Ohio Department of Developmental Disability funds large-scale training in relationship-based early intervention for children with Autism Spectrum Disorders
Columbus, Ohio–March 8, 2011—The Ohio Department of Developmental Disabilities (DODD) has selected the Play and Language for Autistic Youngsters (P.L.A.Y.) Project to train and certify 50 interventionists in early intervention and early childhood programs throughout the state of Ohio. The PLAY Project is an innovative, relationship-based early intervention program, which empowers parents to playfully engage their children in ways that promote social connection and language development.
As the fastest growing disability in the U.S., autism continues to gain public attention, yet there is a national shortage of personnel trained in intensive approaches as recommended by the National Academy of Sciences (NAS). In Ohio, many children with ASD do not have access to intensive services until they reach three years of age, when the autism scholarship is available. After this large-scale training, set to take place in Columbus, OH in May of this year, early interventionists will be able to provide evidence-based services to very young children with ASD and their families throughout the state. Professional PLAY Consultants will be trained and certified to teach parents techniques that are effective, fun, and useful in day-to-day interactions with their child.
“The model fits well with County Boards of Developmental Disabilities, which support interventions that are positive, evidence-based, and family-focused,” said Molly Kurtz, who is coordinating the training at the state level. “Five counties have already successfully implemented the PLAY Project, and we are looking forward to expanding these services across the state.”
The PLAY Project, based in Ann Arbor, MI, uses a ‘train the trainer’ approach, which promotes rapid dissemination of the program. The professional training program was developed in 2004 by Richard Solomon, MD to address the growing need for intensive early autism intervention, and has trained hundreds of professionals in the last 6 years. Licensed PLAY agencies operate in 25 states, including Ohio, as well as in countries around the world.
A growing body of research suggests that the model is successful and cost-effective. An initial pilot study of The PLAY Project showed promising results, and a $1.85 million grant from the National Institute of Mental Health (NIMH) has allowed The PLAY Project to conduct a randomized, controlled trial of the model. Results of the study are expected in 2012.
“The goal of The P.L.A.Y. Project is to help parents become their child’s best play partner by providing effective, low cost, playful interventions right at home,” said Richard Solomon, MD, founder and Medical Director of The PLAY Project. “The state of Ohio is dedicated to this goal, and we are excited to be working with them to help as many children and families as possible.”
About The P.L.A.Y. Project®
Created by Richard Solomon, MD and based on the DIR® (Developmental, Individual-differences, Relationship-based) theory of Stanley Greenspan, MD, The P.L.A.Y. Project emphasizes the importance of helping parents become their child’s best P.L.A.Y. partner through evidence-based practice. Practical, affordable, and family-friendly, the P.L.A.Y. Project Home Consulting model has become widely practiced with positive clinical and research results. The program is operating in five countries and 25 states in the U.S., including many Easter Seals locations. More than 300 trained Home Consultants serve over a thousand children on the autistic spectrum every year. For more information about The P.L.A.Y. Project, visit www.playproject.org.
Traci Swink started the Bridge Center in January 2008 because she saw the potential to help families like her own in the community.
After nearly three years and in a new location at 105 W. Fifth St., the play and language development center for children with autism has gained widespread recognition and has helped 20 families make significant progress in understanding and adapting to the disorder.
"I had never helped anybody in that capacity. Really, my primary experience was with my own child," said Swink, a former Marshfield Clinic neurologist whose son has high-functioning autism.
The Bridge Center, a nonprofit, is built around the Play and Language for Autistic Youngsters Project developed by Dr. Richard Solomon in 2001. It focuses on intensive social and emotional development education through focused playtime between parent and child.
Those with autism are often uncomfortable in social situations. By working with autistic children to broaden their development base, they will become successful in a broader range of relationships and experiences, Swink said.
"For kids who don't have their developmental foundation strengthened ... they progress on a very narrow platform," Swink said.
Robie Linn, of Marshfield, has 8- and 10-year-old sons with autism spectrum disorders.
Like Swink, she was searching for a development program for her son. The two found each other in 2007, and the Linns became the first family to join the Bridge Center.
Linn said she chose the PLAY project model because it is more cost-effective than other therapies. There aren't expensive therapist fees because parents do much of the work, she said.
Swink has been tracking Linn's 8-year-old son from the beginning to gauge his progress through a case study. He's become more familiar with environmental and social cues in that time, Linn said.
"He's made significant gains from when we started," Linn said. "It's dramatic. He now is at school -- they can't believe it."
Sushma Bunuru and her 6-year-old daughter Meghna recently moved from New Jersey to Marshfield to receive training and therapy at the Bridge Center.
Both attend a group play session at the center each Tuesday afternoon to work with other parents and autistic children.
Bunuru and home consultant Lindsay Gregoire have worked on regulating Meghna's emotions and behavior through guided play activities at the Bridge Center recently. Sushma said she hopes the sessions will have a more significant effect than other therapies the family has tried.
"I hope she can understand and relate better to the world," Bunuru said.
Fox Detroit
Eight-year-old Parker Reed looks like any other kid, but critical therapy has changed his life. At two, he was diagnosed with autism.
"He was about 18 months, and he had some words and then they kind of disappeared," said Amy Reed, Parker's mother.
As Parker struggled to communicate at all, his parents struggled to figure out how to help him.
"(As) soon as the autism diagnosis came, all of the insurance stopped. So, the physical therapy, occupational therapy, speech therapy, all of it ceased once the diagnosis came. So, that was a little shocking," said Rick Reed, Parker' father.
That's when they learned about play therapy and Easter Seals.
"We go into the family's home, and we train the parents to be the primary teacher for their child; to do the work everyday with their child," said P.L.A.Y. Project Coordinator Shana Wirth.
Called the P.L.A.Y. Project, the acronym stands for Play and Language for Autistic Youngsters, it was created by Dr. Richard Solomon in Ann Arbor. Part of Easter Seals' mission is to train parents how to do it, then they must spend three hours a day making connections with their kids.
"If I say hi to you and you say hi back... that would be an opening of a connection and closing of a connection. If I make eye contact, that opens a connection. If you make eye contact back, that closes it. So, you have to force elongated connection of communication with your son or daughter on the floor," Rick Reed.
The Reeds have spent endless hours with Parker, never giving up, and he's like a different kid.
"He asks for play dates. He wants to play with other kids. He'll be going into a regular third grade classroom," Amy Reed said.
Walk With Me, a one mile walk along the Detroit riverfront, is happening on Saturday, August 28. Money raised helps support Easter Seals early intervention autism therapy. Click here for more information about the event.
Joy Falahee thought she knew how to play with her 2-year-old, Alexa.
There she was holding a plastic microphone, pretending to talk to Alexa. There she was offering a tiny zebra for Alexa to put in a brown plastic boat.
But when she looked back later at video of her and Alexa playing, Joy realized it was all wrong. Alexa barely looked at her. Alexa wanted nothing to do with her.
Alexa has autism. Joy, 32, received her daughter's diagnosis four months ago. Research says that by age 5, children's brains are mostly formed. Alexa's doctor told Joy and her husband, Tom, that they have only a few years to draw Alexa out.
She and Tom, a manager at CVS, have spent $70,000 to get her help. Occupational therapy. Physical therapy. Even horse therapy.
But recently they found another way to help Alexa, one that will require hours on a blanket with Alexa and a tub of toys.
Joy suspected autism early on. Alexa was 18 months old when she stopped saying ma-ma and da-da. She started screaming whenever they left the house. She refused to be touched.
Joy, a former opera singer and voice coach, sought out specialists and seminars. She realized that the symptoms of autism described Alexa. Children with autism sometimes don't talk or interact. They don't like to be touched or held. They have trouble understanding other people's feelings. They need lots of one-on-one therapy — up to 25 hours a week.
Joy and Tom, 34, enrolled Alexa in free federally funded child development services and took her to every therapy they could find. They moved from Tampa Palms to St. Petersburg to be closer to doctors and therapists at All Children's Hospital.
The traditional therapies were designed to help Alexa learn to talk, build upper-body strength, allow her parents to brush her teeth. They were built on positive reinforcement: If Alexa did what she was told, she got a reward.
But Joy knew one of Alexa's biggest challenges would be her ability to socialize. Her daughter never looked at people. She always played alone.
Was there a way to make her daughter at least give her a hug?
One day in March, Suzanne Tredo, an early interventionist with a background in autism, arrived at Joy's home in St. Petersburg.
Suzanne went up to Alexa, who was fitting animal-shaped pieces into slots in a wooden board. She picked up a piece and offered it to Alexa.
Alexa got up and walked away.
Later Suzanne tried again. Alexa ignored her. But then, for less than a second, Alexa's little blue eyes caught Suzanne's.
"You need to build a relationship with your daughter," she said. "To do that, you must get her to look you in the eye."
Joy thought about her interactions with Alexa, how fleeting they were. Unless she needed something, Alexa didn't care if Joy was there or not. Not one bit.
In the spring, Suzanne traveled to Ann Arbor, Mich., for a unique training in autism therapy. Traditional therapies for autism are based on getting children to change their behavior with positive reinforcement.
The P.L.A.Y. Project, or Play and Language for Autistic Youngsters, is one of several methods being extensively studied. It is child-directed and encourages parents to bring out their autistic children through play.
Thousands of children around the country have received P.L.A.Y. Project therapy in the past decade, according to Dr. Rick Solomon, the pediatrician and behavioral specialist who founded the project. He is overseeing a study funded by the National Institute of Mental Health.
Joy and Tom were determined to make sure Alexa started kindergarten with everyone else. For $4,500, they hired Suzanne to meet with them 10 times during the course of a year. At each appointment, she'd take video of them playing with their child and analyze it. Many of the videos would go to specialists at the P.L.A.Y. Project, who would review Suzanne's findings and provide more suggestions.
Suzanne told the Falahees they could essentially eliminate most of Alexa's other therapies.
Joy and Tom liked the idea of helping Alexa on their own. The $4,500 seemed cheaper than the $70,000 they'd spent in just half a year.
A week after Suzanne got back from the training, she sat down next to Alexa on the floor on a blanket.
Alexa was putting a doll to bed on a tiny chaise longue. She picked it up, hugged it, put it back to bed. Picked it up, hugged it, put it back to bed. Over and over. Such repeat behaviors are characteristic of autistic children.
Suzanne picked up Alexa's doll and mimicked Alexa. She hugged it and pretended to put it to sleep on the ground. Then she petted it and said, "Night, night." Over and over. Just like Alexa.
Alexa looked at Suzanne. She picked her doll up and handed it to Suzanne to hug.
Suzanne smiled. She couldn't believe she'd reached Alexa so easily.
Joy came to count on Suzanne. Suzanne had gotten her daughter to make eye contact with her. Sometimes Alexa even sat down and watched TV with them now.
But they still had a long way to go.
One day recently, Tom and Joy sat down to review video from a previous meeting. Suzanne explained that she'd noticed Alexa liked to sort her dolls. They seemed to give her peace.
But before Suzanne could continue, Alexa threw back her head and howled. She became inconsolable.
Suzanne pulled out a videocamera and turned it on. Time for the first lesson.
"Wanna play?" Joy asked her daughter in a sing-song voice.
Alexa stomped her feet, opened her mouth, screamed.
"I know you're angry," Joy said. "What do you want to do?"
Joy tried not to be frustrated. This was how Alexa was. One little thing like bringing her milk when she wanted juice would create bedlam for hours.
She tried singing.
"Row, row, row your boat . . ."
"Scream with her," said Suzanne. "Then bring your tone down to help her."
Joy couldn't bring herself to scream. She hugged Alexa tight, rocking her back and forth.
She picked up a plastic doll, Boots. Alexa shook her head. She picked up a Dora doll. Alexa howled.
Tom offered Alexa two stuffed dogs.
"This one or this one?" he asked.
Alexa, her face wet with tears, chose a German shepherd over dachshund.
Tom hauled her over his shoulder, hung her by her feet upside down, while she clutched the stuffed dog. Suddenly she was smiling and giggling.
Suzanne told Joy and Tom that understanding what calmed Alexa would help them understand her. She liked sorting dolls. She liked rough play.
"You need to touch what she's touching and use more sounds in play," Suzanne said. "You want her to reach out to you."
Suddenly Alexa was running into their living room, climbing on the couch, tossing pillows.
"Don't you tear up my couch," Joy said smiling at her.
"Pick her up," said Suzanne.
Joy threw Alexa over her shoulder and lowered her. Up and down. Joy flopped on the couch, pretending to be tired. Alexa climbed up on her. Joy tickled her. She played peekaboo with a pillow.
"Keep engaging her," Suzanne encouraged. "You're doing great. Don't take away the eye contact."
Joy raised and lowered the pillow, smiling and making eye contact. Then she stuck out her tongue. "Where's my tongue?"
Just like that, it was over. Alexa pulled away. She wailed and ran off.
Suzanne explained that Joy had changed the play, upping it from just simple "sensory motor play" to a different type of play, one that was above Alexa's understanding. She rewound her videocamera, showed Joy the moment she lost Alexa.
"Lightbulbs are going off right now," Joy said.
Moments later, though, Alexa ran up to her Mom. She put her arms around her hips.
"Oh," Joy said softly. "A hug."
She threw her arms around her little girl.
My son Matthew was two when his brother Andy was born, and in the months that followed, Peter and I were in awe our baby's emerging personality and quick and firm grasp of every milestone. Even when playing intently with toy trucks and blocks, Andy stopped regularly to to flash a smile and raise an eyebrow when I called his name. His gaze connected with mine and his eyes shined with joy. We had never been able to engage in this way with Matthew. Was Andy advanced (of course, he will tell you now that he is 22 years old) or was Matthew missing some critical developmental milestones?
"Floortime is just one component of a larger comprehensive framework called the "Developmental, Individual-Difference, Relationship-Based (DIR) Model," developed by psychiatrist Stanley Greenspan," says Joanne C. Finn, a licensed educational psychologist and a DIR/ Floortime practitioner in Pleasant Hill. "Its goal is to help children like Matthew child master the fundamentals of relating, communicating and thinking." Joanne is also a P.L.A.Y. Project home consultant, training families to practice early intervention at home.
"A 1-year old baby can involve mom or dad in a sophisticated conversation without words," says Finn. "This nonverbal conversation involves smiles, looks, pointing, gestures and pure joy over sharing a moment of interest together. These beautiful social communication moments can be missing or less robust in children with autism. The DIR/Floortime approach helps parents re-engage their child in this conversation."
I had the pleasure of seeing floortime practitioners in action at the ICDL Conference a few years ago and at Floortime Atlanta,as a guest of nationally renowned pediatrician and autism expert Ricki Robinson. The treatment model makes a lot of sense to me.
The DIR/Floortime approach is a framework for understanding each child and creating a comprehensive program tailored to his needs. It is not a specific technique; rather, it often includes many different elements or approaches. By creating learning relationships that are tailored to the child's unique developmental profile, you help him master the fundamentals that build emotional and intellectual health.
To learn more about DIR/Floortime GO HERE. To find practitioners in your area GO HERE.
With the click of a switch, Chuck Portell's mood changed as the animated movie on the television shut off.
The 5-year-old slammed the door, threw a toy and grunted and cried trying to get his words out.
Within a few minutes using distraction and play, a therapist and his mom had him on the ground laughing. His mom lifted him up and down on the pillow, and he said, "Go, Go," and later, "Get up, Mommy." He even gave the therapist kisses.
It's a big change from months ago when his mother, Shannon Portell, didn't know if she would ever be able to talk to her son without him hitting himself. Or ever let an outsider hug him.
Chuck, who was diagnosed with autism in January last year, didn't speak when he started in the P.L.A.Y. (Play and Language for Autistic Youngsters) Project in April 2009 through Easter Seals of Volusia & Flagler Counties. His mother didn't hear the words "Mommy" until five months ago.
Locally, officials at Easter Seals report a rise in children with autism, reflecting a national trend. The agency's diagnostic clinic sees about four children a month, including 40 children last year, compared to one to two a month when the clinic opened in 2007. About half end up diagnosed with autism.
The Florida Department of Education reports Volusia County schools had 336 students educationally classified with autism-spectrum disorders in the fall of 2009 compared to 211 in the fall of 2006. Flagler County schools had 83 last year compared to 49 in 2006.
Part of the rise, school officials say, is laws changed to include more categories such as Asperger's syndrome, a high-functioning form of autism. Also, more students have a medical diagnosis but are not in need of the educational classification for special services, said Flagler County schools' autism coordinator, Ellen Kincaid.
National statistics show autism-spectrum disorders are diagnosed in one in 110 children, up from one in 250 in 2001 and one in 2,500 in 1985.
FAMILY INVOLVEMENT
The reason for the rise is unclear, experts say, though there are more incidents and better diagnostic tools than in the past and more awareness among doctors. Researchers have found genetic links and environmental links could trigger autism, local experts said.
Nationally, there is a push for health coverage for services for individuals with autism and establishing a national information and referral center. The Volusia County school district also has a program of 44 support teams in 18 schools that include parents and addressing the needs of the students with autism.
The Easter Seals P.L.A.Y. Project, for 18 months to 6 years old, has served 18 children locally, including nine currently, since starting in January 2008. Therapists or home consultants work with parents at their home for a year or more teaching them techniques to help them interact with their child using 15 to 20 hours a week of intensive intervention.
The cost is $5,000, but most families are on scholarships.
"The model empowers the families," said Dorothy Lefford, P.L.A.Y. Project home consultant and director of the Autism Center of Excellence at the local Easter Seals. "It takes anxiety away from the child and improves communication so they are less frustrated. They feel safe. They can exchange that love and be connected to their family and world and less in their own autism world."
'EVERY DAY. . .SOMETHING NEW'
Portell, 36, and her husband, Craig, knew something wasn't right when her son was 3 years old and wasn't talking.
"When he started to smack himself repeatedly anytime people would speak to him and he was having trouble communicating, I knew something was wrong," she said.
Portell felt "frustrated and helpless" not knowing what her son was trying to tell her.
He would hit himself about 15 to 20 times a day. Now, it may only be once a week since he's learning how to communicate, his mom said. He has learned to recognize words, is writing letters and drawing pictures.
"Every day, he says something new," Portell said. She and her husband moved from Astor in April last year to Holly Hill to be closer to Easter Seals in Daytona Beach.
Chuck attends prekindergarten at the Easter Seals Charter School and will attend Holly Hill Elementary next year. His mom hopes he is placed in a regular classroom. He also gets occupational therapy and speech therapy at Easter Seals.
She's learned that physical stimulation like rubbing or squeezing him gently or jumping helps him put words together. Lefford said sensory motor play helps calm his nervous system, changes his mood and helps him focus.
At his house recently, Chuck played several games with his mom and Lefford, including playing with a toy cash register and chasing each other around with a toy snake. He repeated words and phrases and answered questions such as whether he was using a dollar or quarters.
Lefford said the change in Chuck has been huge compared to the days he would throw himself to the floor with tantrums and not speak. He now warms up to some strangers.
"He's starting to show many more social connections. He's not fearful, and his eye contact is greatly improved," she said. "There's not a cure for (autism). But it's about improving their developmental skills and function so they can be productive adults. It's a lifelong journey."
Krista Barringer, principal of the Easter Seals Charter School, where Chuck is one of 16 children including eight with varying special needs, also said, in August when he started, she would not make eye contact with him because when she did say, "Hello," he would hit himself. A few months later, he started responding and smiling at her.
"He's an adorable little guy," Barringer said. "He's the kind of kid you want to go up and hug, and you really couldn't. Now, you can."
When Ann Arbor residents Samuel and Ingrid Gregg enrolled their daughter Madeleine in the Play and Language for Autistic Youngsters program, they knew they were in for some work. "My wife and I basically rearranged our lives so that we could focus on getting this right," Samuel Gregg said. "It seems to have paid off."
Three years into the program, her parents say 5-year-old Madeleine is interacting well with her peers and has excellent verbal skills.
Results of the program have been so promising that the National Institute of Mental Health has awarded the P.L.A.Y. Project a $1.8 million grant for a controlled trial of play-based autism therapy. It's an increasing need considering autism is the fastest growing disability in the country, with 1 in every 100 children diagnosed.
Dr. Rick Solomon, the creator of the Ann Arbor-based P.L.A.Y. Project, said the program helps parents with young children implement intensive, developmental interventions in their own homes.
The program treats children across the autism spectrum - from mild cases like Madeleine to children on the more severe end. It is designed for children from 18 months to 6 years old. "Madeleine's progress is outstanding," Samuel Gregg said. "She just turned 5 years old and is going to a normal kindergarten this year. Almost all of the exterior signs that one associates with autism are no longer present."
Solomon, who created the program in 2001, said children with autism need intensive intervention, which means 15 to 25 hours a week of one-on-one or one-on-two engagement. "It's play with a purpose," Solomon said. "The child to adult ratio is supposed to be very high, and it should be engaging interaction."
Solomon starts by giving a refined diagnosis of where the child is on the autism spectrum and what he thinks would help the child. One of his trained consultants then visits the family's home to teach family members - parents, siblings and grandparents - how to do play therapy with the child.
"The P.L.A.Y. Project starts with doing what your child loves, with them, in a way that gets them connected to people," Solomon said. "What I say is that when you do what the child loves with them, then the child will love being with you. That starts to break down autism's isolation. We have a whole system that helps parents connect with their child. We want parents to be their child's best play partner."
Play can be spread throughout the child's day, including in everyday rituals such as getting in the car, getting ready for bed, and during meals.
Every month, the consultant returns to the house for a follow-up appointment, and videotapes a play session. Solomon analyzes the tape, making adjustments to the therapy and offering suggestions to continue progress.
The Greggs say they've made the P.L.A.Y. therapy part of their lives, and it's now second nature.
"For any parents whose child receive a diagnosis of autism, be it extremely mild or extremely severe, they are bound to experience it as shock," Samuel Gregg said. "But the P.L.A.Y. Project is one of an emerging play-based therapies that offers real hope. Of course there is no guarantee in this business, but it certainly does offer a proactive way to help a child to transcend their difficulties."
Solomon created the program while working as a developmental and behavioral pediatrician at Allegheny General Hospital in Pittsburgh, Penn. He based it on the work of child psychotherapist Stanley Greenspan and his developmental, individualized, relationship-based theory.
"When I got to Pittsburg, the state had just passed this law to pay for autism services and a bunch of families came to me and asked if I would order these services for them," Solomon said. "Pretty soon I was swamped, and I became an expert in autism simply because I had to. The families chose me, and I fell in love with these children. It has been a group of kids who needed help, and I was in a position to help them."
When Solomon came to Michigan, he said he discovered the state had few public services that met the requirements for the intensity autistic children needed. He is now the medical director of The P.L.A.Y. Project at the Ann Arbor Center for Developmental and Behavioral Pediatrics.
The P.L.A.Y. Project is now in five countries and 27 states.Solomon said his research showed more than half of the children enrolled made substantial gains in their development when they participated in the P.L.A.Y. Project.
Solomon, a father and grandfather, diagnoses a child with autism in the Ann Arbor area several times a week and calls it a heart-breaking experience.
"Autism is a very serious condition and nobody wants to have a kid with serious difficulties, nobody wants to see their children suffering," he said. "But this program is alleviating the suffering."
For more information, visit http://www.playproject.org or call (734) 997-9088. Scholarships are available through The Michigan Autism Partnership.
Along with many other challenges, a child with autism usually does not develop play skills naturally like his typically developing peers. Easter Seals Central California offers free in home training sessions for parents and therapy for children. In an interview, Drea Strompf (P.L.A.Y. Project Home Consultant) explained what the P.L.A.Y. Project was and how interested families can become involved.
PLAY is short for Play and Language for Autistic Youngsters. It was created by Dr. Rick Solomon and and is based on the DIR theory of Stanley Greenspan, popularly knows as Floortime. Our program emphasizes the importance of helping parents become their child's best PLAY partner. It focuses on helping children with ASD build emotional connections and engage in meaningful relationships. We play at the child's functional developmental level while helping the child gain social skills and langauge by building strong relaitonships with adults and eventually peers. We allow the child to guide the play and through the child's interest we encourage reciprocal interaction. It's a fun program not only for the child but the parents too!
When Parents receive training it has a tremendous effect on the child's progress. Parents are their child's best therapist. There is no better person to start with than the people the children see the most and find most comforting. If PLAY is not done within the home on an everyday basis, there will be no progress. Parents and caregivers are the child's best play partner.
If a child is diagnosed or at risk for autism they are likely to be great canidates for participating in the PLAY Project. As long as the child is under the age of 8 and lives in Fresno county there is no cost to participate. However we need a stong commitment from families. They will put in the time and effort expected of them by their Home Consultant. The child will not progress if the parents are not involved.
As her son Richard lies on the floor, Holly Carter plays patty-cake with his feet.
When the 4-year-old swiftly crawls across the floor, she's right with him. He leaps up and darts across the room; Carter is by his side. Although it looks like she's performing some sort of maniacal mirroring marathon, playing this intensely is not all for fun and games. Richard is autistic, and doesn't speak.
Their activity is part of a three-year research study of the Play and Language for Autistic Youngsters (known as the P.L.A.Y. Project) home consulting model, a parent-training program that addresses the need for intense early intervention for young children with autism. Parents commit to playing with their child 20-25 hours a week with consulting from a play therapist. The goal of the project, supported with a $1.85 million grant from the National Institute of Mental Health, is to see whether this type of intensive play can help children with autism come out of their shells.
In a nation where about one in 150 children are diagnosed with autism, such a program provides a glimmer of hope for parents who wish something could become different. Because it's the fastest growing disability in the United States, too few people are trained to handle the intensive intervention recommended by the National Academy of Sciences. The P.L.A.Y. Project, the largest study of its kind, is designed to address the shortage by using a "train the trainer" approach, which is helping to rapidly spread the program around Michigan, the nation and the world.
While other therapies can cost as much as $60,000 a year, play therapy at $4,000 is much cheaper. Only about 150 children participate in the actual research study, but about 400 Michigan children receive play therapy as part of 15 play projects across the state, according to Dr. Richard Solomon, an Ann Arbor-based pediatrician and developmental and behavioral specialist who founded the P.L.A.Y. Project. Nationally, about 3,000 children are in therapy, and the technique already is being used in Australia and England.
Solomon says he hopes to see tens of thousands of children helped by this fast-spreading form of therapy.
"We're training the parents to be sensitive and responsive to their child's interest and this has been shown to be a very powerful way of helping children, especially with autism, to connect to their caregivers," Solomon says. "Once the child is connected, their development gets engaged, and that's what leads to improvement."
Carter understands exactly what he means. Since the Howell resident began the therapy, she notes, her son has come a long way.
"When we first started, he wouldn't notice anyone else in the room. He wouldn't even look at anyone," Carter says. "Now, he laughs out loud when he's tickled, grabs a pretzel from a visitor's hand and chomps into it, laughs and runs away. He wanted to feel the snow settling on the balcony separating his playroom from the outdoors, and climbs up the side of the stairs trying to get around a baby gate so he could go upstairs to watch his favorite movie."
Adam Brode, a P.L.A.Y. Project home consultant and speech language pathologist, has helped with that. Not only has he modeled how to play with Richard, he's consulted with Carter about how to go about playing with Richard a minimum of 20-25 hours a week. She says it was difficult for her to catch on to how to play with her son, finding herself making it a mechanical exercise instead of an intuitive and natural experience at first.
"We're making sure nothing stands in the way of reaching his full potential," Brode says. "We work to maximize the relationships kids like Richard can have with their families."
Besides Richard, Carter has a husband and another son, Vince, 2, to care for. Still, she is aggressively working to ensure Richard has the best chance possible. Besides working with Solomon, he is also enrolled in speech, occupation and music therapy programs. Carter, founding of the Boxing Autism Club, a support group in Livingston County and the executive director of the Michigan Autism Partnership, has become an autism activist. She works for change, pointing out that insurance companies in the state of Michigan don't cover these recommended therapies for autistic children.
She also offers reassurance for other parents of autistic children.
"If you really want to learn, have the desire to do this and your heart is in the right place, you are going to be able to do this."
Exceprt, to read more visit: www.aota.org
While many sites on the EBP Resource Directory have information related to ASD, three recently added sites focus on research and information for individuals and their families with ASD. The P.L.A.Y. Project, based on the DIR (Developmental, Individualized, Relationship-Based) theory of Stanley Greenspan, MD, and Serena Weider, PhD, provides information for parent and professional on implementing intensive developmental interventions for very young children with autism. Also included in the Research section of the P.L.A.Y. Project Web site is a bibliography of evidence-based research supporting play-based interventions, as well as downloadable pdf of the results of a study by the P.L.A.Y. Project partners (http://www1.aota.org/ebp/index.aspx?RISD=1189).
Are alternative treatments for autism risky business? The answer is yes... and no.
Autism: Kids Put at Risk is the name of a new article from the LA Times which is, in essence, an "expose" of biomedical treatments for autism. The story builds on last week's piece in the Chicago Tribune, which takes a similar negative stand on alternative treatments for autism.
According to the LA Times article:
After reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, an investigation by the Chicago Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.
The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on flawed, preliminary or misconstrued scientific research.
Lab tests used to justify therapies are often misleading and misinterpreted. And though some parents fervently believe their children have benefited, the investigation found a trail of disappointing results from the few clinical trials conducted to evaluate the treatments objectively.
Both of these articles legitimately point out inappropriate and misleading presentation of research studies. And both point to specific expensive and risky treatments which have the potential to injure children.
But there's more to the story than would meet the eye of the casual reader.
To begin with, the "desperate parents" described in the article are often desperate for a reason. They feel that all they've received from the medical community is a diagnosis and a handshake. The next steps, from researching and selecting treatments to funding those treatments, are up to the parents. And those parents are doing the best they can to find good information using resources available: the Internet, support groups and books. Is it any wonder that parents find suggestions that would not typically be supported by their pediatricians?
Or they've been recommended to intensive, 40-hour-a-week behavioral interventions (ABA), often described as the gold standard in treatment. But they've received no information as to how to access such therapy, or how to pay the tens of thousands of dollars it costs.
Or they've been offered potent anti-psychotic drugs or SSRI's to manage their child's behavior, all of which have significant known side effects.
Meanwhile, many of the available "alternative" treatments (that is, those that are rarely specifically recommended by developmental pediatricians) are neither risky nor "harmless New Age folly."
Some are well-researched (Omega-3 fish oil and B-12 supplements, for example).
Others are well-established, risk-free, and based on solid foundations of research conducted in other fields (various forms of developmental and play therapy such as Floortime, RDI, and the Play Project).
And while there is significant controversy around the issue of limited diets (gluten and/or casein free, specific carbohydrate, etc.), many families and some research studies report positive outcomes.
Bottom line: alternative treatments for autism run the gamut from high to no risk, and from useful to dangerous. Meanwhile, those mainstream treatments that are available do the same. To avoid the likelihood of parents saying "yes" to expensive, dangerous options, the medical community will need to offer more - not only in terms of diagnoses, but also in terms of treatment recommendations, resources, and ongoing support.
When Parker Reed was an infant, he was a healthy and on track developmentally until he neared his second birthday. That’s when his parents noticed that Parker’s already sparse vocabulary was dwindling … eventually down to nothing.
“Parker had previously had problems with fluid in his ears, so we thought it might be a hearing problem,” his mother, Amy, recalled.
“But after two sets of tubes, we realized it was not.”
After visiting several neurologists, he was eventually diagnosed with autism spectrum disorder at Children’s Hospital in Detroit. Amy said she felt relieved at the diagnosis, as doctors had been prepared to send her son to a Muscular Dystrophy clinic.
“I used to teach first-grade, so I felt like, OK, we can handle this,” she said.
“I came home and started researching big time, to make sure I was choosing the right therapies and the right doctors.”
Amy’s husband, Rick, said that after much “careful and prayerful” evaluation, the couple chose to enroll Parker in the Easter Seals PLAY Project in Ann Arbor. Easter Seals provides services, education, outreach and advocacy to people living with autism and other disabilities.
Parker, now 8 and a second-grader at Beverly Elementary, is this year’s Southeastern Michigan Easter Seals Ambassador. He spoke at the first Walk for Autism at Oakland University in August, and will be a featured speaker at the Easter Seals’ “Hollywood Nights,” a black-tie event in October.
The PLAY Project involved four years of play therapy for Parker on a daily basis that Rick Reed compares to the equivalent of a full-time job.
“He appears to be high-functioning and intellectually or academically age-appropriate, especially for a child with a disability,” he said.
“That success is due to early intervention, tens of thousands of dollars, many thousands of miles and the support of aggressive care from our team of doctors.”
Amy said she credits Dr. Rick Solomon, creator of the PLAY Project, with the fact that most people don’t even know Parker has autism.
“The play therapy brought Parker out again. He had no words, no eye contact. He was just to himself,” she said.
“He still prefers to play by himself, but he does interact.”
His parents also credit the Birmingham Public Schools for providing a safe, caring environment for Parker — even his classmates are involved.
“We moved to the Birmingham district because it is one of the top districts in Michigan for providing autism services. His classmates are wonderful — they help him out when he gets distracted, and help him to the car at pickup time. They’re great.”
As the child ambassador for “Hollywood Nights,” Parker will meet attendees and speak about the impact Easter Seals has had on his family’s life. Parker told his mother he is “excited” about speaking into the microphone. He also designed this year’s Easter Seals holiday cards.
“We have dreams of watching him play in the school band or sports one day, we would like him to go to a high school dance, get his driver’s license, go on a date and yes … even go to college, get married and be self-sustaining,” said his father.
“We owe Easter Seals and Dr. Solomon a life debt. Each time Parker does things cognitively normal, we have Easter Seals to thank for keeping Parker on track.”
Easter Seals’ “Hollywood Nights” benefit will take place Oct. 9 at the Royal Park Hotel, 600 E. University Drive in Rochester. All proceeds will benefit Easter Seals’ early intervention autism therapies.
A pioneering early intervention approach for autistic children aged under five and their families is being expanded.
MindBuilders, a UK programme derived from the American model Play Project, has been running in the London borough of Tower Hamlets for the past four years under founder Sibylle Janert.
Dr Rick Solomon, who developed the Play Project programme, was in London last week to hold a workshop conference for parents and practitioners.
In the programme, parents learn how to interact with their children in the home through initiating interaction, storytelling, two-way gesturing and copying.
'The model grew out of a desperate need for parents to have intervention that works,' said Dr Solomon. 'It's intensive intervention, up to 25 hours per week, with a one-on-one set-up. The difference from more traditional programmes is that it is developmental as opposed to behavioural.
'Parents are more involved in this programme and it's promoting their relationship with their child. We help parents to feel that connection with the child through coaching them to be their child's play partner.'
Dr Solomon also spent two days training six new therapists who will help to support more families in Tower Hamlets.
'Sibylle Janert really deserves credit for this,' he said. 'I trained her and she was so successful in helping children, that they wanted to involve more people.'
Khalida Khan, manager for integrated services for disabled children in Tower Hamlets, said, 'Mindbuilders has been our vehicle and this training will now allow our professionals to deliver the Play Project approach as one form of intervention. It's a very rich programme. There's a lot of humour and warmth in the play.'
In the US around one in 100 children are affected by autism, while in the UK it is one in 150. Dr Solomon reckons that the programme is effective for two-thirds of participating families.
He said, 'We need an intervention programme that is cost effective as well as efficient. If the Play Project is effective, it could prove to be a solution, as the average cost is $3,500 or £2,000 per child per year, compared with more traditional behavioural programmes which can be as much as $50,000 per child.'
The National Institute of Mental Health has awarded Richard Solomon, medical director of The P.L.A.Y. Project, a $1.85 million grant to fund research on play-based early intervention for autism.
Solomon is conducting a three-year study of The Play and Language for Autistic Youngsters Project Home Consulting model, a parent-training program that addresses the need for intensive early intervention for young children with autism.
The Ann Arbor-based project addresses the shortage in personnel trained in intensive approaches for working with those children by using structured monthly home visits focused on modeling, coaching and video feedback, to train parents to engage their autistic child in ways that promote emotional connection and communication.
The program also reduces costs for parents to about $4,000 per year, or a tenth or less of what other intervention programs cost, The P.L.A.Y. Project claims.
Grant to Fund Research on Play-based Early Intervention for Autism; Confront Increasing Numbers of Young Children on the Spectrum
Through the support of a $1.85 million grant from the National Institute of Mental Health (NIMH), Richard Solomon, MD, is conducting a three-year study of The Play and Language for Autistic Youngsters (P.L.A.Y.) Project Home Consulting model, a parent-training program that addresses the need for intensive early intervention for young children on the autism spectrum.
Today, approximately one in every 150 children is diagnosed with an autistic spectrum disorder. As the fastest growing disability in the U.S., autism continues to gain public attention, yet there is a national shortage of personnel trained in intensive approaches as recommended by the National Academy of Sciences (NAS). The P.L.A.Y. Project a ddresses this shortage by using a ‘train the trainer’ approach, which promotes rapid dissemination of the program.
Developed by Dr. Solomon, P.L.A.Y. is a practical, family-friendly application of renowned child psychiatrist Dr. Stanley Greenspan’s Developmental, Individual-differences, Relationship-based (DIR) framework, popularly known as Floortime. Through structured monthly home visits focused on modeling, coaching, and video feedback, consultants train parents to engage their child with autism in ways that promote emotional connection and communication. By training parents to participate in their child’s intervention, the program also promises to be cost-effective. The P.L.A.Y. Project costs under $4,000 per year, in comparison with other interventions that cost $40,000 to $60,000 per year.
With research-design guidance from Michigan State University, and community-outreach support from Easter Seals, The P.L.A.Y. Project is conducting a randomized, controlled, and blinded clinical trial. Drawing participants from five Easter Seals autism service locations, the study compares the outcomes of 60 children who participate in The P.L.A.Y. Project with the outcomes of 60 children who receive standard, community interventions, making it the largest study of its kind. Before and after the 12-month intervention, each child is assessed with a battery of tests to measure developmental level, speech and language, sensory-motor profile, and social skills.
“Preliminary research and early dissemination into community agencies, schools and hospitals around the world has demonstrated the effectiveness of our model,” said Dr. Solomon, medical director of The P.L.A.Y. Project. “Positive research outcomes would support efforts to encourage private insurers and government agencies to approve increases in funding for play-based autism intensive intervention services and ultimately, help children with autism become more engaged with the world around them."
An Ann Arbor doctor is conducting a three-year autism study of his play-based intervention program after receiving a $1.85 million grant from the National Institutes of Health.
The program, called The Play and Language for Autistic Youngsters Project Home Consulting, or P.L.A.Y., focuses on training parents in intensive early intervention methods for young children. It uses a model that incorporates structured monthly home visits to train parents to interact with their children in a way that will promote emotional connection and communication.
Solomon will be discussing his work at the Ann Arbor District Library Downtown branch, 343 S. Fifth Ave., on Oct. 27 at 6:30 p.m.
For more information, call the library at 327-4555. For more information about the P.L.A.Y. project, call the Ann Arbor Center for Developmental and Behavioral Pediatrics at 734-997-9088.
I was working full-time and didn't realise that my four-year-old son, Adam, wasn't playing like other children. I didn't notice a lot of things. I was a working mother and left a lot to others.
Then I noticed him flapping his hands. He wouldn't make eye contact. People bought him toys and he wouldn't play with them. He was diagnosed as autistic. Often people are shocked by the diagnosis but I was pleased because I thought: now I can get help."
Diana is telling her story to parents who have gathered to learn about a unique approach to helping children who are behind in their development.
The meeting is oversubscribed and extra chairs have to be brought in for latecomers at the Spark centre for children with disabilities in Bethnal Green, east London. Sibylle Janert, the psychologist running the session, says the neuro-developmental approach can make a huge difference to the lives of children and their families – but there is no magic wand.
Hers is a simple, practical method, inspired by the knowledge that children with autism, like any others, have the potential to develop and grow socially, emotionally and mentally. We have come to think of autism as something terrible and static, she says, but if we address problems early enough we can help children to join the world of social relationships.
Diana says Adam has made a lot of progress since she began to work with Janert. He loves sharing play with others and is beginning to talk. "Sibylle has opened my eyes to how you need to be there for your child and I have given up work," she says. "Before I would give him a toy and let him get on with it. Coming here I have learnt that you can't leave them to do their own thing, even normal kids; you have to join them, take turns and play with them."
The author of three books on supporting autistic children, Janert works with families through MindBuilders, a not-for-profit organisation aimed at empowering parents through family-centred intervention. Now the London Borough of Tower Hamlets has commissioned her to work with the parents of children under five and other professionals who support them.
She is the first trained home consultant in the UK for the method – Play and Language for Autistic Youngsters (PLAY) – which was devised by Dr Rick Solomon, the director of the Ann Arbor Centre for Developmental and Behavioural Pediatrics in the United States. In October, Solomon is visiting London to conduct workshops with Janert for parents and professionals.
At the core of the programme is the idea that the people who spend the most time with the children – their parents and carers – are the ones who can make the biggest difference. Children with autism find it difficult to process the sensory information coming at them and adapt by concentrating on one thing, such as running a toy car back and forth or jumping up and down, says Janert. She calls this a comfort zone activity; the actions are repetitive because the child can't think what else to do. They are solitary and if you try to stop them, they get anxious and do it even more.
That children can focus on one thing means that they can tackle other things and learn to share and communicate, she says. "Don't try to stop him but join him," she says. "Tackle the solitary behaviour by giving him a taste for interactive play. Engage him through shared pleasure, not coercion."
She shows a video of Nabil, aged four, who was unresponsive and did not make eye contact. He was on the floor, moving a car up and down, lost in his own world. Janert gets down next to him and guides his hand, showing him how to move the car up and down his arms and on to his head. He laughs, and while he is enjoying the game, she takes the car from him and hides it under his jumper, then gives it back. Delighted, he tries it himself. By now he is not frightened that she will take the car away and hands it to her to continue. She does the trick again, gives it back and he copies, running it down her left arm, and then on to her right arm for a longer "drive".
She says: "He can sustain a state of shared attention with another person and stay calm and engage in social play," she says. Now, two years after the video was made, Nabil is talking and learning to read.
Parents are keen to share their stories. Doreen says her three-year-old son, Toby, used to stare into a corner or out of the window when anyone tried to talk to him. Other times he would jump up and down. "Since Sibylle has been coming to see us he doesn't look out of the window, he doesn't jump and the only thing he still does is look at the corner, but not as much as he used to do. If he is excited he bounces and he lets me bounce with him. He looks at me and laughs. He has been toilet-trained for a year and he can let me know what he wants."
Dega says she was once desperate for her four-year-old, Yacqoup, to speak but now realises that he can communicate in many different ways. "He was lost in his own world, and couldn't keep still for five seconds," she says. "Sibylle came to our home and showed me how to play with him. He has improved immensely. He can only say a few words but he can communicate and that is the most important thing. He can make choices and he is much calmer."
Children are assessed and placed on a six-tier developmental ladder, beginning with level one when they share attention and progressing to higher levels, when they can relate to others, initiate two-way communication, and solve problems. Almost all make some progress and a few, like Nabil, reach levels five and six, which is near normal.
The whole family benefits, says Janert, as she welcomes Sam, mother of four-year-old Kiera to the session. In just 10 months, the relationship between Kiera and her mother has improved almost beyond recognition, she says. From a child with unmanageable behaviour who pushed people away, Kiera is now happy and communicative.
It is almost 11 years since she began her work in Tower Hamlets. While shopping last month she spotted Carl Fofi, the first child she helped. "When I first met Carl he was flapping his hands and didn't play or talk," she says. "The Carl I saw this summer was a strapping, confident teenager who told me casually, that he was doing his GCSEs."
