Sarah Kennedy
04/26/2007
Autism or Autism Spectrum Disorders have become a topic of conversation among parents, in the news, and on the internet. A story on the Yahoo news page on the internet stated that the U.S. gives the rate of occurrence of autism as 1 in 150 in children. Autism is becoming a national healthcare crisis. This is not just a problem for families with autistic children. It is a problem for everyone in the community. Children with autism will grow up to be adults with autism and they need to receive early intervention and treatment in order to support themselves and contribute to society, or we as a society will end up taking care of them medically, emotionally, and financially. A recent study from researchers at Harvard University and ABT Associates Inc. of Lexington Mass found that “each individual with autism accrues about $3.2 million in costs over a lifetime, with lost productivity and adult day care making up the lion's share. It was already known that autism costs society more than $35 billion annually in direct and indirect expenses, but it hasn't been clear when these costs occur over a lifetime, the researchers said.” ( Gardner )
As late as 1989, a standard psychiatry textbook stated that therapeutic intervention has little beneficial effect except to prevent further deterioration in the autistic person. “‘This data today shows we're going to need more early intervention services and more therapists, and we're going to need federal and state legislators to stand up for these families,' said Alison Singer, spokeswoman for Autism Speaks, the largest organization advocating services for autistic children.” (Stobbe) Most people in Central Illinois believe that there is little or no hope for serious treatment for children with autism spectrum disorders (ASDs). Facilities who offer medical treatment have not wanted to be involved with autism as there is no income to be made from it and the results have historically been poor. People have had to drive great distances for evaluations and treatment and tender great amounts of money to receive treatment. The fact that the cause is not known contributes to this wariness. The PLAY project (Play and Language for Autistic Youngsters) at Easter Seals offers young children a real chance for an intense, early intervention treatment that is clinically proven to be effective in most cases for children under the age of six.
What is autism exactly? “Autism is a complex developmental disorder that appears in the first 3 years of life, although it is sometimes diagnosed much later. It affects the brain's normal development of social and communication skills. Autism is a spectrum that encompasses a wide range of behavior. The common features include impaired social interactions, impaired verbal and nonverbal communication, and restricted and repetitive patterns of behavior. The symptoms vary from moderate to severe.” (Autism Information) Children with autism can perform repetitive body movements and can be extraordinarily distressed when routines are changed. They may have extra sensitivity to textures, tastes, smells, and noises. These are called sensory issues. They may have a short attention span and have intense tantrums, totally keep to themselves, not be able to communicate, and just be closed off to the world. Some children will fight tooth and nail to be left alone.
According to Dr. Richard Solomon, director of the PLAY project at U-M, you call an autistic child's name and they do not answer you. You dream about when your child can say, “I love you”. Solomon states that kids with autism “don't seem to value human relationship. They avoid it because it's too scary, too complicated. Their brains are designed in such a way that they are oriented toward things. They like to look at doors, the ways doors close. The child with autism is a linear thinker. They like to line objects up. They love trains. And this line of thinking eliminates people.” (Solomon) Dr. Solomon explained on his cd that if we were to land on another planet and there were all kinds of loud creatures and things racing around and running up to you and trying to talk to you in a foreign language, we would panic and hold our heads and rock back and forth, closing down. He said that is what our world is like for the autistic child. Dr. Solomon doesn't think he can cure autism and is not sure if anyone can, but he thinks he can make significant progress with “meet them where they're at” and engaging a child in a warm way to try to bring them into our world.
What causes autism? There is no completely proven cause attributed to autism. This makes it even more difficult to treat a disability if you cannot isolate the cause. “The largest study of the genetics of autism ever conducted, involving DNA from almost 1,200 affected families worldwide, has already yielded two important clues to the poorly understood disorder, scientists say. Discoveries in two areas of the genome -- a region on chromosome 11 suspected of having links to autism, and aberrations in a brain-development gene called neurexin 1 -- could spur more targeted research, the experts noted.” (Mundell) “‘When we have this type of knowledge, we can actually think about designing better therapies based on what we know is not happening properly in the [brain] cell. We can try and design things to make it work better,' he explained.” (Mundell)
When a parent finds out that their child has autism, they can go through a whole range of emotions. They may experience grief, and loss - the loss of a future for their child and the loss of what they had planned for a future for themselves. They may or may not realize that their lives will probably change dramatically compared to what they had planned. They may feel hopeless and helpless. A sense of denial is often very strong, especially with fathers. They will probably worry if their child could ever experience the joy of play, how they could ever support themselves, or the worst of all, “what will happen to my child when I am longer on this Earth to care for them?”
The fact that the cause is unknown is just an added frustration for the parents or the families. They feel like their hands are tied. Many feel like they can't fix something or work on it if they don't know what caused it or what is wrong. Dr. Solomon says that “What makes this so challenging is that you're working with the grief process all the time. Parents, in their grief, wish for a normal child. As a result, they try to force the child to become normal by getting rid of the abnormal. In The PLAY approach, we accept the child's world view as their norm. I compare it to a Chinese finger trap. The more you pull on it, the tighter it grips you. As soon as you learn to let go, you can slip your fingers out.”
In order to explore what life might be like with an autistic child, I interviewed a parent who has a child that is on the autism spectrum. This child is quite involved and can be a challenge for the family.
Following is an excerpt from an interview with Lily Raines, mother of Bradley Raines, an autistic child. *Names have been changed to protect their privacy. Mrs. Raines speaks to what her life and her son's life are like dealing with autism. Mrs. Raines is an avid advocate for autism treatment. The Raines' have sought many treatment methods for their child. They and their child participate in long hours of treatment.
Sarah Kennedy: Mrs. Raines, thank you for agreeing to speak to me about what your
life is like with an autistic child.
Lily Raines: My pleasure. I am grateful for all of the attention that is currently being paid to this issue. The month of April is Autism Awareness month, so we are doing what we can to draw attention and take the opportunity to ask legislators to support treatment for autism.
SK: Can you give us some background on Brad? Was your pregnancy unusual?
LR: No. Brad was born as a full term baby and nothing unusual went on. Then when he was 21 months old, I gave birth to his brother. Prior to this, Brad seemed to be developing fairly normally. Suddenly, he began to regress. He would not make eye contact. He would not look at you or answer if you called him or spoke to him. He seemed not to hear you. Our original fear was that he had suffered some kind of hearing loss or deafness, not autism. This is one form of autism, where a child develops and then back-slides. It was quite a shock to find out that he was autistic.
SK: What were your feelings and thoughts when you found out?
LR: He was three and a half when we received an official diagnosis. We were one of the first families to go through the Autism Clinic at Easter Seals. Back then, there was not as much known about autism as there is now. We experienced a whole range of emotions; grief, denial, shock, anger, loss. Over the years, my life has been a 180 from what I ever thought it would be. Back when we received our diagnosis, it was almost like, “Yes, your child is autistic. You can get speech and occupational therapy, but there was not really a lot of hope and help out there. It was like, yes your child has autism, good luck.” We did tons of research on our own, signed up for and tried so many things. We joined support groups. We really felt we were on our own. No one could tell us what caused this, what to do about it, or where to turn for help.
SK: I know Brad has been getting treatment for many years. Can you tell us about some of the symptoms he has or has had or what behaviors he has displayed?
LR: Brad's behavior has ranged from wanting to be completely alone, spinning for hours without every getting dizzy, running on his toes while flapping his hands, to acting out, screaming at the slightest thing that may upset him, to getting violent and hitting others or having tantrums. It is very difficult most of the time. We want to help our child fit into society and our family, but the very basis of his illness pushes people away and makes him withdraw into his own world. For a time period Brad's eating and nutrition were grossly affected. He would not eat any cold foods, like ice cream, etc. He would not eat anything crunchy such as crackers, cereals, or raw veggies. He refused to eat from a spoon. He would only eat 5 foods: peanut butter and jelly sandwiches, roast beef sandwiches, cheese chunks, bananas, and pepperoni. Lots of kids are picky eaters, but this went way beyond that. We were worried that his health and weight would be affected. It was a very hard time. He still will not eat all foods, but has received feeding therapy and sensory integration therapy to expose him to and try to integrate different textures into his diet to give him proper nutrition.
SK: You mentioned feeding therapy. What other methods of treatment have you tried and what was your experience with them?
LR: Since we were diagnosed at the time that no one really knew what helped or what to do, it seems like we have done it all, with mixed results. After we got Brad's diet to improve and other foods introduced, we heard about some treatments with restricted diets. We were very nervous to try this after we had worked so hard to get him to try new things. We thought he would regress. Gluten free diets were reported to help with kids with autism. We tried this for a while. It didn't seem to make a difference.
We have been in speech and occupational therapy at Easter Seals for years and have made slow progress in getting Brad to speak. At age three, he only said mama and dad. At age 5, he said a few more words. Now, at age 8, he says very short two to three word expressions. Our goals over time were to get Brad to feed himself, to dress himself, to interact with others as much as possible, and to go to school. We tried ABA (Applied Behavioral Analysis) for a few years. Brad did make a little progress with words, but that was about it. The ABA worker delivered a very rigid program. It seemed at times that it was very upsetting to Brad. He seemed to panic more. It just seemed too hard on him and on us. We had ABA for 40 hours per week. Brad also got to the point that we wanted him to go to school, and that would not be possible if we continued the ABA for that many hours.
SK: We touched on symptoms before and how you felt when you got the diagnosis. I know we could talk about Brad, your life, your treatment, etc. for hours. But, obviously we can't. I would like to ask you if you are comfortable telling me, how has this affected your life, your hopes, your family life?
LR: My life has been nothing like I thought it would be. Think about when you were young, dating, and decided to get married. Then, you decide to have a baby. You prepare for the baby and dream about what your life will be like with your beautiful baby and new family. Then, it is like a bad dream. Your gorgeous little toddler wants nothing to do with you, won't look at you, won't interact with you in any way. You want to hold him and he screams, panics, hits. You feel like he hates you. In the scheme of a lifetime you see your child growing up, going to school, going to college, getting married and having your grandchildren. We don't know if this will ever happen for our child and probably will not to some degree. I am not sure at this point, but my first inclination is that my child will probably not go to college. It is hard enough for people to get jobs and have careers when they do go to college and are “normal”. I don't know how my child will be able to support himself. He can stay with us and we will take care of him as long as we are alive and able, but when we are gone, it is incredibly frightening to even think about.
We try to take things one day at a time, but sometimes it is overwhelming. All of our time, energy, and resources go into trying to help this child. We are lucky that my husband has a good job, especially for our area. Our insurance pays for most of the speech and occupational therapy at Easter Seals. However, the costs of treatment, evaluations, genetic testing, ABA , has severely impacted our household's resources. I had always thought I would have a career. That went out the window when autism entered our lives. Brad is so, I don't want to use the word needy, but another escapes me right now, maybe so labor-intensive.
My life is one appointment after another, one treatment after another, support groups, autism advocacy, calling legislators, doing research to see if there is anything else we can do and talking to doctors. We go see Dr. Solomon in Ann Arbor ( Michigan , this is about a six hour drive one-way from our area) once a month to work with him on the PLAY project, which has helped us make the most progress to date. We also have another child. If I were to be 100% honest, my other child has been put on the back burner many times. He has made sacrifices too, some that he knows about and some that he doesn't even realize. I am sure this happens in all households where a child is disabled to some degree. There is only so much money. You have to make decisions between new toys and therapy, swimming lessons and therapy. Our social life is almost non-existent. It is difficult to get someone to help with a child that may act out or even attack you, especially when you are not used to some of the triggers that may bring that on. Our household revolves around autism and an autistic child.
Like I said, we are one of the lucky ones, even though our child is more severe than many others. We have more financial assets than most. Our marriage is strong. Many couples have split up over this, and as you know last year the lady killed her daughter to “put her out of her pain” of autism. I don't know what the future holds for our family, but we will try as long as we possibly can to make my son's life as normal as it can be for him.
SK: Thank you Mrs. Raines.
The few options for treatment for autism can be very expensive. This can negatively impact the family's resources. Parents will probably have to make choices that will require sacrifices for everyone in the family. The parents would like to be able to get good, wholesome, effective treatment that would not damage other body systems or put their child at a health risk. The other children in the family will probably have to give up activities and things that they may have normally been able to have or to do, due to the autistic child's needs and treatment schedules. Parents often don't know where to turn or what to do in order to help their child. This can be a strain on the parents, their marriage, their finances, and the whole family.
In a perfect world, there would be understanding people that didn't think the child was bad or the parents were bad parents when the child acted out in public. People would realize what was going on and reach out to offer a kind word or a helping hand. There would be provisions for an equally excellent education for the children. There would be a place for them to fit into the world. There would be options for quality employment in order to sustain them and to relieve their worried parents about their future and what will happen to them after the parents are gone. With the incidence of autism now at one in one hundred fifty , the reality is that children with autism grow up to be adults with autism and need a place of their own in this world. They need a place of their own just as Virginia Woolf needed a room of her own and a comfort zone in order to productive members of society. The parents need a tangible hope that they could cling to and sustain them.
The Play and Language for Autistic Youngsters project or PLAY project at Easter Seals Central Illinois offers young children a real chance for an intense, early intervention treatment that is clinically proven to be effective in most cases for children under the age of six. The PLAY project is growing in capacity and popularity each week. Sometimes, though, parents will try other methods of treatment for autism. At Easter Seals, parents who have tried alternative methods of treatment, and are not fully satisfied with the results or method, will occasionally call and ask to receive more information about the PLAY project as well.
The PLAY project was started in Ann Arbor Michigan by Dr. Richard Solomon and adapted by Easter Seals Central Illinois in approximately 2005. In an evaluation of Dr. Solomon's program by blind raters using the Functional Emotional Assessment Scales, 46 % of children made good to excellent progress and another third (32%) made fair functional and developmental progress in reducing autism severity. This is very good progress for autism. The overall satisfaction with the program was 90%. Parents also found the program cost effective. These satisfaction and progress ratings are remarkable in the fight against autism. The general consensus is that young children from 18 months to 6 years old with autism can benefit significantly from intensive and comprehensive therapies.
Applied Behavioral Analysis (ABA) is the treatment probably most often used an alternative to the PLAY project in the battle against autism. Applied Behavioral Analysis has some features that are, in fact, similar to the PLAY project. Both are intensive. Both methods feature one on one treatment. Both seek to treat children in an early intervention approach prior to the age of six. However, this is where the fundamentals of the two methods diverge. Some of the main differences are the methods and focuses of the program. The PLAY project is flexible. It works on the strategic areas of language and social skills, but lets the interests of the child take the lead. It works with things that the child is interested in, even if the interest is a bit obsessive. The intensity of the sessions is flexible is a more individualized program that wants the child to truly engage with other people and “come out” into the world with the rest of us instead of staying in their own world or shell. However, the comfort level of the child is paramount and always taken into consideration. ABA is a very prescribed and rigid program. The child needs to “fit into the program” instead of the program fitting the child.
The PLAY program focuses on the natural joy of play in the child. It builds on the rights to play and the natural curiosity during play in the child. The reinforcements used as a reward are more social and more natural, such as hugs, applause, and praise. Since the PLAY therapy is ultimately performed by the parents after they are trained by the PLAY consultants, these rewards can bring parent and child closer together. During ABA sessions, children are taught tasks. They are expected to perform specific behaviors to receive the reward in a Skinnerian approach. They are drilled over and over often for long hours. Rewards often come in the form of candy or other treats. Children perform tasks to receive the reward. ABA uses a very rigid program. The comfort or current demeanor of the child is not taken into account in the development of the program. Studies have shown that children can make significant gains, but maintaining the gains was a problem.
A good PLAY therapist will probably set out a variety of toys that a child might be interested in and allow them to decide if anything would be something they would want to interact with. If the child doesn't respond, the therapist could use something else to try to interest the child. Bubble blowing is often popular and successful. Kids also really like toys that do something, like make sounds, vibrate, or have lights. They may like toys that they can run back and forth repetitively. The therapist will try to work on taking turns, sharing, and communication. These are the early foundations of social skills. As the child advances in their social skills, other children and possibly adults can be brought in to play. The therapist introduces the concept of pretending. They eventually try to introduce ideas, feelings, and problem-solving. They try to make the interactions fun for the child and not a chore.
Applied Behavioral Analysis can achieve some results in making the behavior of an autistic child more manageable, but its methods and quality of results leave much to be desired. ABA supporters state that the method has been around for more than 50 years and dates back to Skinner, who performed animal experiments, showing that food rewards lead to behavior changes. “This is accepted by everyone who wants to train their dog to ‘go' outside, but we are not so inclined to want to believe the same of ourselves. Part of the problem is that people do respond to a broad range of reinforcements…” (Saffran) What happens when there is no treat or a life situation calls for a task that is not in the regiment and has not been trained for? How do you transfer training in a very controlled environment to use in the natural environment of the child?
In the 50 years that ABA has been around, the program has pretty much not changed. However, the awareness and understanding of autism has evolved greatly in this same time period. Fifty years ago, children with autism were routinely diagnosed with childhood psychosis and institutionalized. Although the cause for autism is still not 100% known, the treatments must be fluid in order to fit in more with new developments of modern times in the way of research, genetics, etc. ABA is not flexible to these new developments.
Following is an example of the conversation during a session working on socialization and language between an autistic child and a teacher or other adult:
“Hi, Alex, are you excited about Christmas?
A : [no response]
Teacher: What are you going to do on Christmas?
A : I don't know.
Teacher: Are you going to get presents?
A : Yes.
Teacher: What else are you going to do?
A : [no response]
Teacher: Do you have a tree?
A : Yes.
Teacher: Who's going to bring presents on Christmas?
A : I don't know.
Teacher: Is it Santa Claus?
A : Yes.
Teacher : [smile] Thanks, Alex!
This is the child's half of the conversation:
"I don't know, Yes, Yes, I don't know, Yes." (Saffran)
“Getting a child to answer yes or no questions is helpful in the communication of the child, however, it is a far cry from having a child be able to have an actual conversation with someone in an engaging way.” (Saffran)
ABA uses a very rigid program, calling for 40 hours of intense drills and treatment every week attempting to achieve pre-prescribed outcomes, while PLAY sessions are prescribed for 15-20 hours per week. Due to the long hours of ABA and the ability for the child to endure these kinds of hours, children almost always do not go to school. PLAY sees school as an important part of beginning to get the child used to peers and social interactions and situations as well as the opportunity for formal education. It also gives them a chance to engage with others in their environment. With ABA , an outside provider provides the treatment to the child. With the PLAY project, the parents are at the center of treatment. The parents go through training to learn the methods for PLAY. A play consultant comes into the home for a 3-hour per month session in order to guide the parents in using the PLAY techniques and the parent administers the interventions 20-25 hours per week. The sessions are videotaped in order to provide the parents with feedback on their methods and for the consultants to give further recommendations.
The parents receive a video tape as a model for some possibilities for methods and interventions. The video tape is a composite of good PLAY interventions performed by other parents. The parents know their child the best, cueing in if their child is too tired to continue, etc. The parents are invested in the program and the treatment by being the ones who are working with the child and trying to engage the child. The parents want the child to interact with them more than anyone else does. They want the child to interact rather than just “perform certain behaviors,” although some parents who choose ABA would rather have behaviors performed or unacceptable behaviors extinguished than have the status quo. In PLAY, the parents seek to build interactive relationships such as taking turns, sharing, and engaging in two-way conversation, as well as building trust.
One of the most fundamental and crucial differences in these two programs for working families today is the cost and funding. The cost for an ABA worker averages 70 to 80 dollars per hour. At the rate of 20-40 hours per week, preferably for 40 hours per week, this is very intense treatment. This is to reinforce the desired behaviors and eliminate the undesirable behaviors by hours of repetition. With occasional time off due to vacations, family needs, etc., it does not take long to devastate a family's resources. This can be a total cost of over $50,000 per year. The interventions are recommended to be done for around 2-4 years ending when the child is approximately six years old. Families are put into the position of choosing between things that the other family members need and the cost of helping their autistic child. ABA is not covered by insurance and there is very little chance to obtain financial help for the program.
Due to the fact that ABA takes place for 40 hours per week, the child can al most never attend regular school sessions and handle ABA training. It is very difficult for a child, often a young child as early intervention is most effective, to endure this many hours of treatment. Not going to school is considered a great loss by many people. In the school setting, children can begin to get used to being around their peers, even if it is for short time periods. The opportunity for formal education is missed. It gives the child a chance to engage with others and get used to a new environment.
Many people feel very strongly against ABA , including feeling that if a child has gone through ABA , it can make attempts at treatment by other methods, such as PLAY, less successful. Some comments I have read about ABA have likened the child to “a trained seal”. I have seen comments in my research stating that denying the child the opportunity to get sensory input, for example by flapping, is akin to denying a prisoner of war of sleep. These behaviors by the autistic child are self-soothing. Hand-flapping has been described as being soothing to the child because it lets them know where their hands are in relation to the rest of their body. The ABA focus is on eliminating “bad or undesirable behaviors”, while other methods such as PLAY focus on engaging the child in the world society lives in and feels that self-soothing behaviors will go away naturally as the child has a new-found ability to interact with others. Although ABA can produce some behavior changes in an autistic child, its methods and effects can be very undesirable.
With PLAY, the parents attend a one-day workshop. They are further trained and mentored by the PLAY consultants during a three-hour per month sessions for a yearly cost of about $3,500.00. Parents are asked to commit to a year in the PLAY project. Some parents opt to continue in training in the project for an additional year, although most do not. They feel that they have been fully prepared to take on task of working to engage their children on their own, sometimes supplementing with programs such as ASD swim programs, etc. As you can see, the difference in cost is dramatic. The savings for a child with pervasive developmental disorder, a disorder on the autism spectrum, who achieves normal functioning can be up to 1.5 million dollars.
Another, more controversial treatment that parents have tried is called chelation.
In simple terms, chelation is a chemical compound delivered in IV or pill form that is used to bond with and clears toxic metals from the blood. The interest in chelation sparked from the theories that autism is caused by vaccine sensitivity, specifically the MMR vaccine. This was based on the fact that autism has increased since around the same time that the vaccine was started to be used. There is also a type of autism in which the child seems to develop normally at first and then regresses into autism. This regression seemed to start happening around the time that children would be receiving the vaccine. So, people started to associate autism and blame it on the vaccines. This seems likely to be a coincidence. “Several major studies have found NO connection between the vaccine and autism, however. The American Academy of Pediatric and the Center for Disease Control and Prevention report that there is no proven link between autism and the MMR vaccine.” (“Autism Information”) Genetic factors seem to be important and are looked at much more seriously as at least a largely contributing factor to the incidence of autism. The increase in numbers of autistic children is likely to be attributed to several factors. New standardized diagnostic tools are being used. Physicians are being more educated to earlier detection of autism and there are newer definitions of autism that include a wider range of children.
Chelation is a controversial therapy for autism in its own right. The testimony and proof that chelation is effective is largely anecdotal, based on personal belief that there have been results. Chelation have been blamed for deaths, among them, autistic children. “Some doctors have used chelation to treat autism, believing mercury or other heavy metals cause the condition's symptoms. However, medical evidence does not support that belief, and the drug is not approved for that use, CDC (Center for Disease Control) officials said. (“Autism Information”) Depleted levels of calcium after chelation can cause cardiac arrest. “In February 2005, a 2-year old girl with lead poisoning was treated with three chelating agents-one of them Endrate-and died at a hospital hours later from what an autopsy concluded was cardiac arrest due to depleted levels of calcium.” (Associated Press, 2006) “In August (2005), a 5-year old boy with autism died in Portersville, Pa., while receiving an infusion of Endrate in a physician's office. A coroner later ruled that the treatment killed the boy.” (Associated Press, 2006) An equally important risk in using a treatment like chelation is that if a treatment that does not work is used, valuable time is lost. It is crucial that children receive early intervention and if children are using treatments that do not work, they lose the opportunity to receive effective help and can find that this time cannot be regained once other treatment begins. The child can be denied the opportunity to advance as far as they otherwise could have.
The PLAY project could possibly be enhanced by an addition to the program. Although the project is child based and the interest of the child is paramount, the project could possibly go a little further with higher functioning autistic children. In the 1970's, Robert Wilson, a playwright and stage director, directed a performance art project with an autistic young man, Christopher Knowles. Wilson was also once a therapist who felt that he, himself, had some degree of autism. The work was known as “The Life and Times of Joseph Stalin” in 1973.
During this time period of Robert Wilson's career, he often chose to work with brain damage or problems of communication. Wilson felt that if he could let the deaf or brain damaged person show their world and interact in it that there would then be an exchange where the disabled person would then interact in the “normal” world with others. “By letting the deaf or brain-damaged person know that they can “do their own world” and that the others will follow, Wilson made possible an exchange where the protagonist-patient finally says, “OK, now it's your turn to do your world and I'll follow.” (Schechner) Robert Wilson would use the game of follow the leader, mirror exercises, and ask people to pick up on the rhythms and movements of others in the group.
“When working with Knowles on Stalin, other performers followed him, imitated him, played with him on his own terms: in the next of his experiences, people began to come out, showing idiosyncratic aspects of their own personalities. The gap between them and Knowles, and between each other, both grew and diminished. Paradoxically, these deeply private worlds proved “universal”, a widely shared repertory of actions, many based on recognizable versions/distortions of ordinary experience slowed down or exaggerated. Individuals showed each other fantasies they would usually hide or trash as “unacceptable”. In the actions Wilson received from the performers he worked with, the private, the social, and the species-wide converged. Breaking away from the idea of a normative, single world-view, Wilson opened the possibilities of multiple worlds coexisting and interacting in the same performance time/space.” (Schechner)
Wilson may have been decades ahead of his time. The PLAY project uses the interests of the autistic in the development of the program and treatment plans, especially on a day to day basis. However, the possibility of empowerment for the higher functioning autistic children by having people also enter their world as well as to bring them into ours is huge. Can you imagine the feelings of a child when the adult or siblings let them lead the way and do what they are doing and follow them? This may be a technique worth looking at adding to or enhancing in the PLAY project in order to empower the child.
The use of the PLAY project has a few unique challenges to overcome. The interventions making up the project are ultimately administered by the parents after training. This requires a great commitment by the parents both in being trained properly and in commitment to administering the program at home properly and on a daily basis.
Some parents are not comfortable with the responsibility of being the primary person responsible for their child's growth into the rest of the world. They would rather leave it up to a “professional”. The parent may have a demanding schedule already or other children, to care for. They may not feel that they can commit to the 20-25 hours per week that are required. However, it can be said that any kind of treatment or intervention would require a commitment to make it successful.
Even if a child would have to be transported to an outside treatment facility for therapy session with an “expert”, usually there is some kind of “homework” that a parent would need to engage in. There would also be time involved in transporting the child to the appointment and arranging schedules. In any kind of treatment, PLAY or otherwise, if the parents are not fully committed, the results will probably be less than they normally would be. Furthermore, if the parents could find themselves able to make the commitment to learn the PLAY project, they could save thousands of dollars which would benefit the entire household and hopefully reduce outside stressors on the family.
The incredibly remarkable feature that makes Easter Seals unique is that they offer financial assistance programs. One of the biggest hurdles that parents have to overcome in the treatment of autism is that most insurance companies will not cover treatment for autism and there is very little out there in the way of financial support. The philosophy of Easter Seals is that no child will be denied treatment due to the family's inability to pay. People of all income levels have an equal opportunity to receive quality treatment. Because Easter Seals is choosing to be the Autism Center for Excellence in Central Illinois , this is remarkable. At a time when most healthcare providers are running from autism treatment due to financial constraints or charging fees that are very difficult to pay with no insurance help, Easter Seals is stepping in to try to do their part to fill the gap in Central Illinois . Families in Central Illinois , for the first time, have a chance for effective early intervention treatment for Autism at a price that they can truly afford.
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