Category Archives: autism perceptions

Helping the Do-Gooders

 

Twice recently when I have been out grocery shopping with my dad, while waiting to pay the cashier, he, not me,  has been approached by a do-gooder who tells him that she has a program for people like me. He says thanks, but no thanks.

They tell him it is good to get me out in the community like this and they talk to him as if I’m not there and not understanding the conversation. He tries to escape quickly, for both our sakes.

They mean well. I get that, but they occupy the traditional, patronizing, benevolent model of disabled outreach and education. They must rescue me.

No thanks, ladies.

Do they walk up to a guy in a wheelchair, ignore him, and tell his companion they have a program for him and how great they are for bringing him into the community? That would be pretty funny if they wanted a lawsuit, but lucky for them, I’m not speaking and that gives them the freedom to assume I’m just like all their other charges– which may actually be true, just not in the way they think.

 

More from The Spectrum of Opportunity Conference, Parent Panel

Here is another great speech from the great Spectrum of Opportunity conference. Hopefully you can get encouraged by Duval Capozzi’s speech. I recently posted his son, Samuel’s speech, and here Sam’s father tells the story of from a father’s point of view. Importantly, he seems to have no interest in regret or in feeling down about the time his son didn’t communicate. Rather, he rejoices in the miracle of his son going from silent and unable to communicate and believing his son had no ability to understand basic concepts, to a son who types his thoughts and is now a freshman with a 4.0 GPA in a university. I hope that many parents take his message to heart and rethink autism.

Good afternoon! My name is Duval Capozzi, I’m Samuel’s dad, and I am in the honored role of being a Dad’s voice! As involved as I have been, I must say—most of these moms, my wife included are “Navy Seal Moms!!”

Samuel’s name means, “asked of God’, and boy, did God answer! He’s been our biggest blessing, and his life has enriched ours in incredible ways. We have delighted in him all the days of his life!

Samuel started to communicate using the letter-board and iPad at the age of 16 ½ in May of 2012. To some that would be late in the game while for others maybe not. Either way, it was perfect timing for us—perfect timing for him. He was so ready; he took off like a rocket! As far as I understand, his response to learning and implementing the method was quicker than most. I’m not sure why, but it was.

A year before that, my wife Kathy started to research and pursue RPM (Rapid Prompting Method) and suggested that we visit Austin, Texas and visit Soma.Now, at first I was very cautious and not as excited as her (tried many things and have spent lots of money on things that gave little results).

So we saved up, got on the list and made the trip in May 2012. Initially, we were hoping to get some novel phrases from Samuel—something that truly came from him, not something memorized. Boy, did we get the shock of our life!

While we were there, Samuel was able to share several personal feelings that we never heard or knew about him, and his communication started taking on a whole new meaning during that week. We were shocked. We are his biggest fans and advocates, yet even we had no real idea of what was going on in our boy’s mind. We knew he was capable of so much more than he was able to articulate or demonstrate, but we had no idea!

We came home and within two weeks, Samuel was spelling out simple conversations, explaining what his faith in God meant to him and that he wanted to get baptized. First things first!

He began asking questions about marriage/girlfriends. Could he learn how to drive? And he wanted a cell phone and Facebook account. We laugh because he was after all a teenager, but this is stuff we had no idea he either understood or cared about. We were continually surprised at what had been hidden inside of him. We sometimes still are. These are things we were resolved to not know…to never hear this side of heaven. Can you imagine our shock? Our joy? Our relief? We could ask him if he was in pain. We could ask him how he felt. We could ask him what he wanted to do, eat etc.!

Our understanding of him, of autism, and how to support meaningful communication with him was so misguided, was so wrong. As you can imagine, our hearts and minds were elated! Our life as we then knew it what was forever changed!

We have homeschooled Samuel since 2nd grade for a number of reasons. As he described, he went from VERY remedial math to pre- algebra from May to August of the same year. My wife sat with him all summer remediating and discovering any gaps that he may have had. In high school he took 3 years of Latin (Why) He said, “Because I want to be a lawyer!” Talk about a shock!

To give you an idea of where we were at this time, we had no idea that he even knew what a lawyer was. I think this is key—key because no matter which direction you go as a parent, educator, therapist or otherwise—just because someone is non-speaking doesn’t mean they are non-thinking. My son taught me that—in a new way—in a life changing way. He told us over and over that, “I was ALWAYS LISTENING.”

He was learning, as he describes as ‘incidentally’ all the time. How we think. How we act. What we expect from our kids and loved ones MATTERS. We won’t speak to our loved ones as if they understand if we don’t believe that they DO understand. We won’t invest in someone if we think they’re not understanding-they are. I hope this is a Take-Away for someone today.

Again, Samuel graduated high school last June and is nearly finished with his first year of college at CSU Channel Islands as a Political Science major. Samuel believes he has a calling in his life to be an advocate for those who have special needs, for those he believes are marginalized and misunderstood. He says “I want to be a voice for the voiceless” —I know what that’s like.

Frankly, for 16 ½ years Samuel was unable to tell us what he really wanted, what he thought, or how he REALLY felt. He didn’t have a voice. He was trapped. Now we can, and do, have deep conversations about life and his future. It’s priceless.

As you can imagine, it has been such a healing time for him and for us. This has made an amazing impact on our son’s quality of life and on our family’s life, and I am so glad I listened to my wife and went to Texas back in 2012.

He still deals with the various trials of having autism, living with a diagnosis of autism is very difficult for most people. But now he can learn and communicate like others even if in a slightly different way.

I truly hope this has helped some of you to understand our son’s journey to meaningful communication. What a joy to be sharing our Samuel and his breakthrough with you today!

*Afterthought- not every person’s response will be exactly as my son’s was. Nonetheless, searching for a reliable means of communication for your loved one is important.

 

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My Speech at the Mental Health Advocacy Services Celebration

I am truly honored to be standing here tonight receiving this recognition. I am honored to be here with our District Attorney, Jackie Lacey, too. It is a reminder that advocates can be high school students or politicians, or anyone else. We just need to care deeply about a cause.

As you look at me, some of you must be wondering if I really wrote my speech.
After all, you’ve probably heard that most nonverbal autistic people have low cognition, no insight, no theory of mind, no inner world and poor receptive language.

Guess who told you that? It wasn’t people with autism, that’s for sure.

I have a very misunderstood condition. My disability is caused by my brain’s faulty linkage to my motor system. So truly, I think and understand though I may look like I don’t. Add to that a sensory system that is malfunctioning, and you have an idea how tough it can be.

The truth is, autism itself is easier than the incorrect assumptions by the so-called experts and specialists out there. A locked-in, motor impaired, sensory overwhelmed child cannot escape this on his own. Consequently, few nonverbal autistic people learn to communicate. Experts comfort themselves that we can’t communicate because we don’t understand.

I got fed up with this, because all around me are smart autistic people dying of boredom and loneliness, not able to communicate one idea more sophisticated than a basic need.

My decision at twelve was to speak out and correct this misinformation.

I was denied an education in elementary school because of the expert opinion that an academic curriculum was beyond my intellectual abilities. Now I am an AP student in 12th grade, ready to go to college next year. If my parents had listened to my experts I would still be stagnating in 1+2=3 expectations.

Things are changing gradually. Other autistic typers are speaking out too. We face resistance by people who believe theories over truth. But in time I know that the current paradigm will be discarded, like so many other incorrect theories, and the nonverbal will at last have a voice in their futures.

Thank you.

How Do We Learn if We Don’t Make the Effort ?

Let’s talk about when doctors’ ideas have been wrong. Bloodletting was once the norm. Sick people were thought to have tainted blood so they were bled into cups, making them weaker, of course, and increasing the likelihood of infection due to open wounds.

Did you know that many deaf people who couldn’t speak, or people with cerebral palsy or others with communication problems, were  deemed to be incapacitated and were sent to institutions where they were stuck  for decades.

Eggs were demonized. Now they are thought to be healthy. All fats were demonized. Now studies show that our bodies need certain fats. Red wine and dark chocolate are now heart healthy. Our beliefs regarding nutrition and diet change all the time. We learn and make necessary changes.

I have decided to become a French expert. I will learn all about “Frenchism” by watching French people.  I will make theories about their habits. I will train them to be less French. But I will never teach them English or learn French myself. Then I will claim to understand Frenchism though I never consulted a French person. The world will recognize me as the leading expert in French habits.

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Some Thoughts to a Thought Provoking Post

This post from Emma’s Hope Book blog indicates the stress of parents by a system that makes it harder for them to relate to their child. In my opinion, the list of symptoms reduces people to behaviors and makes it harder to see the person’s personhood. It is ironic because a symptom of autism is to play with part of a toy, but what about professionals who focus on part of a person? If I liked to look at letters it was bad. If they like to look at only symptoms, it’s treatment. This is hard on parents because, “Hands down,” “Hands quiet,” and on and on, become the key of interacting.

I remember hugging my mom when I was young and an expert remarked, “Wow, he sure stims on you a lot.” So in the symptom-based worldview even hugging my mom was a sign of my inability. Of course, if I didn’t hug I would have been declared distant and disinterested in people. Experts should be really wary of assuming they know, when they really don’t know yet, what is in the heads of severely autistic kids. In these cases it is like putting words into someone’s mouth–all ten of them.

The point Ariane makes of seeing the child less pathologized is spot on. Let’s listen to people with autism who can communicate to be partners, guides, teachers, role models and proof that though we may look or act autistic because of having autism, we are fully human, fully intelligent and deserving of peoples’ respect.

A Challenge to Autism Professionals


The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.
Whew. When I write that it sounds pretty bad, but I function adequately in this world. I am now 17 and I am a fulltime high school student in a general education program. I am in Honors Chemistry, Honors US History and Honors English. I am in Algebra 2, Spanish and Animal Sciences. I get straight As. I work out with a trainer 2 or 3 times a week to get fit. I study piano. I hike, cook, and help take care of a horse. I am invited to speak at universities and autism agencies. I am the author of Ido in Autismland, and a blogger as well. I have friends.
I say this, not to brag, but to let you know that people like me, with severe autism, who act weirdly and who can’t speak, are not less human, as Dr. Lovaas suggested, and are not doomed to live lives of rudimentary information and bored isolation.( “You have a person in a physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense,” the late Ivar Lovaas, a UCLA researcher, said in a 1974 interview with Psychology Today).

I communicate by typing on an iPad with an app that has both word prediction and voice output. I also  communicate by using good, old-fashioned letterboard pointing. If I had not been taught to point to letters or to type without tactile support, many people would never have realized that my mind was intact.
My childhood was not easy because I had no means to communicate at all, despite my 40 hours a week of intensive ABA therapy. I pointed to flashcards and I touched my nose, but I had no means to convey that I thought deeply, understood everything, but was locked internally. Meticulously collected data showed my incorrect answers to flashcard drills, but the limitations of theory are in the interpretations.
My mistakes were proof to my instructors of my lack of comprehension or intelligence, so we did the same boring, baby lessons year after boring year. How I dreamed of being able to communicate the truth then to my instructors and my family too, but I had no way to express my ideas. All they gave me was the ability to request foods and basic needs.
Here is what I would have told them if I could have when I was small. My body isn’t under my mind’s complete control. I know the right answer to these thrilling flashcards, unfortunately my hand isn’t fully under my control either. My body is often ignoring my thoughts. I look at my flashcards. You ask me to touch ‘tree,’ for example, and though I can clearly differentiate between tree, house, boy and whatever cards you have arrayed, my hand doesn’t consistently obey me. My mind is screaming, “Don’t touch house!” It goes to house. Your notes say, “Ido is frustrated in session today.” Yes, frustration often occurs when you can’t show your intelligence and neurological forces impede communication between mind and body and experts then conclude that you are not cognitively processing human speech.
In my childhood I feared I would remain stuck forever in this horrible trap, but I was truly fortunate to be freed when I was 7 when my mother realized my mind was intact, and both my parents searched to find a way to help me communicate without tactile support.
Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.

The Courage to Hear, to Learn, to Change

Guts means the courage to change. My book, my speeches, and my efforts have challenged people who have gotten accustomed to seeing severe autism in a traditional way. We need rudimentary lessons. We need drills to learn words, understand emotions, recognize the people in our lives, notice gender. We need baby talk because we don’t understand English or speech. We need M&Ms because we have no motivation. It is an illusion to imagine we can be more.
So, I am honored and amazed when parents and educators write to me that my explanations changed this thinking after years of seeing it one way. One person said it “hit him like an anvil on the head.” One described how he was, “shaken to the core.” One mom wrote a long letter about how she had always believed that the potential for her son to type was “delusional,” but after reading my book she understood how he could be smart but trapped internally. Now she types with him freely. He is 20 and finally able to communicate his ideas and finally is seen as intelligent. Brave moms, Brave dads, because they now have to face systems that have to look at why their methods could not see this possibility in the person with autism.
“I now speak normally with my son and it has changed everything,” I hear over and over. “I see my students differently,” I hear as well. One brave teacher wrote that she now wonders if she has been going at it wrong for decades. Kudos to them for thinking openly. It is guts.
I will tell you one lady with guts is my old teacher from when I was small. I write in my book how I loved her in spite of my frustration and boredom in her class due to babyish lessons and repetition. Fate has plans and recently my mom ran into her many times after years of no contact. After several weeks she told my mom she would like to read my book. I knew it would be painful for her because I talk about her- not by name, but she would know. I wrote her a note. After reading my book she came to my mom with a letter for me. She wrote that she tried to read it through my eyes. She was powerfully impacted and was determined to teach differently, to see her students differently too. She has been teaching a long time. This is guts and I admire her.