This is a few minutes of footage from a KVCR TV show I was on in April 2006 to promote Autism Awareness. It was an hour show where we answered questions from callers. The producer and moderator is Lillian Vasquez of KVCR, and the other guest is Patty Gross Founder of Northstar (where Jeremy’s assistance dog, Handsome, came from). Lillian has produced a few shows on autism creating great community awareness.
International Autism Awareness Day is on Friday, April 2nd and what better way to celebrate than by watching an HBO documentary about a family from Iceland that travels to the United Kingdom, Denmark, and many different states in the US to find ways to help their child with autism?
Producer Margret Dagmar Ericsdottir decided to film her search to find help for her son, Keli, who is ten years old and severely effected by autism. Directed by Fridrik Thor Fridksson (the Oscar nominee Children of Nature), and narrated by Oscar winner Kate Winslet, the film takes us to different places where Margret interviews parents, advocates, scientists and professionals. Temple Grandin, Ph.D., whose life story recently aired on HBO, provides insight, as does Dr. Geraldine Dawson, chief science officer of Autism Speaks. Dr. Simon Baron-Cohen director of the Autism Research Centre at the University of Cambridge, and Dr. David G. Amaral, research director, Mind Institute also provide food for thought.
This documentary does not sugarcoat autism, or celebrate it, or cure it. The movie’s strength lies in that it shows the heart-wrenching reality of what families have to go through to get assessments, diagnosis and advice; it shows the reality of the pain parents feel when their bubbly, verbal child regresses and becomes autistic. We visit with families who have more than one child with autism. A Mother’s Courage does not try to cover all the autism treatments and therapies (i.e., biomedical interventions); it would take a series to do that, not just one film. Instead, the last half part of the film focuses on what Margret has found that works with her child, the Rapid Prompting Method (RPM).
This HBO film is a good resource for promoting community awareness that families can share with their relatives and neighbors. They will gain a better understanding of what families effected by autism go through every day (the motivation behind my writing the recently published book, 41 Things to Know About Autism).
A Mother’s Courage shows us how caring and concerned professionals are; they don’t have all the answers though they wished they did. Joseph E. Morrow, Ph.D., BCBA and Brenda J. Terzich-Garland, M.A., BCBA founders of Applied Behavior Consultants (ABC ) in Sacramento say that 40 % of the children who attend ABC school at an early age (where they receive intensive therapy based on the principles of applied behavior analysis, ABA) are able to be integrated in their neighborhood school after two years. We are left thinking, but what about the other kids — the kids that make some progress with ABA but never learn to communicate past the “I want” step with the Picture Exchange Communication System (PECS) or never get past three-word sentences?
In the film, we find out that luckily, Portia Iverson and Jonathan Shestack, co-founders of Cure Autism Now, wondered the same thing, and brought Soma Mukhopadhyay to the United States after hearing about how Soma had developed a method to teach her son, Tito.
Margret visits Soma, now the Educational Director of HALO (Helping Autism Through Learning and Outreach) based in Austin, and meets Linda Lange, founder of HALO and other parents and their children. For parents of children with autism who are not familiar with the Rapid Prompting Method, this is the part of the movie that will enlighten them to another possible method for teaching academics and communication. RPM is not a miracle cure, it’s a way to try and reach children using the learning modality that works best for them. The footage of Soma working with Keli gives a good overview of RPM.
My son Jeremy was taught by Soma for a year and a half on a bi-monthly basis when she lived in California. Recently Jeremy wrote an article on How The Rapid Prompting Method Gave Me A Voice. After watching A Mother’s Courage he spelled,
“I am really glad to see people talking about people like me. The fact is, there are many of us. I think there needs to be more understanding. I get frustrated by people not realizing I am smart. But I know I am one of the lucky ones because my mom found a way for me to learn and communicate and the school continued.”
I wish there would have been a better choice made for the final scenes of the movie. Whereas Soma is down to earth and logical, the music took on heavenly tones and rose to a crescendo with angels singing in the background. The symbolic last scene of mother and son walking though a fog with the sun and heavenly music breaking through was heavy-handed.
Much better to have ended on Soma’s words — realistic and inspirational in a practical manner:
“What we have to do now is to educate him so he becomes aware of what he is capable of and lives according to his capability.”
Isn’t that what all parents strive for and want for their children?
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.
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 »
A couple of years a go I was asked to write an article on The Affects of Autism in Families and in Partner Relationships, for the May/June 2008 issue of Family Therapy Magazine. Lately I have been getting emails in regards to autism and marital stress, and I thought I would reprint part of the article here, since the information is still valid. If you are interested in this topic, you may wish to read the chapter on the financial and emotional stresses of autism on the family that appears in my new book 41 Things to Know About Autism (just published by Turner Publishing).
Family life is all about relationships and communication: relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about communication challenges, misunderstanding of social cues, and lack of emotional understanding, thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges can also impact the adult’s work situation. Grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren and future generations. Continue reading »
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.
Tips for general education teachers
Back in August, I wrote this post for my Autism and Adolescence column in the Examiner.com, and I’m re-posting it here because I’ve received a few emails with questions recently from general education teachers. Maybe there are others who could use these little nuggets of information.
Often junior high and high school teachers have teenagers with Asperger’s Syndrome included in their classrooms, and are not given much in the way of useful information. This column will provide a few practical tips that may be helpful to educators with no practical knowledge about students on the spectrum. For more information, check out this webpage.
Asperger’s or High Functioning Autism (HFA) is often described as an ‘invisible disability’ because students on the spectrum do not look different frorm most students. Most teachers expect them to act like everyone else, but often the student gets in trouble for behaving in a way that seems rude, disruptive or non-compliant. A diagnosis of Asperger’s or HFA is based on challenges in the areas of communication, and social relationships, as well as what appears to be an obsession or passion for a particular area of interest.
Here are some tips that may help the school year go a little easier for you and your student on the spectrum:
- It’s a good idea to have a hard copy of the homework assignment to hand to your students on the spectrum, because most of them are mono-channel. This means they cannot look at the assignment on the board, write it down and still be able to focus on what you are saying. By the time they have finished copying down the assignment, they have missed your intro to that day’s lesson. This mono-channel aspect makes it hard for a student to multi-task, and by only requiring him/her to do one thing at a time, it will be much easier for the student to stay focused. Continue reading »
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!
In my last Psychology Today post I discussed sensory processing disorder, and received comments and questions from readers. I had mentioned an article in The Boston Globe that mentioned that a group of professionals and parents was lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders. Reader Dr. Joshua Feder wrote in to give us the link where people can provide input: “Remember, the public commenting on the upcoming DSM-V is still in process and the addition of SPDs is in flux, so if you think it is important you can make your voice heard. Go to http://www.spdfoundation.net/dsmv.html to learn more!“
Sensory processing challenges is a hot topic at autism conferences and this provides me the opportunity of asking adults on the autism spectrum what we could do to make the sensory aspects of life easier for them, as well as children who may be unable to discuss what they are sensing. I have written up the answers in my book, 41 Things To Know About Autism, and I am mentioning some of them here. Continue reading »
When my son Jeremy was approaching his 21st birthday, one of his support staff, Troy, said that it was time for an all guy trip with his buddies to Las Vegas. Plans were made, and the trip took place at the end of February. The guys–only trip was a success. I don’t know the details – “What happens in Vegas stays in Vegas” as Jeremy spelled out to his math teacher at school who inquired what he did on his trip. I have Jeremy’s permission to post the following picture and what he told me about the trip which is short but sweet: “I had way too much fun.” Obviously, all the guys who went did – there’s talk of making this a bi-annual trip.
Earlier this week, there was an article in The Boston Globe about sensory processing disorder. It stated that a group of researchers, families, and occupational therapists is aggressively lobbying to get sensory processing disorder included in the next Diagnostic and Statistical Manual of Mental Disorders, which is currently being drafted.
Many readers may wonder, what is a sensory processing disorder?
Sensory Processing Disorder (SPD) is a neurological disorder that causes difficulties with processing information from the five senses: vision, auditory, touch, olfaction, and taste, as well as from the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SPD, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SPD; the difference is that information is processed by the brain in an unusual way that causes distress, discomfort, and confusion.