Autism Sucks

There are no two ways about it. Autism sucks.

It sneaks up on unsuspecting children like a thief in the dead of night and steals their childhood. It creates so much havoc in homes that more than 75% of happily married couples who have an autistic child end up in divorce. When the diagnosis comes, you know that your child will be treated differently forever. Special classes, therapy sessions, having to purchase a special brand of socks to avoid the morning confrontation that comes with having to wear shoes and socks that are not comfortable for the child because of his sensory issues. There are days that jeans are fine and others that jeans cause so much agony that you just want to throw them all away.

Your life must be a total routine where the simplest change in plans can cause an outburst that will last all morning. and never- I mean never - tell an autistic child that you are going to do something and then not do it. They remember everything.


Yesterday was day # 1. The first day following a diagnosis that we all thought was coming because of recent activity, but one that you hope never happens. It was the first day that my youngest son was taken from me. He is still here, but he is not the same. The beautiful blue eyes are empty. The number of words he was speaking for his age bordered on gifted, and now each day - like the 14 previous to it - he is regressing. He has become more emotional and less engaged. He is a different child, and I want the old one back.

For weeks my wife has been sharing with me the signs of his regression. At first we thought it was learned behavior and he was copying the things that he sees in Chandler. As time went on, and we took more and more notes, it was clear that whatever the trigger point was for Spencer - it had happened and our lives would never be the same again.

I have been working with Autism advocacy groups over the past few weeks, joining the board of two and working closely with another to ensure that parents who are about to have their First Day with Autism have the resources necessary to provide the best care for their child. I always thought I was doing this because of the inspiration that Chandler has always provided me. Now he has a teammate.

My wife is an absolute saint. She has an unwavering faith that I wish I could duplicate. She has never once asked "why us?", she just went to work to provide the best course of treatment for Spencer and has already lined up therapy and pre-school. I could not have asked for a better companion to take this journey with, she makes me stronger. Her biggest challenge is not our children with Autism, it's being married to me and she handles it with style and grace. She was sent to me, I have no doubt about that and it was the best gift I could have ever received.

Day # 1 was horrible. Day 2 is a little better, but I am still struggling. I will get over this - I have to for the two children who up until yesterday I thought the only thing I gave them was blue eyes.

We can either let Autism define who we are, or redefine Autism. I choose the latter. You see, my children are going to beat this. I am going to get Spencer back, and Chandler is going to have a normal life. I will not stop until this happens. I will not rest until progress is made and I will make sure that our children receive the best possible care, no matter the cost or location. They were placed in our care for a reason, and anything less would be letting them down - and I will not allow that to happen. I'm done crying (probably not, but soon), I'm done feeling sorry for myself. I'm done trying to find someone to blame for taking the most precious thing from me.

Today is day # 1 for some parent, tomorrow will be day one for another. Each child deserves the best possible treatment and access to resources. Each parent deserves access to the same resources and alone time with their spouse to ensure that they remain united in this lifelong fight.

Autism Sucks. So we're going to beat it - together.