a gift

Completely ignoring the fact that

It’s not just “one kind” of autism

They are not all gifted

Autistic kids go missing

They have meltdowns

Some can’t live on their own

I should know

My sister is autistic

I am not an extremist

I just want to help people

Function in normal society

America needs to wake up

And do something about this.

Jennifer Rose is a student at Shepard High School. She is the daughter of Gayle DeLong and Jonthan Rose, and has one sister on the autism spectrum. She will be going to Drew University next year.


Jeannette Bishop

Thanks, Jennifer. I often gain important insights from those who've recovered or recovered/maintained enough ability to communicate their experiences with autism.


Thanks for sharing your perspective Jennifer! I completely agree with your views. I would be interested in hearing more of your story. Did you say that you are recovered but your sister is not? How old were you when you recovered? Do you remember having autism? What did it feel like? What helped you to recover and what did it feel like to not have autism and all it's symptoms anymore? What is you relationship like with your sister. You obviously care about her. Sorry for all the questions. Maybe another article? :)


Thank-you for sharing, Jennifer Rose. You speak for so many - siblings who can talk, as well as those without the grace of words right now.


I love your poem!

As well as your story about yourself and your family. Thanks for writing it.


Thank you Jennifer for being a sibling advocate. Very well stated! And your poem is perfect.

John Stone


You highlight how adept our society has become at shifting the focus from the real issues. The truth is that about once a decade an organisation like the BBC (I write from the UK) might focus on the strain and hardships of families struggling with disability by putting out a program in the late evening, but our politicians particularly have become very skillfull at parading vacuous concern.

I have previously noted CDC Foundation board member Bernie Marcus (who bank-rolled Autism Speaks) going gooey-eyed at the success of 'Light it up Blue'. It is enraging. Nothing has been achieved but "feel good" for those who are not really touched. "I weep for you" the Walrus said to the Oysters...


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