Finding Balance
By Barry M. Prizant, Ph.D.
Editor's note: The opinions expressed herein are those of the author exclusively.
By Barry M. Prizant, Ph.D.
Editor's note: The opinions expressed herein are those of the author exclusively.
The following is from the keynote address at the Southern New England Walk Now for Autism Kick-off Luncheon.
Thanks to the New England Autism Speaks walk committee for this invitation to speak with you at the kick-off luncheon for the fall walk.
When I received the invitation to speak, I thought, “How can I present a talk that is relevant to the event of the annual walk for autism, and provide some meaningful discussion about the crucial issues faced by parents, families, practitioners, researchers, and individuals with autism - the ultimate beneficiaries of this walk?”
Then it came to me: Balance is the one necessary skill for participating successfully in a walk for autism – to participate successfully, one must be able to maintain appropriate posture and balance. Finding balance has also proven to be one of the great challenges faced by parents, families, practitioners and researchers in autism, and indeed, individuals with autism. Let's reflect on this theme as we explore the issue of “Finding balance”. No quick answers or solutions here. Much of what I will be discussing comes from both research, as well as my 40 years of experience working with persons with autism and their families, which began as a teenager when I was a counselor in summer camps.
I. Families Finding Balance
Many aspects of the experience of having a child or family member with autism relates to the challenges of finding balance. Research on the major stressors on families indicates that social isolation, the feeling that few people understand, isolation from community events and everyday activities, and for some families, growing isolation from family members and even friends and relatives, all leads to a feeling of dysschrony in life – a profound lack of balance. Finding balance in family life may be difficult, even regarding very basic issues. Some examples: How do I find time for my child or children who do not have special needs; how much risk should we take by trying to go to places and do things that most other families do? Do we dare to try to take a vacation, which by its very nature is a break in routine, with new and different experiences, when our child so needs routine and predictability. How do I find time for my husband, wife or partner? Probably one of the greatest challenges to balance experienced by family members is the feeling of a lack of control, and fear and uncertainty regarding the future.
II. Treatment and education
Twenty to thirty years ago, it was not uncommon for parents to lament the fact that there was so little information for parents about autism, such as treatment options, support groups, trained professionals in the field and so forth.
Today, the problem seems to be the reverse – there is an information explosion. Parents must try to maintain balance while navigating through the sea of treatments and the unlimited number of self-proclaimed experts, many of whom claim that he or she has THE RIGHT APPROACH or THE RIGHT ANSWERS to their child's challenges. Parents must wade through the options hoping to achieve some balance – a “program” that makes the most sense for their child without exhausting the emotional and fiscal resources of the family. How much attention should be given to the child's education compared to biomedical needs and nutritional needs? For children and adolescents in school programs, the question becomes how to balance academics vs. self-help and other functional skills vs. social relationships and leisure skills. Should a child's program shift to a greater emphasis on vocational and independent life skills, and if so, when? What is the appropriate balance?
For professional educators and therapists, how much should we fall in line and “teach to the academic curriculum” so that our students may pass state proficiency exams, knowing, in many cases, that what is being taught has little relevance to the student's current and future life needs. For parents who have reservations about the quality of their child's school program, how does one strike a balance between expressing concern and working towards change within school systems, yet maintain positive, trusting and collaborative relationships with those who may have the longest and most enduring relationship with their child outside of the family.
Finally, how do families and practitioners strike the balance between addressing an individual's limitations and challenges related to autism, yet appreciate and embrace the fact that any individual has relative strengths and abilities? How do we go about identifying and building strengths and talents rather than simply trying to remediate weaknesses?
In collaboration with parents, persons with autism and professionals, I have just completed a documentary film entitled Autism: Communicating in Another Way that addresses this very issue of identifying and building strengths and talents. In making this film, we struggled with striking the balance between the need to identify and build strengths and talents for persons with autism, while not “sugar-coating” autism, and the challenges autism engenders for families and individuals with autism. I'll be sharing a short clip from our film in a few minutes.
III. Fundraising – how do we allocate the funds we raise
More central to the very purpose of the Autism Speaks Walk, is the issue of finding balance in how funds raised in fundraising events are used. Put simply, what is the appropriate balance in funding research vs. funding services to directly support families and services for children, adolescents and adults with autism?
More specifically, for research, what proportion of dollars should go to finding the causes of autism (biomedical, genetic) as opposed to research into treatment (educational, biomedical, nutritional) and so forth? (It still strikes me as astonishing that some still talk about finding THE CAUSE, when we have known for the past 35 years that there are most likely multiple causes).
Another area of great challenge is finding the balance between funding research or services directed towards individuals at different stages in life. It is no secret that research and treatment dollars in autism have been directed disproportionately towards children, most often young children, for the past 3 decades, compared to adolescents and adults. We must find a better balance. Soon, the young children will be adolescents and adults, after all.
Finally, there has been passionate discussion, some directed to Autism Speaks, about finding the balance in using funds for national initiatives as opposed to grass roots organizations that provide supports and services to families throughout the country. I have worked closely with one such organization for almost 20 years, Community Autism Resources in Swansea MA, and have seen their struggles in maintaining the funding stream that supports their very fine programs for local professionals and families. We cannot allow these grass roots efforts to waste away. National organizations such as Autism Speaks serve important purposes to educate the general public, lobby to change policy and raise awareness, but grass roots organizations serve important purposes of guiding and supporting families now.
In finding balance, I would like to suggest that we do not take an “either/or” approach, but an “and/also” in all these areas of funding. In recognition of this need, Autism Speaks has recently established a Family Services Committee that will allocate funds for direct services to families and to local agencies serving families. This is certainly an important first step in the quest to achieve balance.
IV. Finding Balance in Attitudes and beliefs about Autism
Another area that has become an issue of great controversy, most certainly in need of a more balanced perspective, is our attitudes and beliefs about autism, and the experience of persons with autism. In our documentary film, we begin with two quotes:
The first is from the book Evidence of Harm, by David Kirby. In the foreword of his book, Mr. Kirby states “Autism is a hellish, lost world”. The second quote is from the mother of a 9 year old son with autism, posted on her website: “Some call it autism; others call it despair and sorrow. I happen to call it hope, beauty and fascination”. How do we come to terms with this great divide? Surely there is a need for common ground and balance.
Is autism a “disease” that needs to be eradicated, or is it a different way to experience the world? To be clear, this not about minimizing the challenges experienced by families and persons with autism, but it is about how we make meaning out of the reality of autism in our lives. I have a number of adult friends with autism who are able to talk about their experience. Some say they would want to be cured if a cure was available, while others say their autism is so much a part of the essence of who they are as people, that if they were “cured”, they would be totally different people. Clearly, there is not a simple right or wrong answer, but the schism that exists in the community of autism has unfortunately created, at times, a culture of divisiveness and mudslinging, rather than a helpful dialogue to promote greater understanding and acceptance of different positions. Somehow, we must strike a balance.
A related issue is how families cope, adapt and grow. Is autism simply a tragedy for the family, or is it an opportunity for all of us to grow - parents, family members and practitioners. Is it a disease to be cured, or a difference in development that creates many challenges, but for many parents, does not change their appreciation for their child, as a child who happens to have autism. In my career, I have heard many parents communicate the following message: If we could go back and change our lives, we would not wish that our child be “normal”. We have grown in so many ways and have been blessed with the most wonderful people who have come into our lives.” This is not to say that parents who feel this way have a more “noble” position, just a different experience from families who strive to cure or “recover” their child from autism.
As I began this talk, I stated that I would not be espousing quick fixes – goodness knows the field of autism is inundated with quick answers and unsubstantiated promises. I have tried to share the challenges we all face, so I hope my talk provides some food for thought that will nourish you on your walk.
I wish you all success in finding the balance in your family and work lives.
Let's all encourage and support Autism Speaks in their incredible efforts to find the proper balance in supporting individuals with autism and their families, but let's not shy away from providing constructive suggestions to help them stay on a balanced course.
I'd like to conclude with a quote from the great prophet Woody Allen –
“80% of success is just showing up."
So please turn to your neighbor and shake his or her hand and say, “Thanks for caring and for showing up. See you at the walk!"
Dr. Barry Prizant is the Director of Childhood Communication Services and an Adjunct Professor in the Center for the Study of Human Development, Brown University. Barry has more than 30 years experience as researcher and international consultant to children and adults with ASD, and is a co-author of the SCERTS Model (Prizant, Wetherby, Rubin, Laurent & Rydell, 2006 – www.SCERTS.com). In 2005, Barry received the Princeton University-Eden Foundation Career Award “for improving the quality of life for individuals with autism.". For further information about the film, or Barry's work, go to www.barryprizant.com , or contact Barry at DrPrizant@aol.com .
When I received the invitation to speak, I thought, “How can I present a talk that is relevant to the event of the annual walk for autism, and provide some meaningful discussion about the crucial issues faced by parents, families, practitioners, researchers, and individuals with autism - the ultimate beneficiaries of this walk?”
Then it came to me: Balance is the one necessary skill for participating successfully in a walk for autism – to participate successfully, one must be able to maintain appropriate posture and balance. Finding balance has also proven to be one of the great challenges faced by parents, families, practitioners and researchers in autism, and indeed, individuals with autism. Let's reflect on this theme as we explore the issue of “Finding balance”. No quick answers or solutions here. Much of what I will be discussing comes from both research, as well as my 40 years of experience working with persons with autism and their families, which began as a teenager when I was a counselor in summer camps.
I. Families Finding Balance
Many aspects of the experience of having a child or family member with autism relates to the challenges of finding balance. Research on the major stressors on families indicates that social isolation, the feeling that few people understand, isolation from community events and everyday activities, and for some families, growing isolation from family members and even friends and relatives, all leads to a feeling of dysschrony in life – a profound lack of balance. Finding balance in family life may be difficult, even regarding very basic issues. Some examples: How do I find time for my child or children who do not have special needs; how much risk should we take by trying to go to places and do things that most other families do? Do we dare to try to take a vacation, which by its very nature is a break in routine, with new and different experiences, when our child so needs routine and predictability. How do I find time for my husband, wife or partner? Probably one of the greatest challenges to balance experienced by family members is the feeling of a lack of control, and fear and uncertainty regarding the future.
II. Treatment and education
Twenty to thirty years ago, it was not uncommon for parents to lament the fact that there was so little information for parents about autism, such as treatment options, support groups, trained professionals in the field and so forth.
Today, the problem seems to be the reverse – there is an information explosion. Parents must try to maintain balance while navigating through the sea of treatments and the unlimited number of self-proclaimed experts, many of whom claim that he or she has THE RIGHT APPROACH or THE RIGHT ANSWERS to their child's challenges. Parents must wade through the options hoping to achieve some balance – a “program” that makes the most sense for their child without exhausting the emotional and fiscal resources of the family. How much attention should be given to the child's education compared to biomedical needs and nutritional needs? For children and adolescents in school programs, the question becomes how to balance academics vs. self-help and other functional skills vs. social relationships and leisure skills. Should a child's program shift to a greater emphasis on vocational and independent life skills, and if so, when? What is the appropriate balance?
For professional educators and therapists, how much should we fall in line and “teach to the academic curriculum” so that our students may pass state proficiency exams, knowing, in many cases, that what is being taught has little relevance to the student's current and future life needs. For parents who have reservations about the quality of their child's school program, how does one strike a balance between expressing concern and working towards change within school systems, yet maintain positive, trusting and collaborative relationships with those who may have the longest and most enduring relationship with their child outside of the family.
Finally, how do families and practitioners strike the balance between addressing an individual's limitations and challenges related to autism, yet appreciate and embrace the fact that any individual has relative strengths and abilities? How do we go about identifying and building strengths and talents rather than simply trying to remediate weaknesses?
In collaboration with parents, persons with autism and professionals, I have just completed a documentary film entitled Autism: Communicating in Another Way that addresses this very issue of identifying and building strengths and talents. In making this film, we struggled with striking the balance between the need to identify and build strengths and talents for persons with autism, while not “sugar-coating” autism, and the challenges autism engenders for families and individuals with autism. I'll be sharing a short clip from our film in a few minutes.
III. Fundraising – how do we allocate the funds we raise
More central to the very purpose of the Autism Speaks Walk, is the issue of finding balance in how funds raised in fundraising events are used. Put simply, what is the appropriate balance in funding research vs. funding services to directly support families and services for children, adolescents and adults with autism?
More specifically, for research, what proportion of dollars should go to finding the causes of autism (biomedical, genetic) as opposed to research into treatment (educational, biomedical, nutritional) and so forth? (It still strikes me as astonishing that some still talk about finding THE CAUSE, when we have known for the past 35 years that there are most likely multiple causes).
Another area of great challenge is finding the balance between funding research or services directed towards individuals at different stages in life. It is no secret that research and treatment dollars in autism have been directed disproportionately towards children, most often young children, for the past 3 decades, compared to adolescents and adults. We must find a better balance. Soon, the young children will be adolescents and adults, after all.
Finally, there has been passionate discussion, some directed to Autism Speaks, about finding the balance in using funds for national initiatives as opposed to grass roots organizations that provide supports and services to families throughout the country. I have worked closely with one such organization for almost 20 years, Community Autism Resources in Swansea MA, and have seen their struggles in maintaining the funding stream that supports their very fine programs for local professionals and families. We cannot allow these grass roots efforts to waste away. National organizations such as Autism Speaks serve important purposes to educate the general public, lobby to change policy and raise awareness, but grass roots organizations serve important purposes of guiding and supporting families now.
In finding balance, I would like to suggest that we do not take an “either/or” approach, but an “and/also” in all these areas of funding. In recognition of this need, Autism Speaks has recently established a Family Services Committee that will allocate funds for direct services to families and to local agencies serving families. This is certainly an important first step in the quest to achieve balance.
IV. Finding Balance in Attitudes and beliefs about Autism
Another area that has become an issue of great controversy, most certainly in need of a more balanced perspective, is our attitudes and beliefs about autism, and the experience of persons with autism. In our documentary film, we begin with two quotes:
The first is from the book Evidence of Harm, by David Kirby. In the foreword of his book, Mr. Kirby states “Autism is a hellish, lost world”. The second quote is from the mother of a 9 year old son with autism, posted on her website: “Some call it autism; others call it despair and sorrow. I happen to call it hope, beauty and fascination”. How do we come to terms with this great divide? Surely there is a need for common ground and balance.
Is autism a “disease” that needs to be eradicated, or is it a different way to experience the world? To be clear, this not about minimizing the challenges experienced by families and persons with autism, but it is about how we make meaning out of the reality of autism in our lives. I have a number of adult friends with autism who are able to talk about their experience. Some say they would want to be cured if a cure was available, while others say their autism is so much a part of the essence of who they are as people, that if they were “cured”, they would be totally different people. Clearly, there is not a simple right or wrong answer, but the schism that exists in the community of autism has unfortunately created, at times, a culture of divisiveness and mudslinging, rather than a helpful dialogue to promote greater understanding and acceptance of different positions. Somehow, we must strike a balance.
A related issue is how families cope, adapt and grow. Is autism simply a tragedy for the family, or is it an opportunity for all of us to grow - parents, family members and practitioners. Is it a disease to be cured, or a difference in development that creates many challenges, but for many parents, does not change their appreciation for their child, as a child who happens to have autism. In my career, I have heard many parents communicate the following message: If we could go back and change our lives, we would not wish that our child be “normal”. We have grown in so many ways and have been blessed with the most wonderful people who have come into our lives.” This is not to say that parents who feel this way have a more “noble” position, just a different experience from families who strive to cure or “recover” their child from autism.
As I began this talk, I stated that I would not be espousing quick fixes – goodness knows the field of autism is inundated with quick answers and unsubstantiated promises. I have tried to share the challenges we all face, so I hope my talk provides some food for thought that will nourish you on your walk.
I wish you all success in finding the balance in your family and work lives.
Let's all encourage and support Autism Speaks in their incredible efforts to find the proper balance in supporting individuals with autism and their families, but let's not shy away from providing constructive suggestions to help them stay on a balanced course.
I'd like to conclude with a quote from the great prophet Woody Allen –
“80% of success is just showing up."
So please turn to your neighbor and shake his or her hand and say, “Thanks for caring and for showing up. See you at the walk!"
Dr. Barry Prizant is the Director of Childhood Communication Services and an Adjunct Professor in the Center for the Study of Human Development, Brown University. Barry has more than 30 years experience as researcher and international consultant to children and adults with ASD, and is a co-author of the SCERTS Model (Prizant, Wetherby, Rubin, Laurent & Rydell, 2006 – www.SCERTS.com). In 2005, Barry received the Princeton University-Eden Foundation Career Award “for improving the quality of life for individuals with autism.". For further information about the film, or Barry's work, go to www.barryprizant.com , or contact Barry at DrPrizant@aol.com .
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