Autism Life Skills

July 20, 2010

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

Sensory Processing

Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. If these are not working properly and are not in synch, they acquire a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” had extreme sensory processing challenges as a child and still has some, but to a lesser degree. Donna talks about feeling a sensation in her stomach area, but not knowing if it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

This first appeared in the Advocate Magazine in 2008, published by the National  Autism Society of America

The Spirit is Willing But the Flesh is Weak

July 18, 2010

This morning Jeremy said he wanted to go to church. I checked a couple of time to make sure that that is what he really wanted to do as he had been up a good part of the night in a hyper happy state. This was following a period of three weeks where he was happy, but calm and relaxed.

We got to the church, but he didn’t want to get out of the car. I convinced him to get out and we head up to the service (Unitarian Universalist) which is held outdoors in a beautiful setting under pine trees. Jeremy really likes this place.  But today, Jeremy could not or would not sit still;  looking at a book did not help. Finally he started foraging in his backpack for a ‘toy’ – any kind of string, ribbon or piece of rope. And he sat there and stimmed. Then he got up and stated to prance away as if to leave. I convinced him to go back to sit down. Then, an elderly woman sat down next to him and pulled out a cookie and started to eat it. Of course I didn’t know this till I heard a commotion next to me and realized that Jeremy had grabbed  the cookie out of her hands (but really – why was she eating a cookie during church service? I wasn’t looking out for that). Then he left running towards the parking lot. I had no alternative but to follow him.

Many times Jeremy has problems controlling his body or organizing himself and he needs his “rules” or help from us. His spirit is willing but his flesh is weak is how I describe it. This time I think perhaps he just wanted to go for the ride in the car to church and hear Dave Matthews in the car.  It doesn’t matter that he has a high school diploma or that he can communicate by typing or that his mom is supposed to be knowledgeable when it comes to autism stuff – sometimes he is just not himself and he seems unable to communicate about it. We used to blame  behavior changes  on the full moon because it would happen once a month for a couple of days, but it appears to be a different cycle now. Maybe he is sick? I just had the flu, maybe he is coming down with it. Maybe he is nervous  because we have been interviewing new support staff, and even though he helps interview and loves the people we have found, it is still a change.   At any rate, these moments are frustrating. As a professional, my brain is taking notes and comparing data, trying to find the ABC’s of the behavior, looking at possible causes for the behavior. Meanwhile, the parent in me is tired and worried and hope he will go back to his usual pattern of sleeping through the night and wake up his usual sunny self tomorrow.

I’m hoping tonight is going to look like this :

Jeremy and Handsome sleeping.

It Takes An Army

June 13, 2010

Graduating high school was not one of the goals I had for Jeremy. Now he’s college bound.

In 2007, my son Jeremy walked the graduation ceremony at the local high school along with the other seniors from his severely handicapped class. On June 18, he will be walking the graduation ceremony again, in the same gold and scarlet robe he wore three years ago. This time however, he will have earned and will receive a full academic diploma. He has a GPA of 3.5. For me, this is unbelievable. Graduating high school was not one of the goals I had for Jeremy. The goals I had were mostly those based on functional living skills.

When Jeremy was diagnosed, I was told to find a good institution for him. I don’t think the medical professional who diagnosed him meant “college,” but that is where he is headed. People ask me how Jeremy made it to this point, and the truth is, there is no short answer. Like most parents, I started out hoping to find that “one thing” that was going to make a huge difference in Jeremy’s life, that would improve his chances of overcoming the challenges he faced. But I soon realized that there is no magic bullet.

Jeremy, now 21, has received numerous treatments, therapies, and educational strategies (some of which he still continues) with acronyms such as ABA, TEACCH, OT, SI, AIT, VT, RPM, and some biomedical interventions including methyl B12, HBOT and more. All of them have helped somewhat, some more than others. But the most important ingredient to Jeremy’s success has been the same that it is for all of us: having the right people as teachers and mentors – people who believe in you, who motivate you to do your best. People who see beyond the label and who are willing to see the person. People who are willing to try different ways of reaching and connecting with the student, when the traditional ones do not appear to be working.

Any tasks requiring motor planning and sensory processing have always been extremely difficult for Jeremy. My office is full of binders that include Jeremy’s task analysis and data sheets for all kinds of skill acquisition such as fastening pants and brushing teeth. When he was younger, many educators and other professionals took Jeremy’s inability to respond as a lack of intelligence, rather than as challenges due to visual processing issues and difficulties in initiating and controlling his motor planning. Teaching methods based on visual strategies did not work with Jeremy. He is not a visual learner, and his visual processing was not working correctly, but no one recognized that at the time.

When he started high school, Jeremy attended a class for the severely handicapped at the local school. When Jeremy’s teacher, Rachel Page, came to our house for a home visit and saw how I was teaching Jeremy to point to letters to spell words. Jeremy had been taught by Soma Mukhopadhyay twice a month, over a period of 14 months, using the Rapid Prompting Method she had developed, and I continued to work with Jeremy using this method of teaching. Rachel tried what she had observed at school and was successful. By then, I had had enough battles with the powers that be to even consider asking them to use an unknown method to try and teach Jeremy. (The year before, Jeremy had come home from the middle school with rug burns on his chest and back inflicted unknowingly by an inexperienced occupational therapist, and had ended up filing for due process when the school district refused to provide training. At the IEP meeting I had requested, the OT said she didn’t need anymore training. No comment.) I had decided to do what I did at home and to just focus on Jeremy having a safe environment at school and coming home unmarked.

Rachel then invited me to the classroom to show her and Jeremy’s paraprofessionals how I was teaching Jeremy at home. At an IEP meeting, it was decided by the IEP team to allow Jeremy to attend one general education class on a trial basis. This was a major victory for Jeremy at this school district at that time.
Jeremy’s most important growth period came over the next three years, thanks to Allan Gustafson. Allan was Jeremy’s second teacher in the SH classroom and is the best teacher that Jeremy has ever had. He helped Jeremy—and all his students—grow not only intellectually, but emotionally as well. To give you an idea of the type of teacher Allan is, read Allan’s assessment of Jeremy for an Individualized Transition Plan (ITP) meeting in 2006. It says it all about the type of person he is:

“Jeremy is a complicated young man who people cannot judge on appearance. A good metaphor would be to describe Jeremy like as an artichoke. Each leaf on the artichoke has to be taken separately, each having its own characteristics. As you go through each layer of the leaves, it becomes more apparent that there might be something inside, something worth getting to. It takes time to get there, but there is a heart inside, worth the time and effort to expose, as some people say is the prize for the patience of delving through the layers of leaves. Jeremy is this man.”

In June 2007, Jeremy was technically a senior and it was time for him to attend the off-site transition program, thus his participation in the high school graduation ceremony. By that time, Jeremy had made it clear that he enjoyed learning, and wanted to continue learning even if he was no longer on a high school campus. Some of his IEP goals by then included preparing him for taking the GED sometime down the line while attending community college. It was clear that he was capable of doing that, although I would never have though that possible a few years earlier.

However, Jeremy did not handle the transfer out of high school into the transition program well at all. Meanwhile, my father was dying from lung cancer and I was traveling a lot to helping him and my mom, who lived two hours away. I wasn’t able to work towards changing the situation. Bruce Cochrane, an administrator new to the school district (now head of Pupil Services), became concerned about the complete change in Jeremy, from a model special education student to a non-compliant, unhappy and disruptive person. Bruce started asking questions, studying Jeremy’s school records, interviewing teachers, observing Jeremy. Jeremy, still considered a transition student, was moved back to the high school where his behavior improved. He continued on a couple of workability projects, but started taking general education classes again.

Then, at an IEP meeting, Bruce brought up the question – was Jeremy interested in working towards obtaining his diploma? According to Jeremy’s official transcripts, Jeremy needed more credits in certain subject areas, and he needed to pass the California High School Exit Exam, which is routinely given to tenth grade students. Students are allowed six chances to pass this test. The IEP team recommended that the test be given to Jeremy the first time as a baseline, if he was interested in trying to get his diploma. Jeremy surprised us all by passing on his first attempt all the parts of the test he was given. However, for some reason, the school did not administer the essay part of the test, and Jeremy had to retake the complete English section of the test a few months later. Again he passed. Since then, he has steadily been taking two classes a semester towards his diploma.

This June, I am doubly blessed. Not only is Jeremy graduating from Torrey Pines High School, his sister, Rebecca, is graduating from the other high school in our area, Canyon Crest Academy. I am proud of both of them, and thankful for the educators that have crossed their paths, not to mention the army of paraprofessionals, therapists, support staff and other professionals who have joined us on our journey. Clearly, there is not one magic bullet. Rather, it takes an army, and we will never forget them.

This article was first published in Spectrum Magazine, June/July 2010 issue.

The Horse Boy: Looking for Answers to Autism With Horses in Mongolia

May 9, 2010

On Tuesday, May 11, The Horse Boy airs nationally 10pm EDT on the PBS series Independent Lens.

The Horse Boy is a film about a dad (Rupert Isaacson) and a mom (Kristin Neff ) who are trying to do what hundreds of thousands of families in America do every day – search for a way to reach their child with autism. Only, we don’t look so good doing it and we usually stay pretty close to home.

Rupert is a past professional horse trainer, writer and journalist as well as a human rights advocate for tribal peoples. Rupert’s wife and Rowan’s mother, Kristin, is a tenured professor of psychology, and has been a practicing Buddhist for more than 10 years. She is well known for her researches into the Buddhist concept of self-compassion and its correlation with positive mental health. When Rupert witnessed the amazing way in which their son Rowan, who had autism, connected with their horses in Texas, they started to wonder if there was a place on earth that combined healing and horses. They discovered that the nomadic horse life is still lived by most of the people Mongolia, and it is also the one country where shamanism–healing at its most raw and direct–is the state religion. So off they went.

All right, so maybe we all can’t grab our kids with autism and take off for Monglolia and ride horses and experience ritual healings with the reindeer people. I know my area’s Regional Center isn’t going to pay for it and neither is the school district. However, the point of the movie is best highlighted by Michel Orion Scott (director and cinematographer) of “The Horse Boy” when he is asked what he thinks ‘healed’ or helped Rowan. His answer:

“I don’t know … but what I do know is that, if there was one thing it could be contributed to, without a doubt, it is that the parents took that extra step to follow their child into the unknown. To allow themselves to trust the love they have for their son and to do whatever it took to find a way into his life.”

It’s a good reminder, as parents to follow your instincts, observe and listen to your child. Cheesy as it may sound, follow your heart. It’s sound advice. Though Rowan, Rupert and Kristin are in Mongolia, they encounter the same trails and tribulations that most parents with autism do. We hear Rupert exclaim,

“Sometimes it is like he (Rowan) is leaping forward and sometimes it is like he is totally regressing.”

Who can’t relate to that? What parent doesn’t feel that anguish every time there is a ‘setback’? Your child or teen goes back to some disruptive or unhappy behavior, and you are filled with the double anguish of not being able to figure out how to make him feel better, and the fear that it may not be just a temporary regression.
With all the ups and downs we parents of children with autism have to face, it’s nice to see inspirational movies such as this one from time to time. The scenery is beautiful and it’s a pleasure to watch a movie about autism that doesn’t take place in a classroom. It’s also good to know that Rupert and Kristin have used the profits from the book The Horse Boy to found the nonprofit Horse Boy Foundation, which offers the chance to ride and benefit from close contact with horses, other animals, and nature. They welcome families to spend time there.

My favorite line in the movie is when Rupert says:

“We’re gonna climb up 12,000 feet to perform 4 hour healing rituals with shamans, isn’t that what all families do?”

Rupert was being sarcastic, but the answer is, “Yes.” Yes, it is what all of us parents do. We get up and we climb mountains every day, in order to help our children. Sometimes the shamans are helpful, and sometimes they are not, and often it is hard to tell the difference. Watch this film, and you’ll be inspired to continue climbing those mountains. You know it’s worth every step.

“THE STATE OF THINGS” North Carolina Public Radio station WUNC

April 22, 2010

Click here for a link to the radio show

The program is “The State of Things” on North Carolina Public Radio station WUNC.  Longtime NPR correspondent Frank Stasio hosts the program, which  this time  focused on autism.

The way Franc Stasio introduced me is a description I think describes what all autism moms and dads tend to be – strategists:

“… Jeremy is almost 22 now and  he is thriving thanks to an army of experts whose chief strategist and leader of the troops is his mother.” Frank Stasio, host of radio show ‘The State of Things” on WUNC, North Carolina Public Radio, April 2010.

I was on a panel that will include  Autism Society of North Carolina  spokesperson David Laxton; and a representative of the North Carolina TEACCH program, and Daniel Coulter.  TEACCH stands for “Treatment and Education of Autistic and related Communication Handicapped Children” and is associated with the North Carolina School of Medicine.

Temple Grandin and Jeremy Sicile-Kira to Keynote on-line Autism Conference

April 7, 2010

No-Cost Virtual  conference and new book highlight Autism Awareness month.

In honor of Autism Awareness month, momsfightingautism.com is offering a free virtual conference with 17 different presenters over two days on Saturday, April 10th and Sunday 11th from 8:00 to 5:00 PST.

Temple Grandin, PH.D., subject of the recent HBO movie: Temple Grandin starring Claire Danes, will be the keynote speaker on Saturday April 10 at 8:00 am PST. Dr. Grandin is a designer of livestock handling facilities, Associate Professor of Animal Science at Colorado State University and a bestselling author (Thinking in Pictures). Dr. Gandin will be discussing Teaching Through Specific Examples, and will also discuss the Importance of Sensory Processing Disorder and it’s place in the DSM V which is currently being updated.

Temple Grandin and Chantal Sicile-kira

Acknowledging that autism is a spectrum with different abilities and challenges, the keynote on Sunday April 11 at 8:00 am PST will be given by Jeremy Sicile-Kira who was highlighted in the MTV award-winning True Life episode, “I Have Autism.” Jeremy will present on Learning With Autism: A Personal Viewpoint using power point with voice output. “Jeremy has experienced home schooling, special education and inclusion, and many types of therapies in California, France and the UK. It’s not often we get to hear from someone as impacted as Jeremy about what it is like to be on the receiving end of therapies and treatments,” explained Chantal Sicile-Kira, autism advocate and award-winning author who will be moderating both keynote presentations. Her latest book, 41 Things to Know About Autism, has just been published by Turner Publishing. Continue reading »

How the Rapid Prompting Method Gave Me A Voice

March 29, 2010

My son, Jeremy Sicile-Kira, wrote the article below about the Rapid Prompting Method (RPM) which appeared in the January 2010 issue of The Autism File. If you watch the HBO movie on April 2, A Mother’s Courage: Talking Back to Autism, you will see  Soma Mukhopadhyay teaching a child using RPM.

Litewriter

litewriter

How the Rapid Prompting Method Gave Me A Voice

Having Autism is hard enough, especially when it comes to communication for people who are non-verbal like myself. The Rapid Prompting Method (RPM) is not only a learning method but a door to open-ended communication for different people with autism. It is my good fortune to have been taught by Soma  Mukhopadhyay, who pioneered  RPM.

Soma, originally from India,  has a son with autism named Tito, who is the mighty inspiration  behind RPM.  Soma needed to create a method that would help him not only  to learn, but to communicate as well. Soma was frustrated with the schools in India, where they lived, because they wouldn’t accept Tito as a student. Just like they told my parents in France, where I was born, they told Soma that Tito was mentally retarded. I was “diagnosed” with mental retardation too, yet here we are both using RPM to discuss our similar past experience.

RPM is a method that  can be used with different people as it is adapted to the needs of each individual. Some are auditory learners, some are visual learners and the RPM teacher uses the learning channel that is best for that person.  RPM uses a “teach and ask” paradigm for eliciting responses through intensive verbal, visual and or tactile prompts.  RPM starts with the idea that all students are capable of learning. Despite behaviors, the academic focus of every RPM lesson is designed to activate the reasoning part of the brain so the students becomes distracted and engaged in the learning. The prompting competes with student’s self-stimulatory behavior. Continue reading »

Successful Inclusion

March 22, 2010
Nancy Brady

Nancy Brady

Providing Literacy Opportunities to Students with Autism

For those who are not aware, once a month I moderate webinars for momsfightingautism.com. It’s a great resource because I interview all kinds of experts working in the field of autism and you can  send in your own questions to be answered. You can listen in for free live the night of; after that you can download it for a fee  by that organization.

Tuesday March 23 at 6:00-8:00 PST, my guest is Nancy Brady, MA-EdSP, ATS. Nancy is an Inclusion Specialist and Assistive Technology Specialist who strives to include those with the most severe disabilities in general education classrooms.    She has been working for the past 7 years on including those who have autism and are nonverbal in the general education classroom environment, advocating and emphasizing literacy opportunities through the use of Assistive Technology.

Nancy is actually my son’s inclusion specialist, so I can personally attest to her talents. Life has been much easier for me in terms of my son’s education and inclusion in the general education population. We had a willing school and wonderful staff, but having Nancy’s expertise in there has made my son’s experience so much more effective.

The topic of the webinar is Successful Inclusion:  Providing Literacy Opportunities to Students with Autism and some of the points Nancy will be covering include: Inclusion as a philosophy; Accommodations vs. Modifications; “Bottom up” support strategies; Teachers’ attitudes toward inclusion; Literacy Ladders vs. Literacy webs; How to create a successful team; Assistive Technology in the general education classroom; Independent Yes/No and A-B-C-D multiple choice – high tech vs. low tech; Motor planning in Autism; Presuming Competence as the Least Dangerous Assumption.

More things to know about Nancy:  Nancy has a Bachelor’s Degree in Communication Studies and Sociology from UC Santa Barbara, and a Masters Degree in Special Education from Chapman University.  She received her certificate in Assistive Technology through the Orange County Department of Education and California State University, Dominguez Hills in 2009. Nancy completed the Mentorship Project for Communication Partner Support through WAPADH in Santa Fe Springs in 2008 and the FC Institute Summer Conference at Syracuse University in New York in 2005 and 2006.  Nancy is a professional member of RESNA and a parent member of TACA.   Nancy’s agency, S.T.A.R. – Supported Typing and Autism Resources, is located in Laguna Hills, CA and teaches those who are unable to communicate verbally an alternative communication strategy using Assistive Technology.

Also, this week, my latest book 41 Things to Know About Autism is being published by Turner, just in time for April – Autism Awareness Month. I wrote this book for the parents who wanted a book to hand their relatives and neighbors so they could ‘get’ what they are living though. It’s a small book and a quick read, great for spreading community awareness.

Holly Robinson and Autism Facts the media is not covering.

March 17, 2010

Holly Robinson Peete and son

Here’s a post by Holly Robinson Peete  on Huffington Post, Shifting Focus: 8 Facts About Autism the Media is Not Covering that makes some good points.

I like to remind people that when your child with autism hits the teen years, it’s not that their autism is getting worse, it’s that they are now teenagers. Puberty plus autism is a volatile mix!

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