Susan's Blog

Tuesday, April 1, 2014

Really? Autism Awareness Month?

Right, right. April first. How fitting that it is Autism Awareness Month begins on April Fool’s Day. Why do I say this? Because we claim to want or to have awareness but we are fooling ourselves. What are we aware of? What are we supposed to be aware of? That people with autism exist and struggle? Autism Awareness makes no sense to me anymore. Unless you live in a cave, you’re aware. But do you get it?

I’m aware. Oh yes, I’m aware. I’m aware that there are more and more parents like me who do not know how to plan longterm for their transitioning/adult autistic family member. I’m aware that the Spectrum is broader but funding is shrinking. I’m aware that caregivers get little to no training. I’m aware that teachers are overwhelmed and that they may not know how to accommodate different learning styles, yet the world is becoming more competitive economically. I’m aware that only a small percentage of people with intellectual disabilities work. I’m aware that I love Nat crazy deep but I still am never sure if I’m doing right by him. I’m aware that society has so far to go. And so do I. Yeah, pretty much Aware.

Nat wins the gold in the 25 meter relay

Nat wins the gold in the 25 meter relay


Ben, Nat, and Max sat.

Ben, Nat, and Max sat.

77065_450658450755_547480755_5899117_3692125_n Me and Nat at WDW!! 20130513_134328 copy 2013-01-05 18.34.10


I hear you, sister.
Your blog is the first I have found that addresses my deepest soul question about my child’s future. I will stick with it out of solidarity and also concern.
I share your thoughts on “Autism Awareness” too – was writing a post about it and thought, “Now I cannot post this today because it’s april fool’s and people might think i am ‘joking’…but it’s the first day of ‘Autism Awareness’…but? huh??”
BTW – I see you are in Massachusetts…I am in Southern VT. If you’d ever like to talk shoot me a PM at

— added by Full Spectrum Mama on Tuesday, April 1, 2014 at 1:04 pm

Sounds good, FSM, or you me: xo

— added by Susan Senator on Tuesday, April 1, 2014 at 1:11 pm

Right on Sue and our children are not puzzles either. Let’s deal with the real lives of families and individuals. It’s not about finding a cure it’s about supporting people for who they are and their families.

— added by Ed Bielecki on Tuesday, April 1, 2014 at 3:00 pm

Love it, Ed!! Thanks.

— added by Susan Senator on Tuesday, April 1, 2014 at 3:04 pm

We are pretty aware over here too!

Your post is right on target as usual!

— added by Susan on Tuesday, April 1, 2014 at 4:23 pm

Thanks, Susan!

— added by Susan Senator on Tuesday, April 1, 2014 at 4:24 pm

I have to admit ASD awareness month is an eye-roll to me. You hit all the big points but I also think that truly, nobody cares. People just don’t. They care about them and them only and even if what they view is right is completely wrong they will hunt the internet to prove themselves right. We’re very self-absorbed in today’s world.

All anyone can do, is live and not hide. That’s what we do. We’ve proven education works. We’ve proven parenting works. We’ve proven they can take part in everything with adequate supports. We live with, and not for.

As for planning for adulthood… You are WAY ahead of 95% of the other parents out there… the one’s that scream in the news regularly that have never planned for anything. You should be proud of what you’ve done.

— added by farmwifetwo on Wednesday, April 2, 2014 at 8:28 am

Hi Susan – I think you’re missing the point of this essential annual exercise. I “get” the awareness fatigue, but you and I are not the intended audience. The effort isn’t about whether you, me, or folks directly impacted by autism know the complex and broad range of issues.

You’re a universally respected expert on most, if not all, of them. Others impacted by autism in their daily lives generally get up to speed pretty quickly to varying degrees (though parents and families with newly diagnosed or young kids, some ethnic communities, and economically/educationally disadvantaged folks still need tons of outreach on the basics.)

Rather, this effort needs to happen to reach the widest, least informed audience possible and educate them that these issues exist and need to be addressed. Without the weight of broad public support, policy doesn’t get better. This public support happens by creating connections and relationships, one at a time, through initiatives like Autism Awareness Month. This exercise is undeniably an icebreaker, organizing tool, whatever you want to call it, that helps develop a base of support. Getting a neighbor, a sibling, a cousin or cousin’s spouse, a coworker, an employer or employee or whomever, involved is critical because all of these folks have the potential to impact policy. They are the ones who ultimately make it. Some via their jobs or professional roles and others through their choices at the ballot box.

— added by Dadvocate on Thursday, April 3, 2014 at 2:42 pm

Hi Gene,
You’re right, of course, that there are still people who need to become aware — not necessarily even of autism itself but of all of its ramifications. Awareness is putting it simplisticly, but then again, so are most campaigns. You are right, awareness will do a lot of good.

My post was indeed meant for the informed autism families, who would “get it,” though, and to further highlight our feelings. Some of my blog posts are of that tenor, some are more about the advocacy that you’re talking about. A lot of bloggers and writers are covering the latter, and that type of post is great but it was not where I wanted to go this time. Perhaps I was a little too blithe in assuming that this angle would hit home, but it was the post I chose to write. I tend to just follow my gut on these things. I also have to admit that I am a little leery of the Light it Up Blue campaign, which tends to gobble up a lot of the airspace for thinking about autism nationally. AS has one perspective — some of it great, some of it awful — and I want to be sure that it is not the only one that is heard.

— added by Susan Senator on Thursday, April 3, 2014 at 2:51 pm

All good stuff, Susan. Your voice is so important, not only to the established folks, but the line of new people that keep on coming.

Since I’ve been advocating on such a wide variety of issues for so long, I sense that I’m gravitating more than ever toward an approach of “Hey, this part can be useful” or “Maybe this aspect will connect”, rather than thinking one needs to slavishly promote a whole package (of anything) or buy into some grand design in order to take a positive step forward.

Many, diverse, safe, adequately funded options and the freedom to choose the ones that best fit individual preference and circumstances, even if they may be anathema to somebody else, is where I’ve arrived. “All happy families…”, as someone says!

Unfortunately, I am running into more and more rigid thinking these days from so many quarters. That’s what troubles me the most.

— added by Dadvocate on Thursday, April 3, 2014 at 4:25 pm

Speaking for myself only, I don’t mind the autism awareness thing or the puzzle piece. To me, it means me and my son are out there. God knows breast cancer and everything else gets tons of attention all the time so why shouldn’t autism? From my perspective autism has been thrown on the medical scrap heap, especially from organizations whose sole cause is to protect children. That’s the offensive part.

— added by Sharon Jones on Monday, April 28, 2014 at 11:47 pm

By all those pictures and your powerful words, I would not dare to say you are doing wrong by him . You are providing love, understanding, and life for him and that is so powerful on its own . You will know if you are doing wrong, and you won’t bare to do so . I must say I am astonished at the dedication a mom of a child with autism has . Stay strong, girl ! There are hundreds of people proud of the strength you’ve already had !

— added by Kelsey on Wednesday, June 4, 2014 at 11:29 am

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