Autistic Poet

 

BOB FAW, correspondent: Sometimes for an autistic child like Elizabeth, cheered on here by her father—

RAY BREEN (to daughter on bicycle): Turn, turn, turn. You can do it, you can do it, you can do it. Good, good.

FAW: Sometimes there are small victories—

RAY BREEN: Excellent, excellent.

FAW: —and the demons of autism loosen their grip. Too often, though, for Elizabeth there are other moments of seemingly impenetrable darkness and frustration. Unable to speak, Elizabeth communicates now by finding letters on a letterboard or typing into a keyboard. Even that, says her mother Ginnie, does not spare Elizabeth moments of agony.

post03GINNIE BREEN: I remember so distinctly one of the first things she typed out: A-G-O-N-Y, agony. This was a little six-year-old child, and she knew what agony was, and then she wrote, “I need to talk”—that that was her agony.

FAW: She wasn’t always like this. In her first 15 months, Elizabeth was healthy, active, alert, even verbal. Then she changed drastically.

GINNIE BREEN: Besides the complete loss of language within a week, she did start to have repetitive behavior and have frustrations and tantrums and really kind of left us.

FAW: Researchers suspect genetic and environmental factors cause autism. It is characterized by unconventional facial expressions, limited motor and social skills, and difficulty communicating—a life largely dependent. For Elizabeth’s parents that diagnosis was devastating enough, but they were also told there is no reliable treatment, no guaranteed cure, and ten years later not that much has changed, says Dr. Anthony Rostain, an expert on autism at Children’s Hospital of Philadelphia.

DR. ANTHONY ROSTAIN (Children’s Hospital of Philadelphia): It really affects almost every aspect of how the child thinks, acts, feels, and develops both cognitively and emotionally. So, as a result, it’s hard to come up with one-size-fits-all kind of treatment.

FAW: Elizabeth’s parents, Ginnie and Ray, both enjoyed lucrative Wall Street careers but gave them up to focus on their three children and the battle against autism. Early on, behavorial therapy exercises like this, they were told, might help Elizabeth to organize the chaos in her mind, help her to learn how to learn.

Teacher to Elizabeth: Show me jumping. Turn around. Good job. Can you show me sitting? Nice job.

FAW: Since she was three years old, her school district has paid a full-time professional aide to help Elizabeth academically.This is what a respected speech therapist believed might help loosen Elizabeth’s tongue. It turned out to be more fun than effective.There have also been years of special diets and vitamin supplements and homeopathic drops costing hundreds of dollars every month, a $20,000 hyperbaric chamber, which pumps extra oxygen into her brain for an hour every day, even unproven therapies like these prism lenses which distort Elizabeth’s vision in hopes of reordering the way her brain processes information.

post04FAW: Are you convinced that this has benefits?

GINNIE BREEN: I believe that this has helped other children.

FAW: And several times Elizabeth’s mother has taken her cross-country, seeking healing in prayer services.

GINNIE BREEN: We’ve used educational interventions, medical interventions. Why not spiritual interventions?

FAW: Parents of autistic children face a terrible dilemma. They are forced literally to experiment on their own children because the medical community has not tested and proven those treatments the way it has with treatments for physical conditions like heart disease or cancer.

DR. ROSTAIN: We are in very, very, very early stages of understanding how medications might improve functioning.

FAW: You don’t fault a parent for trying everything conceivable?

DR. ROSTAIN: I don’t, because if I had a child who wasn’t responding to treatments that were prescribed by the doctor, I might very well take that child to someone else and someone else and someone else.

FAW: What has happened to Elizabeth has happened with countless other autistic children—so many interventions with success only hit or miss. Ethicist Arthur Caplan:

PROFESSOR ARTHUR CAPLAN (Center for Bioethics, University of Pennsylvania): I could take you online and find tons of quacks, rip-off artists, selling quote unquote “treatments” to parents of kids with autism. It is a huge problem.

FAW: It is also an ethical minefield: Does society have the responsibility and can it afford to help autistic children who lack the resources lavished on Elizabeth? If so, should that task fall, as it mostly now does, on local public schools?

PROFESSOR CAPLAN: You can’t do it that way. Obviously, different school districts have different amounts of money. We need a national policy to divvy up resources to autistic kids, not the school board budget. That makes no sense at all.

post02FAW: One intervention which has worked well for Elizabeth began five years ago in Austin, Texas with language therapist Soma Mukhopadhyay, who taught Elizabeth to use the letterboard. Then, a stunning turn in Elizabeth’s life: At the urging of her personal education aide, Terri Bird, Elizabeth began writing powerful, often deeply personal poetry, turning some of her frustration into inspiration, and for the first time, those around Elizabeth discovered her inner voice. For example: “…It’s not easy, you see, it’s very hard being me. / There is so much going on in my mind / All of the time.”

FAW (to Elizabeth): Why do you write poems?

Elizabeth types out the word F-E-E-L-I-N-G-S

FAW: Your feelings—that’s why you write poems. Elizabeth is, says her mother, “a very spiritual child,” and some of her poems are religious.

GINNIE BREEN (reads from poem “God Loves You”): It does not matter who you are / It does not matter if you stray far / God is always there for you…

FAW: Elizabeth has written 90 poems thus far. Many reveal her yearning to be heard.

GINNIE BREEN (reads from poem “Me”): If only they could walk in my shoes / They would share my news / I am in here / And trying to speak / Every day in some kind of way.

FAW: Sentiments echoed in this anthem written for children with autism.

Vocal music: “Oh, don’t you know I’m trying to find a way to show you who I am…”

FAW: Because she can communicate, Elizabeth, accompanied by Terri, also attends a mainstream public school where she excels especially in math.

TEACHER: Find the greatest common factor of 18 and 24?

Elizabeth types the number 6.

TEACHER: Good girl.

FAW: Her teachers marvel at her performance and persistence.

post01KERRI BENSON (Math Teacher): She’s taught me about patience, and I just, I can’t even begin to explain that I’ve probably learned more for her than anybody in life so far.

FAW: Elizabeth is warmly received by other students. Besides writing, Elizabeth can read with remarkable speed, and Terri tests her comprehension.

TERRI BIRD (Education Aide): Doing this job with Elizabeth is the most rewarding thing I’ve ever done in my life.

FAW: Elizabeth’s success and her failures—this two-steps-forward, one step back—have been physically exhausting and emotionally draining for her and her family. It has also severely tested her mother’s faith.

GINNIE BREEN: It’s a natural thing to cry out where are you, God? I mean, I’m calling here in the darkness, and I can’t take too much more sometimes.

FAW: And though she on occasion has wavered, her beliefs have emerged stronger.

(to Ginnie Breen): Has it reinforced you faith?

GINNIE BREEN: Absolutely. There are times I know that we are being blessed on the right path here, and I’ll pray about it, and we’ll move forward.

FAW: Whether Elizabeth will eventually speak is, at best, a long shot. She may, her mother concedes, always need assistance, which is why in this household success is measured one day, one small victory, at a time.

GINNIE BREEN: I want to be able to say I have done everything to make my little girl talk. I mean, how can I hear her say, “I’m in agony because I can’t speak” and not try something? The data may say only one percent, but if that one percent is Elizabeth, that’s all I need, and she wants us to keep trying.

FAW: For Religion and Ethics NewsWeekly, this is Bob Faw in Northern New Jersey.

  • Suzanne Galloway

    What a powerful story! I have an 11 year old grandson who is afflicted with autism. He amazes me every time I see him. He is so bright and loving. And I know that he hurts, too, because he can’t be like all the other kids. His parents are very, very patient and kind and always looking for other ways to help him break down the barriers. Those who are not challenged with a family member disabled by autism just don’t realize the efforts and patience that parents, teachers, family members must display.

  • J Russo

    First I’d like to say the love and support for Elizabeth is wonderful and inspiring.

    Also, one suggestion….sorry if this has been covered ad nausium. In the program I didn’t hear anything about heavy metals. Could the nervous system be inflamed due to heavy metals from the environment and/or from the old way drug-makers used to preserve immunizations, etc.? If so I believe they can be removed from our systems though diet and high level immune system activation. I’ve had personal experience with that.

  • Cheryl Archer

    Thank you, thank you for your story about Elizabeth. There are people out there who understand! Our son, Jamie, now 16, has learned touse a letterboard to spell and reflect on what he has learned and what he experiencing. We are so fortunate to live just 30 miles from Austin, and Jamie can meet with Soma at the HALO (Helping Autism through Learning and Outreach) Clinic every week. Of all of the therapies we have experienced with Jamie, Soma’s Rapid Prompting Method is the only one that has given him a voice. It takes hard work and incredible persistence, but it is worth every bit of the effort.
    NOTE: We, too, would like to have definitive answers about the physiological and chemical causes of autism. We are still waiting for science to give us those answers, but we can experience a real relationship with our son right now!

  • Ginnie Breen

    Hello Friends, This is Elizabeth’s Mom. I just wanted to say that we have done special diets (both gluten-free, casein-free and Specific Carbohydrate Diet) for most of Elizabeth’s life. We have also done every form of chelation available to rid her body of heavy metals. It’s hard to get all of this into such a short segment. If you would like more on our journey, please visit http://www.elizabethmary.net. Our love goes out to all those fighting the autism battle. It is treatable and beatable. In Elizabeth’s words: I am in here! So are your children.
    Love and peace to all, Ginnie

  • Tori Gee

    What a wonderful interview of Elizabeth and her effort to be heard. My nephew is autistic and we found at very young age that he had a LAZY TONGUE. Exercises making sounds like ie., la la la la and click click click (tongue dropping from the roof of the mouth) ba ba ba and choo choo choo were all helpful in getting his mouth and tongue to form words. He was diagonised at age 11 months and his family started him when he was 18 months in intensive therapy …. by that I mean as long as his attention span would last but these sessions were done through out the day at home. We found that he “preformed” for treats like gummy bears cut into pieces smaller than a spring pea and he was rewarded if he really tried or succeeded in the task at hand. Today, he is 14 and a straight A student in the school system connected with UT at Knoxville, TN where his mother was studying for her Ph.D. The daily training continued until he was 8 years old, then 3 times a week. For Craig, there were no vacation days from learning how to speak. His mother knew that speech was the key to him being able to live in society with as much or a normal life as possible. Now he communicates we no problem. His biggest challenge is in the social fields. He likes to take his shoes and socks off in class and is not sure how to attract a girl friend. His older brother of 3 years, has lots of girl friends and Craig is aware of their liking his brother but not sure why he doesn’t have lots of girl friends. Still, he is a very active student and loves sports. For those parents who are facing the challenge of raising an autistic child, WORK FOR SPEECH the doors will open if they can communicate with other. Starting early and working every day is the key. MAKE LEARNING FUN!!! Give them time to play but make them return to their studies. They will try and avoid training time but TIME is your enemy and you can’t waste one minute when it comes to them learning to speak.

  • Monika Jilkova

    I have been working with children who have autism and other disabilities for several years now. Their joys and struggles inspired me to change my career and pursue a Master’s degree in special education with emphasis on low incidence disabilities. The most important lesson I have learned from children who have disabilities is holding high expectations and treating them with respect and dignity. One simple way to show a respect to people who have disabilities is to use “person-first” language, even if it means using longer sentences. In this particular segment, instead of saying “autistic child” we should acknowledge the child for being a child before labeling the child with his/her disability. So, I suggest, we start saying a “child with autism” instead of “autistic child.” After all, he/she is foremost a child, not the disability.

  • Trista

    I have 2 boys with Autism. (16 & 12) It has been such a struggle. Thankfully, they both have speech. This story is so inspiring. It was not long ago that people with CP were institutionalized, when they couldn’t speak. Then we discovered that they were “in there”. I believe we should always expect “more” and not “less” from differently abeled people. The things they can do are amazing. I have one boy, who can pick up an instrument and pick out a melody they just heard, and the other is a gifted artist.

  • Daniel

    I am somwhat retired now but looking back I can say I was Blessed. After studing Psycology for years I found myself focusing my carrer on Autism. I did so when Autism was not somthing one would talk about. I can say this. I was blessed to have been able to break through what I considered a wall and Communicate. I found out that these people are no diffent then you and I. I also was told that they do not want our pity but just want to be heard. I say this again. They want to be heard. Boy was I blessed.
    Daniel
    Fort Wayne

  • Jordan

    Is there a place where I can read Elizabeth’s poems? I would like to read the full versions of Me and God Loves You. They are very inspirational.

  • Jordan

    This story is very inspirational! I would love to read Elizabeth’s full length poems. They sound very powerful! Is there a spot where I could read them?

  • Emma Cladis

    Hi Elizabeth, I loved this, you believe in God like I do. He is healing us both. Be good to want to talk. Be good to want to sing praise to God. Not going to do this alone, we can do this together. Hope to hear more from you, hope you write to say hi. God thinks you are great, so do I. Love, Emma

  • Liberty G

    As the Director of an organization called the Toxics Information Project (TIP), I am aware of anecdotal and research evidence of connections between autism spectrum symptoms and commonly used household chemicals. I don’t claim these are “the cause” of autism – but are clearly a significant factor in the case of certain children – worth investigating. Here in RI, one mother was able to get her child off Ritalin and another saw hers go from 3 or 5 right on a test to 100% on an exam after their classrooms were cleared of chemicals including toxic cleaning products, pesticides, fragrance chemicals and permanent markers. For more info on this factor, see:
    http://www.toxicsinfo.org/healthconnections/pannalearningandchemicals.htm
    http://www.toxicsinfo.org/kids/Autism%20Endocrine%20Disrupters.htm
    Learning and Developmental Disabilities Initiative Working Group (LDDI)www.iceh.org/LDDI.html and
    http://www.healthandenvironment.org/working_groups/learning
    http://www.ewg.org/node/18897

  • taupe

    Has anyone tried teaching children like Elizabeth American Sign Language? Clearly, she wants to communicate, and vocalizing’s not the only way. If ASL works for her, she could talk fast, without pointing at letters, and talk to other kids. Great story; but I can’t find the promised link to the Breen family’s site.

  • Akim Belabed

    ANother possibility, that the use of Vaccines on younger children at earlier stages may have affected or did effect them with this disorder (autism) I loved the story of this beautiful and smart poet and I have shared it with the mother of my son who happened to be autistic, he is talkative, independant, a 4th grader and enjoying life and no matter what the lies ahead of him, he keeps on moving forward, and I would love to hear him say it at least once, how he is feeling for real etc.., but I wished that he was like his sisters and all these kids are and will be the same without this disorder, but I guess I am very lucky to be his father and He is MY HERO.

  • Ginnie Breen

    Hello Friends, This is Elizabeth’s Mom. Thank you for your comments and kind words. We have, in fact, had Elizabeth on special diets (gluten-free, casein-free and Specific Carbohydrate) for most of her life. We have also done every form of chelation available to rid her body of heavy metals. If you would like more on our journey, please visit http://www.elizabethmary.net. We send our love out to all those fighting the autism battle. It is treatable and beatable. In Elizabeth’s words: I am in here! And so are your children.
    Peace and blessings to all, Ginnie

  • Cynthia Mullis

    Thank you, PBS for helping bring to light that our children with severe autism can learn to communicate and are capable of high academic learning. The more the media shows this, the more likely school districts are to stop denying these highly intelligent children the education they deserve. Soma is an incredible gift to our country and I pray that soon her methods will be widespread throughout our public school system. J Russo, there are many causes of autism and though it is true that some people seem to have benefitted from detoxification, special diets, etc there are also hundreds, possibly thousands who have tried a multitude of treatments with no improvement. The bottom line is no matter what the cause, these children are able to learn if given the right tools. My son has also gone to Austin to work with Soma and was able to prove what we knew all along, he is intelligent and able to communicate. Thank you to Elizabeth’s parents for sharing your story. Your daughter is beautiful and your obvious dedication to her is inspiring.

  • lBarb Dodsworth

    For some time I have been watching your program and each week look forward to it. We have a 3 year old grandson that was diagnosed with autism about a year ago and he is now attending daycare. Support and love for families is so important; only last week he came to me and said kiss and kissed me on the cheek for the first time. He is a wonderful gift in all of our lives!

  • Mike West

    October 16, 2009: Autistic Poet was a compelling story. Could it be that Autism is linked to the radical removal of cannabinoids from the American Diet?

    According to recent research, some cellular receptors require unique lipids for the proper transfer of key proteins to the target. The proteins and oils in nutritional hemp (seeds) may be worthy of a clinical study.

    Why? Two points: The cannabinoids, including “globular “proteins and oils in Hemp are unique in the Kingdom. Because we have refined our food supply to the point that modern nutrition is lacking many of the “unique” proteins and fats that were consumed in past generations. This degradation of nutritional support for the mitochondria is progressively becoming a huge factor in multiple generations of Epigenetics.

    Certainly, some outcomes are dependent on Nuclear DNA, but cannot the Mitochondrial DNA benefit from a more complete and balanced approach? I want to share my research with the hope that you consider the unique qualities of Hemp Proteins and Oils in addition to the cannabinoids.

    Do “Doctors” know about Nutritional Hemp? Do they know that Nutritional Hemp can save lives? Perhaps the young woman in your story would benefit from sub-lingual cannabinoids and a combination of Nutritional Hemp?

    Sincerely,

    Mike

  • Amy

    I am curious if anyone has tried ABA therapy? I have seen that work on many diffcult children.

  • Patrice Athanasidy

    My son is on the autistic spectrum. I did not see listening therapy listed among the many therapies Elizabeth has tried. It helped my son tremendously. He barely spoke phrases at 4 and now at 8 he is speaking a great deal. His communication skills still need work, but they are greatly improved. Apparently he has auditory processing issues. The listening therapy and then a program called Earobics have both helped tremendously. The Listening Therapy was monitored by his OT and Earobics by his speech therapist.

  • Ginnie Breen

    Hello friends, This is Elizabeth’s Mom again to try to answer some of the questions posted. First, thank you all for sharing your ideas and encouraging words. We all could use them in the fight against autism. My first response is to say that I always say that I have “two children with autism” as opposed to “two autistic children.” It matters to me, as well, to put the child first. This PBS show did not discuss the fact that Elizabeth’s older brother also has autism because the producers wanted to focus on her story. Charles has had a very different journey as he is verbal and mainstreamed in 7th grade with a wonderful aide. Autism affects each child differently. Some of the many interventions that we have done have been more effective for Charles than Elizabeth and visa versa. We did ABA with both children for many years coordinated by Douglass College, Rutgers. It is my sincere belief that ABA helps younger children but that there comes a point (usually around 5 or 6 years) when the child needs to move on to another method, namely RPM, if they are non-verbal. There needs to be a way for them to express their thoughts and feelings. We did do PECs and sign language with Elizabeth and she never responded to them in the way she responded to RPM and spelling out her thoughts on a letterboard and then later a computer. We have done both AIT and Tomatis with the children and not seen any effect. As I said on the segment about vision therapy, I believe that these interventions help some children. Elizabeth’s website is listed on the righthand side of the website under Related Links: ElizabethMary. You can go to it directly by typing http://www.elizabethmary.net. Please sign up for her Poem of the Month in the Contact Us section so that we can stay in touch. I also hope to have a blog on the site so that we can share ideas.
    Love to all, Ginnie

  • Mary

    Elizabeth, Thank you for sharing your poems with us. You’ve touched so many people through your writing. I have a son with autism who isn’t speaking yet. Your story was very uplifting and made my day. Mary

  • Maria Dewalt

    I have just finished reading your book. It was very inspirational. I to have a 3 year old granddaughter that was diagnosed with autism in Sept. of 2010. They have an Early Education program in my son’s school district. Brianna has been attending that since Nov. of 2010. we will here random words from her and a lot of babbling but can’t ask for what she wants. They want to potty train her but they can’t seem to get the right approach. My fear is that she’ll get lost in her autistic world because both parents have to work to keep afloat. All the extras needed to provide for her would require more income. She is only getting about 2 and a half hours of school time 5 days a week as long as there are no days off or scheduled vacations. I hope that I can live long enough to here her call me Grandma that’s my hope and my prayer.

  • Carol

    I, too have an autistic son, but he’s 48yrs old. Nobody ever talks about the older “child” Is there anybody out there with older children STILL looking for help? Would love to hear from you.

  • Paige

    Hi Ginnie. My daughter was just diagnosed last year with Asperger’s Syndrome. She is 13 and in the 7th grade. For English, their assignment is to read a biography/autobiography and then present a 3 minute speech to the class. My daughter chose Elizabeth’s book. The speech is what you would say to introduce your person at a Hall of Fame banquet. My daughter has truly enjoyed Elizabeth’s story. I believe it inspires her to overcome her obstacles. You are an amazing mother, and I commend you for trying all possibilities to help Elizabeth. She is a lucky girl to have you!

  • Judith Contino

    Hello. I am currently reading your book, I AM IN HERE, and appreciate every paragraph. My grandson, Benjamin, 3 and a half years, was diagnosed with Autism Disorder. He has had speech thereapy, OT PT since 18 months and also attended an ABA preschool on Staten Island,NY. He is beginning the Eden II School on Staten Island soon. He now makes many sounds, alphabet letters, and often I hear him mimic somebody. He has a special bond with his Grand father, Pop Michael, and runs to him more than to anyone else. More importantly, he makes eye contact now, happily plays with his toys, especially Super Why, whose vidoes he enjoys all the time. He runs back and forth to his 4 week old baby sister; and I know it is his way of saying hi and including her in his play. Both his parents are teachers, although Mom is a stay at home Mom now. I am a teacher too and my experience to share with other grandparents is to educate yourself as much as humanly possible so that you will be most able to empathize with your little one and his parents. And you will be able to appreciate their enormous challenge and also appreciate seeing them giving so much love and patience to their little child, whom they love so much just as you love them.