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My Mother and I Were Interviewed on Canadian Radio

Out in the Open

with Piya Chattopadhyay

Sunday March 04, 2018

‘Communication is a basic human right’: How this man with nonverbal autism found his voice

Ido Kedar uses his iPad to communicate.

Ido Kedar uses his iPad to communicate. (Courtesy Ido Kedar and Tracy Kedar)

Note: The following article is from the CBC webpage.

Here is the broadcast: Listen 12:21

 

Ido Kedar is a 21-year-old man with autism, who cannot speak (also known as nonverbal autism). He was told from a very young age that he would never be able to communicate independently.

But when he was 7 years old his mother, Tracy Kedar, says Ido communicated with her for the first time in a way she knew for sure that he understood her.

They were making invitations for Ido’s birthday party. He did not have the motor skills to hold a pencil on his own, and she was resting her hand over his. As they wrote, it seemed to her that he had a flash of recognition.

“I was kind of talking out loud and I said ‘Oh shoot, I forgot this word’ and under my hand I feel his hand spelling it out. And I hadn’t said any of the letters,” Tracy says.

“The system was gamed against me. If I showed intelligence, my mucked up motor system took over.” –  Ido Kedar

People assumed that Ido didn’t know how to read or spell, but by prompting different words, it was clear that he knew more than they had thought.

“I put away the invitations and … I remember asking him ‘Why didn’t you show me before?’ and under my hand I feel him writing ‘I didn’t know how to,'” Tracy says.

She was delighted, but that feeling was accompanied by the realization that he didn’t just have the capacity to communicate and understand in that moment. He had for years prior.

“(I was) overjoyed and very guilty,” she says. “There was a lot of regret for not having discovered it sooner.”

Catching up on lost time

Ido talked to us using his iPad, typing out words one letter at a time. It takes him about three seconds to type each letter. Due to the amount of time involved, we sent him questions in advance.

Ido says that he was just as shocked when his mother discovered that he could communicate.

“I had no hope that my intelligence would be discovered. The system was gamed against me. If I showed intelligence, my mucked up motor system took over,” he says.

Ido Kedar on the hill

Learning that he could communicate prompted complicated emotions from both mother and son. (Courtesy Tracy Kedar and Ido Kedar)

Experts often treated his attempts to show intelligence as an accident, he says, which made it harder for him to believe that he could prove it. So once his mother did understand, Ido shared her joy, but had another, more complicated reaction.

“Honestly I was mad too. I had a lot of resentment inside because of my frustrating experiences being a smart kid trapped in a dumb body,” he says.

Tracy says that some people remain skeptical about his ability to act independently. Even professionals who worked closely with Ido didn’t believe it. However, she says she can live with the need to convince some people that he’s intelligent because their reality prior to her discovery was worse.

“I could deal with them thinking I was a delusional mom in denial. That was far less difficult than believing my son was not ever going to progress,” she says.

Learning to type

As for Ido, being able to communicate opened a whole new world to him.

“My mom and dad found me a teacher who taught me to type independently. Then it became really hard for the experts to refute. But it took time to get to this level of proficiency,” he describes.

Ido Kedar mountain

Once Tracy Kedar new her son was able to communicate, the next challenge became proving it to others. (Courtesy Tracy Kedar and Ido Kedar)

He learned at first using a cardboard alphabet chart, moving on to a keyboard and then eventually an iPad.

“Communicating has enabled me to break free, to not be as trapped by my disability, to help others and to correct scientific understanding of non-speaking autism.” he says. “Communication is a basic human right.”

Both mother and son now work to help people who are nonverbal make the same progress that Ido had.

In 2012, he released a book about his experiences called Ido in Autismland: Climbing Out of Autism’s Silent Prison. He has a second book, this one fiction, coming out soon. 

This story appears in the Out in the Open episode “Divides”.

Typing to Communicate: Tips for Parents Interested in RPM— Just Give it a Go! (Part1)

 

I’m honored to share this informative and personal essay by a brave and generous mother, Susan Finnes. The determination of some mothers to get communication for their autistic children, even when local communication instructors are not available, amazes me. In some cases, people may have easy access to Soma, or other skilled people who teach typing to communicate, like my mom started to do. These teachers can transform lives.

But, what happens to people without access to these teachers, who live far from the opportunity, or who simply cannot afford to pay for lessons? Thankfully, in addition to books, there is now an online forum for parents and YouTube training videos that the author of this essay, Sue Finnes, put together. I think this labor of love that that Sue and her son, Chris, have undertaken is brave and incredible. They are willing to show their mistakes and their successes to hundreds of unknown people. I admire Chris for being willing to let people judge—and Sue, the same.

I am incredibly grateful as an autism advocate that they have created these educational and support networks to help people with autism and their families.

Because it is long, this essay will appear in two parts. In Part 1, Sue shares her journey with Chris into independent letter pointing. In Part 2, which I will post tomorrow, she shares practical tips for those interested in pursuing this with their own children or students.

Thank you again to Sue and Chris.

Ido

 

Questions I had when I first heard about RPM in 2009 :

What exactly is RPM? How can I learn RPM? Will it work for my child?

I scoured the internet looking for answers, looking for examples and could not find a lot of information. I had seen a short video of Soma (Soma Mukhopadhyay, who developed RPM) a couple of years previously and had formed the opinion that RPM was not for me. I saw her talking quickly, maybe even doing a poem with a child who did not look at all interested. Why on earth would I want to do this with my severely autistic non-verbal child – surely it was more important to focus on speech and how to dress himself?

Christopher was aged 10. His speech had not developed, we had made some progress with getting dressed and we worked mostly on social/interactive play skills. His communication was limited to the use of gestures to show what he wanted (eg. pointed to his bottom for toilet) and to taking us by the hand to lead us to what he wanted. I had done some basic word picture matching using flash cards. I was desperate for Chris to have a communication method – something more than a PECS system (where you have pictures of objects) and something others would be able to understand – so not sign language. I looked again at RPM – I saw a video this time of Soma teaching a child to point using written paper choices and realised that this was something we could possibly work on. I experimented – using a well-read Teletubbies book – asking what did the Teletubbies spill ?– tubby custard or water? I ‘m ashamed to say now that I was surprised when Chris chose the correct answers – you will see me smiling on this clip from Oct 2009 https://youtu.be/ajDvQEUBgqE . I thought I’d always believed and accepted him , but now we were moving onto something with huge potential ! Here is another short clip November 2009 – you will see that I quickly moved on from Teletubby books to the history of Bonfire night https://youtu.be/BIBn67V608Y . Please note that my techniques here were not very good !

From that moment on I exposed Chris to more age appropriate topics and began to talk to him more about everything –and started WRITING EVERYTHING DOWN assuming that he understood. We worked on getting him to point to the written choices. We took his interests /motivations and expanded them – bringing him interesting information eg singing twinkle twinkle lead to talking about the solar system. I did not think that Chris would cope with a long flight to the USA to see Soma , but found out about the Barrett family in the UK whose daughter Heathar had achieved success with Facilitated Communication, so I enlisted their help and early in 2010 we began to learn how to support Chris to type. I remember them telling me that I had to believe that Chris had been like a sponge taking everything in all these years – but with no means of showing us. It took MANY MONTHS of daily practise before we were able to get anything from him, which made sense, but when we did, it showed me how intelligent he was. I and Chris’s other helpers practised with him every single day and we were eventually giving light elbow support while he typed.

Fast forward to 2011 – I heard that Soma was in the UK and managed to get some sessions. I didn’t fully understand RPM – i thought i’d just take the good bits and adapt it. This was another WOW moment for me – the types of lessons Soma presented were way more advanced than we had been doing . Even though I saw Chris pointing independently with the stencils with Soma , I decided that I wanted to stick with FC for longer answers and would do written choices for other questions. Again we stepped up to the challenge – I started to work my way through a Biology student workbook, another helper did Physics, another Maths and Poetry. We made good progress -I realised that Chris was capable of learning , and was finding it interesting and stimulating. We were able to see Soma again in 2012 – this time I and Chris’s team were fully prepared ! We all studied Soma’s red book beforehand and we analysed in detail what she was doing in her sessions .

The penny dropped ! This method of teaching was not just about presenting information and checking student understanding –the stimulating information was the tool which enabled you to engage the child while working towards the skill of INDEPENDENT pointing/typing . It also enabled you to stimulate thinking and reasoning skills and taught the student how to express his thoughts and opinions. From that moment on we changed from supporting Chris to type , to teaching him the skill of independent pointing – beginning with the stencils.

Chris had at least 3 RPM sessions every day with different tutors. Initially there was lots of prompting – verbal ( eg. ‘up up, , lift your elbows’ ) , directive (eg ‘touch here’) and air prompts ((waving your fingers over the stencil in the direction of the letter). If Chris was struggling to get a letter we also had to motor model the movement with him – showing him hand over hand ‘this is how you touch the B ‘ (doing it twice hand over hand then immediately asking him to do it himself) ‘now you touch it’. I set up records on my PC – and after every session the tutor would record their notes from the session. We found that the process of writing up notes also helped us to analyse our own sessions – looking to see how much talking we were doing and how many responses we were asking for. Many sessions were filmed and I also set up skypes with Soma to get feedback. Up until 2016 Chris was having a minimum of two RPM sessions a day ,5 days a week . He is currently using the laminated letterboard and we are working on independence by beginning to get him to hold the board himself for a few letters/short words . Here is a short clip to illustrate.. https://youtu.be/vGL5Xb5o2lA

We have incorporated lots of purposeful movement into his programme – physical exercises, dancing, picking up and passing objects etc. I feel that we would have made more progress but have had setbacks with Chris’s health – he developed epilepsy and has frequent seizures which take time to recover from. As he is transitioning to adulthood Chris now also attends a skills centre two days a week and works on motor skills, living skills and independence skills. He is also learning to use the letterboard in different environments and with different people.

 

See you tomorrow for Part 2!

 

Learning to Communicate Changes Lives, Part II

My book, to my amazement, has impacted lives in many far-flung places. I get letters from all over the world.

I was so happy to read this article from Ireland that more people should read. This isn’t an Irish tale. It’s an autism tale. Once again, a mind and a soul is set free by a letter board. I love how Caoimh (pronounced Keev) was liberated by his persistent mother. I toast all the persistent mothers who don’t give up, from Soma, to my mom, to Caoimh’s mum in Ireland, and all the others. He is one of a measly 40 in Ireland who type, but I know there will be more.

sdp14_mizenhead_bg

Learning to Communicate Changes Lives

Here is proof that learning to communicate changes lives. I get thrilled every time I hear how my book has helped others move to communication. Life misunderstood, isolated and silent is not an adequate result for  years of therapy and a parade of specialists who marched through this family’s house.

There are stubborn people who have to listen to us, but they won’t, I’m afraid. But there are open people who have listened.

Things are improving, little by little. Here is one family’s story.

Autism in France

The post you will read by guest bloggers, Laurence Le Blet and Karen Hatungimana, and a linked essay by Nicolas Joncour, are about the situation for nonverbal autistic people in France currently. I was unpleasantly surprised to learn how behind France is in educating people who have autism or in supporting children and families. I have many complaints about the system here in my own community but I know that I have been very lucky too. While an unwelcoming school or an incompetent aide has been part of my experience and has negatively impacted me, it has not been my entire experience. The opportunities I have been given to get a normal education, to have a trained aide with me in school, to have the chance to get a college degree and even to become an advocate for people with autism has been a blessing I cannot take for granted. It is time to change the paradigm about autism in France.

“The Right to an Education”, Article Typed by Non-Verbal Autistic Piano Student with Dyspraxia


Guest Post

by Laurence Le Blet and Karen Hatungimana

The situation in France for autistic people has progressed very little for many years. The professional orientation of case-managing organizations, medical-social institutions and specialist doctors is still largely psychoanalytic. The National Health Authority, (HAS), does not recommend psychoanalysis, and specifically condemns the “ le packing” treatment (in which a patient, wearing only underclothes, or naked in the case of small children, is wrapped in towels and soaked in cold water for the stated goal of enabling the child to rid himself of “pathological defense mechanisms.”

Image result for le packing autism

Despite these recommendations, these treatments remain widely present and the national institutions have not caught up with new recommendations for autism treatment. These archaic and outmoded approaches are found in all institutions: justice, health, schools and in society in general. In fact, societal ignorance regarding autism is so pervasive that reports made on parents and subsequent social placements are many; children are always at risk of being removed from their parents custody.

Although autism has been officially recognized as a disability since 1996, the training of nurses and special educators is still mostly based on psychoanalysis and autism is widely seen as a psychosis. Consequently, children with autism are not encouraged to attend regular schools with their same age peers. Despite the legislative Act of 11 February 2005 on Equal Rights and Opportunities, Participation and Citizenship of Persons with Disabilities, the educational situation for autistic children has barely changed. Only 20% of autistic people are enrolled in regular schools, mostly not full time, and parents have to fight for their children to be and remain in ordinary primary school. Most autistic kids are referred to medical educational institutes or day care hospitals at a very early age (from kindergarten), where the right to schooling and the ability to participate in society is limited. Medical-educational institutes and day hospitals are supervised by the Ministry of Social Affairs and the Ministry of Health )

Another factor negatively affecting the ability of autistic children to attend regular school is due to the fact that many children do not have the necessary trained support. Children may wait a long time to obtain a personal assistant and until then, must remain at home. However, many assistants are not adequately trained nor do they have a good understanding about autism. Additionally, most schoolteachers believe that students with autism suffer when they attend a regular school and they believe the child should be removed from the school and referred to specialized institutions. When parents are not well informed of their child’s potential to learn, as well as their basic rights, (and most of the parents are not), they are pressured to enroll their kids in medical-social institutes. Those parents who believe in their kid’s potential and capabilities are accused of making their child suffer in a regular school, or are told that his presence in a regular school makes the teacher and other students suffer. Thus inclusion is strongly discouraged. There have been a few lawsuits by parents, however this is rare.

There is a lack of understanding of integration and inclusion concepts. Parents of children with autism who strive for inclusion have to overcome innumerable obstacles including: delayed or obsolete diagnosis, absence of proper care advice, fighting for financial support, and most significantly, the permanent anxiety of the psychiatric hospitalization of their children after their death because nobody would be there anymore to fight for them.

The Committee on the Rights of the Child (UNO) has issued its conclusions on the implementation of the Convention on the Rights of the Child.

Here is an excerpt:

The Committee urges the State party to take immediate steps to ensure that the rights of children with autism, , And that these programs are in conformity with the recommendations of the High Authority are authorized and reimbursed. The State party should also ensure that children with autism are not subjected to forced institutionalization or administrative placement and that the parents are no longer subjected to reprisals when refusing the institutionalization of their children. “

In France, despite there being laws and recommendations for good autism treatment, most are not widely known and they are not consistently implemented throughout society. Money that is designated to medical-social institutions would be better applied to education. Inclusion should be effective throughout the entire life of a person with autism.

France ‘s motto « liberté , egalité , fraternité »  should be for all.

Image result for france

 

 

Autism Exercises

Exercise helps me in every way. When I was young I suffered daily from having a mind that couldn’t control my body well. It made it hard for people to realize I was intelligent. I have worked for years on improving this skill and continue to do so. One of the ways I do this is through exercise.

I believe exercise is incredibly important in helping people with autism. I use exercise often to help me control my feelings or my energy level. Of course, it also helps me to have better mind/motor communication, better motor planning, better fitness and even to participate in certain physical activities or sports I never could do before.

I exercise in a variety of ways including hiking, bicycling, riding a scooter, jogging on a treadmill, swings and trampolines, as well as working out with  trainers.

I share below a few short film clips of me working out as well as a photo of me sawing a tree branch on a two-man saw with my dad.

Parents: Don’t be afraid if your kid isn’t fit yet or even into moving. It took me a long time to get to this point. You can build up the skills and interest over time by starting slowly but making it a part of the regular routine. It’s so worth it!

2016-09-10-12-17-33

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Autism Cooks

ido_cooking_4I have written previously about my love of cooking. Cooking has given me a lot, and I’m not just referring to the food.

I have to remember instructions in recipes (multi-step planning, for all you OTs out there). I have ido_cooking_3to search for and retrieve ingredients, utensils and cooking tools. This is important for people who have autism.

I have to handle sharp objects and hot objects. I am aware of personal safety.

I have to control impulses and not eat unfinished food (especially cookie dough).

I have to work on fine motor skills in chopping, pouring and measuring.

I have to be patient, plan, anticipate and multi-task.

I have to be present while it cooks.

I learn self-help skills washing up.

All in all, it’s an “OT session”ido_cooking_2 I can have fun with since I’m actually doing something meaningful.

Bon Apetit!ido_cooking_1

No, I’m Not a Horse: A Refutation of the Clever Hans Comparison to Autistic Typers

This is a horse.

This is a human.

This is Clever Hans. He was a horse in the early 1900s who looked like he was doing simple math equations by stomping his foot. Turns out he was just picking up cues from his handler.

Horses have no innate propensity to develop language, understand complex language or communicate in language. I love horses, but they are horses, not humans. Humans have an innate propensity to develop language, understand complex language and communicate in language; therefore even humans who lack typical access to verbal communication because of a disability still have the capacity to grasp language (except in extreme circumstances).

Humans who are deaf develop sign language.

Humans who can’t speak verbally type or use augmentative communication.

Humans with Down Syndrome understand and speak utilizing the complex patterns of language.

So, why is it so hard for some professionals to believe that humans with autism have innate language capacity?

For example, here is a course in the Applied Behavioral Analysis department at a university (instructor’s name removed), which is described this way:

Ever since Facilitated Communication (FC) crashed onto the shores of the U.S. in the early 1990s, remarkable claims of sophisticated communicative abilities in otherwise nonverbal people with autism have proliferated. FC itself has morphed into other forms, including the so-called Rapid Prompting method. However, regardless of the name, all of these techniques have one thing in common: They claim to show that previously nonverbal people with autism are in fact highly verbal and expressive so much so that the diagnosis of autism is sometimes questioned. This is not the first time in history in which remarkable claims of communication have been made about nonverbal individuals. Perhaps the most famous case was that of a horse in Germany around the turn of the 20th century, named Clever Hans. In this talk, Dr. X describes the story of Clever Hans, including the experiments carried out by the German psychologist, Oskar Pfungst, which revealed the nature of Hans’ cleverness, and its lessons for recent claims of remarkable communicativeness in people with autism. Dr. X urges the same level of scientific scrutiny regarding these claims as with Clever Hans, and suggest (sic) that all stakeholders in autism should approach remarkable claims skeptically and scientifically.

I will analyze this paragraph sentence by sentence.

Ever since Facilitated Communication (FC) crashed onto the shores of the U.S. in the early 1990s, remarkable claims of sophisticated communicative abilities in otherwise nonverbal people with autism have proliferated.

When I was in high school I learned in my English class about loaded language intended to bias the reader. FC “crashed on the shores.” Its claims of success are “remarkable,” because the typed communication of nonverbal people is “sophisticated.” Ha ha. You see, autistic people thinking and typing is a joke already.

FC itself has morphed into other forms, including the so-called Rapid Prompting method.

Here RPM is lumped with FC , the method that “crashed” on our shores, in an apparent attempt to discredit it. RPM is actually a different teaching method than FC, and though it is referred to as “the so-called Rapid Prompting Method,” that is the actual, copyrighted name of the method.

However, regardless of the name, all of these techniques have one thing in common: They claim to show that previously nonverbal people with autism are in fact highly verbal and expressive so much so that the diagnosis of autism is sometimes questioned.

This sentence is packed with disinformation. Nobody questions the autism of people who type except for those who don’t believe that severely autistic people understand language. By their logic, if an autistic person types he can’t be autistic. This is circular logic.

My old ABA supervisor said exactly this about Tito Mukhopadyhay because he communicates by typing independently. He stims. He has every autistic symptom in the books but since he is obviously communicating sophisticated thoughts he can’t be autistic. Ha ha. What would his correct diagnosis be then, and why was he diagnosed with autism as a young child before he typed? It is intriguing that these particular professionals don’t question whether their understanding of autism is correct when someone with autism comes along who challenges their theory. Rather, they claim that it’s the person who is incorrect. My book actually explains pretty thoroughly what it is like having autism.

This is not the first time in history in which remarkable claims of communication have been made about nonverbal individuals.

No, it is not. How can we present autistic communicators as a joke?

Perhaps the most famous case was that of a horse in Germany around the turn of the 20th century, named Clever Hans.

By comparing autistic people to animals. How witty.

In this talk, Dr. X describes the story of Clever Hans, including the experiments carried out by the German psychologist, Oskar Pfungst, which revealed the nature of Hans’ cleverness, and its lessons for recent claims of remarkable communicativeness in people with autism.

As I mentioned, I think a horse is an animal with no innate capacity for language and a person with autism is a human with innate capacity for language despite being severely hampered by bad theories, bad instruction and a severe mind/motor disconnect. (For more information on the mind/motor problem, please see my essay Motor Difficulties in Severe Autism.

Dr. X urges the same level of scientific scrutiny regarding these claims as with Clever Hans, and suggest (sic) that all stakeholders in autism should approach remarkable claims skeptically and scientifically.

By all means, skepticism is good. I have dealt with and convinced skeptics for many years. Biased, hostile people are not skeptics, nor scientists.  (See Scientific Un-Query and More on Scientific Un-Query). By the way, people who have autism are stakeholders too, as are their parents.

Science is filled with stories of people who introduced new theories only to be treated with scorn by professionals who toed the line of the day, but the theories were ultimately  proven to be correct. Now we laugh at the obtuseness of the critics in these cases, but they actually ruined lives and reputations.

I’m an autism expert. I didn’t study it in class. I didn’t teach ABA to kids. I did however live and breathe it. I learned that experts and professionals can be well meaning but wrong. I learned that I, and others who type, have much to teach about the truth of the disability. My expertise is solely based on empirical evidence and anecdote. I never ran tests on myself. Nevertheless, I know my nonverbal autism inside and out. My autism is a mind/motor disconnect. It isn’t a language processing issue. It isn’t cognitive delay. It is a real disability, hard to live with, and mostly it is painful to be unable to speak, but not speaking is not the same as not thinking.

 

 

 

 

Insights from the Educator Panel at the Spectrum of Opportunity Conference: The Importance for Educators to Have a “Teachable Attitude”

The panel of educators at the Spectrum of Opportunity conference at California Lutheran University had two high school teachers, one elementary school teacher, a BI, Debbie Spengler, who you saw in Dillan’s two films in my last post, and it was led by Adrienne Johnston, who is an inclusion specialist for the Los Angeles Unified School District.

I met her when I was just starting to get a general education in middle school. I was the first nonverbal autistic kid in general education. I was not behaving like a normal kid and I was trying so hard to get my opportunity to be educated. Mrs. Johnston was an expert in the school district and she came to observe me in class and right away she knew I had no business being in general education. I was so scared and my aide was alarmed. When I got home I told my mom what happened and she called Mrs. Johnston. After the conversation, Mom was sort of worried because pretty clearly Mrs. Johnston didn’t believe I was typing. My mom invited her to our house to get to know me better. To her great credit, she came. But more importantly, she had the ability to acknowledge what she saw; that I was really communicating by typing and that I thought for myself.

I don’t mind people having skepticism. It’s only natural and logical because outer autism makes us look inattentive, disengaged and infantile. How do people look at that and see our potential to be in general education, especially when they have been taught theories that interpret the outer behavior as a reflection of the inner world? So, Mrs. Johnston’s conversion to seeing that I was smart and that I did communicate was huge. Over night she became my ally within the school system, and my cheerleader. Her interacting with my teachers helped them to understand autism and to be open to teaching me, and this helped pave the path for my friend, Dillan, and other students with autism who entered general education. She bravely confesses that she “knew it all,” until she discovered she didn’t. But being open to learning a new way to look at autism made her a better expert than she ever imagined.

Below, Mrs. Johnston addresses why professionals must be open to learning.

I was a “doubter.” I was a special educator with all the knowledge of an expert, who had worked with students with autism for many years, and Ido had to prove to me that he was really communicating.  Ido was the first person I met who challenged my assumptions about autistic people.  I always assumed that what ‘these’ kids needed was an opportunity to be included and exposed to general education curriculum, but mainly for appropriate social skills modeling and learning alongside their peers, rather than actually gaining content knowledge of age and grade appropriate curriculum.  After all, how could a child with a severe presentation of autism (in Ido’s words, “a limited-verbal, hand-flapping oddball”) have such advanced cognitive and academic abilities?  Our students have to prove themselves over and over again because, let’s admit, seeing one thing and believing another about them is very difficult–  especially for us professionals who have built a “theory” of autism based on our interpretation of what we see!

Since I first met Ido, in August of 2010, and his mom invited me to his house to see his typing and discover for myself his true abilities, I have had the privilege to support several more students with autism who type to communicate.  I see it as my job to support students in general education classes and work with their teachers and administrators to explain what each student’s capabilities are and how each one is able to learn grade level curriculum if given the opportunity and individualized supports needed; specifically, the ability to communicate what
they know.  I have noticed that some educators have a tendency to place students like Ido in a “cookie cutter box,” (as I did) based on preconceived notions about students with autism.  If teachers will see “the Idos” in their classrooms as individuals and resist this need to put them in a limiting box, often disguised as compassion, there is a much greater chance that our students will be successful and prove themselves behaviorally and intellectually.

I can inform teachers about students’ needs, abilities and challenges but sadly, it is next to impossible to educate them about how to be kind or respectful.  What is critical is that teachers not necessarily know everything about the student, but are willing to learn and be open to the fact that difference is not deficiency!  In other words, it is ALWAYS safest and most respectful to make “the least dangerous assumption.”  Simply put, attitude changes everything!  In Ido’s words, “It really takes so little to be cheerful and warm and supportive to
a student, and what different results can be achieved!”

As you hear from the teachers on the panel, I think you will notice a theme:  each of these teachers is supportive, accommodating and believe in our students’ abilities despite their limitations.  These are key ingredients to any student’s success!  And, yes, I know it is challenging as I work with our kids every day and some days are not good…some days I doubt.  But, I remind myself how hard kids with a label of autism have to work, and the battle they have to fight to prove themselves – over and over again.  It takes great courage on their part to
work through their fears, obstacles and challenges that they face every waking minute of every day.

For example, one of my students typed recently when having a particularly difficult time sitting in class:

“My mind is going so fast. My head is moving all the time with thoughts and sounds. It’s so hard to focus. I may forget to be in control of my body and suddenly I’m in the trash eating something. I don’t know why I’m antagonistic. I just know that I lose focus and then I make bad decisions and I feel like my mind is not working. When I’m silly I don’t think I’m funny. I can’t settle down and my whole body goes crazy. My single-minded persona takes over and I get all bored and silly and I can’t stop laughing.”

When I asked if I could share his words to help teachers understand his behaviors, he said:

“Yes, I am feeling emotional. I am working on myself so much. I know I can be annoying but I want to be an inspiration for others. I am honored that you want to use my words and I am nervous about it but I want to be all that I can be.”

He, and all the students like him, are the reason I do what I do.  They are my inspiration!

In conclusion, what I have learned from students is that I need to listen to those I purport to teach and to their families who know them best.  How do I listen? Again, “attitude changes everything!”

* First, I must have an open attitude and let go of any preconceived notions about students with autism.  Like Ido has said, “people with autism are not all variations on a spectrum and do not fit in neat little boxes!”

* Second, I must have a teachable attitude, that is, acknowledge my need to learn
from my students.  Because once I learn to listen I can begin to listen to learn.

* Third, I must have an attentive attitude towards each individual’s needs and creatively look for opportunities to give non-verbal students ways to communicate.  I understand no method of communication will work for every student.  The challenge is to find some method for each student to have active participation and a voice in grade level curriculum.  Communication is a very basic human need.  The lack of it can lead to complacency, frustration, social withdrawal, or severe behavior creatively look for opportunities to give non-verbal students ways to communicate.

* Finally, I must have an expectant attitude and anticipate many, many more students  who will surprise us with their words of wisdom if given the chance!

I want to leave you with this quote from a boy with autism:
“To each autistic person living without a voice, I hope you find a person in your existence that will believe in you, try to connect with you, and most importantly, do it always with respect and belief in your abilities to think.”         Dillan

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.