As Scott finishes his last year of formal schooling, I think back to how our journey began in what used to be the small autism community. When Scott was little, around 3 years old, it seemed like we knew every other family with an autistic preschooler in Montgomery County. (Of course, that was back in the days when no one really liked to diagnose young children with the "A" word.)
"Cure" talk was big among parents in 1994, just like it is today. It was just the beginning of the "Cure Autism Now!" movement, the "Defeat Autism Now" movement, leading to Autism Speaks, Autism Awareness Month, Light it up Blue, Walk Now for Autism, etc etc. Those of us looking to help our children were faced with a series of methods, some promising "cure". I remember vividly going to a session with Dr. Lovaas at the Twinbrook Crowne Plaza, where he insisted that parents needed to do 40 hours/week in home programs, and it must be started before age 4, to receive any benefit from applied behavioral analysis training at all. Cures ranged from special diets, megavitamins, chelation therapy, auditory integration training, secretin, in-home Lovaas therapy, Son Rise therapy, and I can't remember what-all else. We didn't do any of it. We placed our hope and trust in a good solid education, and I think it paid off. Can't say he's "cured," though.
And of course, for there to be a "cure," there had to be a "cause." Thankfully, we moved away from the "refrigerator mother" theory. In short order we had the folks who claimed the MMR vaccine caused autism, then the people who blamed the thimerisol in other vaccines. Now, horror of horrors, there is a study out that blames women who were FAT during their pregnancies!
So, I've come to my own conclusion about what causes autism: IT'S JUST ONE OF THOSE THINGS. One of those random acts of fate. Unknowable by us non-scientists. If they ever figure it out, for sure, I'm sure they will let us know. In the meantime, how about we focus on the kids that are here now. Let's give them appropriate schooling, good health care, appropriate adult programming, employment, and housing options. But please, how about less talk on causes and cures and more focus on helping our children, adults, and families live a good, happy, productive and fulfilling life.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Wednesday, April 11, 2012
Tuesday, January 18, 2011
Improving Education for Students on the Autism Spectrum
Complete Tesimony by Staci Dadonna to the Maryland Commission on Autism
The Maryland Commission on Autism
Public Comment Presented on January 11, 2011
Good morning. My name is Staci Daddona. I am the mother of a ten-year-old boy with Asperger’s Syndrome, and the president of Partnership for Extraordinary Minds, a nonprofit in Montgomery County, Maryland dedicated to improving the educational experiences and outcomes of diploma-bound students on the autism spectrum. I appreciate the opportunity to speak to you today and I’d like to thank the Governor for his leadership in appointing the Commission, as well as all the members for their hard work on a complicated issue.
You’ve heard for more than a year, about myriad needs for individuals with autism. I recognize that the wish list is lengthy, but funding is scarce; however, I’m here to add to that wish list.
Nationally, autism dialogue is moving from early intervention to the lack of supports for adults across the autism spectrum, largely ignoring thirteen valuable years in between—the foundational years when most children are enrolled in public schools. I’m disheartened by the absence of a workgroup within this commission to identify needs and goals specifically for public education. The assumption seems to be that whatever is being done is sufficient, and that a crisis appears when the students age out of the public education system at 21.
What can/should schools be doing to make the experiences and outcomes better for students on the autism spectrum?
1. The definition of what constitutes an appropriate education must go beyond academics for these children, based on research about the core deficits including social communication and relationship development, emotional regulation, cognitive flexibility, and executive functioning. How well these deficits are remediated will have as profound an impact (if not more) on the independence of adults with autism as their academic work. And while the amount of remediation possible will be unique to each individual, these are known deficits across the spectrum and must be considered for all students on the spectrum, though to varying degrees.
Of course, school systems are required by law to provide children with special needs a “free appropriate public education... designed to meet their unique needs and prepare them for further education, employment and independent living.” But the federal courts won’t or can’t define more clearly what is "appropriate," and so it continues to be argued. And while the federal courts may be mired on the issue, states have more latitude to define it.
2. School systems must develop mandatory training for principals, teachers and staff to understand the entire spectrum of autism disorders, including PDD-NOS and Asperger’s Syndrome. This is especially important given the national mandate for inclusion. Comprehensive research has been available for more than 10 years. Additionally, systems must be required to support their principals, teachers, and staff to understand and use the research to develop relevant, timely training. An excellent starting point is the report completed in 2001 by the National Research Council: Educating Children with Autism, available free online at the National Academies Press website.
Autism is a complex and variable disorder that can look like many other diagnoses, but it requires targeted instruction and intervention strategies to appropriately address the core deficits. When school staff use ineffective strategies, they do so to the emotional and functional detriment of the child. Staff need to understand and appreciate the amount of emotional energy required by these children to merely attend to instruction in an environment that is highly stressful to them.
3. School systems need well-trained support teams that can accurately identify students across the autism spectrum and respond in a timely manner when a child’s emotional and behavioral challenges begin to consistently disrupt their education.
There is so much more to educating our children than consequencing inappropriate behavior, but this is often the only tool teachers have in their toolbox. All staff would benefit from training in positive behavior supports to directly teach students appropriate coping strategies.
4. School systems must be held accountable. How can a public system know whether its programs are effective if they are never objectively evaluated? Using available research, determine which criteria will be used to evaluate the success of students on the autism spectrum and require periodic evaluations. System-wide evaluations will help determine which staff are effective and why so their efforts can be replicated.
In conclusion, I’d like to quote State Superintendent of Schools, Nancy Grasmick, who said in a March 2010 press release announcing autism awareness month, "Early intervention and educational services are key to helping children with autism. By putting a spotlight on the disorder, we believe that more parents and families will find the resources they need." In order for families to find the resources, they first need to exist, and children across the spectrum, including those with Asperger’s Syndrome, need to be allowed to access them. Thank you.
To learn more about the Partnership for Extraordinary Minds, CLICK HERE.
The Maryland Commission on Autism
Public Comment Presented on January 11, 2011
Good morning. My name is Staci Daddona. I am the mother of a ten-year-old boy with Asperger’s Syndrome, and the president of Partnership for Extraordinary Minds, a nonprofit in Montgomery County, Maryland dedicated to improving the educational experiences and outcomes of diploma-bound students on the autism spectrum. I appreciate the opportunity to speak to you today and I’d like to thank the Governor for his leadership in appointing the Commission, as well as all the members for their hard work on a complicated issue.
You’ve heard for more than a year, about myriad needs for individuals with autism. I recognize that the wish list is lengthy, but funding is scarce; however, I’m here to add to that wish list.
Nationally, autism dialogue is moving from early intervention to the lack of supports for adults across the autism spectrum, largely ignoring thirteen valuable years in between—the foundational years when most children are enrolled in public schools. I’m disheartened by the absence of a workgroup within this commission to identify needs and goals specifically for public education. The assumption seems to be that whatever is being done is sufficient, and that a crisis appears when the students age out of the public education system at 21.
What can/should schools be doing to make the experiences and outcomes better for students on the autism spectrum?
1. The definition of what constitutes an appropriate education must go beyond academics for these children, based on research about the core deficits including social communication and relationship development, emotional regulation, cognitive flexibility, and executive functioning. How well these deficits are remediated will have as profound an impact (if not more) on the independence of adults with autism as their academic work. And while the amount of remediation possible will be unique to each individual, these are known deficits across the spectrum and must be considered for all students on the spectrum, though to varying degrees.
Of course, school systems are required by law to provide children with special needs a “free appropriate public education... designed to meet their unique needs and prepare them for further education, employment and independent living.” But the federal courts won’t or can’t define more clearly what is "appropriate," and so it continues to be argued. And while the federal courts may be mired on the issue, states have more latitude to define it.
2. School systems must develop mandatory training for principals, teachers and staff to understand the entire spectrum of autism disorders, including PDD-NOS and Asperger’s Syndrome. This is especially important given the national mandate for inclusion. Comprehensive research has been available for more than 10 years. Additionally, systems must be required to support their principals, teachers, and staff to understand and use the research to develop relevant, timely training. An excellent starting point is the report completed in 2001 by the National Research Council: Educating Children with Autism, available free online at the National Academies Press website.
Autism is a complex and variable disorder that can look like many other diagnoses, but it requires targeted instruction and intervention strategies to appropriately address the core deficits. When school staff use ineffective strategies, they do so to the emotional and functional detriment of the child. Staff need to understand and appreciate the amount of emotional energy required by these children to merely attend to instruction in an environment that is highly stressful to them.
3. School systems need well-trained support teams that can accurately identify students across the autism spectrum and respond in a timely manner when a child’s emotional and behavioral challenges begin to consistently disrupt their education.
There is so much more to educating our children than consequencing inappropriate behavior, but this is often the only tool teachers have in their toolbox. All staff would benefit from training in positive behavior supports to directly teach students appropriate coping strategies.
4. School systems must be held accountable. How can a public system know whether its programs are effective if they are never objectively evaluated? Using available research, determine which criteria will be used to evaluate the success of students on the autism spectrum and require periodic evaluations. System-wide evaluations will help determine which staff are effective and why so their efforts can be replicated.
In conclusion, I’d like to quote State Superintendent of Schools, Nancy Grasmick, who said in a March 2010 press release announcing autism awareness month, "Early intervention and educational services are key to helping children with autism. By putting a spotlight on the disorder, we believe that more parents and families will find the resources they need." In order for families to find the resources, they first need to exist, and children across the spectrum, including those with Asperger’s Syndrome, need to be allowed to access them. Thank you.
To learn more about the Partnership for Extraordinary Minds, CLICK HERE.
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