Dear Abby – Feeling Chastised in New England

Let me just begin by saying that I have had the pleasure of meeting a few adults with Autism recently, namely my friend Charlie and Joshua. Both are amazing individuals that do a great deal to raise awareness about autism. I “speak” with Charlie often enough to consider him a friend. He is a wonderful human being and it makes my day to “talk” with him or just read his posts. He is truly an inspiration to parents of children with autism, other teens and adults with autism. But above all that, he is a glowing example of the good things that can be found in today’s youth in general. I don’t think of him as having autism, I think of him as my friend, plain and simple. I’m honored to have him as my friend. Charlie and Joshua should be celebrated.
My son’s autism or level of autism (I don’t like the word “spectrum” but that is a rant for another day) is not like Charlie’s. Autism affects each person differently.  Therefore, parents should not be made to feel inferior or chastised for their own beliefs. Everyone is different, everyone. There is no right or wrong, when it comes to autism, just a lot of people arguing with each other, it seems.
Today I received this private message on my face book page from a friend of mine who is pretty much in the same boat as I am “level-wise”.
The fact that she did not feel comfortable posting it publicly, speaks volumes about the environment we find ourselves in. The hostility that she (and I) knew would have ensued had she posted it publicly.
(The following message is used with permission. The names have been changed to protect the innocent)
Dear Abby (Vickie)…I think I’m missing something. Why is it wrong to feel like I’ve lost something in having an Autistic son? Why are we supposed to not want a “cure” or something that helps them handle this world we live in a little better? I look at the video of Bob from birth to 18 months and there were signs, but he was still there. It was June of 1996 – he was 18 months old – all of a sudden he disappeared. He is lost to me. He will never have a normal life. He will constantly need care and supervision. There are many people that are on the much higher functioning side of the spectrum that can navigate the world today. Bob is not one of them. Why am I supposed to not want that to be different? People say you don’t miss what you never had – but I know what could have been. I know what life he could have had and now for sure will not. He will find happiness somehow; he will be as productive as his disability allows him to be. But the sky is not the limit for him. The opportunities for him are not the same as they are for my daughters. Why am I supposed to celebrate that? With all this Autism Speaks hullaballoo in the last couple of days, I’ve been feeling like a minority. I think these kids are lost – lost to the life that could have been, lost to the possibilities that would have been. I feel they have a disability because they are “not able” to process and handle what happens in life the way others do. Why are we getting lost on the rhetoric? Am I missing something Vickie?
Feeling Chastised in New England
I have said this many times and in many different ways:

• I celebrate my son as an individual
• I celebrate my son because he is my son and I love him more than words could say.
• I celebrate his accomplishments, no matter how large or small they may be.
• I celebrate him because he is wonderful.
• I do not celebrate his autism.

I write stories about my son because:

• He is wonderful.
• I’m very proud of him.
• I’m very proud of his progress.
• He makes me laugh every day.
• He makes me smile every day.
• He makes me worry every day.
• I believe these stories shed a little bit of light on autism and the way his mind works – not all autism, but his.

I have recently come to have my own issues with Autism Speaks and am in no way defending them. I don’t believe anyone should be made to feel “less than”. I don’t consider my son “less than” but there is an issue. There is that life he could have had. Maybe it would not have been a better life, maybe it would have been, but at the very least he would have been able to understand it and navigate through it.
Celebrate Autism? I can’t do that. Maybe others can, but I cannot celebrate his level of autism.
Individuals should be celebrated, not the diagnosis.
Like “Feeling Chastised”, 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.
My suspicion is that many of these parents in celebration have younger children or higher functioning children. They still have hope of great progress, and they should have hope, there is always hope. I still have hope for more progress, but living in the real world I know that even though he continues to make progress, none of the issues listed above will improve enough that I will not spend every day and night worrying about what will happen to him when I am gone. This is the stuff our nightmares are made of. What’s going to happen to them when we’re all done celebrating autism? Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them?  How drastically will their life change then? Think about it.
If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?
When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.
Those of us with adult children that are not considered “high functioning”, that have been in the trenches for many years, long before there was a “spectrum”, long before there were many of the services available today, deserve a little bit of respect and deserve to be able to voice our opinions as you are allowed to voice yours;  to want something more than a celebration.
I believe in raising awareness. I believe in trying to make people understand Autism. I believe that INDIVIDUALS and accomplishments should be celebrated. I also believe some of us need more than that.
My only wish is to be able to die in peace knowing my son will be okay…….