I am his voice but I don’t speak for him.

I started thinking tonight after I read some comments regarding autism. One mums work was taken out of context by another page and one of the comments on that article was rather hurtful. The lady who commented said something along the lines of people with autism are getting sick of being infantilised. This has had me thinking hard.

Now, we live in an autism bubble. As a parent there is not much else I think about as deeply as my son and his autism, and as that parent I am always looking at him, trying to figure out what he needs from me to make his life easier. What I have seen tonight and at other times is parent being chastised for doing what they think is right for their child. Making it about them. It is about us. It is about our children. They are our children. They are our responsibility and the decisions fall on us. Of course it is different if the child can communicate; Sam lets me know the basics of what he needs. Tv, food etc. But the big things; they are down to me. Until he can tell me what he needs or what is best I will be his voice. I won’t speak for him as I do get things wrong from time to time. I interpret the best I can. So as I was saying before about being in a bubble I got to wondering are our children in the bubble with us? Autism to them is who they are. It’s their norm. Obviously their difficulties are varied but only they are in their heads. We as parents are there to hold hands and keep safe but ultimately the only thing we can do is educate ourselves. Which autism parents know how to do very very well, and we attribute what we learn to our own children. Ours! And while everyone is entitled to their own opinions it does not mean we are wrong in ours.

Back to the bubble (for maybe the last time, not sure yet 🤔) So once we get into our bubble we learn, and then we try to educate. I follow three people who have autism. They are the ones I go back to to get a possible point of view thy Sam can’t give me yet. And many more I follow have a child with autism. Awareness of autism is spreading exponentially every year, and it’s down to all of these people. Autistic or not. They are spreading the word the only way they know how. Through personal experience. I have a very small amount of readers to my blog. Others have thousands. I know for sure that I have made people who had no idea what autism was, aware of it’s characteristics, and I did that through my interpretations of my son and our family experiences.

While it is undoubtably about Sam it is equally important our feelings are validated for they are just as real. And as a good parent/advocate they have to be, because we are in this together. I might not have autism but I am raising my son to be able to have his best life and no parent should feel sorry for the way they portray their families lives. Because without these people advocating every day the world of autism would be a quieter place.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s