Our journey in the Autism Spectrum

[Ed. Note: Alternately titled:  Cant’ We All Just Get Along?!?]

April 2, 2012. Today is World Autism Awareness Day.

Our house lit up blue last night and will continue throughout the month of April….and probably beyond as we did last year. All of our family is wearing blue with puzzle pieces today.  Lucy and I even have our fingers and toes painted blue. I will wear my autism awareness jewelry that I have acquired over the last year. Ultimately, today is not that much different for us than any other day.

But I wanted it to be different.

This year Henry actually understands that HE has autism. His little sister, Lucy, understands that this year as well.

I wanted it to be so much more for us this year. I have felt an urgency to DO more. But at the same time, I’ve been overwhelmed by it all and in turn unable to do much of anything. Most of all, right now I feel ANGRY and it’s not because my son has autism.

It’s upsetting for me to hear folks in the autism community arguing amongst ourselves about what causes  autism, treatments and therapies, which organizations to support or not to support. Actually, I’m pretty pissed off about it.  I’m sick of hearing the bickering, the ugly words exchanged. Who is right and who is wrong. Banning folks from Facebook pages, loudly “unliking” a page because we didn’t like something that was posted there.  It’s turning me off. And when that happens I want to shut down and walk away.

Inside me I am screaming at the autism community.

Can’t we all just get along, people!?!?! Don’t you see that we are ALL correct?!?! That there is no right and wrong? We’re in this TOGETHER and if we don’t stick together then where the hell does that leave us?

“Sticking together” doesn’t necessarily mean we all have to agree on everything.  There are a lot of folks in the autism community saying things that I don’t believe in or agree with. But, dammit, if their kid(s) have autism or if they themselves have autism (or sometimes BOTH!) then can’t we support them in their right to say what they want and to support who they want?  We don’t have to tear each other down or tell them we think they’re “wrong” and  that we’re “right”.

It shouldn’t matter that we all may feel differently about HOW we think our children developed autism or that we may have different ideas about “cures”, “treatments” and “therapy”.

Whether you believe the CDC’s recent numbers regarding autism or not, whether you support Autism Speaks or The Autism Society of American, or perhaps a local organization closer to home, does it really matter when it comes to our kids?

As Jess at Diary of a Mom says, “Autism is one word but there is no one autism.”

Nor is there one cause, one cure, one treatment, one therapy. There is no one color, one religion, one culture, one belief…

We should each be able to  promote OUR autism in any way WE want! And we must be respectful of  OTHERS that are doing it in THEIR own way! We should all be able to light up our homes in any flippin’ color we want! Or don’t light it up at all!

In the autism community we shout at the top of our lungs for others outside the community to be aware of autism, be aware of the differences in those on the autism spectrum. We want the world to accept those differences!

How about we practice what we preach, people?!? Let’s show the world BY EXAMPLE, shall we? We don’t always need to agree with everyone on every idea or issue. But we DO need to be RESPECTFUL, both in our support or in our disagreement.

Today is World Autism Awareness day. April is Autism Awareness month. I want MY autism community to RESPECTFULLY support however we EACH choose to promote and support OUR own autism. THAT is what makes us a true COMMUNITY.


Comments on: "My Official World Autism Awareness Day Post (and it ain’t pretty)" (15)

  1. caffeinatedautismmom said:

    Yes, ma’am. Agreed. I certainly have some very strong opinions. If someone doesn’t agree with me, I may try to do a little convincing, but I will not ostracize others if they don’t share my particular views. We are all on the same side – the autism side. Fighting amongst ourselves isn’t going to accomplish “the big picture” stuff. Thank you for sharing this post today.

  2. I agree with you. But unfortunately this is one passionate group of people. They are defensive and tired and have been through tons. They already have their guard up and its hard to get people to back down. No one wants to. No one wants to be wrong.

    But no one is wrong, per se, it’s just that we all have different opinions on how it should be done. And what folks need to realize is just because it works FOR THEM it doesn’t mean it will work for others. Even if it did cure your brother’s sister-in-law’s next door neighbor’s college roommate’s kid.

    • YEP! For sure we are a passionate bunch! And believe me, when I’m worked up about something, I can really get WORKED UP about it! Here is where I try to take a lesson from my son’s “Options Map”: When I feel angry or frustrated I can____________ (choose an option(s) from the map) (1) Walk away, (2) Take deep breaths, (3) Count to 10, (4) use my words…etc! 😉

  3. So well spoken. Thank you. Arguing is about who is right. Discussing is about what is right. We are all feeling our way in the dark. When it gets lighter, then we will all see. Support each other!

  4. Well said!! It’s a wonder that you have such a hard time expressing yourself…

  5. Anonymous said:

    I have mixed feelings about this post. On one hand, I agree that we should all be more cordial. On the other hand, those selling snake oil to desperate and often cash-strapped families are doing *harm* to those families (funneling resources, wasting precious time), so it’s not just a “live and let live” proposition. I love the sentiment, but in reality, I’m not sure it actually benefits our cause or our kids, and it might do real harm.

    • I do agree with you, Anonymous, regarding “those selling snake oil to desperate and often cash-strapped families are doing *harm* to those families…” and I think we can RESPECTFULLY explain why we may disagree. It’s OKAY to disagree and verbalize that disagreement for certain! It is the way that it is done makes all the difference. 🙂

  6. i agree so much with EVERY thing you said!!! applauding you right now!

  7. GREAT blog. I wish all would agree

  8. Very well said!

  9. Karen….beautiful words…..well done my friend!!! So proud of you!!!

  10. […] on World Autism Awareness Day I posted this. The reactions and responses were overwhelming! That post received 269 views yesterday alone. I was […]

  11. […] A year ago, I wrote this.  And here we are again. It’s April. Autism Awareness Month.  Sadly, what I wrote last year still feels very true to me today.  I’m disappointed. It makes me anxious and sad and tired. […]

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