April, in the United States, marks the beginning of Autism Awareness month. And April 1st, aside from being April Fool’s Day, is World Autism Awareness Day. However, I would kindly ask you to not include me or my daughter. Rather I would tell you this- autism acceptance does not need a day or a month. It’s 24/7-365. I am not an “autism warrior mom” – kindly do not speak of me as such. I will very loudly and proudly say it: Autism Speaks and Jenny McCarthy do NOT speak for me and my family.
Now, I will admit, I wasn’t always this way. Yes, I’ve always been my daughter’s advocate. And I will continue to embrace my role as such. First and foremost, she is still my daughter. So when it comes to that piece, nothing has changed.
So what changed?
I learned, I researched, I got educated about certain organizations. I was already pretty informed about Jenny McCarthy though.
So is there a reason that I don’t support Autism Speaks?
Because, quite frankly, they don’t support autistic individuals so I will not light it up blue.
So who do I get started on first without this sounding like a whiny rant filled post?
I’ll start with Autism Speaks.
Do you know why they ask people to “light it up blue”? It’s because, for them, blue represents the boys on the spectrum. But what about the girls? I know first hand that there are girls on the autism spectrum. I’m raising one.
Just as non-verbal autistics are seemingly underrepresented when it comes to “Raising awareness” – girls often fly under the radar. True, yes, more boys are diagnosed than girls. And I was certainly on board with “lighting it up blue” for the month.
Now? Not so much.
Autism speaks is also on my naughty list because they don’t really do much to directly support or assist families. Where is the money going? I haven’t seen a penny, that’s for sure. So when you’re making your donation with the best of intent, I would encourage you to reconsider. Instead, try one of these:
- Look for a local organization or charity
- Maybe National Autism Association
- Autism Women’s Network
Or, if you’re looking to support a parent, try one of these ten things.
At one point, Autism Speaks was very much supporting and behind the autism-MMR connection.
And, if I told you that autism speaks was funding eugenics? What would you say? As you may imagine, my reaction to that was one of disgust.
I don’t need autism to be eradicated. My daughter is fine the way she is.
So, that brings me to Jenny McCarthy.
She’s made claims in the past that her autistic son is “cured” and I am quick to call BS.
Because, by saying that there’s a “cure” for autism- you are implying that autism is a disease.
And it’s not.
Autism is a neurological disorder. The exact cause(s) are still unknown but research points to any number of factors. Environmental and genetic being towards the top.
But a disease? No.
Jenny McCarthy was also one of the champions behind the Autism-MMR connection.
The “research” behind this claim has since been proven false.
And yet, there was no issue of any sort of apology for misleading and putting the fear into parents. There was no sort of remorse or anything similar when it came to those claims. Jenny McCarthy has yet to speak about spreading false information.
And while she could have done so, she has chosen not to.
So I would kindly ask you, because I am not looking for a “cure” – do not call me an autism warrior mom. Do not “light it up blue” and do not ask me to spread autism awareness.