After Alex was diagnosed with autism eighteen years ago, I
began researching autism, hoping to find ways to make his life better and
easier. Indeed, the information I have gained through my investigating and
reading has led us to therapies and methods that have helped him. At the same
time, some articles I have read about autism, particularly those about how
children with autism have been mistreated, anger me and make me more determined
to protect Alex from those who might take advantage of his trusting nature.
This week three major stories about autism appeared in the media, and each
filled me with different emotions yet confirmed my need to seek more
information and to keep working as Alex’s advocate.
The first story came out of Jurupa Valley, California, where parents of special education high school students complained that their children were expected to sort garbage as part of their curriculum. [To read this report, please click here.] As part of a life skills class, special education students had to pick through the school’s trash cans looking for recyclables, reportedly to be sold to make money for the special education program. When a freshman student with autism came home and told his mother about this activity, she immediately complained to the administration and school board. Apparently the superintendent’s response was that sorting garbage was a standard part of the curriculum and that no complaints had been received before last week. Perhaps the lack of complaints was because these children could not communicate to their parents that they were expected to do degrading and disgusting and potentially dangerous work. Once parents found out that garbage picking was part of the special education curriculum, they angrily complained, a school board member whose child also has special needs concurred with their concerns, and the school district apologized. However, instead of cancelling this program, the administration is reviewing it. Maybe the superintendent needs to sort garbage himself so that he can see how wrong it is for special needs children to be forced to do this activity. Teachers, administrators, and therapists who work with special needs children should always ask themselves, “If this were my child, how would I want him/her treated?” I seriously doubt garbage picking is something they would want their children doing as a school-sanctioned activity passed off as a “functional skill.” This type of special education “curriculum” reminds me why we chose to home school Alex.
Another story that raised my ire this week focused upon the admission of a Centers for Disease Control and Prevention research scientist that data was manipulated to dismiss the potential relationship between vaccines and autism. [To read this report, please click here.] This whistleblower, later revealed as Dr. William Thompson, finally admitted that the 2003 CDC report showing no cause between autism and the MMR vaccine was essentially fraudulent. The research at that time actually revealed a much higher rate of autism among African-American boys who received the MMR shot before age three. However, pressure from public health organizations, including the CDC, forced scientists to eliminate data that questioned vaccine safety and potentially indicted vaccines as related to the rise in autism rates. By suppressing this information, more than ten years has been essentially wasted in trying to find causes and cures for autism. By protecting companies that manufacture vaccines, the government health agencies have failed to protect children whose lives have been impacted seriously and negatively by autism, and this is shameful.
Although these articles angered me that people who should know better failed to protect children with special needs, a third report that appeared this week gives me hope for Alex’s future. Widely reported in various media outlets, recently published research indicates a likely cause of autism and a potentially promising treatment. [To read this research, please click here.] Through brain studies done by American neuroscientists, people with autism were found to have more synapses, or connections between nerves, than typical people have. While all humans are born with more synapses than they need, usually these additional synapses are pruned over time. However, in people with autism, the mechanism to get rid of unnecessary synapses somehow fails. While autism may be seen as lacking something; the reality seems to be that autism means having too much, specifically, having too many neural connections, which probably leads to the sensory overload that often characterizes autism.
By using the immunosuppressant drug rapamycin in mice that display autistic behaviors, normal pruning of synapses was restored, and autistic behaviors decreased. While this research seems promising, scientists caution that this drug has side effects and may not work in people as it does in mice. However, researchers seem optimistic that pursuing this problem of too many synapses could lead to development of medications with fewer side effects that would help not only children with autism but also adults with autism, as well. Perhaps one good thing about the current epidemic rate of 1 in 68 children having autism is that drug companies would see profitability in researching and manufacturing these types of medications, knowing that a large population could benefit. Certainly, I’m hopeful that research continues to find ways to heal the parts of the nervous system that autism impairs, and this report fueled my optimism that one day Alex will be cured.
As I have studied and researched autism this week, I have also watched many videos of people, including my friends and family members, taking the ice bucket challenge for ALS, a devastating neurological disorder. While I appreciate their willingness to support ALS awareness by making videos and donations, I wish that people would also wholeheartedly support autism, another devastating neurological disorder, with the same widespread enthusiasm. Instead of dumping ice water over one’s head, perhaps walking over hot coals would be a good challenge to raise autism awareness. I know that many autism parents like me wouldn’t think twice about walking over hot coals or even through fire for our kids to help them. In the meantime, we just keep searching for answers, working to make our children’s lives the best they can be, and praying for a cure I truly believe will come in time.
“Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You.” Psalm 25:5
The first story came out of Jurupa Valley, California, where parents of special education high school students complained that their children were expected to sort garbage as part of their curriculum. [To read this report, please click here.] As part of a life skills class, special education students had to pick through the school’s trash cans looking for recyclables, reportedly to be sold to make money for the special education program. When a freshman student with autism came home and told his mother about this activity, she immediately complained to the administration and school board. Apparently the superintendent’s response was that sorting garbage was a standard part of the curriculum and that no complaints had been received before last week. Perhaps the lack of complaints was because these children could not communicate to their parents that they were expected to do degrading and disgusting and potentially dangerous work. Once parents found out that garbage picking was part of the special education curriculum, they angrily complained, a school board member whose child also has special needs concurred with their concerns, and the school district apologized. However, instead of cancelling this program, the administration is reviewing it. Maybe the superintendent needs to sort garbage himself so that he can see how wrong it is for special needs children to be forced to do this activity. Teachers, administrators, and therapists who work with special needs children should always ask themselves, “If this were my child, how would I want him/her treated?” I seriously doubt garbage picking is something they would want their children doing as a school-sanctioned activity passed off as a “functional skill.” This type of special education “curriculum” reminds me why we chose to home school Alex.
Another story that raised my ire this week focused upon the admission of a Centers for Disease Control and Prevention research scientist that data was manipulated to dismiss the potential relationship between vaccines and autism. [To read this report, please click here.] This whistleblower, later revealed as Dr. William Thompson, finally admitted that the 2003 CDC report showing no cause between autism and the MMR vaccine was essentially fraudulent. The research at that time actually revealed a much higher rate of autism among African-American boys who received the MMR shot before age three. However, pressure from public health organizations, including the CDC, forced scientists to eliminate data that questioned vaccine safety and potentially indicted vaccines as related to the rise in autism rates. By suppressing this information, more than ten years has been essentially wasted in trying to find causes and cures for autism. By protecting companies that manufacture vaccines, the government health agencies have failed to protect children whose lives have been impacted seriously and negatively by autism, and this is shameful.
Although these articles angered me that people who should know better failed to protect children with special needs, a third report that appeared this week gives me hope for Alex’s future. Widely reported in various media outlets, recently published research indicates a likely cause of autism and a potentially promising treatment. [To read this research, please click here.] Through brain studies done by American neuroscientists, people with autism were found to have more synapses, or connections between nerves, than typical people have. While all humans are born with more synapses than they need, usually these additional synapses are pruned over time. However, in people with autism, the mechanism to get rid of unnecessary synapses somehow fails. While autism may be seen as lacking something; the reality seems to be that autism means having too much, specifically, having too many neural connections, which probably leads to the sensory overload that often characterizes autism.
By using the immunosuppressant drug rapamycin in mice that display autistic behaviors, normal pruning of synapses was restored, and autistic behaviors decreased. While this research seems promising, scientists caution that this drug has side effects and may not work in people as it does in mice. However, researchers seem optimistic that pursuing this problem of too many synapses could lead to development of medications with fewer side effects that would help not only children with autism but also adults with autism, as well. Perhaps one good thing about the current epidemic rate of 1 in 68 children having autism is that drug companies would see profitability in researching and manufacturing these types of medications, knowing that a large population could benefit. Certainly, I’m hopeful that research continues to find ways to heal the parts of the nervous system that autism impairs, and this report fueled my optimism that one day Alex will be cured.
As I have studied and researched autism this week, I have also watched many videos of people, including my friends and family members, taking the ice bucket challenge for ALS, a devastating neurological disorder. While I appreciate their willingness to support ALS awareness by making videos and donations, I wish that people would also wholeheartedly support autism, another devastating neurological disorder, with the same widespread enthusiasm. Instead of dumping ice water over one’s head, perhaps walking over hot coals would be a good challenge to raise autism awareness. I know that many autism parents like me wouldn’t think twice about walking over hot coals or even through fire for our kids to help them. In the meantime, we just keep searching for answers, working to make our children’s lives the best they can be, and praying for a cure I truly believe will come in time.
“Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You.” Psalm 25:5
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