Tag: Autism Awareness

What we did this April was…

What we did this April was…

Ever have to start an essay with “What I did last summer was…..”? Goodness, I hope so, otherwise I may have to change my title!

When I approached people at work this year about changing a decidedly abbreviated Autism Awareness Month movement to a very robust and enthusiastic Autism Acceptance Month movement, I wasn’t really certain anyone would want to listen.  I mean, plenty of people have loads of ideas, don’t they?  I needed to be sure I was well armed with better groups to align with, more current information.

And when I walked in with a month worth of social media ideas and community outreach opportunities, I was heard.

And for the first time in a very very long time, I feel as though what I say- what WE say- actually means something. I feel as though we could in fact help our community as a whole begin to change the narrative from one of fear-mongering to one of strength, inclusion, unity.


Dreadful photo of me, I’d just returned from having the flu and pneumonia.  Gack.  But my friend Erin makes this photo better, yes?  

So… it’s nearly the end of the month.  I’ve photographed perhaps a hundred or so people (I truly haven’t counted) who have heard what I’m saying about understanding and accepting the autistic community.  I’ve heard their stories and shared mine, including my own personal move into self-identification.  This movement has, to my mind, done precisely what it set out to do: change the perceptions held by the non-autistic community about autism, and provide them new information which may help them be more open to inclusion.

And just because April is nearly done does not mean that my our work is over.  No way.  Inclusion, acceptance, understanding, support, love, they are needed twelve months of the year.  Our work has only just begun, lovies.  Are you ready?

Image shows a woman with blonde straight hair, wearing a white shirt that has the words “autism is not a boys’ club” on it.  
Talking to your children about their autism

Talking to your children about their autism

I’ve had several people ask me about telling kids about their diagnosis.  I’ll admit, I may not be the right person to ask.  I’m so totally matter-of-fact about things, that in our house it goes something like this:

“So, little dude, you’re autistic.”

“What’s artistic?”

“A-u-t-i-s-t-i-c.  Autistic.  It means that your brain takes in a LOT of information and processes it (like a computer does).  This is true for everyone, but your brain goes about it a little differently.  It also means you might have difficulty with things that are too loud or too bright or involve too many people. And it also means that you may learn a LOT about one particular subject and then teach us all about it.  Cool, eh?”

It’s safe to say he has my sense of humor

The other day, Speedy was reading the back of my wine glass that we received from David’s Refuge during a respite weekend.  “Children with special needs aren’t sent to special parents, they make parents special.” He looked quizzically at me.  “Do you know what it means when they say ‘children with special needs’?” He shakes his head no.  Then he stops and smiles.  “Is it because of my autism?” “Bingo, kid.  You got that right.”_MG_7929

So here’s my thought on, well, pretty much everything.  Kids pick up EVERYTHING.  They hear and see all of it, especially when we think they can’t or don’t.  When kids hear the adults in their life talking about their strengths and their abilities, and talking matter-of-factly about the benefits of being autistic, they have a more positive view of themselves than the kids who grow up hearing only about the deficits, the struggle, the “I wish he was never born this way” moments.  Don’t get me wrong- we do have the struggles.  We do have the nights when I dissolve into a weepy puddle in my husband’s arms- or vice versa- because we just had never signed on for how much work this would be.  We do have to have deficit-based conversations at times (when our children are not in the building) because some access to services requires that conversation take place.  I end most of our family dinners with my head in my hands.

I don’t want our readers to think I’m all sunshine and roses.  No, lovies.  I’m coffee and wine.  I’m fried cheese and beer.  I’m hanging on to the edge of a cliff by my chewed fingernails.  I move through emotions so fast it would make your head spin, a fact which has often confused my acquaintances.  But it’s all Coping Strategy 101.  There is no manual for my children, which is why I write- so that you may have something to go by.  A weird combination of Instructional Manual, Coffee Table Book, Bathroom Reader and Comic Strip.

I recently attended a conference where the presenter said “If you’re considering writing a book, don’t.”

I’m not letting that dissuade me.

April only comes once per year. What next?

April only comes once per year. What next?

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(Image is a handprint, with each of the four fingers shown in a different color. The words on the fingers read: “love”, “awareness”, “acceptance”, “knowledge”, and “support”.  The word across the palm reads: “Autism”.)  This image is the property of the author, and should not be used without permission)
I do have a store on Zazzle with this image, and all commissions from the purchases are sent to the Autistic Self-Advocacy Networkhttps://www.zazzle.com/autismacceptance

​I’m having a hard time with this post, because I feel as though I have several points to make and while they are all connected, I don’t want any of them to be muddled by the others.

It’s April, and for families of people on the autism spectrum, things get a little more difficult.  It’s not because we don’t want awareness, but it’s more that what we really want is true change for the other 11 months of the year.

Blue lights won’t change the fact that society expects my children not to stim.
Blue lights won’t eliminate the barrage of sensory-overloading stuff that hits the boys and me every day.
Blue lights and awareness walks are NOT going to guarantee that my kids have services throughout their lives.
Blue lights, awareness walks, and puzzle piece logos are not going to ensure that my kids feel successful in their lives, nor will they guarantee employment opportunities or housing.
None of those things will guarantee that the local constabulary has any freaking concept of how to approach people on the autism spectrum or with other cognitive differences.
None of these things guarantee a life where my kids are understood by the world. And this branding of autism in a neat and tidy puzzle-piece-shaped package is certainly bound to drive fundraising efforts, but that is only a good thing if the funds which are being raised are actually going to advocacy and therapies and jobs programs.  A friend of mine did bring up a valid point, however.  The branding of something and the one-stop shopping of a website that many people have heard about and the awareness walks do bring the subject into the light for those who do not know what autism is or how it affects people. And this makes for an interesting introduction.  Five years ago, I had no idea what it was.  And while I might be vaguely aware of it had I not had children on the spectrum, I wouldn’t have really paid too much attention to the issues surrounding a lifelong difference from the rest of the world.

So where do we begin, in an effort to move past mere awareness and into understanding and- dare I dream- acceptance?

I have a few ideas on this matter.  I know you’re shocked by this…

Step 1) Find an alternative to the blue lights.  It negates the many girls and young women on the spectrum who go undiagnosed because autism presents differently in girls than it does in boys.  I’m not saying awareness is bad, but awareness only goes so far.  And when clinicians can’t even figure out how to diagnose girls with autism, then the blue lights are clearly sending the wrong message.

Step 2) Talk to people who are autistic about what they want, rather than making assumptions. The advice that follows below comes from a place of seeing what impacts my children and some of the people who I know, but I can’t speak for everyone.

Step 3) We need education for anyone working with the public- teach police officers, EMTs, teachers, civil servants in general what autism can look like, what is at the root of certain behaviors, and how to support people in the best possible way.

Step 4) Inclusion, inclusion, inclusion.  It matters how children see those who are different.  I am not in any way saying we should teach children to ignore differences, because that’s the wrong idea.  What I’m saying is that it has proven successful to have integrated classrooms, and that the integration benefits everyone.  Children who are neurotypical grow up seeing their peers as just that- peers. They don’t see them as “that kid who stays in the special ed room all day”. That’s how it was when I was a child, and kids are cruel to those they don’t understand. Actually, so are adults for that matter. The IDEA (Individuals with Disabilities in Education Act) is currently under threat and we must fight to maintain rights for all students to an equal education.  I found some really positive information in this article about classroom inclusion.

Step 5) Did I mention inclusion?  Well, it needs to happen in the workplace as well.  Here’s the thing about people on the autism spectrum; many are good at repetitive tasks and at spotting minute differences in things.  It is common for people with autism to have something that they are passionate about, and they will put their whole being into studying that passion.  There are so many amazing qualities that fit incredibly well into many companies.  Fortunately, some of the larger corporations are starting to understand this, and are adopting programs for hiring people on the spectrum.

Step 6) I suppose this should be step one, actually… we as caregivers need to sit down, shut up, and let our loved ones be the tour guides.  They have a LOT to tell us, whether verbally, spelled out in fridge magnet letters, pointed to on a PECS board or typed out on a laptop.  They have a lot to show us about the world, about what they want from that world, and about what they are willing to accept.  Trust me when I tell you, my children are much better at telling me what they need than I give them credit for much of the time. It’s just that we, as all-knowing ADULTS have a wee tendency to decide we know better.  Sometimes that is true (look both ways before you cross the street to check for cars, etc), but other times we can actually get in our own way.  When we look at the “why” behind a behavior, rather than simply trying to put a stop to said behavior, things are going to go much more smoothly.  And while no blue light can guarantee that, I can.

Step 7) Public spaces have got to be more “friendly”.  By this I mean let’s take a long hard look at things like lighting, smells, number of people in a small space, weird sounds, and overall volume.  These are all things that can make a space utterly intolerable.

Step 8) How we interact matters.  Tell me something, Mister April is Autism Awareness Month, when you greet someone for the first time, do you put out your hand for a handshake and expect them to look you in the eye?  Are you wearing Axe body spray or heaven help me, Polo cologne?  Are you standing just too close or expecting the other person to use a quieter tone of voice when they say hello back to you?
Yeah.  You’re doing jack squat for being aware of anything beyond your bubble.  First of all, it really is cool to ask whether a handshake would be okay.  No, that cologne does not smell good, nor should you have used the scented shampoo, body wash, and deodorant to go along with it.  Please take two steps back, and yeah, I’m using my “outdoor” voice because if I’m autistic then chances are I may not have the same sense of volume that you do. I’m NOT going to make eye contact with you- that’s me talking now. Did I ever tell you about the boy who held my face still and forced me to make eye contact with him until I cried?  I was about 15 at the time and we were dating. I was forever altered by that interaction, and carry the emotional scar as a reminder of who I am and what I can or cannot do. And eye contact is very painful for me until I’ve had a chance to really sense who you are and what’s behind those eyes.

Okay.  That’s a lot of information.  Let’s take a step back and change tone for a moment.

I have to say that I’m incredibly thankful for some things.  First of all, that I have a partner who gets what I mean when I tell him that all of “this” is my fault.  He loves and supports me, with all of my oddness, and helps me to celebrate the great things too.
I have a job in an agency whose vision is a world where all people know they belong.  I mean, come ON, that’s awesome.
I run the Autism Lending Library which is pretty much my calling. And I get to help families find funding for the various equipment, recreational experiences, and basic needs that come along with raising someone with a developmental disability.
I have really incredible friends who keep telling me they want to keep learning about this stuff and who don’t say I’m crazy when I say I’m going to write a book.
Did I mention that I’m going to write a book? Apparently? In all my free time…
And more than anything, I’m thankful that even though organizations like Autism Speaks has a very very long way to go, they are starting to flip the script.  And if you know anything about raising someone autistic, you know the script is all there is some days.