Nine-year old non-speaking boy writes bestseller book about autism for educators, parents, and students

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 “I would advise teachers to treat their students humanely regardless of their beliefs about disabilities,” Diego Pena, Age 9

By Debra Muzikar

A couple months ago I became aware a Ventura County third grader who was non-speaking and had an autism diagnosis had written book Anatomy of Autism: A Pocket Guide for Educators, Parents and Students which was now on the Amazon bestseller list.  I  wanted to know how that book came to be and decided to interview him for an Art of Autism exclusive.

Diego is fully included in a general education classroom with his communication partner, Amanda.  Diego also participates in the Gifted and Talented Education (GATE) program in his district.  He was awarded a $150 grant by the GATE program to develop a poster and class video with his peers to educate others about autism.  Diego’s teacher, Mrs. Amy Wood, encouraged Diego to turn the project into a book, which we now know as one of Amazon’s bestselling books, Anatomy of Autism.  Diego loves creative writing, telling sarcastic and witty jokes, and playing outdoors.

Here are my questions and Diego’s responses.

Q: How old are you?

A: I am the magical age of a young genius, which is 9.

Q: How old were you when you started writing the book Anatomy of Autism?

A: I was only 9.  It was a piece of cake.  And yes, that was sarcasm.  It was a labor of love.

Q: Why did you write the book?

A: My teacher told me to write about my Gifted and Talented Education (GATE) project, “Anatomy of Autism.”  After I was done she said to publish it which was the best advice.

Q: Can you tell me something about your education experience.

A: I attend public school and it’s mostly been awesome.  The one negative experience I did have could have ruined my life because of lacking education.  I would advise teachers to treat their students humanely regardless of their beliefs about disabilities.

Q: What is the biggest myth about autism you’d like people to know?

A: The biggest myth is that we aren’t smart, but we are.

Q: What do you want people to know about non-speaking autistic people?

A: Speak to us like everyone else. We understand you. We need time to respond. Our bodies aren’t always cooperative.

Q: Any advice for parents and educators?

A: Never give up.

Q: Are you going to be having any book signing events in the near future?

A:  I need to hire an assistant first.

Some excerpts from Diego’s book  which we will add to our autism favorite quotes page:

“Trust me, I want to talk to you. My inability to speak is confused for my intelligence. I do have a voice, I speak with a Talker (my iPad), and I get to share my ability as a thinker like everyone else.”

 “Working on communication in a meaningful way should be a priority when working with us. There is nothing worse than being left out of the conversation. Talk to us please; we love to be included. You have the power to make a difference in how people judge a person with autism.”

 “When you encounter someone like me, don’t stop teaching because we are capable of learning. We are capable of being motor superstars at our own pace. Just know we try hard every day.”

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Diego Pena Awesome in Autism

This year Diego was award the Autism Society of Ventura’s Awesome in Autism Individual of the Year award. Diego’s book Anatomy of Autism: A Pocket Guide for Educators, Parents and Students can be purchased on Amazon.

 

 

16 Comments

  • Nancy Lea Speer says:

    You have an amazing and powerful voice, Diego! You will be heard!

  • David Max says:

    Just exactly how did this non-speaking boy who is only 9 years old write this book? If it was his use of Rapid Prompting (RP), then, unfortunately, we have to be skeptical because RP is simply a form of Facilitated Communication (FC), which has been totally scientifically debunked. Just for the record, there is no credible scientific evidence that either FC or RP do what their proponents claim. Just because you want to believe that these autistic individuals are literate and can speak for themselves doesn’t make it true. The result is that they exploit the very people their promoters claim to be advocating for and, worse, they are putting words in their mouths. Sadly, without some real intervention to teach independent communication, the ultimate result for kids like Diego will be the same: complete dependence on others for even their most basic needs.

    • Jeni Grant says:

      David – There’s this magical thing called a “keyboard,” you might have heard of it? Modern keyboards attach to this device called a computer, with which you can do all sorts of extraordinary things, even an autistic person. I am autistic, very literate, and can communicate just fine. Look, I’m doing it now! Autistic people who are non-verbal can be just as literate and can communicate in a variety of fashions, like typing or AAC. Just because someone doesn’t produce glottal noises, doesn’t make them intellectually inferior or incapable.

      Also, it’s a 36 page book. It’s not exactly War & Peace, dude.

      • David Max says:

        If you’re typing independently without anyone to help you then fine. If you, or anyone else, needs someone to hold your hand, touch you, sit with you, hold the keyboard in the air, etc, then it’s not fine. And, as I replied to someone else, I’ve worked with people diagnosed with autism for more than 40 years and when I started there was no autism spectrum in which everyone can now be diagnosed with autism. I worked with kids (mostly) with classic autism who had no functional language, speaking or writing. Then, in the early 90s FC comes along (then later RP) and all of a sudden, and miraculously, non-verbal kids can now produce sophisticated language without any of the teaching and experiences that typically developing people have. When these methods are scientifically tested, they failed as any rational, logical person expected them to. So, again, if someone communicates independently, great! If not, I’m not convinced and the FC and RP promoters (and anyone else who pushes this pseudoscience) are baldly exploiting these autistic individuals. Oh, and by the way, “non-verbal” means non-verbal.

      • Monika says:

        Jeni Grant..you’re awesome for putting David in his place..thank you from a mom of a nonverbal boy with autism.

    • Kelly Barreca says:

      Are you a specialist?

      • David Max says:

        I’ve been working directly and indirectly with people diagnosed with autism both in applied settings and as a university professor form than 40 years. You?

    • Kristen says:

      Agreed

    • Ryan says:

      I’m glad someone else is skeptical here. I think this kid had substantial help with this book, not even because he’s autistic, but simply because he’s only nine. His vocabulary and syntax are extraordinarily advanced for his age. There are a lot of examples of kids being exploited for money, and I think skepticism in this case is healthy. It’s fine to be happy that this kid has support and is advocating for a cause near and dear to him, but taking this at face value requires a lot of gullibility.

      An excerpt:
      “I am strangled by my motor system and experience raw impulsivity.”

      Nine-year-olds don’t talk like that.

      This book is also advertised as a pocket guide. It provides insights into autism for sure, but it doesn’t guide anyone to do anything. It’s just a blog post being sold for $5 or $10.

      • Terry says:

        *MOST nine-year-olds don’t talk like that.

        Fixed. I realize this may be difficult for people to grasp, but sometimes individuals have a language comprehension far beyond what is expected for their age. By age nine, I had read Jane Eyre, Wuthering Heights, and The Count of Monte Cristo. It’s all right to express some doubt, but the basis for your argument should not be what is typical when you already know the child is atypical.

      • NotPleasedWithRudeness says:

        I like how there is always people that will dish out negativity. But before you do, I suggest you read the book. It was different that what I thought. And just because he has Autism, doesn’t mean he can’t be gifted in otherwise. He’s non-verbal, doesn’t mean he doesn’t have thoughts that can’t be expressed. . . Rude!

  • Kristen says:

    David Max – agreed.

  • Jylah Ritmeester says:

    There is a youtube video interview with him. His mother asks him questions and his answers are complex and complete sentences (via an AAC device such as proloquo2go) but they have been pre-constructed so he is only pushing one button to produce the entire complex sentence.
    This could be OK but it also looks like there is some prompting going on–not just to get the child to stay and answer questions and attend to the screen but which buttons to push on the screen.
    I am not saying that this is a hoax but evidence to the contrary would have to show him using the AAC device without any prompting at all. If he is only able to select relevant sentences that have been written by someone else: this is OK if he can communicate his needs effectively, but again, evidence of him composing would have to show footage of him constructing sentences himself, even if someone had to edit them later.
    Please do not be offended by honest critique: it is an even more offensive to consider the possibility that one might persuade a child to plagiarize their words while pretending that he is speaking his own mind. Especially if this charade is replacing what could be an effective program to teach him to communicate his real preferences. Again I am not saying that this is the case, but the claim is suspicious and the evidence is not there.

  • Guest says:

    Same David Max?

    Dr. David Max, PHD — Psychology | Healthgrades.com
    Healthgrades › david-max-xf4b4
    Visit Healthgrades for information on Dr. David Max, PHD Find Phone & Address information, medical practice history, affiliated hospitals and more.
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