I am not a good advocate, I used to be but not anymore. I have a numerous reasons why and it starts with the simple fact I am an not an exhausted autism parent. In fact the only reason I am ever exhausted is choosing not to go to bed at a decent hour some nights. Plus I have three children I have to adjust my mind for and each I have to parent a different way but autism plays a small role in that.
I am not a member of any online groups with a negative title such as Autism Sucks or Exhausted Autism Parents because the title of some of those groups turns me away before I could ever participate in them. I am not trying special diets, anymore, or concerned about food allergies although if my son would eat a bigger variety of food other than pizza, peanut butter, and cookies, who knows I might discover some. I am not concerned about where he falls into the social order as long as we see some form of progress and even the smallest win is good enough for me. I am not concerned about what people think he should be doing because what people think is irrelevant.
I don't engage in cause debates anymore because I know what the cause was in our lives and I don't need to debate it. I am not pro-vaccine or anti-vaccine because picking a side is impossible when you weigh all the arguments. I don't tell people my son is autistic unless they ask because it shouldn't matter and it never does until I say it. I am not bothered when people stare at him because people tend to stare at things they are trying to figure out and I don't take it personally. I smile and go about the day knowing they have zero impact on tomorrow and knowing 95% of the time they aren't trying to offend me or my son.
I have no complaints or concerns about my son's behavior and the reality is he impresses me daily with his sense of humor, kindness, and never stop trying way of doing things. He can speak a little and I was told without 40 hours of therapy a week that wouldn't happen, but it did and a little is a whole lot better than not at all. He is 4 and not potty trained but I consider all of the amazing things he has accomplished and I know he will accomplish that as well with time. If it doesn't bother me to wait until he is ready than it shouldn't bother anyone else. He is not violent to others or himself and I have never seen a hint of that ever being an issue and he is extremely sensitive to how others feel both emotionally and physically.
There are two things that actually do still bother me when the topic of autism comes up and the first is when someone assumes he isn't paying attention. Treating him the way the autism stigma has taught them to. By that I mean they might think he can't emotionally connect with them or they are afraid to try because they have been taught by the definition of autism he could meltdown or he might be to disconnected to try. To Distracted? Yes, that is a fair assumption but disconnected, absolutely not. The second is when someone says to me "Kids with autism grow up to live "normal" lives all the time." Always said to be encouraging and it is a positive statement, depending on if a "normal" life is the goal. I don't know what a normal life is because I personally have never had one or know anyone who has. I suppose it would be living independently and finding a 9 to 5 job like the rest of the us but when I picture my son as an adult a normal life isn't the first thing that comes to mind that I want for him. Happy is the first thought I have no matter what kind of life takes him to it.
