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

Harder than It Looks: Learning to Type on a Letterboard and Keyboard is a Process

Guest Post

by Susan Finnes, with Christopher Finnes

My son Christopher is now 17. He is non-verbal and outwardly behaves in a way which would lead people to believe he lacked intelligence/understanding. The Rapid Prompting Method (RPM) has enabled Chris to show us, through pointing on a letterboard, that he is a creative and intelligent young man.

Ido has been an inspiration to us – his book particularly helped me to understand and to discuss with my son the issues he faces with his motor control/purposeful movement. When people see students like Ido using his iPad independently it is only natural that they aspire to getting their own children to this stage as quickly as possible. There is often a lack of appreciation of the amount of work that may need to be done before getting to that stage.

People say to me, “Why don’t you just get Chris to type straight onto a laptop?”- if only it was that simple! It is important to understand that the amount of time it will take to develop the pointing/typing skills will vary greatly between students and, as Ido has already explained in his book, the belief of the people who surround the student will also have a huge impact on progress.

I am sharing parts of our journey here primarily to help give some more perspective on this skill building process as, for us, it has taken a long time and is still a work-in- progress: — We first saw Soma in 2011 for six RPM sessions (and have seen her each year since then). Chris started pointing on the 3 large stencils and each day we saw how Soma built his skills through verbal and air prompts until he was able to point on the single A-Z stencil. We were also able to observe other students who were at different stages of RPM – some who had more motor challenges than Chris – some were already using iPads. It was clear that everyone had their own rate of progressing.

These first sessions were all a bit of a whirl wind. At the time it was difficult to fully appreciate exactly what Soma was doing and why – as a parent you find your emotions run high and it is hard to detach yourself and analyze what is happening.

It was hard to replicate Soma’s success at home. Chris was ‘all over the place’ – how had he been able to have a conversation with Soma? I had a small team of people working with Chris and we realized that we needed to first build our own skill levels before we could help him to move forward. How did we do this? – by analyzing and studying the videos of the sessions : how did Soma pass the pencil? What angle was she holding the board at? etc, We transcribed word-by- word Soma’s sessions –looking at how she phrased her questions and how she gave verbal prompts. Then we practised, filming ourselves, writing up our sessions in detail and giving each other feedback – continually setting improvement goals for ourselves.

Our learning never stops – constant analysis needs to happen even now as issues are always coming up e.g. Chris may spend time with his hand wandering around the board before getting to the letter he wants. When this happens we need to work out how to help him with the skill of getting straight to the letter.

One aspect of RPM which I feel is particularly important to appreciate is that it works using academics. Learning the skill of accurate pointing on a letterboard would be exhausting and tedious without a context. The teach/ask part of RPM lessons not only provides intellectual stimulation by giving Chris interesting information but also, when he is giving us ‘known’ responses, we can identify his motor challenges and the issues/skills we need to work on. We present a wide variety of age-appropriate topics – history, biology, physics, poetry, current affairs, art.

We also work on the skill of open communication – beginning with single words and gradually increasing to longer outputs. This is another important point – all of Christopher’s most creative and expressive work has been as a result of an academic lesson. There is a skill to this – we don’t just say, “now how do you feel about that?” We instead explore something related to the lesson and maybe discuss it in the third person eg. ‘if you were living in that era and writing a diary entry what would it say?”

– Once we had built up our skill levels on the stencil it was time to push Chris forward onto the laminated letterboard. This was after six months of practise on the stencils – (three sessions a day) and it was gradual transition – sometimes just a few letters on the laminate. At first we held this vertically and gradually began to tilt it. This process will vary greatly with different students -some need lots of ‘mirroring’ from one board to another, others can transition in a few sessions without a lot of help.

When you find a way to hold the board that works for your child at an angle that suits their ability to point accurately and have open communication it would be easy to stop and think you have achieved your goal. However this will always leave the child reliant on a skilled facilitator – I am always looking to move Chris on to the next skill to enable him to eventually become fully independent.

– So five years into our RPM journey Chris is currently pointing quite confidently on the laminated letterboard when it is held nearly horizontally. He can also point on a QWERTY keyboard which is held at a slight angle. He still needs verbal prompting to ‘keep going’ and his tolerance can vary greatly from day to day (he is also affected by some ongoing health issues).

We are working on his independence by mirroring words to either the laminate or keyboard flat on the table or held by him. I have learnt that it is not a great idea to compare Chris’s progress to others – e.g. some students can easily move from one board to another, some have the ability to ‘match’ so can easily touch a letter on the laminate and then on a keyboard. Chris, on the other hand, has to learn this all through muscle memory so requires continual practice and repetition – and lots of verbal/air prompting. I have helped other students to get started with RPM and learnt that every student is different and will progress at their own rate – so there is no rush.

Over the years we have done lots of skill work outside of the RPM academic sessions. I believe that all of these things also contribute to his improving letterboard skills. Skills have included physical exercises (including participation in Special Olympics events), horse riding, playing games, learning to draw, helping around the house.

Everything we teach is focused on helping Chris to move his body purposefully and independently. Each action has to be broken down into small component parts, explained and motor-modeled so his muscles can learn how the movement ‘feels’. Just to explain further , Chris cannot just imitate an action -I have to physically lift his leg, touch his thigh muscles telling him to engage them to show
him how to step over a hurdle. Then we have to practise, practise, practise and practice until he has the muscle memory to enable him to move onto the next skill – running over the hurdles (he can do this now!). I believe it is possible to teach him anything – but it will take longer than for other people.

In a recent discussion with Chris he wrote, “MANY PEOPLE
DO NOT REALISE THE IMPORTANCE OF BUILDING SKILLS. I DIDN’T REALISE THE IMPORTANCE MYSELF UNTIL I BEGAN TO WORK ON THEM. BUILDING SKILLS IN A VARIETY OF WAYS – RUNNING, SPORTS, CRAFTS AND GAMES – IS HELPING ME TO CONTROL MY BODY, LEARN NEW THINGS WHICH BRINGS ME ENJOYMENT AND HELPS ME TO BE ABLE TO BE PART OF THE COMMUNITY.”

Here is a short clip of us discussing skill building in relation to his pointing

IT HAS NOT BEEN EASY. EVERY DAY I HAVE TO PRACTISE.

How do you feel about using the keyboard/ipad?

IT IS HARD TO LEARN NEW SKILLS. I AM SLOWLY IMPROVING BUT IT TAKES A LONG TIME.

What Chris said above I can equally apply to myself. I am constantly learning with him, developing my own skills and know that I still have so much to learn. Some days it seems that the journey is insurmountable – but breaking it into small achievable goals makes it more manageable – one day and one step at a time!

Spectrum or Different?

Autism Spectrum Disorder is pretty broad. I met a young woman today who has been diagnosed with Autism Spectrum Disorder. She seemed totally like every other neurologically normal person I’ve met in terms of motor, speech and social skills. Maybe I’m missing something she suffers from, but why on earth do we have the same diagnosis?

If I get a paper cut and you amputate your leg, people don’t say we have a Laceration Spectrum issue. But it’s worse with autism because autism is so many different issues lumped under a huge umbrella.

I have written my opinion previously that I believe that my autism and Asperger’s Syndrome are different neurological conditions with the same name. This confuses people. Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am her opposite. I have great insight into people, think in words, can’t speak to save my life, and need 1:1 help.

Somehow the brilliant minds looking into autism haven’t noticed that the opposite symptoms might be different conditions, not a spectrum. Her condition may primarily be a neurological difficulty reading people while mine is primarily a mind/motor disconnect, though both of us may have problems of self-regulation and sensory challenges.

Would it make sense to call a heart problem and asthma a spectrum disorder because they both lead to shortness of breath? Not possible because doctors identify heart issues and lung issues medically. Brain issues are the most unknown, so doctors look only to the external behavior. That’s observational, not medical.

Temple Grandin has poor eye contact. Me too. She talked late. Me too—to the point of still not talking. She has some things similar to me, but they are superficial similarities, in my opinion. So, I have decided to help out the professionals. I am happy to abandon the diagnosis of autism and give it to Temple Grandin and those with similar symptoms since it really isn’t the most helpful term to give people an insight into my medical problem. In fact, maybe we can have a contest to come up with a new name for my kind of autism. I have a few ideas:

Severe Motor Dyspraxia

Mind/Motor Communication Linkage Disorder

 Self-Regulatory Motor Control Disorder

You get the idea, no? Maybe a new name would lead to a better understanding and treatment of this neurological condition.

 

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.

 

 

 

 

Tips for Parents: Creating Resources and Educational Opportunities for Students with Autism who Type

Guest post by Tracy Kedar

I have been asked many times by parents how to develop resources to support their children with autism who communicate by typing in order to access a regular education, or how to find supportive agencies or how to create other services where they live. I wish there was an easy answer. Each resource we have out here took legwork and advocacy work by someone, as I’m sure so many of you have already experienced and accomplished, and we have a long way to go! Based on the kinds of questions I often receive, what I can offer are some tips  that hopefully will help parents in developing resources where  they live.

School:

The general education system is still not set up for typers. By and large, unless you encounter an extremely rare and open-minded individual in your school, or others have blazed the trail before you, you will virtually never walk into a school that is familiar with autism or ready to integrate autistic students into general education classes Thus, parents are, as always, thrust into the role of advocate for their child and become de facto outreach educators regarding autism to the schools. Since so many special educators have been taught that students with autism have low cognition, parents of autistic children who have broken through the communication barrier and who are trying to get their children into general education, must come to IEP meetings armed with evidence of their child’s ability. Often times those early meetings are emotionally challenging for parents because panels may be biased or even hostile. However, films of their child typing, reports and assessments from private, preferably school-district-recognized, augmentative communication specialists, psychologists, and others, which show their child’s true capacity, may help.

Beyond this, parents may need to be ready to explain that their child has a legal right to be educated, according to federal law, in the least restrictive environment, despite communicating in a different modality and sometimes displaying odd behavior. Since many people have never even heard that a nonverbal autistic person can communicate by typing, parents can help the IEP team by reassuring them that with a trained aide for behavioral support and as a communication partner, autistic people have successfully been integrated into general education and have done well.

With luck, there will be in attendance at the IEP meeting someone from the school who recognizes that the child is truly communicating and who consequently recommends allowing the child to enter regular classes, but this may not be the case. If it seems necessary, parents may want to invite independent professionals to the IEP as well, such as augmentative communication specialists, educational psychologists, and so on, who can help advocate on behalf of your child’s abilities. Though there may be no one in your area specializing in, or even familiar with testing autistic kids who use typing to communicate, just finding someone open-minded may be good enough.

From our own experience, when Ido was young and I was trying to get him out of autism class, I searched for an educational psychologist who was willing to let him be tested while he answered questions via letter board. I found someone who was willing to try. She carefully observed throughout the testing to make sure he was communicating without being manipulated or prompted, however, she had no prior experience testing a child who communicated in this modality. Other parents looking for someone to do an assessment are eager to hear who can do a fair or adequate job and word may spread among parents that this person is capable of testing a nonverbal typer.

Should a school refuse to allow an autistic student to be integrated in spite of educational psychological evaluations and films demonstrating ability and aptitude at age appropriate level, then in some instances parents may be compelled to seek additional support. It is generally better to not have legal professionals (lawyers, paralegals) in the room in the introductory meetings since at that early stage you are trying to educate school personnel and forge a partnership. However, if you determine that it is necessary, it may be helpful to convey that you are consulting with a legal professional and are aware of your child’s legal rights. A lawyer’s presence may be useful in future meetings but is certainly not the place to start as teamwork and a non-adversarial relationship is always best, if possible.

Once a child is out of the autism class and mainstreamed, the student often finds the academics to be an easier hurdle than the learning to sit still and control his body, emotions and impulses all day. Because these are self-control skills, many students begin mainstreaming gradually, perhaps leaving an autism classroom for only a few periods a day until the self-control improves. For example, in Ido’s middle school there was a self-contained autism class where he sat when not in general education classes, though he did independent study there for the other academic classes he was missing. His integration began gradually. In 6th grade he went only to two general education classes, math and science, and as he learned how to function in a regular class he was able to last longer and longer. By 7th grade he was mainstreamed for three classes and by 8th grade the school recommended that he be on a full general education schedule, which he maintained throughout high school.

Another strategy we found useful was to hire a private tutor to work on grade level material not taught in the autism class before Ido was mainstreamed into general education so that he could get used to do doing regular coursework. He was sitting in the remedial autism class at school all day, but we hired a graduate student in education (not special education) with no prior exposure to autism, whose lesson plans no doubt helped ready Ido for general education. Another advantage is that each of these people, formerly unfamiliar with nonverbal autism and typing to communicate, becomes part of a wider network of support and may in turn provide support to other parents and students.

It is important to note that for most of the typers we know, they didn’t walk into a school that had a program ready to mainstream an autistic student. Since Ido was the first mainstreamed, nonverbal autistic student in every school he attended, this was a completely new experience for teachers and administrators. It is important to know that individual people can make a huge difference. We were helped enormously in middle school by an open-minded administrator, an assistant principal, who was willing to work with us and be supportive to Ido in the school setting. As he told me, “I always just assumed he was smart and just communicated in a different way.” By presuming competence he helped forge a path for success. This was a pleasant surprise. We saw how, by his lead, he influenced others in the school to be receptive to having a student with autism in regular classes.

To help smooth out potential obstacles, prior to the beginning of the school year I met with the administrators to explain who Ido was, how he communicated, his abilities and challenges, and I did the same with all of his teachers after contacting them by email. Ido came to these introductions and introduced himself to the teachers. This is an essential step. Many teachers have never met a person with autism before. They may know nothing about autism. They have huge classes and they already feel overwhelmed and harried, so they need to know that they have someone to bring their questions to, whether it’s the parent, aide, administrator or inclusion teacher. With a good collaborative relationship, supportive administrators can help place the child with teachers they know will be the most open and capable. Many teachers rise to the challenge admirably and really embrace educating the student with autism. They are great gifts to our children. Other teachers accept the presence of our kids with no special passion for reaching out. No problem. They educate them and accept them as they do any other student. Each of these teachers becomes a resource for those students with autism who follow.

There are, however, some teachers who are a terrible fit. They may resent the child’s presence, do not know how to deal with autistic behavior including disruptive noises, outbursts or poor impulse control, be poor teachers in general, or they may exhibit hostile skepticism. In certain instances, finding a different teacher may be warranted. Teachers should be encouraged to observe the child communicating and answering questions to put their mind at ease and to reassure them that the student is doing his own work. From our experience, the more independently the child is able to communicate, the more receptive the response. In our experience, the majority of teachers I met were cooperative and some were outstanding. .However, in spite of all your efforts, you may still encounter people in the schools who are less open-minded, or who are convinced a nonverbal, autistic child does not belong in general education. It is never easy being a pioneer, and unfortunately, both parents and the student have to be ready for these challenges and for the difficult people who make the process tougher, whether teacher or administrator.

Parents may find that certain systems are unfixable. When Ido started high school, after a successful middle school experience, he initially went to our local high school hoping to continue his positive experience. This school proved to be a bad fit. A few administrators created a hostile climate for disabled students. Since it is hard enough having autism, no student deserves to be bullied by administrators and made to feel unwelcome at school, in addition to their everyday challenges. I concluded that the administrators of this school were not reasonable or compassionate people who were willing to work with me, but rather, were obstructionist and mean-spirited. I realized that because of this, the environment could not be changed for the better for Ido. I felt that the hostile climate was sufficiently bad that I had to remove him from the school and find another high school with a more welcoming attitude that would be willing to enroll him midyear.

The second nearby high school I found did not have any experience mainstreaming autistic students into the general education classes. Ido was the first. But they had a different attitude of, “let’s try,” “let’s make it work,” and significantly, they had respect for the student. This enabled him to thrive. What happens without planning, then, is that word of mouth spreads among parents to avoid the first school and to look into the second, and so perhaps more typers enroll in the second school and none into the first. But, it is not as if a program of integration, training, or special services for the students with autism existed or exists in that school. Rather, it is a school with some kind people willing to give a student with autism who types a chance to be educated and it becomes an option for parents looking for resources.

One friend of mine was having terrible experiences with a teacher/administrator in her son’s elementary school. The mom is a strong advocate but it became clear that she was dealing with a closed-system, much like Ido’s first high school, which didn’t want things to work out. Staying in schools like this is actually harmful to our kids. She was struggling to cooperate with an individual who had strong negative biases toward her son’s abilities and who would not, and possibly could not, change. As painful as it may be to see people who reject or underestimate our children, sometimes we simply have to recognize a hostile system and not continue to bang our heads against the wall trying to fix things. It becomes essential in these circumstances to look for greener pastures elsewhere. After changing schools, this little boy is now thriving in his new school where he is fully integrated and welcomed. Once again, this life-changing experience was made possible simply thanks to a few open-minded individuals in the new school who his mom reached out to and who were willing to listen and learn and the negative experience was shaped by one powerful individual in the first school.

The bottom line is that a successful general education school experience is created one teacher, one counselor, and one administrator at a time and parents must reach out to all of them. One of our most successful collaborative relationships was with a teacher who initially was skeptical of Ido’s abilities. To her great credit, she came to our home, observed Ido typing and changed from being someone I feared might impede his progress to an indispensable ally and supporter who has since helped other students with autism who type in the school setting. Outreach is incredibly important. Some people are open to change and some are not. One individual, like this wonderful teacher, can help foster a successful experience for your child, and for those who follow, at school by influencing other staff.

Agencies:

Beyond schools, our children get help from autism agencies, which provide their aides, adaptive skills training, and other services. There are only a few agencies in our area that are eager to support kids with autism who type. They do not specialize in this population, though they are interested in exploring it more. They became enthusiastic after they got a client who was a student with autism who typed and who had a parent who educated and advocated to the agency staff or supervisor. 100% of the agency staff did not get behind the concept. Rather, once again, a few individuals got on board. In many instances, these are individuals who have no particular expertise or training in typers or typing to communicate, nor did they know initially how to support the children and their communication. However, significantly, certain individuals on their staff showed a willingness to listen to parents, to observe how the students learned, and finally, an openness to learning more. I know several parents who even trained agency staff who were working with their kids on communication techniques and strategies, planting a seed of interest and helping their own children as well. Once again, parent led and parent generated advocacy coupled with a few open-minded individuals in an agency, can begin to make a systemic change. Families that follow will enter into an agency that is more receptive, thanks to the efforts of these motivated parents. I will confess that I stayed on far too long with an agency that had a very inconsistent ability to support Ido. I urge you not to make the same mistake!

Other Resources:

As you look for the supports your child needs, it may take some time to find the right match. When we wanted someone to help Ido with fitness, he worked with three trainers over the span of a few years. The first did a very good job but had no interest in specializing in autism and moved on to other things. Still, he was able to help Ido with fitness and it was a positive experience for both. The trainer who followed him was clearly not excited about trying to help a person with autism get fit, so the search continued. We found Ido’s third trainer, Mike Ramirez, through a friend, a mother of a child with autism. She said Mike had worked with her son through an autism agency for years but on a personal level was a Cross-Fit devotee and fitness buff. For Mike, putting these two hats together, autism and fitness, was ideal and he decided that what he wanted to do professionally was to concentrate on the fitness of kids with special needs. Ultimately, he created his own company to do so. What I am saying is that if no Mike exists where you are now, remember, Mike’s program didn’t exist here either when we started! Ido was the first kid he trained, but from word of mouth other parents began to request a service that he was good at and interested in providing. As Mike says, his services are parent driven and the parents, in many instances, are driven by the demands of their kids who type. Once our kids can communicate, they can tell us what they want to learn and then motivation is much higher.

Whether the person is a tutor, a running coach, a fitness trainer, a piano teacher, an art teacher or any of the many talented professionals who may not have originally been familiar with autism, or who may be familiar with autism but never thought to teach these particular skills, resources can be created for your children and community in this way. Once our kids type they can let us know what they want or need.

Networking:

Finally, finding like-minded parents is crucial. I can’t begin to list the good tips I got from other parents and hope that I have been able to do the same for them.

Creating options, advocating and being brave pioneers walking into the unknown is what the reality is for those of us now on the forefront of creating educational opportunities for our kids with autism who type. Our children bravely walk into the classroom ready to take on those opportunities in spite of the challenges they face, but change is still one child, one parent and one educator at a time. One by one, with each person forging a path for those who follow, we can move mountains.

Good luck to all pioneers!

 

A Taste of Sensory Bombardment

Here is a PSA that is trying to give a taste of sensory overload in autism. It is very hard to depict but it does give a hint of what it is like when too much information is coming in at once.

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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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

Dillan’s Voice

My good friend, Dillan, is now a movie star and a spokesman for autism! He is helping to educate the world to understand the truth about profound autism. Here are his amazing films.

Way to go Dillan!

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.