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 &
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
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
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.
A collaboration between the Temple Grandin
School and the University of Colorado’s Speech, Language and Hearing Sciences department is using radio interviews as a way of teaching better communication skills to individuals with Asperger’s Syndrome (AS).
“The Perspectives” program capitalizes on the fact that learning to interview helps AS students become interested in what other people are thinking and appreciate their perspective. In the course of the three week experience, students work in small groups to arrive at topics and develop questions. The interviews are recorded, affording students the opportunity to review their work to see if they stayed truly connected to the topic and the interviewee. The process helps the AS individual learn the give-and-take process of engaging others, with the goal of developing the flexibility necessary to achieve meaningful conversations.
My personal experience is that this kind of creative approach is much more successful at delivering results than ordinary lecturing about the rules of conversation. My fifteen-year-old-son suffered severe stuttering despite having been in speech therapy since age four. Within the past year, he
has cured himself without trying after he became interested in posting video blogs online. Wanting to come across well, he recorded them over and over again until they were stutter-free. Simultaneously, he became interested in rap, particularly fast rapping. He wrote his own fast raps and worked on them until he could delivery them to perfection. Now it’s hard to remember he ever even stuttered.
As another example, my son’s biggest meltdown trigger at school was being cut off in mid-sentence and not being about to finish his thought. Because of his interest in drama, I suggested to his speech therapist that she role play different scenarios where this actually occurs so that he could creatively arrive at a different response than his autonomic meltdown. She was nervous about it, but it turned out to be a smashing success.
Whenever possible, identify what excites your child and use it to provide creativity and inspiration to the learning of crucial skill sets. For my son, it achieved what years of speech therapy and expensive social skills classes could not. For others, "The Perspective" program is opening up a whole new approach to communication for students on the autism spectrum.
A truly disheartening story
has emerged from Queens, New York where Bellerose residents are saying “not in my backyard” to an Astoria nonprofit’s plan to set up a group home for
young adults with autism in their neighborhood. Apparently, another group home exists in
the community, so the neighborhood contends that the proposal constitutes oversaturation. They further hint that the affluent community of Forest Hills hosts a fraction of the group homes that their borough does and
that it’s unfair.
The worst part of this story is that residents call the group home “a foolish and dangerous
proposal," particularly objecting to the fact that the proposed site for the home is next to a ball field.
These remarks reveal a shocking level of ignorance towards autism. Indeed, if you replaced the phrase “group home for child sex offenders” for “group home for individuals for
autism," you would get the same level of vitriol. A clear voice for autism needs to bring information and sanity to the discussion, so that even if the proposal is denied and the proposed group home must find a new site, the community will be left with a greater appreciation of what it means to have
autism and empathy and compassion are the appropriate responses to it. State assembly members have promised to look into the matter of oversaturation.
Who will look into the matter of rampant, unwarranted fear?
I can’t help but be reminded of the new book, "The Science of
Evil," by Simon Baron-Cohen. His contention is that individuals with autism are devoid of empathy, while
having compensating “systemizing” qualities that damage our children’s cause. Likewise, the recent spate of
crime stories featuring
individuals with Asperger’s Syndrome creates a false impression that they are risky members of the community.
In point of fact, while a large percentage of individuals with autism have encounters with police, almost none of them are the result of the individual-first committing a crime. This makes the often tragic outcome of these encounters all-the-more heartbreaking. How the press handles autism has a huge impact on
the future of those on the spectrum. and the current trends aren’t looking good.
At a time when more-and-more youngsters with autism will be growing up and aging out of services, the need for public education about autism is greater than ever.
Housing solutions for young adults with autism are among the most pressing needs. Expect an onslaught of situations like the one in Queens if more isn’t done to pave the way for our grown children to be assimilated into their
Among the tried and true therapies available for autism is cognitive behavior therapy (CBT). In recent years, cognitive therapies developed in the 1950′s and 60′s evolved into cognitive behavior therapy as it is known today. CBT is based on the premise that how we think, feel and act all affect each other.
Autism luminary Dr. Tony Attwood uses CBT as the cornerstone of his practice with high-functioning individuals with autism. His CAT kit is a recent CBT tool based upon the premise that while these individuals lack innate social and emotional awareness, those skills can be successfully taught. The recommended starting age for CBT is age 8. For younger children,
Dr. Attwood recommends social stories and cartooning with blank thought bubbles to fill in how the child perceives a situation vs. what is actually happening.
CBT asks individuals with autism to become aware of him or herself, discovering their own triggers for anxiety and developing their own methods to deal with escalating emotions. Dr. Attwood suggests a thermometer drawing to track upsetting influences and a “toolbox” of go-to strategies to restore emotional equilibrium. The beauty is that it encourages the child to develop their own strategy for self-regulation, rather than having solutions imposed upon them. Because high-functioning individuals sense of logic is so keen, it is especially effective for them to learn to analyze their own feelings and those of others.
Another advantage is while many trained therapists are available to guide CBT, they are not entirely necessary. Using available resources like the CAT-kit, parents and teachers can successfully employ CBT in the home or in small groups. CBT carries no hazards or warnings and research indicates these results for individuals with autism:
• Are more likely to initiate positive social interaction with peers
• Provide more relevant solutions to social problems
• Obtain higher teacher-rated social skills scores
• Have reduced anxiety, depression, obsessive compulsive disorder and self-injury
• Have reduced levels of stereotypic and self-stimulatory behavior
• Have reduced disruptive behavior
• Have decreased inappropriate vocalizations
• Learn to exhibit appropriate play skills
My personal experience of using CBT for my high-functioning son is very positive. In cooperation with his middle school teacher, my son was able to respond to stress-inducing situations with his own self-soothing activities to the point that his meltdowns went from five or more a day to none. At home when he becomes anxious, he knows just what to do — get under his weighted blanket and listen to his iPod. Being able to take care of himself has bolstered his self-esteem and confidence. We used a workbook by Dr. Attwood, the precursor to the CAT-kit and experienced life-enhancing changes for the cost of a paperback.
Awareness of CBT can also be useful in dealing with low-functioning autism. Poised to medicate her son with anti-psychotics, a mother asked Dr. Attwood what to do about her low functioning child who tore up the house every time he returned home. Dr. Atwood answered that the child’s behavior had become ritualized and indicated an excess of anxiety. He suggested disrupting the pattern by having the child engage in physical activity, then enter the house through a different door. As far as medication, he believed anti-anxiety medication would be more appropriate.
Using principles of CBT, parents of low-functioning children can assume the role of ascribing motivations and solutions for them. Coupled with the benefits for those on the high and mid-ranges of the autism spectrum, cognitive behavior therapy is an excellent, but often underutilized form of treatment for individuals with autism.
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.
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.
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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 […]