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In Their Own Words – Windows into Phillip’s World

May 26, 2010 21 comments

Phillip is my older brother.

Usually an older sibling looks after younger ones, but all my life I have cared for my brother, who has lived away from home since he was six years old.

Phillip is severely autistic. He is able to dress himself and enjoys looking good. He is unfailingly kind, endearing and loves to be helpful and busy.

But people with autism face real challenges in the areas of communication and social skills—and Phillip is no exception. He doesn’t speak. He understands when you talk to him about subjects with which he is familiar—although his responses can seem disconnected at times.

He communicates through a limited knowledge of sign language and sometimes uses a book of symbols, pointing to images that express his feelings and needs.

Like others who suffer with autism, Phillip has Obsessive Compulsive Disorder (OCD). When, many years ago, he was given the job of marking off the current day on the school’s calendar, it became a necessary daily ritual which he carried out even if he interrupted meetings taking place. Realizing that marking calendars was one of Phillip’s obsessive needs, I gave him several pocket calendars so he can now mark off each day with focused intensity.

An inspired educator once introduced Phillip to needlepoint. In the 21st century, needlepoint, a form of canvas stitchery, is often regarded as a tedious craft with anachronistic overtones. This is not surprising, considering that it goes back to the small, slanted stitches of Egyptian tent-makers thousands of years ago.

Since Phillip is meticulous and revels in repetitive tasks, he immediately immersed himself in this craft. I am an abstract painter and we often collaborate on projects. In fact, our creative collaboration provides a very special connection between our worlds: I design—creating colorful images on a needlepoint canvas—and Phillip stitches in a cornucopia of colors.

Needlepoint gives him a sense of security in and control over his limited universe. He feels empowered in sharing his latest creations and, like all artists, he is very proud of them. I would like to think his efforts would have made famed Bauhaus teachers and color theorists, Johannes Itten and Joseph Albers, proud as well!

Another window into Phillip’s world is a method developed in Australia in 1977 called “facilitated communication.” Phillip can communicate by typing with one finger as a trained facilitator holds his wrists in a comfortable leverage position.

There is some controversy about facilitated communication. Those who support this method believe that it reveals a literacy and a previously undisclosed, higher intellectual functioning in those with autism, and that autistic people exhibit a capacity for symbolic communication.

However, critics claim that the facilitator may influence the response. To avoid this, our family would ask Phillip questions to which the facilitator did not know the answers. Since his responses were accurate, we knew that the facilitator could not be manipulating Phillip’s responses.

Although Phillip spells phonetically, what amazed us was that they were organized sentences written in a rather formal structure (e.g. “I am very fortunate to have Lena as my sister. She is my best friend.”) Perhaps most importantly, this gave us an awareness of the depth of Phillip’s understanding. We already knew, from personal observations, that he was capable of conceptual organization and were relieved that Phillip, in this small way, could finally make his voice heard in the world.

Sadly, his voice is not always heard. Many people feel uncomfortable around individuals who are mentally challenged, and I have become aware that families who struggle with the challenge of disabilities face social isolation. People may perfunctorily inquire about Phillip but then quickly move on to another subject; very few go beyond polite questions to discover that Phillip is a person with strengths and weaknesses that extend beyond the label of autism.

Still, there are friends, who not only acknowledge Phillip but respect him and take note of his interests. They often send him cards, yarn and calendars—gestures of thoughtfulness that deeply move me.

Phillip is unaware of the great influence he has exerted on my own life. Through helping him develop skills and observing his creative process, I have developed patience, endurance and a depth of compassion I never knew I possessed as well as an acceptance of both the limitations and vast possibilities inherent in each of us. All of these qualities play such an important role in my personal and professional relationships.

And while I sometimes wish I could look inside his brain to understand the complexity of his world, I think of Phillip, my little older brother, as my personal gift. But like Phillip, I can’t put what he means to me into words.

This article first appeared on Guidepost.com and is reprinted here with permission.

This “In Their Own Words” essay is written by Lena Rivkin of Los Angeles, Calif.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News- Wednesday, 05.26.10

May 26, 2010 1 comment

Researcher Links Autism, Testosterone (Canada)
Higher testosterone levels in unborn babies can lead to permanent changes in the brain that contribute to the development of autistic traits, new research suggests. Read more.

Making Life of the Handicapped Comfortable (Russia)
Russia plans to introduce integrated nurseries, schools and other establishments where ordinary children will study together with children with mental retardation. The healthy children in these facilities start understanding that the “handicapped” does not mean “bad”. At the same time, the handicapped have an opportunity to communicate in full. Such an integrated community teaches both humanism and tolerance. Read more.

Clegg Backtracks on McKinnon Extradition Claims (TechEye)
Lib Dem leader Nick Clegg has started to do a U Turn on plans to save Gary McKinnon from extradition. For a few brief minutes it looked like the new government was going to stand up to the United States and not extradite Gary McKinnon. Read more.

Star-Studded Award Show To Benefit Autism Speaks Tonight (Look to the Stars)
Journalist Tom Brokaw will be a presenter at tonight’s Amerian Image Awards in New York,  an event that will raise funds for Autism Speaks. Read more.

Mom Unhappy with Autism Therapy (Canada)
A mother of three young children says her family is one of many that has been let down by Newfoundland’s health care system. Read more.

Parent Power Forces Concession on Plans to Move Respite Care (ThisisExeter)
Parents will be given more time to be consulted on plans to move respite care for disabled children out of the city. Health bosses have stressed they are listening to worried city parents over the proposals for youngsters with autism and learning difficulties who receive care at Meadowpark Centre in Shillingford Abbot, near Alphington, being transferred to units more than 20 miles away. Read more.

Psychologist says former Victor autistic student OK to stand trial (Rochester, N.Y.)
A court-appointed psychologist told Victor Town Justice Edward M. Lyng Jr. Monday that Jarred Crawford is competent to face charges of disorderly conduct and resisting arrest. Read more.

SENSE Theatre, Makes Sense to Me (Part 2)

May 26, 2010 1 comment

This guest post is by Autism Speaks Blog contributor Kristen Byrne. Kristen is the proud mom of two sons with autism. She is also one of the founding co-chairs of the Sacramento Walk Now for Autism Speaks event. This is the second half of the ‘SENSE Theatre, Makes Sense to Me’ post. You can read the first part here: http://blog.autismspeaks.org/2010/05/25/sense-theatre/.

Opening night, June 12

I can’t recall if there were any mistakes that night, but the reviews suggested that it was perfection in action. I felt very much in a daze. Was it really happening? A mild panic struck me every five minutes; after all of their hard work, would they walk away from this experience and have fond memories? Or would they only remember the long hours spent on the road to get to and from rehearsal and the extra demands placed on them? Whatever would happen that night was already set in motion has the house lights went out and the bright stage lights glowed. Here we go, for better or worse. Looking back now I realize how ridiculously tense I was about the whole thing. I should confess that I learned a lot from the experience, perhaps even more than the boys did.

The Gala Show Third performance, June 13

With two sold out performances under their belts, the cast would take to the stage for the second time in one day. After the matinee performance we drove to my parents’ house; which wasn’t far from the theatre. We were greeted with a warm welcome and much needed sustenance. I wasn’t sure that doing two shows in one day was asking too much. In addition it would be the first show both my husband and I would be sitting in the audience instead of helping the boys backstage. We had front row seats, stage left. After the first song Ethan spotted me in the audience; he ran off stage into the audience and with his huge partially toothless grin he said, “Mom, I did it!” I felt as if the wind was knocked out of me. I held back tears of joy just then because I didn’t want to be blinded during the rest of the show, but I bawled my eyes out later that night. Ethan did do it, he was on stage, singing and acting and dancing and having fun! He was proud of himself, he felt good about himself and I felt good about the world again, about the future. After a quick hug, he ran back on stage and continued on with the show. We refrained from uttering the phrase “break a leg” which would have horrified Devan & Ethan both taking it for its literal meaning, but I was sure in the true spirit of the theatre, they broke both legs!

Post SENSE Theatre Jungle Book Kids

A short while after the last show we found ourselves turning in the last of the cortisol samples, completing post evaluations and going in for the post-show blood draws for the research portion of SENSE Theatre. Was that going to be it? It wasn’t clear where SENSE Theatre would go from here. Funding for SENSE Theatre wasn’t there; this was run on a hope, a prayer and the generosity of Dr. Corbett, her husband Ed Bazel, and some sponsors. Fortunately through the help of Amy Lewis & Ed Crane at KFBK 1530 News Talk morning show, they interviewed Dr. Corbett who was looking for a new theatre to call home for SENSE. Dr. Corbett received a call the same day as the interview from Brent Null at Magic Circle Theatre in Roseville and the rest is history.

Anything worth doing is usually hard work

The success of SENSE Theatre comes from a number of parts all working together. One part is the kindness of the SENSE buddies and their unwavering regard for Devan & Ethan and all of the SENSE participants. The SENSE buddies are remarkable young women & men and have given so much back to the autism community.

Another part is the amazing brain & heart behind SENSE Theatre, Dr. Corbett. We respect & appreciate Dr. Corbett’s vision for SENSE Theatre, but it is not only her vision, it is her passion about this project and her love of the kids. With every struggle, she was there with a strategy and a path to success. Dr. Corbett’s helped to unlock the dreams we’d once packed away with the boys’ diagnosis four years ago. She’s inspired us to expect great things; something most parents take for granted, but we cherish the opportunity each day.

The tagline for SENSE Theatre is: A stage of hope for children with autism – for us, it is as if the words were lifted off the page, put into action and made a reality. As parents learning through this experience we’ve been able to allow our Hope to grow and see that with patience, kindness, respectful encouragement and understanding, children like Devan & Ethan fit just perfectly into this world. Thank you SENSE Theatre; we’ll always remember this experience with great affection and warm memories.

A grateful mom,

Kristen Byrne

About SENSE Theatre

SENSE Theatre – in collaboration with Magic Circle in Roseville, California – are now off to see the Wizard in their new musical production of Wizard of Oz. SENSE Theatre is a unique theatrical intervention research program designed to improve the social and emotional functioning of children with autism and related neurodevelopment disorders. SENSE Theatre has partnered with Magic Circle Theatre, to put 15 children with autism spectrum disorders on the stage with 30 youth actors from the Master Class productions, who serve as peer models and fellow cast members. Founder, Blythe Corbett, Ph.D. exclaims “We are grateful for the support of Magic Circle who is providing the stage, production costs and hospitality to bring the mission of SENSE Theatre center stage, which we hope to be the first of many collaborative productions.” In her “day job” – Corbett, is an associate professor at the University of California, Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute. Along with the SENSE Lab – her team aims to show how art and science can merge to create an ideal environment to learn how to communicate, socialize and express themselves. For more information please visit SENSE Theatre.

Autism in the News – Tuesday, 05.25.10

Autism achievement is a first for Scotland (Scotland)
BANFF Primary has become the first mainstream school in Scotland to receive accreditation from the National Autistic Society. The school was presented with its accreditation last Friday by Stephen Pyott of the National Autistic Society.The school was presented with its accreditation last Friday by Stephen Pyott of the National Autistic Society. Read more.

Gender might have everything to do with autism, British researcher says (The Gazette)
By the tender age of 18 months, most toddlers point at things, follow the gaze of someone else, or engage in pretend play. Children who fail these three key indicators are the ones likely to be diagnosed with autism or its relative, Aspergers Syndrome, the high-functioning end of autism — and the spectrum is far more common in boys than in girls. Read more.

As Autism Web Sites Boom, Experts Urge Caution (HealthDay News)
When Connie Anderson’s son was diagnosed with autism a decade ago, she scoured the Internet looking for treatments. “I tried all sorts of things I now consider bananas,” said Anderson, now community scientific liaison at Kennedy Krieger Institute’s Interactive Autism Network. “At the time it didn’t feel like nonsense. It was hope. People will try all sorts of things to help their child, sometimes even against their better judgment.” Read more.

Inspiration Awards honor three schools for student “inclusion” (Las Vegas, Nev.)
More than $8,000 was handed out to three Washoe County schools Monday evening, as part of the Inspiration Awards at the Sands Regency Hotel and Casino. Former First Lady Sandy Miller hosted the event, with a room full of teachers, parents and a few students looking on. Sunbelt Communications President and Autism Advocate Ralph Toddre was one of the speakers commending the schools on their achievements. Read more.

Communication at his fingertips: Group donates iPod Touch to help autistic child (Roanoke, Va.)
Nine-year-old Romeo Gaona of Roanoke faces a barrier when it comes to communicating. “He talks a little,” said Wayne Fridley, his grandfather. Those who don’t know Romeo well have difficulty understanding what he is saying. Read more.

Hanover organization Employment Horizons helps the disabled find meaningful work (Hanover, N.J.)
The question from the employee on the other end of the phone line was unique. “Barbara, I’m in the hospital. Do I still have my job?” recalled Barbara S. Brown, the administrator for a pediatric and adult ophthamology practice based in Cedar Knolls. Read more.

Kentucky’s Kids with Autism Deserve Better

May 25, 2010 3 comments

This is a guest post by Janet Pope, Autism Speaks volunteer and Anne Gregory, Autism Speaks Kentucky Chapter Advocacy Chair.

This past April, for the first time in my life I learned what it truly means to live in a democracy. Since the start of 2010, our group of Autism Speaks volunteers had been in our state capitol for months working diligently with members of various House and Senate committees on a matter near and dear to our hearts – autism insurance reform, because we believed Kentucky’s children with autism deserved better.

After months spent in the capitol’s hallowed halls talking to legislators, testifying at hearings, and countering the insurance industry’s iron grip on insurance policy in the Commonwealth of Kentucky, we emerged on March 16 with a unanimous vote on the House floor in favor of our bill, House Bill 159. That victory was sweetened when, 16 days later, the Senate also voted unanimously to pass HB 159!

Until this experience, I held an image of all special interest lobbyists and politicians in an unfavorable light, as many of us do. I am a veteran reader of John Grisham novels about big tobacco, the pharmaceutical industry, and, of course, the insurance company lobbyists who, in these novels, try to manipulate politicians. These were the horrible images that immediately came to my mind. However, after many months of working closely with a special interest lobbyist, I became very aware that they are not all bad men, out to dupe the public or our politicians into passing unfavorable laws. In our case, this image could not have been more wrong. Our lobbyist, Bart Baldwin, spent countless hours with us, guiding us through the delicate, chess-like maneuvers of professional politics. He laughed off our rookie mistakes and, in the same way we teach our children, he modeled appropriate behavior and language for us to use in our conversations about autism insurance reform with members of the state legislature. Bart is a true defender of the rights of our children with autism, as are so many other lobbyists just like him, who work for the passage of good public policy and the betterment of all society.

We were also fortunate to have had two excellent champions for our cause in the House – Representative Jeff Greer and Representative Scott Brinkman. While neither of these men has had to experience the financial drain that a full-time applied behavior analysis (ABA) therapy program puts on a family’s finances, Representative Brinkman is the father of a grown son with autism and did engage in other costly treatments.  Both Representatives had compassion for our issue and moved forward with fervor on behalf of our “insurance is the answer” solution.

Thank you, Bart Baldwin, Representative Greer and Representative Brinkman!  And take that, John Grisham!

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda please visit www.autismvotes.org.

Left to right – Janet Pope, Autism Speaks volunteer; Kentucky Governor Beshear; Anne Gregory, Autism Speaks Kentucky CAC

SENSE Theatre, Makes Sense to Me

May 25, 2010 6 comments

This guest post is by Autism Speaks Blog contributor Kristen Byrne. Kristen is the proud mom of two sons with autism. She is also one of the founding co-chairs of the Sacramento Walk Now for Autism Speaks event.

Just over a year ago I’d heard that Dr. Blythe Corbett, a spunky, brilliant, and caring doctor at the UC Davis M.I.N.D. Institute was developing a program to put children with autism on stage in a musical to perform in front of a live audience. She not only put children with autism on stage in a musical in front of 6 packed theatre houses, she gave our children a unique and precious experience I’m quite certain they’ll remember fondly forever.

I have twin boys who have autism. When they were first diagnosed at age 3 ½, they were non-verbal, engaged in self stimulating and self injurious behaviors, they had significant fine motor skill delays as well as social & cognitive delays. If anyone had said, your kids would be performing in a musical on stage in front of a live audience; I would have thought they were being cruel.

With much apprehension; we completed all of the paperwork for our sons to participate in SENSE Theatre’s first production, Jungle Book Kids in March 2009. We took home the Cortisol sampling kits for the research piece of the project Dr. Corbett was simultaneously conducting, and the boys both endured blood draws all before the first day of rehearsals and I kept wondering – will this be worth it?

At the start of the project we could not comprehend that anyone could have the patience and understanding to handle the constant struggle Ethan & Devan would impart. We doubted that we’d make it very far in the project and while we were cautiously optimistic, we never prepared ourselves for the outcome of success.

Day One

We entered the theatre and immediately the boys dart off into opposite directions. One bee lined to the stage and the other to the back of the house zooming up the stairs two by two. It was a good thing my husband & I decided to go together. They were up and around, down the halls, into the green room, climbing on sets, hanging on the curtains in the wings and opening emergency door exits.

Needless to say, we were exhausted. When we got home that night we got the boys to collect their spit in these tiny vials provided by the SENSE lab, and recorded the events of the day in the log for future researchers to analyze. Feeling somewhat defeated, I briefly contemplated calling Dr. Corbett that night to tell her we quit. However, this thought quickly vanished; we are not quitters and surely the next rehearsal would be better. While the boys did not appear to have had a good time, I caught them both singing one of the Jungle Book songs in bed, “Look for the bare necessities, the simple bare necessities, forget about your worries and your strife!” And that was it for me – I would not feel tired, I would not complain, I would not worry – I would dutifully drive them 45 miles to rehearsals for two hours and happily drive another 45 miles home two or three times per week to see them perform live on stage in front of six packed theatre houses.

Day Four

We entered the theatre as before and unlike the times before both boys sought out their SENSE buddies with no prompting required. Progress already! The SENSE buddies were neuro-typical cast members who volunteered to help a child with autism in the cast. Ethan would ask for Eric, Chris & Turner by name and each time he saw them at rehearsals, a huge grin lined his face. Devan would ask for Camilla, Autumn, & Turner and they were all there each day with open minds, open hearts and open arms.

The SENSE buddies performed roles while being video recorded. The videos were uploaded to a website for us to stream at home so the boys could rehearse their parts throughout the week. These videos were ingenious! We’d just click play and the boys would come running into the den and start singing and acting without us having to convince them to rehearse.

Tech Week, Three Months Later

iPhones, V-tech games, M&Ms, gummy bears, Star Wars figures, token charts, squishy stress balls, books, play dough, and puzzles covered the green room. The parents & the SENSE buddies retreated to the green room with the kids after each song to break and regroup. The costumes took some getting used to, working out the kinks of the bumble-bee head dress, the bulky feeling of the stripped fabric draped over head, the wolf head that wouldn’t stay on top of Devan’s head, and the Kaa snake puppet resting on his back. It seemed that the show was coming together just in time for opening night.

Stay tuned to see how the Byrne family and SENSE Theatre’s Jungle Book production made out!

Congratulations, Holly!

May 24, 2010 16 comments

Congratulations to Autism Speaks’ Board Member Holly Robinson Peete, who was the runner-up in this season’s “Celebrity Apprentice” and Bret Michaels, who took home the top prize. We are so proud of Holly, who did so much this season to raise awareness about autism and Autism Speaks.

Bret Michaels, who has diabetes and also has a daughter with diabetes, won an additional $250,000 for his charity, the American Diabetes Association. Snapple, the company featured as part of the final task, also donated $250,000 to Holly Robinson Peete’s charity, HollyRod, which helps raise funds for families dealing with autism.

Please join us in congratulating Holly on her success and thanking her for her efforts!

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