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.
The recent trends in autism news have been dispiriting, to say the least. The persecution of parents with autism, a community rejecting a group home for young adults with autism, the harrowing encounters between individuals with autism and police and rampant wandering cases leave me needing a break from the doom-and-gloom. A story out of Chicago provides just that, where a total stranger has bought a new therapy puppy for a boy with autism.
The story of Mariano Paredes refusing to eat after his dog was stolen became national news when television stations in the Chicago area pleaded for help in finding the youngster’s pet.
John Debartolo, a nearly-blind diabetic, heard the report and could not sleep afterwards. His own little dog is a constant support to him and he felt he had to do something for Mariano.
After holding a garage sale to augment his personal money, Debartolo bought Mariano a new puppy. United Airlines shipped the dog for free and Petland pitched in a $1,500 gift including five years of free shots for the dog, a year’s supply of food and a chip to help locate him in case the puppy ever went missing.
This story is all-the-more touching because the benefactor is himself disabled and far from wealthy.
Therapy dogs can make all the difference in the world to a child with autism and it’s good to know that Mariano is eating again after the kindness of a stranger.
Beginning this Wednesday, July 6, the Autism Society of America Foundation will hold its annual conference in Orlando, Florida. This will mark the
organization’s 42nd conference and is one of the largest of its kind in the nation. The three-day event will feature approximately 100 exhibitors and up to
1,800 attendees converging from all around the country.
Among those in attendance will be Shonda Schilling, wife of former Boston Red Sox pitcher Curt Schilling as well as Tracy Thresher and Larry Bissonnette,
stars of this year’s critically acclaimed autism documentary, Wretches &
Jabberers.
We will be there and I’m looking forward to meeting the various family members, caregivers and professionals that are so passionately dedicated to
making a difference in the lives of those affected by autism.
Attendees will be equipped with vital information and support, which include educational training, communication tools, biomedical info and early
intervention help.
Aside from the training, perhaps the greatest component to these types of events is the ability to network and interact with other parents and caregivers who are also affected by autism spectrum disorders.
Caring for an individual with autism can often be a lonely and isolating experience and the opportunity to connect with others who are facing similar
challenges is a great support resource and an important reminder that we’re not alone.
It’s no coincidence that our closest friends happen to be other parents with children on the autism spectrum. The instant bond that autism creates among others who are affected always seems to cut through any racial, social, economic, religious or political differences that may exist — one of the many silver linings that often accompany this disorder. The conference will be a great way to foster these types of relationships.
The ASA conference will be a family-event and provide respite care (via KiddieCorp), so parents are able to attend the conference with complete
peace-of-mind.
If you will be attending and have the time, please stop by and say hi.
I’m looking forward to a great week ahead — see you in Orlando.
Tampa, Florida brings us an appalling case of a single mother jailed because her child with autism missed too much school. Non-verbal and prone to disrupting class, the son attended half-days at his elementary school. His mother would often sit in the hall during that time waiting to have to take him home after his next meltdown. While her son is a very smart boy and achieves in class, she argued that she needed the flexibility to be able to keep him at home when his behavior precluded him attending school. In court, she produced a note from a doctor to that effect. The judge in the case chided her for not sending it to him earlier in order to avoid arrest. She was already on probation for prior truancies.
The 43-year-old mother recently suffered a stroke that she attributed to stress from
the situation. The child’s grandmother and older siblings cared for her son while she was hospitalized for over a month.
Being arrested for truancy is one of the few things that hasn’t happened to me in the course of raising my sons with autism. I’ve been threatened with it, though. When I disagreed with the school system placing one of my sons in a program for conduct disordered children, I nearly suffered this fate. I had to file a declaration to homeschool in order to cover the many months and ultimately years it took to resolve this argument. Then they tried to use the fact that I was homeschooling to say I was opting out of their program
voluntarily and thus had no rights.
The more stories I hear of the suffering of parents of autism, the more alarmed I become. Our society is just so far behind the curve in understanding and appreciating the trials and tribulations of raising a child on the autism spectrum. Epic fail for Florida schools to make this a matter for the courts instead of having her son’s IEP team hunker down and arrive at a plan that would genuinely meet his needs.
Recently, I learned that schools can create programs for children with autism that are part homeschool and part classroom attendance. This seems
to be an obvious solution. To see this mom in an orange jail suit is infuriating and heartbreaking. Once again,
we need to sound the clarion call for more support to families of children with autism.
Following up on a story we reported on in May, Yvonne Freaney, a UK mother who killed her 11-year-old son with severe autism, has been allowed to walk free by Justice Wyn Williams this past week. This comes after initially being cleared of murder and convicted of a lesser charge of manslaughter. In his ruling, Williams claimed that Freaney had been "punished enough" and released her on a supervised order.
As part of her release, Freaney will be required to live in a residence approved by the courts and is not allowed to have unsupervised contact with any
child under eighteen years of age.
Freaney strangled and killed her son, Glen, back in May of 2010 with a coat belt because she “was frightened about who would look after him" after she was gone. Upon killing her son, Freaney attempted to take her own life by cutting her wrists, but was unsuccessful. She was described as a
sad, defeated woman who suffered from physical abuse at the hands of her husband, Mark, as well as a psychological disorder.
Although this case is tragic on many levels, one thing is clear — Freaney is now a free woman because of a sympathetic judge and jury, despite the fact that she murdered a child.
Some have speculated that had her child not been severely autistic, she would have been convicted of murder. If true, then this is a blatant example of the devaluation of human life related to someone with special needs and Justice Williams should be ashamed of himself.
In learning of all the details of this story, it was truly sad and tragic for all involved. However, sympathy should never trump justice and clearly, this is what happened.
In addition to telling Freaney that she had been "punished enough," Judge Williams also said:
“The only sensible and credible explanation is that your state of mind was truly abnormal….You cared for [Glen] with the best of your ability, day in and day out. He was very demanding but you never let that deflect from putting his best interests above those of your own.”
That is just a stunning statement in light of what happened.
Based on Williams’ comments and actions, he obviously deems the killing of a child acceptable behavior for parents who are overwhelmed while caring for a child with autism. What a terrible precedent and what a terrible injustice for Glen.
