The unknown world of autism is very scary to me, because it is an invisible disability we have no idea the potential our son will reach. We have to live in our take each day as it comes world.
I am also very scared of the word regression. When people talk about the realisation that their child has autism I find it is followed very quickly by the word regression. I don’t feel that we ever experienced regression with Ethan, I feel that we never even got to certain milestones for us to even experience the regression part. What scares me is that perhaps we haven’t even hit that stage of our autism journey yet! I have read blogs where families have experienced late regression, normally around the age of five. All I can do is keep everything crossed that this regression isn’t in Ethan’s future.
At the moment it feels like Ethan’s autistic traits are starting to show up more and more, I suppose we could see it as getting worse! For example a year ago I did not think my son had any issues with going into shops that he didn’t know. Today I would say yes he does.
Ethan is experiencing sensory overload more and more. Just walking to swimming and getting to the changing room can make him look physically sick. A queue with lots of people he doesn’t want to be near or in will upset him. Getting over excited and not knowing how to control those emotions will make him agitated and upset. The list could go on and we are learning how to handle these new issues as and when we need to.
Ethan needs his routine more than we give him credit for, and does he let you know it if things don’t go the way he expects. Shoes can’t be put on until we are just about to leave the house. When a coat goes on it has to be zipped up. If I’m playing tipping point on the iPad it has to be held in a certain way. If we ring daddy the phone has to be answered, I dread hearing the voice mail on the other end. We have to make sure we finish the circuits that Ethan is used to, for example walking to the shops, the task must be completed. No change of plans aloud! Of course we can’t live like this, we can’t let things dictate our lives, we just have to learn how to deal with the meltdowns that change brings.
Meltdowns and Anger
Meltdowns are now becoming a regular occurrence, it’s a good day if we only have one meltdown. With meltdowns also comes frustration and anger. Ethan takes out this anger on me it many different ways and it’s not nice to be on the receiving end of your sons anger. What makes it worse is trying to help him and not knowing how. You know he isn’t doing these things because he is being naughty, he is doing them because he doesn’t know how to let out his frustrations any other way.
So is my son’s autism getting worse?
As hard as it is I need to keep a positive outlook on where we are in our autism journey at the moment. I believe that as Ethan is getting older we are seeing more of his personality. He is getting more aware of the word around him and is showing us what he does and doesn’t like. Awareness of the world is a very positive step. I like to think that we are going through our terrible two stage, we have even had sit down protests when Ethan doesn’t want to leave somewhere or has had enough. Going through the terrible twos means we are progressing and moving forward in development. Yes it is slow progress but the word progress is so much better than the word regression.
DISCLOSURE – This is a collaborative post written by me and is from my personal experience.