This blog was exceptionally hard for me to write. There will be those that do not agree with me, and that is okay. Everyone is entitled to their own opinion, especially on a topic such as this. I still wanted to share it, but I will warn you ahead of time, it talks about some sensitive subjects. Although these are just my opinions, it’s a huge topic of discussion between neuro–typicals, parents of autistic children, young adults and adults living with autism.
When I first found out about Bella, I did a lot of research online. Some sites might as well have been written in German because I didn’t understand anything it said. Other sites were very informative and helped me understand the more technical side of it all. There was one site that I came across that really just rubbed me the wrong way. Ironically, this site is considered the leading “voice” for autism. It’s called “Autism Speaks”.
In the weeks following Bella’s diagnoses, I read a lot of this site. While there were some helpful links and it did point me in the direction of some other helpful sources, there was something that continued to bother me. It was the way they seemed to portray autism to the public. They had a video posted called “I Am Autism”. After watching it, I actually thought for a moment that maybe Bella didn’t have autism at all. The way they described it sounded nothing like my daughter. The video has since been removed. I wasn’t the only one that felt it mislead people as to what autism really is. I did find the dialog from the introduction and I wanted to share it with you.
“I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.”
The video goes on to play a woman’s voice saying things like “we will fight you” and “you won’t steal our children”. Now, while I understand the concept of the video, it paints autism in such a negative and demonizing light. I could only imagine other parents watching this video and being terrified to have an autistic child. It fails to tell people that autistic children, when given the proper applied therapies and early education go on to live very fulfilling lives. Some even excelling in certain subjects. (Mostly or fully due to having autism) Instead it tries to make you think that every autistic child is cursed to live a life of nothing but sorrow and heartache.
A quick “Google” search brought up many, many sites attempting to show people that the view “Autism Speaks” takes is not the view those actually living with autism feel or think. These sites are run by amazing young people and adults who actually live with autism or asperger syndrome. So I asked myself, how is an organization that ”speaks” for autism saying something totally different than those who actually live with it?
In another video, titled “Autism Everyday”, a woman named Allison Singer, confesses, in front of her autistic daughter, that she’d secretly and frequently thought about driving her car off a bridge with her child in the back seat. She goes on to say that the only reason she didn’t is because she has a “typical” child at home that needed her. While this is awful to me, it is HER story and she’s entitled to tell it. However, the overall tone of the video implies that EVERY parent raising an autistic child feels the same way. That we all harbor these dark and murderous thoughts. It almost seems to try to justify taking the life of your autistic child to put you and the child “out of all the misery”.
The saddest part to me, is that Singer, after leaving Autism Speaks, opened a sister organization called The Autism Science Foundation. She’s openly stated that she was upset with the choices she was given when her daughter was diagnosed and she wants to give parents another option. Millions of dollars of donated money is spent searching for a genetic tie to autism. The hopes of The Autistic Science Foundation and Autism Speaks is to develop a pre-natal test to determine if the fetus will have autism. One can only assume that the purpose of such a test will function the same way as the test for Down’s Syndrome does. 91-93% of all fetuses that test positive for Down’s Syndrome are aborted. This seems to be the goal of both organizations. As one report put it “Singer seems to use the words “cure” and “abort” interchangeably. They seem to think that a cure for autism is to abort the babies that could have it. Therefore, decreasing the number of children who “suffer”.
This, makes me fearful.
Even if they connect autism to genetics, there is such a wide range of functionality on the spectrum. There would be no way that one test could determine the level of autism in a child. After talking with people who live with autism on message boards and in private conversations online, it’s clear to me that these people are fine just the way they are. They all admit to having social issues and some have more trouble than others with day to day activities, but the overall consensus is the same. They are happy being who they are. They wouldn’t change a thing. I know that this is a fraction of those who live with autism, but with what I’ve read online and the people that I’ve spoken too, it makes me wonder how Autism Speaks is so sure they know what people want.
Is having a child with autism hard. Of course. Things get difficult, and stressful and exhausting sometimes. Would my life be better without my daughter in it? Not a chance. I’m sure that millions of parents out there who are raising autistic children would say the same. While there are those affected with lower functioning forms of autism, statistics show that these children were born with other disabilities as well. It also shows that a majority of autistic children are mid-level to highly functioning and given the right support and services can grow up to lead meaningful and fulfilling lives.
The millions of dollars that these organizations are using to create a test that will end some of these lives before it even starts seems like it could do a lot more good going to improve education and resources for families and children who are already living with it.
There are thousands of autistic adults, young people and parents of autistic children out there who simply want the public to see them as PEOPLE. Not someone that is broken, or damaged or needs to be fixed. I speak for my daughter right now because she can not speak for herself. She’s happy. She sees the world differently than I do. No worse, just different. Maybe that’s a good thing. Maybe we need more people who see the world in a way most of us can’t. Maybe that’s why some autistic children grow up to be amazing people who change the way we live our everyday lives. Maybe this is why I would love to tell “Autism Speaks” NOT to speak for me, or my daughter.
If those living with autism spectrum disorders can accept themselves for who they are and their parents and loved one can accept them, then Autism Speaks is not truly listening to the hundreds of voices telling them they don’t want to be spoken for.
Although Autism Speaks is the most popular organization for autism and they HAVE done some good with raising awareness. There are many other sites that give great accurate information on ways you can help your child flourish. The sooner they receive the services they need, the better. We need to do what we can to help IMPROVE the lives of our children, not find ways to get “rid” of them.
The Autism Research Institute- contains a lot of useful information about autism and the applied therapies and services.
The Doug Flutie Jr. Foundation for Autism-helps families who are living with autism. Throws events to raise money that goes back into the community to help families who struggle to afford services for their children.
New York State Early Intervention Program-An amazing program that helps families and those living with disabilities get the education and services needed.
Kirch Development Services Center-a team of doctors and therapist that assist in evaluating and diagnosing children with all types of mental or physical disabilities.
Aspies For Freedom-a website created and run by young adults and adults with asperger syndrome, autism and all sorts of spectrum disorders. They discuss many different topics and voice their opinions on the way autism is viewed and handled today.
A fathers opinion on what these organization are doing:
"I can only imagine if this test had been created years and years ago. All the brilliant minds that are suspected of falling on the spectrum. All the brilliant minds we have today. None of them would have had a chance to change our world."
