Monday, February 18, 2013

An #Aspie dad to #ASD kids

Our family's journey through Autism began 10 years ago with the diagnosis of Autism with my oldest, my only son. I knew, I KNEW, that he had autism. Little did I know then that I know now about how life with him would be.

I knew that many of the dreams that you have of how kids should grow up would be different, but I really did not know how it would be. My vision of the future was empty, not without hope, but without a framework.

Fast forward 10 years, when he is now about to turn 14! (I am old!). He has learned and done more things that I could have imagined he would back then. He still has challenges, many of them, but he is funny, charming and contains an encyclopedic knowledge of the things that he is really interested in. He loves computers and video games, and we connect most when we talk about these things. He is very smart, and when you give him time, he will display his vast knowledge and understanding of things.

He is in high school, where he is finally getting the supports he needs to be able to function well in a regular class. His elementary years were full of schools telling us problems they had with him, we would suggest ways that they could use to resolve them and they would patronize us by pretending to listen. We'd them get calls a week later stating they were still having the same or worse problems. We'd ask them if they did the things we'd suggested, and they would say "no, we can't do that, or we'd have to make all kinds of changes!"

He has been much better in high school. Next year he will be in senior high school, and with individual classes instead of staying with his classmates all day. Sigh... I hope he will do well with assistance there.

Why am I thinking of all this now, when I intended to write about his Aspie sister? I guess it is because his birthday is next week, and I am thinking about him. I haven't written too much about him anywhere until now.

My wife and I were talking about the changes that are coming in DSM V, with regards to the spectrum. I guess I feel the same as a lot of other Aspies, that lumping Aspergers together into ASD with all other diagnoses on the spectrum, just doesn't make a lot of sense.

My son, who has high functioning autism, and my daughter I has Aspergers, are very different. My son needs guidance a lot in order to be semi-independent, but still for the most part stims and lives inside his head. My daughter is full of life, is very interactive and adventurous, and needs guidance to pull her down from the clouds to see the safe paths for things.

My son will most likely grow up needing assisted living arrangements, and he is probably going to be somewhat dependent on us or others all his life. My daughter on the other hand will live independently, but will probably rely on us or others as she faces challenges in a world that just doesn't think the way she does. Heck as an Aspie, I know that from first hand experience!

So, there is a real difference between high functioning auties, and aspies, and I am hoping that these changes don't eliminate the need for help for Aspies, and that rather we look at the spectrum as just that, people with similar issues, that have individual strengths and needs.

I love my son. I love how he has grown and matured. I am excited now about what lies ahead for him instead of afraid to think ahead. His future is in front of him, just as much as any NT kid's is. So Happy Birthday Boo! Enjoy another year ahead!

1 comment :

  1. Hi there! This post so resonates with me! I don't know how I feel about the changes to the DSM V but I agree that there are significant differences between us all. I am also a parent with ASD (for lack of a better phrase) and a parent to at least 1 child on the spectrum. What I thought was possible for him 2 years ago has changed as he reaches his teen years. I hope and pray he keeps moving forward.

    Thank you for your thoughts and I look forward to reading more and sharing this crazy ride through your blog ;-)