In at #3 for posts written in 2016 – a post that was not written all that long ago….

 

Not the ‘Real’ Autism?

DC was agitated all last night. He gets agitated often but these days it does not seem to last as long as it did when he was younger. It usually comes and goes in bursts and then it is over – sometimes not, but for the most part now-a-days, it does not last too long unless something is really bothering him.

DC and my conversation last night:

DC: Mom, come here.

Me: What is wrong?

DC: Nothing wrong. I feel all right.

Me: You don’t feel well?

DC: (Getting angry) I feel all right! Behind me!

Me: What’s behind you?

DC: (Still angry) NOTHING BEHIND ME! I feel all right.

When he came back downstairs, still with that look in his eyes I asked;

Are you sure you are all right?

DC: Behind me!

Me: Does your back hurt? (I checked his back – there was nothing)

DC: NO!

Me: Is your back itchy?

DC: NO! I fine!

Me: DC are you sure you are feeling okay?

DC: YES!

Worried that he didn’t feel well I told him to rest on the couch with his ipad.

One of the many things that I worry about is DC having something medically wrong with him and I will not be able to tell.

Unless he has a fever, vomits or passes out right in front of me (try catching a 200lb boy at 3am) there is really no way for me to know. He doesn’t really let on when there is a problem and when there is, his behavior is pretty much the same as it always is. I don’t know if he doesn’t feel pain like the rest of us or he just doesn’t process it the way we would expect. This guy can run full speed with a sprained ankle!

When he got settled, I tried again.

Me: DC, you know that it is very important that you tell me if anything ever hurts. If your head hurts, if your stomach hurts, if your tooth hurts or anything else hurts, you always have to tell me. Promise?

DC: Yes, I promise.

Me: Tell me what you are promising to do.

DC: I promise never to hurt. 

Me: DC, every one has hurts some times. If something is hurting, you have to promise to tell Mom.

DC: I promise.

Me: Tell me again what you are promising.

Blank Stare…

Me: What are you going to do if your stomach hurts?

DC: Go to the bathroom.

Me: Okay…. but what else?

Nothing…

Me: You are going to tell Mom. What should you do if your head hurts?

DC: Rest.

Me: Good, and what else?

Nothing, again and I had to prompt him to say “Tell Mom”.

 

I keep seeing posts on line talking about the ‘Real Autism’. How my child being happy is somehow doing a disservice to the autism community. I will never apologize for my child being happy. He is, for the most part a happy guy. He’s funny and certainly a charmer and he knows how to use those charms to his advantage. When he does something like tape the sides of  his mouth with scotch tape to keep a smile on his face, it is funny but it is also impressive to me that he came up with it.

I find it much easier to explain autism, HIS autism by telling specific stories about how his mind works, the things he does or says, the many things he is obsessed with, his likes, his dislikes and some of the issues we face. At times I will use humor to tell a story because at times the situations are funny.

The fact remains that he, an adult, can not even communicate to me when/if there is something wrong or something bothering him.

No, he may not be a 25 year old in a diaper but..

my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

What about this is this not ‘Real Autism’? Everyone is different, DC’s autism is certainly different than your child’s without a doubt. Different does not mean ‘Not Real’.

Even with all that DC has accomplished over the years, the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings and will long out live all of us. He will at some point have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers.

Even though I try to write in a more upbeat fashion, I think I have made this point perfectly clear over the years.

What about this is not ‘Real Autism’?

We are all fighting on different fronts in the same battle – the battle for our kids to lead productive, safe and happy lives. But I can not write about your child’s autism, I can only write about my child’s autism.

If you are adamant about spreading awareness about the other sides/levels of autism then DO THAT! We need to show the public every single side that we can. Start a blog, write and submit articles to online publications – there are enough of them out there, ask to write a guest post…. do something other than admonishing people for their views and stories.

DO SOMETHING!

I choose to tell our story they way I choose to tell it. It is OUR story.

You have to be the one to tell your story.

There is room for everyone.