I’m sorry to have to provide an upsetting update from my previous article, The State vs. Autism Families. Nine-year-old Ayn Van Dyk, who was taken from her home after being safely recovered after a wandering incident, is still in the hands of Canadian authorities. The tragedy began in Abbotsford, British Columbia on June 16th, when the Ministry of Children and Family Development came calling after Ayn was found safely playing in a neighbor’s pool.
"After 18 days of no contact from the ministry as per Ayn’s well being or whereabouts, I received a call from a worker at the MCFD on Monday July 4, who informed me that Ayn had been crying for the 18 days and would I please bring in a picture of myself to help calm here down. I agreed and went in to the ministry office where I spoke with the worker, to express my concerns over Ayn’s well being, her being medicated, access to Ayn, and receiving written reports as frequently as possible. I was informed at that time that Ayn was now out of the hospital and in a foster home. Our next meeting was on Wednesday July 6, where I was informed that Ayn was to be returned to the hospital for a much longer 6 week psych evaluation, there is a wait list and it could take anywhere from 2-8 weeks for her to get that evaluation. She has been drugged against my explicit, reasoned and repeated wishes, with Risperdal, a drug with many known side effects, some of which are fatal."
Derek is a single father to Ayn and her two older brothers. He has totally devoted himself to her to well being, engaging himself in every aspect of parenting a child with autism. This whole ordeal was brought on by a moment’s inattention during which she disappeared from their backyard enclosed with a six foot high fence and is every parent’s worst nightmare.
By logical extension, every time a wandering incident ends in a child’s death, parents should be charged with negligent homicide. And every time it ends
well, the child should be removed from the home. The fact that this poor little girl can’t see her daddy and is being drugged with anti-psychotics is outrageous and an abomination.
If you’d like to lend your voice to the campaign to bring Ayn home, there are several options, including signing an online petition posted here.
article decrying the fact that Mississippi requires no autism training for its special education teachers struck me as hardly newsworthy. The
reality is that special education teacher requirements vary drastically from state-to-state and when it comes to autism, they are abysmal. As far as I could
tell from my research (and I would love to be wrong), only six states in the entire country require teachers who are responsible for educating children with
autism to know anything about it. Michigan led the way in the early 80′s, followed by Delaware, West Virginia, Nevada, Florida and California. Florida and
California’s autism endorsement requirements will be fully effective in 2011.
Stated benefits of requiring an autism endorsement for those who teach children with autism are many and obvious:
Most states reported having a more qualified, better prepared workforce
for meeting the academic and social needs of students with autism.
Coursework leading to the autism endorsement has exposed teachers to a wide range of strategies for working with students with autism.
The endorsement has led to a heightened level of awareness among educators regarding the unique characteristics associated with autism.
IHE programs’ focus on behavior analysis and functional communication has benefited all students with disabilities, not just students with autism.
Some speculate that personnel preparation associated with the autism endorsement may result in keeping more students with autism in general
Working with children with autism spectrum disorders is physically, mentally and emotionally exhausting. Their parents are often very well
informed about autism and may know more than the professionals working with their children, who may have had only general training. Parental
expectations add an additional layer of stress. These factors can lead to staff turnover and shortages.
The one drawback noted is that the autism endorsement can oversimplify the complex needs of educating students on the autism spectrum, yet it is
universally agreed that the advantages far outweigh this concern. It seems that the endorsement, coupled with continuing education in autism, would be the best of all possible scenarios. Exemplary statewide programs do exist to provide training in autism for their teachers. These include Division TEACCH (North Carolina), Indiana Resource Center for Autism (IRCA), Pennsylvania Training & Technical Assistance Network (PaTTAN) and the Minnesota Autism Project.
In Seattle, there’s no dearth of special trainings for autism, but teachers aren’t asked to attend them. Fed up by the state of special education in the
Seattle School District, I once called a member of the school board to share with him my many ideas for improvement, such as having special education
teachers that actually know something about autism. I’ll never forget the shock in his voice when he exclaimed, "But that takes money!!" I replied
that they could at least supply teachers with a list of books and other resources that are available online and in the library. Cutting me off, he
served up a closing platitude that he "cares about special education," which only let me know that he actually doesn’t.
Around here, education is a numbers game. With the spiraling numbers of children on the autism spectrum, states are going to rue their neglect of the
issue and discover that being on the cutting edge of autism best practices is in the best interest of everyone involved.
Hyperbaric Oxygen Therapy (HBOT) is a form of therapy that involves breathing pure oxygen in a hyperbaric chamber. While originally designed to treat “the bends” in divers, its applications have expanded to include carbon monoxide poisoning, gangrene, osteomyelitis (acute bone pain) and now, autism. HBOT enhances blood flow to the brain, reduces inflammation and oxidative stress and mobilizes stem cells from the bone marrow. Deficits in all these areas have been identified in the onset of autism.
Each session in the chamber costs in the neighborhood of $100 and is not covered by insurance. The typical protocol for autism calls for breathing pure oxygen for sixty minutes at 1.3 to 1.5 ATA, which corresponds to a depth of ten to seventeen feet of seawater (FSW).
Reported benefits from the treatment include improvements in language, eye contact, socialization, appetite and digestion. Reduction in intestinal inflammation involving parasites and bacteria was also cited. Because many children with autism enjoy small, enclosed spaces, claustrophobia is rarely a problem for the child (although it could be for an accompanying adult).
Drawbacks may include initial earaches during the first session. And a freak accident occurred in Florida in 2009 in which a grandmother and her grandson died when their hyperbaric chamber exploded, shocking the nation and doing the reputation of HBOT for autism no favors.
Science is still lagging in their conclusions about HBOT for autism. A promising study of HBOT is somewhat marred by the fact that it was undertaken at the behest of business interests and fellow scientists found the structure of the investigation somewhat weak. Some doctors question whether the quality time spent in close quarters between accompanying adult and child is providing the real benefit and new studies must somehow take this factor into account.
More scientific testing is currently in the works to verify the glowing recommendations of parents of children with autism who have tried hyperbaric therapy and a growing list of medicos who also affirm its value.
As parents of children with autism, we are their best advocate and indeed, advocating for them becomes a full-time job in itself. In the best of all possible outcomes, our children will one day be able to advocate for themselves.
In a recent interview with Autism Hangout, clinical psychologist and author Dr. Sarita Freedman has identified three steps to achieving self-advocacy for those with autism.
The first is awareness. The child with autism becomes aware of their feelings and the feelings of others. They become adept at identifying sources of personal stress and developing strategies of self-regulation. Past experiences are able to be retrieved and utilized.
After this comes acceptance. They know and assimilate that they have autism. They don’t have to like it, but they do have to recognize it as a part of who they are.
Out of this grows self-advocacy as they feel empowered to disclose their autism and seek accommodations in school and the workplace that assist them in their daily lives.
In delineating this progression, Dr. Freeman has also identified a spectrum within the autism spectrum. Still, it’s not completely linear. My own sons with high-functioning autism have both accepted their autism. But one of them still struggles with self-regulation if his environment is not carefully crafted to be free of stress. He certainly shares with others that he has autism, but has not yet articulated what that means in terms of understanding him personally nor the accommodations he requires.
My other son’s progress is more of a straight line. He has by-and-large achieved awareness and acceptance, yet has never disclosed his condition to anyone. And at age 15, has never taken the initiative to approach his teachers for homework accommodations, despite being encouraged to do so for years. An extremely shy and private person, I don’t know that he ever will. While very bright, he is constantly besieged by his homework and never makes grades that mirror his true abilities. For him, technical school seems the best option so that he can pursue his special interest in electronics and jettison the stress of studying subjects that don’t pertain to his passion.
A book exists to help young adults on the autism spectrum explain their personal qualities, strengths, and difficulties to friends, teachers, employers and colleagues. Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum by Stephen Shore provides great advice that can help individuals with autism achieve their personal and employment goals. Even though my sons are fifteen, I’m going to buy a copy for them in hopes that it sparks something in them. Their level of independence as adults remains to be seen.
Of course, self-advocacy isn’t an achievable goal for every individual with autism. Not everyone can be the next Temple Grandin. Progress in awareness will be the life journey of some.
Last week, I had the pleasure of meeting a number of different people within the autism community at the Autism Society’s 42nd annual conference in Orlando, Florida. We attended as exhibitors to introduce a new line of autism jewelry that will help benefit autism awareness, with a portion of proceeds going towards various autism-related programs and services.
On the last day of the conference, I briefly met and spoke with Alex Plank, a 24-year-old advocate with Asperger’s Syndrome. Alex is the founder of Wrong Planet, a widely popular Web site for parents and individuals with Asperger’s, autism spectrum disorders and other neurological differences. He is also a filmmaker and in late 2009, released a short documentary piece entitled "autism reality."
I had not seen the film, but our meeting in Orlando prompted me to check it out and after viewing it, I came away impressed.
The 10-minute, interview-based film shows various segments of individuals talking about autism and their perceptions of it. Among those interviewed are
Dr. Temple Grandin and Alex’s parents, who talk about his growing up as a child on the autism spectrum and the struggles that accompanied his condition.
Part of Plank’s goal in directing and producing the film was to inject a new perspective into the autism debate and dispel the many misconceptions that are associated with the disorder.
This is an important film in which an autism spectrum disorder can be seen through the eyes of someone who actually has it, as opposed to parents,
Hollywood actors, researchers or educators. This first-person perspective on autism is a refreshing way to better understand the mind of an autistic and the
struggles they endure on a daily basis.
"autism reality" can be viewed in its entirety below.
The story of a ten-year-old boy with severe autism being abandoned at a hospital emergency room in Florida is unfortunately not an unusual one. More and more horror stories are surfacing as families with inadequate support systems crack under the strain of caring for a child with autism.
In this case, the father of the boy appeared at the hospital after identifying him from a news report. Apparently, the mother and father were recently separated and the mother, Amanda Mathe, was left to care for the son with autism and his two other siblings, while also enduring an eviction from their foreclosed home. Once located, Mathe claimed that she was “overwhelmed” and didn’t know what else to do.
The amazing aspect of this story is that the state is declining to press charges. Department of Children and Families (DCF) spokesman Mark Riordan explained, “Instead of looking at this like a child abuse or a criminal abandonment-kind of case, it’s one of those where we’re going to do everything we can to make sure the boy receives the services he requires and the parents receive the assistance and the help that they need at this point.”
Currently, the boy is in a foster home that specializes in caring for children with developmental disabilities as investigators are looking into whether or not he can live with the father. Both parents are allowed unsupervised visitation rights.
Florida declining to criminalize a parent’s desperate response to parenting a child with autism is a breath of fresh air. It’s hard to believe this news comes from the same state that placed an earnest and caring mom behind bars for her autism spectrum son’s unavoidable absences from school.
Helping and supporting the family is certainly commendable in lieu of further tearing them apart by incarcerating the mother. One cannot help but wish that a national consensus could be reached within the child protective and legal systems that makes this type of response coin of the realm instead of an anomaly.
In a sorry sequel to our previous story about a New York borough opposed to having a group home for young men with autism in their neighborhood, the non-profit seeking to establish the home has given up and plans to seek a new location. The involved agency, Quality Services for the Autism Community (QSAC) issued the following statement, “It’s unfortunate that there is community opposition to housing for vulnerable people, but that’s the reality in this situation."
Residents of Bellerose in Queens, NY cited concerns about the “potential danger” to children who go to school in the area and use of its school yard after hours. With another group home in the vicinity, they claimed a second one would constitute "oversaturation" of their neighborhood with group homes. Concerned about the quality of life in their community if these individuals with autism lived amongst them, they also feared the men would not be properly supervised.
Director of QSAC, Gary Maffei, countered that workers look after the residents at all times and their other group home six miles away has received zero complaints in its ten years of existence. Their organization works closely with the community to be good neighbors, running 10 other successful homes in Queens and western Long Island.
Many Bellerose residents had called their state representatives to voice their opposition to the home. Citizen complaints of oversaturation of group homes in
their area are subject to a statewide review process that normally takes many months, but the decision to vote against QSAC was fast-tracked and announced June 13.
In previous information of this situation, the fact that this proposed home would house a mere eight individuals was not included. This makes the hue and
cry against it all the more lamentable. The level of ignorance about autism is tragic and makes me once again aware that amongst everything else, autism is a civil rights issue. Our grown children with autism are neither criminals nor predators and to have valiant efforts to house them as adults thwarted by such
baseless fears is very sad indeed.
The grief of a child with autism, be it for a cherished pet, a grandparent or other close family member is very hard for a parent to experience. While most children openly cry and seek comfort for their loss, a child with autism will likely become more isolated than ever as they seek methods to block their intense and overpowering emotions.
Dr. Tony Attwood advises that you will see an intensification of typical autistic behaviors that will last for many months as the child feverishly works to keep his or her emotions at bay. Attwood points out that a child with autism is thrown not only by the loss of the individual, but the careening emotions of everyone around him and the disruption of the world as he or she knows it.
Modeling a child’s behavior and helping them appreciate why others are acting upset are essential. Explaining that “mommy is crying because she is very sad about grandpa dying and when people are sad they appreciate a hug," then praising the child when the hug is given goes a long way towards the child with autism navigating this new and treacherous terrain.
Of course, every child is going to react to loss in their own unique way. And losses can be great or small.
Social stories can help deal with a friend moving away, the end of a wonderful vacation and other pain that is inherent in being human. As parents, we can’t spare them as much as we’d like to and it’s difficult to even help them. I once read a poem by Kathy Pollitt in The New Yorker whose last line has stayed with me for years, “…my death is my own, it has nothing to do with you.”
Many parents of children on the autism spectrum are unable to find a successful place for them in the school system. Often, teachers and staff have little or no training in autism and treat our children’s symptoms as disciplinary problems rather than manifestations of sensory overload and anxiety. We may grow tired of being afraid when the phone rings, signaling yet another crisis at school. Perhaps we are plagued by that uneasy feeling that our child is falling through the cracks and not receiving the help they so desperately need. Maybe we feel that home is just a better environment for them than school.
Some parents opt for homeschooling, while others are driven to it. However, when taking on homeschooling a child with autism, it can be a daunting prospect.
Gratefully, a new website exists to provide guidance for parents homeschooling their child with autism. Autistic Homeschooling contains an abundance of information on topics including philosophies of homeschooling, homeschooling by
states and of course, a trove of potential curriculum.
Additionally, Khan Academy has a huge collection of
entertaining and informative videos on a myriad of topics and test preparation for standardized exams, all free of charge. Many universities are marketing online learning. For instance, Brigham Young University (BYU) has middle school through college classes online for credit as well as free courses. See if your school system partners with free online academies for homeschooling if you wish to remain within the system while keeping your child at home.
I have to homeschool my son through his remaining three years of high school with no help. The Seattle school system has a Homeschool Resource Center that is top-notch, but my son is considered too severely impaired to access the program. The catch-22 is that they have no appropriate placement for him in the classroom and no resources for him outside of it.
My strategy is to set credits aside and prepare him to pass the GED. Taking his area of interests and fashioning an independent study encompassing a variety of subjects from different standpoints is the most viable option I have of keeping him on track. I am also recruiting mentors from the academic community to challenge and inspire him.
Every child is different and every path is unique. It’s heartening that more guidance and resources are now being made available to parents as we make these critical decisions about our children’s education and future.
A new study is finally shifting the official discussion of the cause of autism from mainly heredity to a combination of genetic and environmental influences.
Researchers examined 192 pairs of identical and fraternal twins whose cases were drawn from California databases. At least one twin in each pair had classic autism and in many cases, the other twin also had classic autism or Asperger’s Syndrome. Since identical twins share 100 percent of their genes and fraternal twins share 50 percent of their genes, comparing autism rates in both types of twins enabled researchers to measure the importance of genes versus shared environment.
Results demonstrated that autism or autism spectrum disorders occurred in both children in 77 percent of the male identical twins and in 50 percent of the female identical twins. Confirming their hypothesis, rates among fraternal twins were lower: 31 percent of males and 36 percent of females. Yet mathematical modeling suggested that only 38 percent of the cases could be attributed to genetic factors, compared with the 90 percent suggested by previous studies. Most surprising to the researchers is that shared environmental factors appeared to be at work in 58 percent of the cases.
Because the rate of autism occurring in two siblings who are not twins is much lower, conditions the twins shared in the womb, rather than what they were exposed to after birth appeared to have contributed to the development of autism.
As a mother of fraternal twins who both have high function autism, this news is unremarkable. Many of the Rho(D) immune globulin shots for mother/child blood incompatibility contained mercury even after it was officially removed from vaccines. The rise in the number of c-sections corresponding to the rise in autism calls obstetric drugs into question. Mothers giving birth later in life and prematurity, common in cases of twins are acknowledged red flags. A companion study to this one notes high risk of autism amongst mothers-to-be taking anti-depressants.
In the world of science in which hypotheses must be proven, it’s good news that this study will cause more attention to be paid to environmental factors inducing autism. Now that Pandora’s box is open, let’s not confines ourselves to in utero influences.
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Autism strikes a family’s heart, soul and wallet. Estimates by The Autism Society puts a lifetime of care for an autistic child at $3.2 million. Autism parents know firsthand the brutal toll to the family coffers of therapies that can run $40,000 to $50,00 per year. Families tangle with insurance companies, invariably ending up with […]