In my ongoing research of autism treatments, I have been delighted to find that some of the most effective means of addressing autism involve reconnecting with the natural world, the physical body and the creative self.
Heartening results have been reported from a vast array of activities including yoga, gardening, dance, horseback riding and art therapy. Fun, engaging and non-invasive, these activities produce real improvements in the functionality and level of well-being of individuals with autism.
This is especially important to bear in mind in light of a disturbing press release
I read yesterday addressing the “underserved” market of autism spectrum disorders (ASD) by the pharmaceutical industry. A rush of enthusiasm to market atypical anti-psychotics for irritability in children with autism owes to these stated facts:
"Over the past 6 years, three major events have impacted the autism spectrum disorders market. In 2006, Risperdal became the first drug to receive approval from the US FDA for the symptomatic treatment of irritability in children and adolescents with ASDs. Later, in 2009, the FDA approval Abilify for the same indication. In 2008, generic risperidone launched following Risperdal’s US patent expiry."
The FDA is doing us no favors in allowing our children to be viewed as “market share” by these wolves at the door. I know of what I speak. In a moment of desperation when I was mistakenly told my son was psychotic and likely schizophreniac, he participated in a drug trial of risperidone which was one of the worst experiences of his life. Sedated to the point of paralysis, he screamed his head off around the clock. Against doctor’s orders, I cut short the seven-day trial. Irate, the psychiatrist was ready to try Lithium next. I told him to forget it and we never went back.
Respidone carries heavy weight long-term side effects such as tremendous weight gain, diabetes and uncontrollable muscle spasms. Abilify, which is vaunted to have fewer side effects, names headaches, anxiety and sleeplessness as being the most common, with dizziness, blurred vision, tremors and edema, among many others. These drugs yield big profits, but not to our children.
The harsh reality is that autism is now an industry and we parents, always yearning to help our children, are vulnerable to exploitation from a myriad of quarters. Like me, you may hear that atypical psychotropics are the answer to your child’s problems, but the only garden path you should be lead down is
the one where you till and water the earth with your child.
A series of disturbing news stories paints a grim picture of the State’s intervention in the families of individuals with autism.
Perhaps the most harrowing case emerged from The Detroit Free Press, who recently published a six-part investigation
into the Wendrow family, who have a teen daughter with severe autism and a son with Asperger’s Syndrome. The parents pressed for their daughter’s school to use facilitated communication (FC), a highly controversial technique in which a facilitator aids an individual in typing their thoughts. When the Wendrow’s daughter assisted keyboarding began spelling out allegations of sexual abuse committed by her father and brother, a nightmare of epic proportions began in which the parents spent time in jail and their children were placed in separate juvenile homes and kept apart from their parents for 106 days.
Authorities acted upon an assumption of guilt even when a sexual assault test found no proof and a prosecution witness insisted their was no abuse. For her part, the aide refused to believe she was influencing the daughter’s typing, even though the child was clearly not capable of the complex language being attributed to her. The judge who finally dismissed the case described it as “a runaway train."
In another case out of Canada
, Derek Hoare briefly lost sight of his nine-year-old daughter who was playing in their backyard which is surrounded by a six-foot fence. He immediately called police and a frantic search found her safe and sound over at the neighbor’s pool.
Happy ending, right? Not exactly.
Four days later, Hoare’s daughter was removed from his home by authorities, who maintained they were lightening the load of the single father of three. The daughter is being held in a psychiatric facility and can’t even see her father until a hearing determines his rights.
London brings us the story of a judge finally ruling that a 21-year-old man with autism had been unlawfully detained and his human rights breached when a center that his father brought him to for brief respite care refused to release him after the agreed upon two-week period. The center was concerned about the way the son acted while there and committed him to a “positive behavior unit." It took a year for his devoted adoptive father to win his release.
Once a child is taken away from the home, the process for achieving his or her return is horribly long, which makes it all-the-more important to take utmost care in making initial decisions. Obviously, any child summarily torn from their family is going to be traumatized, but for the child with autism, the trauma expands exponentially. Given the condition of psychiatric units, residential centers and foster homes, these stories are even scarier. Loss of custody means loss of parental choices over treatment. In foreign environments, children are subjected to drugs and other actions the parent would never consent to.
Clearly in the Wendrow case, the starting point should’ve been a closer examination of FC. In the story of single father Derek Hoare, in-home support and a tracking bracelet would’ve been in order. And for the poor dad who lost his adult son, the son was obviously acting differently in the center than he would at home and in-home respite care would’ve been the answer.
The flip-side of these stories are the tragic tales of lack of intervention as in the case in which a woman strangled her son with autism, or the beleaguered mother of a child with both cancer and autism who withheld chemotherapy from him. Surely, a mother escaping a battering husband living with her son with autism in a motel room is the epitome of a red flag scenario, as is the single mother enduring caring for her critically ill child at home with no help and support.
I worry about the power of the State over autism families because of the zeal in which they pursue dubious cases and the increasing number of tragic outcomes from families that fall through the cracks.
A UK teen who has been implicated in a string of website hacking incidents, has Asperger’s Syndrome, his lawyer said this past week.
Ryan Cleary, 19, has been accused of taking down Britain’s Serious Organized Crime Agency (SOCA) website and was arrested at his home this past Monday as part of a joint investigation by Scotland Yard and the FBI. Although Cleary was reported to be arrested as part of a probe into the infamous
LulzSec hacking group, they have since tweeted that he is not affiliated with their organization.
Cleary has admitted
to breaking into computer networks at NASA and the Pentagon, but claims he was only looking for evidence of extra terrestrials.
Since his arrest last week, the court was presented evidence of Cleary’s Asperger’s, a high functioning form of autism. His lawyer also claims that he
suffers from agoraphobia, a condition that triggers fear and panic-like symptoms in situations that are perceived to be difficult to escape from.
He was granted bail but remains in custody after prosecutors immediately objected. If bail is re-instated, Cleary will be banned from accessing the Internet or having any device that will allow him to go online.
While we don’t often hear of incidents involving individuals with autism committing crimes, they can and do occur. However, my concern is that the media will incessantly focus on Cleary’s condition and even attempt to connect it to his alleged crimes. Based on recent stories coming across the newswires, this already appears to be the case.
Despite some misconceptions about those with autism (particularly related to violent behavior), studies have actually proven that those on the spectrum are no more likely to commit crimes than their neurotypical counterparts (Barnhill, 2007; Griffith, 10 May 2006).
In high profile stories such as these, it’s important to refrain from jumping to conclusions and avoid the temptation of connecting the crime with a
condition. Those with autism have enough to deal with and the last thing they need is a media-generated stereotype of being computer hackers.
Courtesy: Pete Markham
At a time when the heartbreak of wandering is ever present in the news, the battle for having autism service dogs in school rages on. Service dogs are known to calm anxious children, disrupt their tantrums, aid in making transitions and keep them safe from traffic and the hazards of wandering. Yet despite the existence of the national Americans with Disabilities Act (ADA), there is no federal law permitting autism service dogs in schools and courts are being flooded with cases of parents fighting for their child’s right to have their canine helper in class.
Opposing schools contend that other children may be scared of the service dogs or be allergic to them. But ADA law states that fears and allergies are not valid reasons for refusing an assistance or service dog. Nor can schools demand information about the dog, though they can certainly request it.
For the schools part, they cannot be required to oversee the dog and child during the school day. A child must take a public access test to prove he or she is ready to be fully responsible for a dog in public. Until such time, schools should be aware that the dog must be allowed in the school when the dog is working with the child under the supervision of the parent. Schools need to make appropriate accommodations for the child/canine team such as creating accessible space in the classroom and having outdoor trash receptacles for a child to attend to the dog’s needs.
Perhaps the worst argument made against autism therapy dogs is that they are merely pets or not truly service animals and that the school is capable of meeting the child’s needs already. A federal judge recently overruled the barring of a service dog from a Florida school, a clear vindication of the rights of children with severe autism under ADA law. And as for the school already meeting the child’s needs, there are very few schools following best practices for autism and none that walk the child safely to and from school each day.
In a very recent breakthrough on this issue, the Alabama state legislature has passed a bill allowing all types of service dogs, including autism therapy dogs, in schools across the state. Furthermore, aides assisting students with autism can now be trained to work with the child and the service dog as a team.
Hopefully, other states will follow suit or an inspired lawmaker will take up this issue nationally. At a time when schools are seeing devastating budget cuts and the autism cases are spiraling upward, it only makes sense. As more schools allow autism service dogs, their fears will be allayed and the honoring of the rights of children with autism will prove beneficial to all
For individuals with autism, the world of interpersonal relationships can be strange and harrowing.
Uncomfortable on teams, the camaraderie of sports often eludes them. A simple thing such as recess at school is fraught with peril. Because it’s difficult for them to find solace in the company of others, children on the
autism spectrum often turn to creating collections as a source of emotional comfort. The collections are often centered around their special
interests and each item holds a memory dear to them of when and where they got it. While their obsessive attachment to objects can create a disharmonious environment, Dr. Tony Attwood points out that it is not the classical, rampant hoarding of often worthless items that can lead to hazardous living circumstances.
If your home is being overwhelmed by your child’s things, Dr. Attwood suggests a tender, restrained approach. Think of asking your child to get rid of his stuff like someone asking you to burn your family photo album. The best strategy is to cull out what you
can and keep a specific area for collected items. You might convince your child to rotate his or her collections in the spirit of maintaining their own personal museum, thereby cataloguing and retiring what could be stress-inducing clutter.
Hoarding is another interesting case in which individuals with autism engage in an activity for slightly different reasons than their neurotypical counterparts do. It calls to mind autism eating disorders that arise out of sensory issues or the embracing of the science of diet as a special interest.
Behavior problems in the classroom are more-often-than-not an expression of overwhelming anxiety as opposed to conduct disorder.
It’s important to view these problems through the prism of autism, because it always reveals deeper truths and sounder solutions.
In less-than-earth shattering news, a recent study done by the University of Cambridge, with The Science of Evil author, Simon Baron-Cohen as one of the researchers, finds that areas heavily involved with the information technology industry have a higher incidence of school children with autism. The authors conclude that autism-related genes express themselves as a talent for system-oriented thinking and may persist in the gene pool because they are linked to “adaptive, advantageous traits."
How much time and money were spent on this study to confirm the obvious? Anyone in touch with the world of autism knows that children on the spectrum gravitate towards technology, as evidenced by the iPad revolution and the multitude of apps available for those with special needs.
Pardon my impatience, but I live in Seattle, land of Microsoft. The suburban area around Microsoft has an extraordinarily high concentration of children with autism, a correlation around here that people take for granted.
Of course, individuals with autism tend to systematize. Even people with autism who aren’t overtly involved with technology see the overarching order in their world. Talk to Temple Grandin about her radical vision of slaughterhouse systems, or talk to one of my sons about where heavy metal fits into the schemata of all known music.
Six years ago, I heard Dr. Tony Attwood postulate that people with high functioning autism are on the cutting edge of a new evolution and it is incumbent upon the world to to appreciate them in that light.
I just wish researchers would not devote precious time and resources to scientifically proving things that are already common knowledge, then presenting their findings with a global drum roll.
Why don’t we investigate the issues that will actually make a meaningful impact and help improve the quality of life for our children with autism?
A new book, The Science of Evil, is certainly not doing any favors for the autism community. Written by Simon Baron-Cohen, a professor of developmental psychology at the University of Cambridge and director of the university’s Autism Research Center,
the book has a central premise that evil can be scientifically defined as a lack of empathy. Lack of empathy or a “Theory of Mind” is also described as a core feature of autism. Baron-Cohen writes:
"A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds."
Now my hackles are already up because if a theory of mind makes us human and individuals with autism are said to lack it, then that makes people with autism less-than-human.
Baron-Cohen goes on to propose that evil is an absence of empathy, exacerbated by negative environmental factors (usually parental, sometimes societal) and a genetic component. When these three exist simultaneously, they result in what he terms a Zero-Negative personality. Zero-Negative takes at least three forms: Zero Type P (psychopathology), Zero Type B (borderline disorder) and Zero Type N (narcissism).
Whereas psychiatry groups these three loosely under the term “personality disorders,” Baron-Cohen views them in terms of empathy, resulting in “very different treatment
implications." Psychopaths aside, people with low degrees of empathy can be taught empathy and treated with standard psychiatric approaches.
In addressing his theories in relation to Asperger’s Syndrome, he draws the
conclusions that people with Asperger’s syndrome also fall on the zero end of the scale, but they are Zero Positive. Zero Positive is almost always accompanied by high scores on the systemizing scale (and can lead to genius). In addition, the way “their brain processes information paradoxically leads them to be supermoral rather than immoral.”
Baron-Cohen’s assertions that the compensatory faculty of systemizing the world results in a rational supermorality rather than an immorality in individuals with autism neglects some vital truths and does people on the autism spectrum a grave disservice, forever conflating their lack of classical empathy with his new definition of evil.
While those with autism spectrum disorders (ASDs) lack cognitive empathy or the ability to predict how people will behave in response to their emotions, there is overwhelming evidence that they are hypersensitive in feeling the emotions of others, or affective empathy.
Numerous studies draw these conclusions:
* High-functioning autistic children display more emotion than typical children in response to empathy-inducing scenes.
* The faces of autistic adults demonstrate heightened electromyographic responsiveness to expressions of fear and happiness on the faces of other people.
* When looking at images of people suffering distress, autistic children have normal electrodermal responses.
* Adults with Asperger’s syndrome suffer personal distress in response to the suffering of others.
Those who work with, live with and care for individuals on the autism spectrum report that they are exceptionally sensitive to other people’s emotions.
Individuals with ASDs may learn to suppress or avoid their empathic responses as a means of self-protection, leading theorists to believe that they lack emotional empathy. Their insensitive statements or actions, often stem from an inability to predict the impact such statements or actions will have on others, rather than a desire to be cruel. When they discover they have hurt someone’s feelings, they can be overwhelmed by regret.
Often, individuals with autism avoid distressed individuals because their empathetic response is so strong that they themselves may be too traumatized or confused to be emotionally presence for the other person. They may socially withdraw, behave
inappropriately or obsessively attend to details in emotionally charged situations to protect themselves against extreme emotional arousal. Mistaken to be uncaring, they actually care too much and experience difficulty separating their feelings from those of others. ASD individuals absorb and reflect back the energy of their environment, making it essential for those that live and work with them to keep as positive a vibration as possible.
In my son’s last school debacle his teacher would tell him that he was upsetting the entire class with his emotional outbursts. She believed he didn’t know or care and that he would control himself if it was brought to his attention. In point of fact, my son was excruciatingly aware of his impact on others already and when publicly castigated for upsetting his classmates he would run screaming down the halls and out of the building.
Imagine the disastrous outcome if this teacher reads the latest book from
Baren-Cohen and draws the conclusion that her next Asperger’s student is actually evil as well as unmanageable.
Continuing our exploration of color and
autism, Scottish optometrist Ian Jordan has developed the very first treatment for face blindness. Face blindness,
also known as prosopagnosia, impairs the ability of people to recognize faces and facial expressions. Common in autism, it feeds into
the difficulties of reading facial expressions and social cues.
Experts believe the condition is a result of the ability to process visual information being damaged or not fully developed. In other words, some of the information that the brain requires to make sense of what the eyes are seeing is missing or distorted.
Mr. Jordan has developed a method of creating individualized lenses, which he happened upon while treating a patient with sensory processing disorder. With a specialized lighting system consisting of a range of 16 million colors, he is able to alter the patient’s ability to process what they see. By filtering out some colors and enhancing others, a normally distorted face suddenly becomes recognizable. Once the right balance of colors is struck, relatively inexpensive colored lenses can be made for that individual.
The implications of his discovery are profound. As he himself relates, “Some people are able to piece together a person’s identity by recognizing the way they walk, or the sound of their voice, but the prospect of meeting and having to identify new people, either socially, at work or at school, can be very distressing – particularly so for those on the autistic spectrum.”
Mr. Jordan is presenting his findings at an upcoming Treating Autism conference in London. People with prosopagnosia are flocking to his office for evaluations and those that have received lenses report an enormous improvement in the quality of their
A bizarre and tragic story has emerged out of Houston this week, where a 7-year-old child with autism accidentally shot and killed his 5-year-old brother after they were left alone in a motel room.
The boys’ father, Vincent Del Sol, was said to be paying the room’s bill when the older child shot his younger brother in the torso with a shotgun. The dad returned to the room to the horrifying scene and paramedics arrived shortly thereafter, but it was too late.
The family had been living in the Houston-area Motel 6 for a year after a move from California, due to the father’s ongoing search for employment. Del Sol told police he was planning to pawn his gun and some power tools to help make ends meet.
In another twist to this story, Child Protective Services (CPS) on Wednesday was granted temporary custody of the 7-year-old after a hearing was held in which the father did not show up for. The boy’s mother is currently in jail after being arrested last month on a probation violation charge stemming from a child endangerment incident several years ago, when the boy was found wandering alone near an interstate highway.
Investigators said the shooting was an accident, but the district attorney’s office is still deciding on whether or not the father will face any charges.
This story is very fluid and there are conflicting versions of events being reported. One thing is for certain: this family needed help. CPS was said to be previously involved in their lives, but it’s unclear how they managed to fall through the cracks.
Raising a child with autism is difficult enough with an intact, functional family unit. When other factors are involved, such as irresponsible parenting or unstable environments, the results can often lead to tragic and disastrous consequences.
Respite care for families of children with autism has been a growing need and such services would go a long way in preventing these types of tragedies in the future. More to come on this important issue.
Parents of children with autism are painfully aware that recess time can be the worst part of their child’s school day. The piercing sound of the bell signals a time of loud, chaotic activity that is in and of itself difficult, but the inability to interact and play with their peers makes it a time of isolation and desolation for children on the spectrum. At a loss for how to help their child while away from them, parents often feel helpless upon hearing that their child cries or acts out at a time enshrined as a happy break from the rigors of the classroom.
When my twins were in elementary school, I would get reports about one of them crying the whole time at recess and the other getting in trouble with other boys, as if the onus was upon me to rectify the situation from afar. Eventually,
one of my sons started retreating to the library instead of going outside, while the other sat in a corner of the playground alone under a tree.
Now, the Playground Partners program of Arizona founded by Touchstone Behavioral Health is bringing therapists to the playground to assist children on the autism spectrum with initiating play, teamwork and conversations during school hours at recess. Trained aides encourage these children to start their own favorite game or activity on the playground and like iron filings drawn to a magnet, their classmates start to join in, much to the joy of the child. The mentors are ever present to help them navigate and mediate their surroundings, coaching them about maintaining appropriate personal space and other issues that may arise.
The program is an unqualified success at helping vulnerable kids form friendships and helping to inoculate them from the staggering statistic that over 40% of children with autism experience bullying at school. Teachers appreciate the reduction in playground incidents and the time needed to resolve such disputes.
So what’s the downside of this? Parents of children with autism have to pay for the service which may or may not be covered by insurance. While doing a Google search, I found very few schools that have in-house recess facilitators for children with autism. One program in Seattle has a recess club for special needs kids, but that is a separate program where neurotypical children are welcome to join as well.
If autism inclusion programs are to be genuinely inclusive, more attention must be paid to recess, so that what is supposed to be a release from the tension and cares of the day isn’t the most dreaded part of it.