Category Archives: education

Breaking Barriers at UCB

This moving radio story is one too familiar to me. Hari Srinivasan is a kind of fellow traveller in two worlds. I congratulate him for his huge accomplishments. I have known the reporter Lee Romney my entire life and I guess you can tell she gets it. She actually edited both my books so by now she understands the challenges of nonspeaking autistic people remarkably well and it shows. The difference between Hari’s current life and his former training in ABA is stark. It is incredible how offensive I found it listening to the jolly infantile voices its practitioners used in the brief segment that described ABA in the program. Ugh. But it is important to show that popular treatment that so misses the mark in order to compare it to the great success of Hari once he found another way.

Please be sure to listen and not just read!

A Ten Year Old Advocate

My young friend, Diego Peña, has learned to become a fighter for nonspeaking children with autism. He is in general education, and has been for a while. Each one of us who accomplishes this is kind of like an icebreaker opening potential channels for other students to follow. It isn’t easy. I share a nice article about him with an interview. Contrary to the article’s implications, you can’t just hand an iPad to a motor impaired autistic kid and magically have perfect typing. It’s a process that takes instruction, time and practice, and it doesn’t happen at three, for the most part. ‘Typing,’ isn’t defined either. To clarify, it’s one finger typing. Diego’s success is good enough on its own merit that it should be applauded for what he has done, without embellishment.

So, without embellishment, Diego is a bright ten year old who has autism and doesn’t speak verbally. He has been a successful general education student in regular classes for several years, though not since he was three. He learned to communicate by touching letters painstakingly. He has the parents and the aide and the school environment he needs to thrive and to prove himself. And this he is doing every day.

Tips for Teachers Integrating a Nonverbal Student with Autism into their Class

My tenth grade English teacher, Amber Tesh, had never had a nonverbal, non-writing student in her class before. She said, in her speech at the Spectrum of Opportunity conference at Cal Lutheran University, that she already had more kids than she was supposed to have in her Honors English class when she was approached by a counselor asking if she could take on another student. “He’s really intelligent,” she told her, “Oh, and he has nonverbal autism and he communicates by pointing to letters.”

I had a great experience in her class because she connected directly to me, not my aide (called a BI,  behavioral interventionist, in her answers). Before she spoke on the educators panel at the Cal Lutheran conference she was asked to address the following questions and these are the answers she wrote out. I hope that her suggestions help other educators of neurotypical students who might be surprised to find themselves suddenly  dealing with something unfamiliar so that it can be a positive experience for everyone..

Below are the suggestions of Mrs. Tesh.

1.  What has worked?  What have you learned?

  • Speak to your class beforehand if possible. Ask the student (which I did with Ido) if he was okay with me talking to the class about why he typed and why he needed to communicate in that way. I think if we hide the obvious, the class becomes left out or confused, which in turn causes chaos. 
  • Relinquish control to the BI. Allow them to handle issues that might arise. Give them the control to excuse the student or step outside. Try not to step in or interfere with their job – even if you think “they CAN’T leave now!!!”
  • Form a relationship with the student and BI. It’s hard to wait for a student to type out an answer, especially if the entire class is eager to respond or are calling out. Have a special signal or gesture so that the teacher knows when the student is typing out an answer. Make it clear to the class if the wait is a bit longer than expected – I would often say, “I am waiting for Ido on this one” and the class just stopped and waited. 
  • Seat the student by the door if they need to step out or take a break. 
  • For the first few group activities (if you do group activities) – the teacher should form the groups. When students form groups they pair up with who they know and where they feel comfortable. Students get very uncomfortable quickly when they don’t know how to act in a certain situation or with a certain person. For many students in your class, this might be the first time they have been in a class with someone with autism or someone who types. Their first reaction is going to be to group up with friends, and then students get left out. Once students realize how smart and communicative the student is, they are eager to form groups. This happened with Ido. After a few weeks, I had people asking him to join their group. 
  • Allow the student to finish things at home. Certain things are just too hard to get done in a class period. 
  • Ask the student “enough” questions to ensure they got it. Then you will feel okay with them finishing at home.  

2.  What supports do YOU need/find helpful/valuable to YOUR success?

  • A good BI
  • A place for them to go to work if it’s not the best day or need extra time
  • A strong support system at home
  • A strong counseling staff that places the student where he/she would be most successful
  • Information about previous classes – what worked and what didn’t?
  • Advice on how to give / space out / time assignments (might come from IEP, counselor, BI, inclusion specialist)

3.  What advice do you have for other teachers? students? administrators?

  • Teachers – #1 is giving it a chance. As teachers we tend to be scared or thrown off by the unexpected or what we don’t know – and to be honest, having a student who types to communicate is a bit unexpected and scary. If we are nervous about something before we even try it, we tend not to do the best job. So, if teachers just give it a chance it’s actually just everyday business.
  • Teachers – As said in question #1 – talk to your students. There is no point in hiding the obvious. It might not be the most comfortable conversation, but they have to be able to recognize and accept differences.
  • Teachers – Make sure you feel comfortable that the student is actually doing the work. My biggest challenge was “Is Ido actually doing this writing / work”?  I mean you have this young man, who at first didn’t participate at all and would often times have to step out of class for long periods of time – and then he would turn in this work that even my brightest honors kids couldn’t do. So you have to come to a confident place that they are listening to you and completing the work on their own – even if someone else might be writing it down for them.  *Ido note: This is handled by observing the student communicating, typing and answering questions. It also becomes clear by relating directly to the student in conversation and questions and answers, but at first it is a novel experience for the teacher and seeing that the student is communicating is essential for teacher confidence.
  • Administrators – need to talk to their teachers. Ask them which class would be the best for the student. Lets be honest, as teachers there are just certain classes that are better or more “equipped” then others. 



Words from a College Student with Autism

My good friend, Samuel Capozzi, wrote this fine and informative speech for the all-day conference on nonverbal autism held at California Lutheran University last weekend. I am delighted to share his powerful message.

Samuel gradI once read that “God often uses our deepest pain as the launching pad of our greatest calling.” I believe this is true in my young life. Good morning, my name is Samuel Capozzi, and I’m a freshman at Cal State Channel Islands
in Camarillo. I am also pleased to be on the board of Autism Society, Ventura County. I have a diagnosis of moderate autism, and I’m considered non-speaking and non-writing. I only began typing to communicate about four years ago. A lot has happened in that short span! As a matter of fact, my entire life changed.

My communication breakthrough happened in the middle of high school. At that time, I was unable to expressively communicate all that I was taking in, all that I learned, and all that I hoped to achieve. I was reading Dick and Jane readers and doing double digit addition at 16 years old. This was a dark, dark time for me. After more than sixteen years of silence, I felt like I might never be heard, like I might never be understood, and like I might be treated as a toddler
for the rest of my life. To say that my hope was realized in May of 2012 would be a huge understatement!

I think it’s important to know that I didn’t suddenly learn everything with RPM, I was learning all along. I’m thankful my mom read to me at higher levels and showed me educational videos. I also did a lot of incidental learning. It’s a very hard thing to be deprived of rich, age-level learning experiences—experiences most people take for granted.

Life changed when my faithful parents took me to Austin, Texas to learn RPM—the method I use to communicate. Needless to say, many tears were shed in the Capozzi home upon the realization that not only do I understand what is being said, but that I also have excellent reasoning skills and a keen sense of humor!

I decided to stay an extra year in high school to earn a diploma and to become a college-bound student. With hard work and many sacrifices by my loved ones and me, I did it! My favorite class was Latin, and I enjoyed taking the National Latin Exam. I managed to score Maxima Cum Laude two years in a row. My school challenged the students to “Do Hard Things”, so I did, but not only for myself. You see, I understand that my success is my misunderstood and marginalized peers’ success as well.

My remaining high school years were jam-packed with academics which I thrived on! I was even my Mock Trial team’s journalist. It was a whirlwind of an experience, as I responded unusually quick to learning RPM. My high school counselor and teachers were extremely excited about and supportive of my new found means of communication. This was so important as I ‘spread my wings’ in my new world of communication, conversation, and academics. My Latin teacher
took a real interest in my journey, and this made me feel so supported and encouraged. She even read Ido’s book out loud to her family! Just one teacher can make a big difference.

By God’s grace and pure grit, I graduated with honors and managed to take the SAT. Not only was arranging for the necessary accommodations difficult and time-consuming, but I also sat for the test for over 6 hours! So did my friend, Ido. Nonetheless, I am thankful the College Board was willing to work with us on this because I know it will benefit others who face complex communication challenges in the future, and hopefully some of you here today!

As our understanding of autism evolves and increases, I am optimistic that accessing an appropriate education won’t be as challenging for others who communicate differently.

I was accepted at all three universities that I applied to, including Cal Lutheran, and offered scholarships based on academic merit and community service. In the end, I chose Channel Islands because I believe they were the best prepared for a student like me. Go, Dolphins!

Since attending CI, I love learning, walking the halls of a university, and obtaining higher education. As I understand it, I am CI’s first non-speaking, non-writing student. I simply can’t say enough about Disability Resource Programs at CI. I am truly embraced, and my presence is celebrated on campus. It’s a nice change! What inspires me most is my professors’ delighted
responses and even shocked responses when they hear my cogent answers and read my strong essays. I hope to pioneer a path for other students who communicate differently that may come after me. Knowing this helps me forge on when I become overwhelmed!

Life with autism is challenging and difficult in ways most of you could never understand. So, my efforts in high school and now that I’m in college are hopefully not only for my benefit but also for the benefit of my peers and society as a whole.

Autism is now a big part of our society with the prevalence at 1 in 68 births. With what we know, now is the time to re-think autism and give it a new face. Yes, life with autism has caused some of my deepest pain; however, living victoriously with autism is also my greatest calling. I am profoundly grateful to have meaningful communication, and I hope that I have helped some of
you to better understand its importance for everyone.

On Education and Communication; A Message to Parents, Professionals and People with Autism

School is finished at last. The year was tough but I learned a lot. I read great literature. I loved US history and understand my wonderful nation better. Chemistry was fascinating too. Learning how our universe is composed is thrilling to me. Me gusta aprender español también. I learned a lot about math and animal science too. All this is thanks to my index finger and typing my thoughts.

I have the desire to pursue a college degree. One more year of high school and this dream will be a reality. Over spring break I visited many colleges with my parents. It will be different than all day, every day, of high school in one place going room to room. But I will have the opportunity to get more education in biology, neuroscience and other fields, and maybe I can help improve our understanding of autism in more ways.

I push myself to get good grades. It matters to me that my grades show my intelligence. My teachers were great. They pretty easily adjusted to my mode of communication and welcomed me warmly. My life is so rich now. I have friends in school. I love to go.

My message is to parents who wonder if their child can learn. Only the most determined parents will find out. If you are working with experts like those from my early life, they limit your child in low expectations. They tell you that being impaired in body is being impaired in mind. They let you work on skills that barely progress and tell you that your child isn’t advanced enough to write.

If you keep on listening to them they will keep low expectations for a lifetime. I know it is hard to be the parent who disagrees. I watched my mom try to deal with my ABA team when I began to communicate at seven. I have  watched our friends fight school district attitudes. They went through a big hard slog. They also got their kids typing and into general education. More than anything else, the parents believed in the possibility that their child had more in them than they were told. Parents, you have to trust your guts. You see your kid all day in real life. They see a drill or a lesson, and these moments where the motor issues of severe autism are at their worst.

Professionals, I have a message for you too. I used to think you were all clueless and control freaks. This is not to say that people were not warm or kind because I liked my clueless teachers as people but resented their attitude of certainty. If you work with autism, be prepared to accept that a degree in psychology or sociology or speech pathology or occupational therapy isn’t giving an insight into more than symptoms. My brain and how it’s impaired is a guessing game, even for neurologists, so I think the certainty that many practitioners have when it comes to autism is really puzzling. Being open-minded and admitting that the brain is vast and mysterious is required, in my opinion, by anyone who works with severely autistic people.

Now I have a message for people with autism who can’t yet communicate, and I ask parents to read my essay to their kids, Have hope. More than anything, have determination. Life outside your head and stims is really worth striving for. I believe soon there will be too many people with autism who type to keep insisting we are one in a million. I am fighting for your freedom and so are others. Hang in there.

Back to School

First day of school tomorrow. I will have English, Spanish, World History, Algebra 2, Biology, plus an elective and PE. It will be a busy, hard year. More than anything, I’m excited to be returning to school. My old math teacher is the same, and my new teachers seem really nice and tolerant of me. It is nice to learn in school. I value the opportunity.

From My Speech, "Imagine Having Autism"

To a person without a disability it must be hard to imagine life with one. I think it is hard to imagine having a disability even for a few hours, so it is much more difficult to imagine living with severe limitations life long. I have not lived one day without autism. It is hard to imagine my life without it because I’m part of autism and it is in me. My mind is intact. My soul is free, but my body is the property of something else. This “else thing” is called autism. It looks like this: weird body movements, noises, lack of responding at times, a mask of flat expression on my face, impulse problems, and an overly sensitive sensory system, which is why I sometimes wear headphones.
But perhaps more difficult than all of the above,   is the attitude of others. It is obvious by my actions that I’m not smart, right? OK, not right. But you know my limitations make me appear not smart at times, and then people assume. It’s not so bad now because I type on an iPad , so it is obvious that I think and read, but I still need to prove myself to each person I meet. This is life with a disability like mine. People don’t know or understand, and there are a lot of misconceptions.
It is more lonely to be autistic than not, especially for people who can’t communicate. I have an exercise for you. Imagine that though you think just fine your mouth is unable to speak your thoughts. This means no phone conversations, no singing, no long talks (or short ones), no calling your dog, no telling people your ideas, how you feel, or your needs. In other words, very quiet and very stuck. You listen all the time to the conversations of others, but you can’t join in. Ever. Not for an hour, but forever. Now imagine that your hand is wobbly and doesn’t obey your thoughts either, so the option of writing is gone. That is isolation.
Now it gets tougher. Your body doesn’t stop doing odd movements. You behave oddly because of that. Now you have a taste of autism. But I think one more taste will help you get it. Imagine all this, and put yourself as a kid into school with others like yourself  and see yourself in a class doing the same boring lessons day after day, year after year, such as the days of the week, the weather, the ABCs, the 1+1s, all because your outside has fooled people into concluding you are dumb. Then the school tells your parents you don’t understand.
So now you know about my early life. I was lucky to escape my internal isolation because I was taught how to communicate, first on a letter board and now on an iPad. This enabled me to leave my special education environment and enter a general education one. My old classmates still remain in the same special education class. None have been taught to communicate yet.
In autism we are thought to be limited rather than trapped. I think the number of so-called mentally retarded autistic people is greatly exaggerated. How smart would you look if you couldn’t talk, gesture, write, or control your movements? It is a true frustration living like this with society’s misunderstanding, so I am grateful to begin changing perceptions.
Maybe we can work together to change the future.

Career Planning in Autismland

It is time I started thinking about my future. I will turn 16 soon and it makes me start to imagine that in a little more than 3 years I will be a high school graduate. Then what? My funding for an aide will stop or be reduced to a minimum because the support ends when high school ends. I don’t want to return to a non-doing life. High school is the beginning of my future, but with a reduction in  help in college and career, I will have to find a way. We all in Autismland depend too much on our long toiling parents. My observation is that normal kids move on, for the most part, though many still slack off too long for some reason. I don’t want to be a slacker. I want the kind of life that is independent, though with autism that is really hard. I want a real career that earns me a living. I think it’s necessary to be able to provide for yourself to feel good, but earning a living is tricky because the disability of autism interferes with our behavior. My motivation may help me try harder, but I wonder what career I can find. I’ve been told I’d be an excellent consultant for educators, autism professionals, and parents, and have done so already. Still, I think the time to begin planning is sooner, not later.

Getting Self Control

This morning my aide for school called to say she was sick. My wonderful dad had to turn around on his way to work and stay with me in the morning. Then my wonderful mom did the same after her meeting so he could go to work. And I had to miss school because there was no sub to be with me. I started thinking about it because I missed being at school, for once. In the past, I, once in a blue moon, had to miss school because my aide was sick and there was no sub. In middle school I didn’t feel too down about that because, like most kids, I liked being home. In elementary school it made little difference in my remedial education whether I went or not, but now I feel happy in school. If I miss it I feel bummed, so I got the insight that I better get more independent so I won’t be in this situation again.
If I could monitor myself better I could have gone today. Autism makes us distracted by impulses, so without my aide I would stim on the way to class, take too long to sit, and be noisy. I need to be a harder worker on my self control if I want to grow into a man, not stay a boy   depending on his mom for guidance all my life. The brain can triumph over many obstacles. I have read a bunch of neurology books about people with brain disorders who healed themselves somehow.
The brain is not a simple organ like the heart or liver because it has the ability to compensate or adapt to injury at times. Who can say what we can overcome or not? It seems to me I must find the way to get more self-control by resisting impulses. That is harder than I can imagine, but I guess I need to start sometime. As with anyone who fights their impulses, it gets easier with practice. But really I need to be determined to do it and I’ll be honest, my determination is not consistent. The knowledge of what I must do is the start, but the fortitude to do it is the finish.

My New School

My high school is a really nice place. The change between my current school and my old school is huge. Last semester I felt miserable. I knew the school did not want me there. They never lifted a finger to be kind or help me feel easy or relaxed. It was so stressful it is hard to describe.  I won’t go into details, but the administration was really making my life intolerable when all I wanted to do was access a normal education.
The fact is being disabled is hard enough without being rejected or made to feel awful about a disability you can’t get rid of. So the difference between that kind of environment and my current school is striking. The administration is kind and happy to have me there. The teachers really are respectful of me and nice to my aide. My stomach is not nauseous when I go to school now. I feel at home, so now I can just learn like everyone else.
My realization is that the attitude of the administration is incredibly important to a school’s culture. For some reason, my old school has a better reputation and is thought of as a better school out in the community. I know I’m in Honors classes so I am around the most motivated students, but my observation is that it isn’t better in instruction, friendliness, or student behavior. It is better at hassling disabled students though, and does have a reputation for that. The new school is like a hidden school because everyone wants to get their kids in the other one and I think this one is much better. Irony, for sure.