As I have mentioned before my brother writes a blog called Decoding my Autism. This week he posted something that spoke to my heart as an autism mom and sister. So with permission I am posting it here. It is an open letter from my younger brother, and what he wishes he could have told us.
What I wish I could have told you
Looking back on my life, I know there were times where I was confusing, frustrating, or just bewildering to my parents, teachers, and others. They didn’t understand my behavior, and I couldn’t explain to them why I did what I did.
I was reminded recently of a verse of Proverbs in the Bible: “Speak for those who cannot speak for themselves.”
And I’m going to start by speaking for my younger self. What follows is an open letter to my parents, teachers, and other people around me when I was growing up. Hopefully, it will help you.
To My Mom
Mom, I’m sorry that I was a picky eater. I didn’t know how to tell you that some foods and textures just looked weird to me. They didn’t appeal to me at all, I refused to try them, and I know it made things harder.
Mustard was a strange yellow color. Potato salad seemed too lumpy. Broccoli, unless well cooked, often made me gag – it wasn’t dislike, it was a simple gag reflex due to the texture. And I’m sure there were others that I’m not recalling now.
But I like those foods now, and I wish I would have been willing to try them sooner. I love potato salad. Mustard I like, although plain yellow mustard still looks weird to me – I prefer a nice, stone-ground mustard. (I’ve become a foodie.)
Broccoli, I will admit, I’m still a little leery of sometimes.
To my Dad
Dad, I’m sorry for the times when it seemed I was arrogant, or that I had to be right.
I saw the world a certain way, and I couldn’t see it any other way. The world was a scary, confusing place for me that I had trouble making sense of.
I had carved out a certain worldview to make sense of that chaos, and I think I had defended it out of a sense of self-preservation.
And I was definitely tactless and argumentative in defending that worldview. I know we got annoyed with each other. And it led to us arguing at times.
I’m sorry for the times we fought.
To My Teachers
To my teachers, I’m sorry for how confusing I could be at times. The classroom was a confusing place for me, and I just didn’t understand the social rules of the classroom that my peers did, except for the laid-out classroom rules.
I feel especially bad for my fourth-grade teachers. I started bursting out in tears in class, for no apparent reason.
I think that year, the gap between what I understood socially and what I was expected to understand, reached its peak. I became overwhelmed, and tears started to flow.
My teachers had no idea what was going on. And we didn’t either. High-functioning autism was barely known at the time, Asperger’s Syndrome had just been made an official diagnosis the year before, and we wouldn’t figure out I was autistic for another couple years. At the time, I was just a kid who got overwhelmed with no explanation.
To Everyone else
To my parents and everyone that had to deal with my nervousness in dealing with talking to people on the phone, I’m sorry. Talking to people on the phone was scary because it was confusing and unpredictable.
It was hard to know what kind of reaction I would get. Would the person be nice? Helpful? Impatient? Annoyed?
On the phone, I was entirely dependent on my words. And I wasn’t good at getting words to come out the way I wanted.
I got nervous and wouldn’t be able to think clearly as to what I should say. Things would come out wrong. And I was scared of saying the wrong thing and people getting mad at me.
To be honest, I haven’t shaken this fear and discomfort yet. Making phone calls is still hard for me. There are people in my life that still have to deal with my reluctance to call people on the phone.
There are many more things that I wish I could have said to many more people. There are lots of little moments where I wish I could have explained what was going on and apologized to the people I upset with things I said or did.
And so, I write this blog, to help you better understand when you and your loved one are facing similar, and hopefully say the kinds of things they wish they could.
Abby is capable and caring. She is learning more about Autism and parenthood every day. Having completed training to be an RBT (Registered Behavior Technician) for ABA therapy she is beginning to understand her son. And even though she is the first to admit she makes a lot of mistakes, she is so grateful to be on this journey. She comes from a family with many autistic members. She invites us to join her, as she shares her adventures. She wishes to emphasize that Autism is a difference not a defect. If you or a family member have autism, Abby wants you to know that the challenges can be overcome, and there are blessings in autism. You or your loved one are not sick or broken. Together we will teach the world this new language.