Autism Walk

   On October 27th we will be walking in the Autism Speaks walk in NC. Grammy and PaPaw Hutt are going to join us. I have mixed feelings about the walk and the organization on a whole. Through connecting with other parent's of autistic children and even more so through connecting with autistic adults, I have seen how their campaign tactics can hurt. Autism Speaks relies on a fear based agenda to accomplish fund raising. Even when I signed up for the walk and saw that the main goal was to search for a "cure" so no parent has to hear their child has autism, it rubbed me the wrong way. From an outsiders point of view, this may be hard to understand. You don't want your kid to be autistic, right? To me, and to many adults with autism, this is saying that we want to find a way so people like my son don't exist.

   I am all for research, but I want more research to be done on ways to help autistics who are here now. I don't want my son seeing signs on the side of the road saying the way he is is a tragedy or that autistic people turning 18 is going to be a "tsunami." Think of the footage that you saw with the tsunami in Japan. Is that what my son and his people are?

  Another issue that is raised by autism advocacy groups is that this is a huge organization that does not employ autistics (I think they have hired one since the backlash) or involved people with autism in their decision making. I stand with the saying, "Nothing for us without us." People with autism have a voice, even the ones who are non-verbal. So yes, Autism does speak and it really is "TIME TO LISTEN." If they are going to say that, they need to mean it.


   Am I ok with studies on medications that could he helpful in dealing with some of the traits of Autism that Lukas may have issues with as he gets older? Sure. Wouldn't I love it if some of that money was directed to programs like Early Intervention so autistics could get an even better head start early in life? I would love to see them hire autistics from all parts of the spectrum and include them in decision making. I am not saying we should do nothing for autistics and everything is just bright and cheery all the time. I just think there should be a lot more focus on helping the people who are here, not spending all that money on a cure. I believe my son was born autistic. I believe it is genetic. I think it is just the way he is. Are there people who are more highly affected who could benefit from a cure? Definitely. Autistics themselves who feel they want to be cured have a right to think this way. All I am saying is Autism Speaks needs to tweaking. The current campaign doesn't encourage self love or confidence in any way.

   Yes, we are still going to the walk. I am not 100% against Autism Speaks. The biggest reason we are going is that I often feel like we are on an island. I know no other children in real life who are on the spectrum and frankly, I often feel alone. I am scared of seeing all of those families. I am scared of seeing the kids more affected. This is why it is important to go. Instead of Lukas being the only autistic kid, I am going to be around tons of people who "get it." I think this is an important step on our journey.