Category: Ask the Experts

Thank you for asking such an important question. While I cannot and would not tell you exactly how to answer, I’m happy to paraphrase from memory what my mom and dad told me 16 years ago. Before I do I’d like to provide a little background.

By fourth grade my folks noticed differences in my academic performance and behavior compared to my classmates. That same year a team observed and tested me, the results being a diagnosis of Aspergers. After the testing I remember sitting out in the waiting room when my parents walked out with some reading materials. They sat down next to me, and I asked if everything was okay. They nodded, telling me that everything is going to be okay.

“Everyone’s brain works differently”, they said a couple of times and in a couple of ways throughout our conversation on the way home, and my Autism makes mine work a little more differently than most other kids. The answer satisfied my curiosity but I kept asking myself why this was the case. Why do I have Autism? Why am I so different? Each time I did I admittedly felt a little alone, but then I remembered or was reminded that everyone is different, and that I would have help if I asked for it or needed to talk to someone.

I hope this piece provided a little bit of guidance. In the end I really appreciated how open and transparent my parents were with me, I now have a much better understanding of the difficulty they faced in deciding how to tell me and how to help me. In the days after my diagnosis they, like so many parents, sought the advice of professionals, testimonials and experiences in books, and groups like the Autism Society.

If your child has begun to ask these questions, it is definitely time to talk about their diagnosis. Of course, parents are a child’s first “go-to” for information, and parents are generally seen as sources for general information. A diagnosis of Autism Spectrum Disorder (ASD) identifies the child as “different” and can offer explanations for those differences that the child has already noticed.

Having a professional, such as the person who made the initial diagnosis, a therapist who works with your child on a regular basis, or a special education teacher or case manager join you as you begin to explain autism to your son will most likely substantiate the diagnosis. This is because most individuals with ASD assign roles to the people in their lives and parents have a “parent” role and an expert will have an “expert” role—overlapping roles can be confusing. The “expert” can help field questions about different behaviors between individuals with ASD and Allistic individuals—people without Autism. They can also help the individual with ASD normalize their diagnosis by explaining that everyone has something different, unique, and special about them—not bad, just different. When your child can accept this idea, they can learn to appreciate the differences in themselves and others, which leads to acceptance of themselves and their diagnosis.

It is important for the discussion to include the idea that autism is not something they will “grow out of” but rather, something they will “grow into” as they mature. The explanation needs to be age-appropriate, factual, and kind, which might not be an easy thing to do. Consider the book “All My Stripes”, written by Shaina Rudolph and Danielle Royer and illustrated by Jennifer Zivoin, for a very young child. A YouTube video, “Amazing Things Happen”, by Alexander Amelmes, is a good fit for adolescents. A second video, “Autism Spectrum Disorder Presentation”, by Paulina Naslonski and Tara Wager, works well for high school and older individuals. Good Luck and Good Parenting!

Being aware of who we are as individuals is important to our overall development and success in life. Self-advocacy, the ability to be aware of our strengths and weaknesses, is a critical skill to develop for individuals with disabilities. It is important to become knowledgeable about one’s self in order to live as independently as possible. By learning this information, individuals with disabilities can learn to communicate their needs with others such as educators, medical professionals and employers as they get older.

As a mother of identical twins with Autism, I, too, struggled with whether or not we should talk to them about their disability. Like you, I wasn’t sure how to approach this. When my boys were 11 years-old, I decided to read them a book about Autism. I remember the day clearly. I was full of uncertainty and anxiety. I felt like I was about to do something to harm them. Instead of being paralyzed by these thoughts, I charged forward and read them the book Little Rainman: Autism Through the Eyes of a Child by Karen Simmons. I had ordered several children’s books about Autism and decided that the content in this book most closely matched what my boys were experiencing at that time. While reading the book to them, both of them commented about how they were like the boy depicted in the book. This led to open dialogue about how they, too, have Autism and how they have many strengths in life because of this. We talked about their amazing memory, their ability to read and spell, and several other positive characteristics. It was then that I felt empowered to teach them about their strengths and challenges through the concept of developing Self-Advocacy skills. I would recommend teaching your child through books that seem relevant. You may want to write a story about your child if you wish to be more direct and concrete in your approach.

Professionally, I was serving as a Director of Special Education & School Psychologist at the time we began talking with them about Autism. I dove into research related to Self-Advocacy and Self-Determination and began having conversations with staff about these concepts. We implemented Student-Led IEPs for all students ages 14 and older which was a game-changer for all students with disabilities in our school district. Students worked with teachers to learn about their disability and how it impacted their learning, social skills and other aspects of life.

More importantly, it allowed for open communication between educators, parents and students about present levels of performance, goals, specialized instruction and other supports that would allow students to achieve at their maximum potential. The most important part of the process is that students learn about themselves and are able to communicate with adults at IEP meetings about their needs. Instead of being present and listening to adults talk about them, they were actively presenting their IEPs! It is difficult to describe the feeling that I had as a parent when I heard my kids talk about what they needed to succeed and what they wanted from life. I have observed many other students and parents experience the same feelings at IEP meetings. Below are some resources that can help with developing Self-Advocacy and Self-Determination skills:

I’m Determined
A New Way of Thinking
Speak Up – Becoming a Self-Advocate
Self-Directed CCR IEPs

Today, my boys are 23 years-old. They have recently graduated from college with Associate Degrees in Marketing with an emphasis in Digital Marketing. They both have received several additional Technical Certificates and Technical Diplomas including Promotions and Event Management, Hotel Management, and Web Design. They both drive, are employed, and live independently with some support. I believe that learning about how Autism impacts them was the best thing we ever did. They are proud of who they are and are out sharing their story to help provide hope for others. They struggled to speak when young. Now they are Speaking About Autism through their public speaking and consultation business. You can learn more about Matthew and Mitchell at www.speakingaboutautism.com. I say…Go for it! Talk to your son. You will be glad that you did!