Autism Awareness Month brings with it all of the signs, Facebook postings, fundraisers, walks, etc. that go along with that. And I admit that I am at the point where I (like many others) are starting to cringe at the word “awareness“.
Many have said things like, with rates going from 1 in 10,000 to 1 in 50, is more “awareness” what we really need? Many say we need “action”, not “awareness”.
Those are feelings that I have felt also.
We have come to associate “awareness” with inactivity. Why? Well, because the two often go hand-in-hand.
The words “awareness” and “acceptance” have, to many, become dirty words.
I understand that feeling.
I have a lot of strong and passionate opinions on the subject of autism. So much so, that at times, it is difficult for me to write about.
I recently saw where the organization known as Autism Speaks, threw kids like Ella under the bus, jumping on the they-don’t-exist, this-didn’t-happen-to-them bandwagon, and it made me livid. So livid, that I haven’t been able to write about it here yet. I want to. I want to share their nasty quote and tell you all just how much I loathe Autism Speaks. But it’s hard. These emotions run so deep for me. So even this topic today, is hard for me to write about.
But I think it’s important for us to NOT allow the words “awareness” and “acceptance” to become dirty words.
We need to TAKE BACK “awareness”! TAKE BACK the word “acceptance”!
Don’t allow these words to become synonymous with inaction, heads-in-the-sand, and defeated attitudes. That is the path that we are on right now. WE can stop that.
Even the word “acceptance” has been starting to bug me lately. Then I felt hypocritical, because what do I call this blog?
Enduring the Silence: a blog about autism with acceptance, love, faith, and fight. I thought to myself, how can I hate a word, that I put in the title of my very own blog?
But I don’t actually hate the word. What I hate is inaction. What I hate are children being told that they can’t get better. What I hate are children being denied medical treatment, due to their autism diagnosis. What I hate… is a lack of hope and fight.
For many, “acceptance” seems to mean that we just sit back and accept this is the way it is, and they can’t get any better.
To me, “acceptance” means that I accept and love my daughter forever, regardless of what her capabilities are. I accept her quirks. I accept all of the things that she needs to make life livable for her. I accept my role as her warrior mother. Because that’s what we are. We are warrior moms. Fighting a system that tells us that our children cannot get better, and to plan for the worst. A path I have previously dubbed here, “The No Hope Hoad“.
I don’t mind her being “different”. Anyone that knows me, knows that I often say, “We are all weird in our own special ways.” I truly believe that. I’m not out to make her, what society tells us a cookie-cutter version of what a child her age should be. I don’t want that for any of my children. I want them to be strong, independent, unique, and true to themselves.
So I ask you, to reconsider the word “acceptance“. Reclaim it. Take it back from the negative, naysayers.
And what about “awareness“, the other word on the fast-track to becoming a dirty word?
Instead of allowing that to happen, perhaps we should define it like this:
- Be aware that autism is a medical issue, not a mental health issue.
- Be aware that there are real medical treatments that improve the lives of those with autism, sometimes so much so that it results in a loss of diagnosis.
- Be aware that those with autism are currently being seriously discriminated against.
They are being denied medical care for real medical illnesses, solely because they have the “autism” label slapped on them and it’s association with mental health only. In spite of the fact that current research shows serious medical issues in the autism community.
Children with autism often have chronic diarrhea or constipation. That should not be ignored, instead of treated. That is a medical issue. Treat it. Children with autism often have severe allergies. That is a medical issue, that requires treatment. Children with autism often have mitochondrial dysfunction. If you treat it, they show improvements.
These are just a few of the real medical issues, that when given medical treatment, can provide real improvements in functioning and quality of life.
Individuals with autism should not be denied medical care, because of their autism diagnosis.
- Be aware that lack of speech does not equal lack of intelligence.
Those are two completely different things. If you have laryngitis are you suddenly stupid? If you have laryngitis do you suddenly have the IQ of a toddler? Of course not. And neither does a non-verbal autistic person. Please remember that.
As I type this, there are adults with autism, who are locked away in facilities (many of them being abused) that have never had anyone offer them real medical treatment, or even an iPad, to help them communicate in a non-verbal way. Is that fair? Or is that a life worse than a prison, for individuals who have committed no crimes?
- Be aware that 83% of females with developmental disabilities are victims of sexual assault.
(The figure is 32% of males with developmental disabilities.) Are those acceptable statistics? Of course not.
- Be aware that some people seem to be born with symptoms that lead them to an autism diagnosis, and others were not born that way. Some who were not, had “triggering events” that led to their development of autism.
An example of that, would be Ella’s severe vaccine reaction that caused her to loose skills within 15 minutes of her vaccines. Watching your child loose their ability to speak, chew, make proper eye contact, etc. within minutes, is terrifying. Please be aware, that many children were not born this way.
- Be aware that there is real help available.
Not every doctor out there will pat you on the back, give you how-to-apply-for-social-security info, how-to-sign-up-for-ABA-because-it’s-all-you-can-do-it’s-the-only-”proven”-treatment-garbage, tell you not to plan for your child to ever potty train, and to need a live-in facility as they age.
If you have a loved one with autism and are stuck with those sorts of professionals, fight harder. There is hope.