I used to make a big deal out of Autism Awareness Month. Back when I was a more naive, newbie parent of an autistic child, I hopped onto any endorsement of "the cause". We had to raise money, and put magnets on our cars, and buy all the blue light bulbs, and do all the walking. We had no idea what we were raising the money for, or what blue lights were going to do to help our child, or where the hell we were walking to...but if it said "autism", we were there.
My boy is 15 now, and we've been on this path since he was two years old. Maybe even a little before the diagnosis, we had a clue he would be...different. He was a chronically collicky baby. When he first started eating baby food, he would sit in his high chair and look over our heads. Never directly at us. I remember saying, "He's a deep child and he's looking at my aura!" When he was eighteen months old, we went to a restaurant with my parents, and my boy sat in that little wooden high chair for almost two hours, just chomping on some Italian bread. He never made a peep. He was SO GOOD...an older gentleman came over to us as he was leaving with his wife and said, "Excuse me, but I just had to tell you, I have NEVER seen such a well behaved baby! God bless him!"
Yes. God bless him.
So we did all the evaluating, and tried all the therapies, and diets, and schools, and doctors, and chiroprators, and vitamins, and enzymes...and Good LORD, short of selling the house for the hyperbaric oxygen therapy, we tried just about everything to help our boy progress. And he did progress. He still does. He also still has the cognitive ability of an eighteen month old child. My ex will tell you it's because I didn't work hard enough with him. My (then) two year old boy was working for 2 hours a day in a school program, working with (a modern, kinder, gentler version of) ABA therapists, Occupational Therapists and Speech Pathologists for another four to six hours a day, I was driving him all over the free world to see DAN doctors, neurologists, the aforementioned chiropractor, doing blood tests, hair tests, urine tests, poop tests...oh, and I was pregnant with my daughter at the time. So, um...not doing enough? Fuck. Off.
We had a camera set up in his room and when he worked with all these therapists, sometimes he cried. But as he cried, he continued to work with all these professionals. He wasn't being hurt. He wasn't being tortured. He was just annoyed at having to do something he wasn't always in the mood for.
Welcome to the world, sweet pea:)
There were days I could see he just wasn't connecting. He wasn't getting anything out of a particular session. His therapists were all kind and loving women, and they got to know him well enough to recognize those unproductive days and would call it quits early. Or I would send them home. We all need a break sometimes, ya know?
When Early Intervention was done, my boy went to a great preschool, and moved on to a great program for autisitic children in the public school system. Because he was non verbal, and I was home at the time, I drove him to and from school. And then I took him for additional OT for anywhere from an hour to two hours, after a six hour school day. I made animal related flash cards to try to engage him with his favorite things, I spelled words with him in the car on the way home from school and therapy, I did tons of research, and then did more research, and I volunteered at school, and I was president of the PTA for three years, and I ran around like a chicken without a head to raise money for the school, (enlisting our entire family, the ex, his business partner, and everyone we knew), I sold raffle tickets, made prize baskets, attended meetings, voted on how best to spend the money, spoke at graduations, participated in family support groups, and then collected money for all those walks for Autism Speaks.
And to this day, I still hear, I didn't do enough for my boy.
Anyway, fast forward to now. I am older, wiser, and better educated. I am better educated about autism in general, and most specifically, I am better educated about who my autistic son is.
I am also wiser to the evils of certain charities.
So now, when April comes around, I do my best to put together at least one good message with the intention of enlightening the world around me, and opening the minds of anyone I can reach, to see and accept the beauty of my autistic child...to describe his worth as a human being. I think I manage to pull that off.
But am I doing enough?
I recently attended parent-teacher conferences for my NT daughter. As I walked into the school building, there were four boys at a table in the main hallway. They had little blue paper puzzle pieces in a pile, and a can, covered in puzzle pieces, for collecting money. For a dollar, I could put my name on a puzzle piece, and it would be hung around the school. I asked the boys, "Where does the money go?" They told me,
"Um, it goes to an autism charity."
"Well, I'm not really sure, but it goes to one of them."
A few days later, I went into a local grocery store. There was another can, with a multi colored puzzle pattern on top. "Donations for Autism" was written on top. I asked the young man behind the counter, "What charity does the money go to?"
"Um, it goes to an autism charity."
I'm surrounded by benevolent morons.
"There WAS a sign on the can. Maybe it fell on the floor."
It's April, and people are raising money, and they have NO IDEA WHAT THE FUCK FOR!!!
That tells me we are doing something very wrong.
I am not one of those who believes we need to find a "cure". I do, however, believe we need to figure out why this particular neurological state of being is happening on such a grand scale now, more than ever. I do believe we need to see if there is a way we can slow down the future increase in this population. I DO NOT mean to say a single autistic person is less valuable than any other person. But whether you want to face the truth or not, autism makes so many things harder than...NOT autism. Autism and all the co-morbid diagnoses in my son, (mentally retarded, Obsessive Compulsive Disorder, Sensory Processing Disorder), do make so much of his life difficult. He struggles with so much. He will never fall in love. He will not get married. He will not have children. He will not go to college. Up til now, he has never had a friend. Not one.
However, because of all the hard work we have done, (except for me, who did practically nothing...*yes, insert thickly layered sarcasm), because of all the hard work my amazing boy has done, he may someday have a friend. He may someday have a job. But he will always be with me...unless I find an adult home run by Mary Poppins and all her sisters, so my boy will have a place to be when I am dead.
My point here is, if we are raising money, there needs to be a purpose. If there is research taking place, and it needs to be funded, let's determine what it is we're looking for. There are so many functioning autistics in society. I imagine many of these individuals will take offense to the idea of anyone wanting to find a way to make autism less prevalent in the future, but for people like my son, who don't have a lot of options for creating a life, autism can be completely disabling.
If we are raising money, let's concentrate on spending it where it is most desperately needed. Let's provide a better support system for parents whose children are newly diagnosed. Let's create family support programs to assist with acclimating to life with autism. Let's create better job opportunities for the autistic individuals who are capable of earning a living. Let's invest in safe, and adequately staffed group homes for assisted living. Let's invest in ways to help all autistics to live happy, engaging, productive lives.
Let's NOT donate money to another inept "executive's" salary. Let's NOT donate money that will be spent making more blue puzzle pieces. And for the love of all that is holy, let's NOT donate money to any blue can for "some autism charity" with no name.
It's wonderful that there are thirteen year old boys making an effort to do something positive for autism. But the fact that they don't have a clue what they're being positive ABOUT says we are doing this awareness thing all wrong. I, myself would love to be a more involved participant in changing the world and helping people see that autistic people have great value, and while some behaviors may seem strange, there are reasons for many of the "different" things they might do, and they shouldn't be made to feel like "freaks" because they need to flap, or blink, or rock back and forth, or carry a stuffed animal that makes them feel secure, or any number of self stimulatory activity that gives them some sense of calm. I want to be involved in the fundraising, and the raising of awareness. But the efforts have been muddied by folks who have taken charge of a cause they don't understand. People who had the power and the platform to really make a difference have dropped the ball because they are at the wrong game. I don't mean to demonize Autism Speaks, (in the way they seem to demonize autism), because I do believe they have made some great strides in getting the world TALKING about autism. But I have my issues with them.
I would love to know, that someday in the future, a parent won't have to struggle with a child who can't tolerate socks, or a person won't have to feel TORTURED by being in a crowd because he or she can't stand having to look at people, or engaging in conversation...I would love to know that science has figured out why some things are so very hard for these people, and could find a way to make it easier for these folks in the future. But I think all these big, money gathering, fear mongering executives have forgotten, there are people who could use some help right now. Who's raising money for them? Who is finding the funds for the purpose of educating the world and explaining how very valuable these autustic people are? I find it very strange that during Black History Month, there were ads all over TV to educate us all about the great accomplishments of many black Americans, and during Women's History Month, there were plenty of ads touting the accomplishments of women...but in the entire month of April, I have hardly heard a peep about people who are autistic. I find it sadly disappointing that a former television executive who started the biggest autism charity in existence, hasn't taken advantage of that status, and found ways to show the world the love we find in autism...the joy we find in every accomplishment...the amazing things autistic individuals are capable of. Instead of talking about the hardships, and the heartache of autism, and instead of demonizing the diagnosis, why aren't we showing ALL aspects of what it means to be autistic? Where is the money to take on THAT task?
Please don't mistake my meaning here. I am NOT of the "let's hold hands and ALL be autistic" mindset. I am NOT happy that my child struggles through so much of everyday life. If I could blink him neurotypical, with no harm, I would do it in a heartbeat. But since I have no "I Dream of Jeannie" power in my blinking, I wouldn't mind if the world could find a way to understand a little more about my boy, so that when we are sitting in a diner, people don't feel so compelled to stare, or be annoyed because my rocking child is shaking the booth. I try. I really try to help him stay calm when we're out in the world. Sometimes it's hard for him. That's what I would blink away.
But my boy is full of love, and he wants to please his mom, and he is eager to be helpful, and he tries his best to do everything I ask of him. I find the greatest joy in the accomplishments of all my children, and the joy is magnified when the child had to work so much harder than another to achieve something that should've been simple. These are the things I would like the world to be aware of.
I recently watched the Today Show interview, where Matt Lauer (who I don't especially care for), asks Bob Wright about his involvement in Autism Speaks. I believe his heart has always been in the right place, and his intentions are pure. But minds need to open, and people in power need to take a better look at the bigger picture.
*I would like to add, Suzanne Wright is in my prayers as she battles cancer.
Anyway, the main reason for this long ramble is to say, I think people are becoming more aware of autism, but I think we need to do a better job of explaining exactly what it is they are aware of. Or more accurately, WHO they are aware of. Autism is not a THING. Autism is about AUTISTICS. They are people. They have value, and rights, and are worthy of our attention. I love my children. I love my autistic son. I want the world to be a safe and happy place for him. There may be people who think, because THEY don't love anyone who is autistic, they have no reason to know more about autism. But my child is in this world, and those people may someday encounter my child. I will do everything I can to help those folks understand, my child is autistic and he is valuable. In order to help people to be autism aware, they have to be AUTISTIC aware. They need to get to know the autistic people they encounter. That's how we start to make real changes. That's where I will focus my autism awareness energy.