“Autism…What Does It Mean to Me?” Brings Understanding

This article was contributed by Jade McWilliams, autistic self-advocate.

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This book is available in the ASNC Bookstore. Click the image for more details.

I first came across “Autism…What Does It Mean to Me?” when I was officially diagnosed with autism, about 4 years ago at the local TEACCH Center. At this time, Catherine Faherty was still working for TEACCH. (I knew I was autistic before that, but being a girl and growing up in the ’80s, I had grown up with other labels, like “emotionally disturbed.”) Having the diagnosis finally made official and having *BOTH* people in my life and MYSELF accept that there was a neurological reason for my differences and behaviors (rather than problems with my character) was vitally important. This book helped make that possible. And it was on the very day of my diagnosis that I first encountered it!

I was extremely exhausted and stressed after undergoing the series of required psychological and cognitive tests. Actually, I was ready to run out the door, which was something that I did a lot under stress in those days. But while the results of the tests were being discussed, the therapist, probably detecting my distress, handed me this book to look at. I promptly proceeded to focus on the book and ignore everyone else.

I have to admit that the first thing I liked about the book was that it was HEAVY. It was the weight/pressure of the book on my lap that actually helped me to sit and slow down my stimming. Eventually I calmed down enough to look inside of the book and read some of the words. When Catherine came in and was introduced to me for the first time, I said, “I like your book! It is helping me to sit!”

In the days after my evaluation, my thoughts kept coming back around to this book. I really wanted to be able to explore it more, in my own time. We went to the library and checked it out. I am so glad that we did! I read it and reread it. I did the activities in the book. While other books I had access to were dense and wordy, this book was easy to process and broken down into parts that I could manage. I was learning, understanding and accepting a lot about myself, through using this book.

And here is what was really great: It didn’t just help me, it helped my partner a lot, too. We both read it, and through the book we were communicating about important topics. It helped us both understand what was going on! I am really grateful for this experience.

Even though the book is meant for children and teens, I think it is really useful for people of any age! I liked that my differences were presented in a straightforward, nonjudgmental, positive way. It was extremely validating to see them in print. That they were in a book made me feel not alone and not “wrong.” I started to feel more kind and gentle with myself. I started to think in terms of “differences” rather than “deficiencies” or “faults.”

I loved the concrete suggestions. As an adult, I enjoyed reading the sections for “Parents and Teachers” as well. I especially loved reading about schedules and the examples of schedules in the book. I loved how Catherine introduces the idea of getting help or requesting help. This is a cornerstone for self-advocacy. And I had never known that I could ask for help.

I loved the worksheet statements that I could easily read and think about and process… and then decide if they were “true for me.” Seeing things that were honestly true for me, in print, helped me to understand truths about myself that I had never been able to form into words before or communicate to another person! I started to feel like, “Hey! Someone understands me! This has never really happened before! I want to keep going, keep learning!” One of my favorite things was reading about “the quiet children.” As a very silent child, it made me so happy to read this.

In the second edition, there are some great new additions to the book. I love the way Catherine defends stimming! I want to be in a class that has group stimming time, as she recommends. I would have loved doing this in school. The expanded additions on talents and creative expression are wonderful! I hope that everyone who reads the book will find some of their own talents reflected in this chapter. And the chapter on being happy is very important. I like that it has very concrete suggestions for improving happiness. This makes feeling better very accessible to the autistic cognitive style. The section on students giving their own input in the IEP process THRILLS me to no end! Lastly, I think the sections for older kids on self-injurious behavior and depression/suicidal feelings are also really important. These topics are hard for anyone to discuss! This gives a non-emotional, logical way for autistic people to try to express big, complicated feelings and experiences.

This book is very important for autistic children because it helps them to understand themselves and their experiences, and to realize that their experiences may be different from other people’s. Typically, so much treatment for autistic children focuses on language development, changing behavior, and developing “social skills.” These are all external observable traits. They do not address the lived-in, internal experience of being an autistic person.

What Catherine’s book can do is help children understand who they are on the INSIDE. This is vitally important, and there needs to be more focus on this area of personal development!!! I don’t know if non-autistic people can appreciate how out of control life can feel when you live in a world that is not designed for your way of being. But every bit of understanding that we have, of ourselves and of each other, helps to make navigating the world a tiny bit easier. And PLEASE remember: If accurate information is not available to help children understand themselves, they will STILL come to conclusions about who they are and how they are in the world. And this information (more often than not) will be provided by people who (at best) do not understand autism and (at worst) by people who are being actively unkind. (For example: bullies!) By using this book, I think children can gain self-understanding, self-acceptance and (ultimately) self-confidence in ways that are really tailored to their strengths and abilities. Everyone feels better when they are understood and understand themselves! Autistic people are not different in this regard.

 

“Autism…What Does It Mean to Me?” is available in the ASNC Bookstore. Click here for details.

The ASNC Bookstore is the largest nonprofit, ASD-specific bookstore in the United States. Proceeds help provide assistance to individuals on the autism spectrum and their families, and the store also employs individuals on the spectrum. Contact us by phone at 800-442-2762 (NC only) or 919-743-0204, ext. 1132, 9 a.m.-2 p.m. (EST) Monday-Friday, or by email at books@autismsociety-nc.org.

 

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