“Autism is Something We Are and Not Something We Have.”

Recently, I was sharing the story of my family and saying that my boys had autism and I was trying to be their advocate as well as other families dealing with similar issues. The individual surprised me with their response, which is very interesting since I had not really thought of it from their perspective. 

He told me, “If you want to be a good autism advocate, then you should listen to actual autistic people and change  problematic language and behavior…We don’t expect you to be perfect. We just expect you to listen because if you aren’t autistic, you don’t know what it’s like to be and don’t get to choose what language is and isn’t problematic for us. ‘Person with autism’ makes it look like autism is some kind of illness or accessory that can be put aside. But it can’t. It’s such an important and integral part of who we are. Just imagine someone called gay people ‘people with gayness’.”

I had to take a long pause because I have boys that cannot talk so I never really could understand what they think or do what they do. If I see them meltdown, I know they are upset but may have no idea why. When they are in a rage and go to hit someone I figure they don’t like something or just want attention…this may not be the case and may be more than just seeking attention from parents or caregivers. Granted this person doesn’t know me or my family, but he makes several key points. 

For example:

1. Listen to what autistic people are saying. If your child is nonverbal, it may take more time and patience to find that out, but work at it. I know I have to all the time.
2. The autism is not something that can be separated from the autistic person. It is who they are. I have always thought of autism as something I may have given my child and wanted to find a cure to remove it, but there is no cure that I have seen. Only treatment that alleviates the symptoms. Accept your child as they are and accept other autistic people as they are.  
3. Respect the autistic community for we do not understand what we see until we walk in their shoes. What is the true cause to a meltdown? It has been described as true pain and agony inside. What are the reasons for aggression or self injury? Is it attention or rather something else? We admitted our son into a residential program for 5 months and were informed that his behaviors were all for attention. Statistically that may be the case, but maybe there is something deeper that is not accounted for, which is why we need a greater understanding of the causes for his behaviors. Listening more to the autistic community is an avenue to understand more. 

Lastly, I do consider myself as part of the autism community from my own perspective as a parent and care giver. If I want to be a better advocate then I am sure listening to the autistic community can only make me better.