April has become that time of year when you tend to hear the word “autism” a lot more often than usual. Since April is Autism Awareness month, that shouldn’t surprise you at all. I’m sure you have probably heard or read more autism stories on your social media, news stations and even in those conversations around the water cooler. For the most part, most of what is shared during the year regarding autism is all the happy stuff, like the autistic boy that scored the winning basketball shot, the police officer that helped the autistic teen find his stuffed bear or that amazing autistic young lady who just graduated with her law degree. These are all great stories! I love sharing them with others as a way to showcase these amazing individuals and it’s always a good feeling when you can share a happy story. But what about the other stuff?
What you have probably not seen shared a lot are all the stories of those individuals with severe autism.
You may not have seen the video where it took two grown men to hold down a teenager who was having a melt down and hitting himself in the face so hard that he had busted his own lips open. You probably haven’t heard many stories from moms and dads who are emotionally exhausted and financially tapped out but continue on without complaints. Have you ever thought about the non-verbal teenage girls who still don’t have the motor skills to go to the bathroom alone, yet still have to deal with menstruation cycles just like every other female on this earth? You may not understand what is happening if a parent told you about how their 20-something year-old son will start to bang his head on the wall if he doesn’t eat the exact same meal every night.
Why aren’t these stories shared year round as well? The answer is easy enough. These aren’t “feel good stories”. These don’t make happy Instagram posts. This isn’t a Facebook perfect view of our world but it’s this ugly side of autism that needs to be shared the most. Autism Awareness Month allows the autism community a better opportunity to do just that because this is when people seem to feel like it is okay to ask the hard and awkward questions.
Sometimes these other stories do make the news but only if it is completely tragic. One terrible event I remember is the shooting of Charles Kinsey, a 47-year-old mental health worker. His 23 year old patient had wandered from the group home and Kinsey found him sitting in the road playing with a toy truck. The police arrived, responding to a call about a suicidal man with a gun sitting in the street. Police said he would not comply with their instructions. Kinsey tried to explain the situation to the officers telling them that his patient was not armed that it was a toy truck. Kinsey was shot instead. The cops didn’t believe that the man had a truck in hand because that is not “normal”. They didn’t recognize or understand that man had special needs.
Education and awareness may have saved Charles Kinsey’s life.
I came across an article the other day that started out as one of those “feel goods” but by the end of it, left me feeling a little hurt and guilty. Yes, guilty! I almost felt like I had been personally attacked in the article. I guess I must be super sensitive this week or something. Whatever the case, since reading it, I have been unable to get it off of my mind. So, maybe the best thing would be for me to just address what it is about this article that bothered me so much and what prompted this post in the first place.
I promise, this is not about calling out an individual, but I do feel a certain responsibility to stand up for the rest of us moms and dads out here. For the most part, the article was good. Short summary; a young boy had been diagnosed with severe autism as a toddler. He had seizures, digestion problems, and several other medical issues. The doctors basically told the parents he was just autistic. Sorry about that, nothing you can do.
His mom didn’t listen to the doctors, she listened to her heart and she never gave up. I love that!! She recently learned that her son wasn’t autistic after all but instead has an autoimmune disease. It was this disease that had been causing the autism-like symptoms. She had been right all along!
So far, I am with this story. I am a fan. I’m digging it.
Then she goes there.
Then the article makes a left turn. It begins by sharing how she no longer has to pretend to celebrate autism with walk-a-thons and t-shirts. She talks about how all autism cases must be medical misdiagnoses. She then implies that we parents and the doctors know this to be the truth but ignore it because it is taboo to say otherwise.
Okay, first of all, I’ve run many 5Ks for Susan Komen’s Race for a Cure. Not one person there was celebrating breast cancer. We were celebrating the survivors and remembering those who had passed. We were bringing awareness to the public about the importance of mammograms and self breast exams. I have also participated in events for colon cancer and prostate cancer. I have done walk-a-thons for Multiple Sclerosis. In none of these events were we ever celebrating the disease!
Um, so who the hell is “CELEBRATING” autism? Not anyone that I know!
Autism awareness month is NOT and NEVER HAS BEEN about celebrating autism! No one is “glorifying” autism. Autism awareness month is about giving a voice to our children. This month gives parents and caregivers a platform to bring awareness about what has become, in one generation, an epidemic. We use this month as a way to educate people, to share what it really means to have autism, and what it means for the families. We are not celebrating autism, we are celebrating the amazing people our children are. Sixty years ago, people thought autism was the mother’s fault who must not have loved her child enough. The term “Refrigerator Mothers” was an actual doctors’ diagnosis. Twenty years ago, most of what people knew about autism was what they got from the movie “Rain Man”. Ten years ago, most people who saw an autistic child would sneer at the child and tell the parents that their kid just needed a good spanking.
Education. Awareness. Acceptance. THAT is what Autism Awareness Month is about, not a celebration.
Ah, and acceptance. Let me address that word, too. Acceptance in this case DOES NOT mean that we want the world to look at autism and say, “Oh ok. Autism. Gotcha. Fine, whatever.”
No, autism acceptance is not passive at all.
During a 2016 Ted Talk, Julian Maha with KultureCity said this regarding the differences between “awareness” and “acceptance”. “Awareness always gives you an out. Acceptance is proactive and forces you to look at solutions rather than the problem.” He then goes on to give the example, “If I tell you your house is on fire, that would be awareness. What you choose to do about it is acceptance.”
Acceptance leads to inclusion and inclusion opens the entire world up to those living with autism.
In another Ted Talk, Julian Maha shows how to go a step further by moving from “acceptance” to “inclusion”.
So no, I’m not “celebrating” autism during Autism Awareness month, but I will celebrate my child as he continues to overcome things that you and I could never really imagine.
I think it was at the point in the article when she implies that parents just accept the autism diagnosis to be just the way the cards were dealt to us. This was when that old familiar feeling started creeping in on me again. I could hear the mean self-talk in my head again. “Your fault!” “You haven’t tried hard enough!” “You did this to him!” “You gave up!” All the old, hateful words that I thought were gone came rushing back to the surface like a flood. I felt as if I was the one being called out for not having found the “real” ailment to my son’s autism. This is what has eaten at me since reading the article and why I felt so strongly to post about it.
I promise, I get it. Her child had been misdiagnosed for years. She is pissed and has been through hell and back again. Now she wants to help other parents so they don’t suffer the way her family has. I guess you could say, she is sharing an awareness regarding autism too, right? I understand all of this, but please don’t assume to know what other parents have been and are currently going through. Don’t shame us because our children are still diagnosed as autistic. Don’t shame us because our story hasn’t turned out like yours.
Look, acceptance doesn’t mean that we parents are passively standing by and thinking that our child’s circumstance is something static and unchangeable. It doesn’t mean that we have given up and believe there is no hope for our children’s future. It doesn’t mean that we have rolled over and given up, but damn it, some of us are tired!
My son is 22 years old. He was diagnosed in 1999, almost twenty years ago. In those twenty years, I can promise you that I have exhausted every single avenue I can think of trying to find another medical reason for my son’s autism. Years of my own research, all the tests, the doctor visits, more tests, always praying and hoping that it wasn’t autism. We changed diets, we removed entire food groups thinking that maybe it was bleeding gut syndrome or celiac disease. We tested him for heavy metals and mercury poisoning. I sat with him for hour-long sessions in a hyperbaric chamber for an entire summer because “trusted” studies showed that would be our answer. We traveled out of state for visits to DAN doctors and specialists. Thousands and thousands of dollars we have spent, always hoping that this was the doctor who had the answer or that this was the test that would show us what the “real” problem was and tell us he’s going to be okay, no autism here, folks!
So for me, Autism Awareness month is an opportunity I use to celebrate the accomplishments that my son has made. Like the fact that yesterday, he got his driver’s license. Something that I used to wonder would ever be a possibility. I’m celebrating him this month with others by posting his jokes on Instagram and Facebook because he is funny as hell!
Taylor is what I celebrate! I don’t love the autism. I love my son.