A couple of years ago, I was surfing the internet when I came across a quote from Dr. Temple Grandin (American professor of animal science and Autism spokesperson). She said: “If I can snap my fingers and be non-autistic, I would not. Autism is part of what I am”.
One of my sons and I talk a lot and Autism is one of those topics we have discussed in the past many times so I wanted to know if he felt that way, so without telling him about this quote I asked him back then: “If you could take away the Autism, would you?” His response was an unshakeable: “No, if the Autism goes away then I will no longer be me”. It was almost the exact same sentiments Dr. Grandin shared.
So I heard his reply and then I continued listening. He explained how even though Autism causes certain challenges and he wishes he didn’t have those challenges, he loves the way his mind works, thinks and he does not want to take that away for any reason. He also said that even though being neuro-typical is perhaps easier in order to fit in in this world, he does not want to compromise the way his mind works because he likes the way he analyzes things and see other angles/perspectives.
It is one of those topics that I thought many times during my almost 20 years of limited experiences with Autism. There is no one fit all kind of answer, every person who has Autism thinks and reacts in a different way about the same issue just like two neuro-typicals would react.
There was this ad from Apple highlighting this non-verbal teenager with Autism called Alex who communicates using a computer device. He explained what was like to live before his family was able to realize he could communicate through this manner. He had these rubber animal toys he plays with, little horses, dinosaurs, etc. He explained that before his loved ones realized that he could understand everything and he was able to learn how to communicate through the computer, life was hell. Because no one was aware that he could understand everything around him, he had no choice but to create meaningful relationships with his animals toys.
When I heard this, I broke in tears. We are talking about a teenager forced to create meaningful relationships with inanimate objects. Think about it. And I thought how many children and adults with Autism are going through the exact same experience right here in T&T?
I think few people realize that the greatest challenge faced by those on the spectrum comes from the lack of resources that can help improve their lives so children like Alex can actually build meaningful relationships with other people and not forced to do it with rubber dinosaurs.
Just a few days ago, I was making some phone calls and talking to a lot of members from APATT to find out how things are going with their children. I love doing that. Wonderful parents, a lot of them single moms working all day and trying to make ends meet. Most of them have children who are either non-verbal or their speech is very limited. A large number of them are unable to use the toilet on their own.
These are the people I specifically have in mind in my work as an Autism Activist. The ones I think about when I meet heads of government or I go to do interviews and share their plight. I am not afraid to speak up and state what is fair and what is unfair. As someone told me recently: “Injustice anywhere is injustice everywhere”.
When I talk to those in power that have the ability to make a difference/impact in the lives of Autism families, I think of children like Alex in the Apple video creating meaningful relationships with toys… and of single Autism parents working as vendors with their children in-tow because they have no one else to see after their children.
This is the side of Autism families that regular folks do not know about but those who work in organizations like APATT know very well. It is not easy to hear those stories.
It is most likely, that perhaps my own children will not benefit from any of the services that APATT is advocating for. One of them has already turned 18. And even though, it is sad to know that… I would like other parents and families to have the chance to help their children and make their lives easier and more manageable. So life can be more about spending quality time with them than worrying about how they will pay for therapy and schooling. No parent should have to ever worry about those things…
True Activism is about being human it is about justice, and it is about love. It goes beyond yourself, your children or your situation. It is a forcing drive that wants to see meaningful, long-term changes for the benefit of others.This drive gets you to take days off work without being paid to do it so you can talk to X person that might help in making a difference in the lives of other Autism families…
True Activism is about sacrifice when you financially support your organization all on your own, with your meager income so that when you do get a donation it isn’t wasted on organizational structuring or salaries but it can go entirely to help Autism families in need…
I do not want to see any more children like Alex forming relationships with rubber toys…no more. I want children like Alex to have a chance just like everybody else.
Just a CHANCE…
