In what has seemingly become a regular occurrence, another child has tragically
died in a wandering and drowning-related incident, this time near Tulsa,
Four-year-old Blake Murrell, who had autism and was non-verbal, was found
deceased in a duck pond yesterday afternoon just a short distance from his home.
Murrell was reported missing at around 11:30 a.m. by his mother and was found
and recovered about 4 hours later.
recently reported, autism wandering deaths have become so prevalent in
recent years, some of the largest autism organizations in the country have
teamed up to form AWAARE, a group that focuses on preventing wandering incidents
and wandering-related deaths through education, resources and awareness.
Children with autism are prone to wandering and are often attracted to water due
to its texture. A child with autism can disappear out of sight in a matter of
seconds, so it’s very important that parents, caregivers and educators be extremely vigilant on this issue.
When a child has autism, most of the family’s energy and resources go towards that child. Siblings carry their own special burdens as they experience all the hardships and stress attendant with autism, yet may feel they get less of their parents’ attention. More is expected of them than their sibling and they can experience this to be elementally unfair. They are party to people’s hostile reactions when their
brother or sister causes a scene in public and may resent the negative attention and
even feel embarrassed or pained.
Often, the neurotypical child is the person in the family better able to calm their sibling who is melting
down or help them navigate their world. Although both my twins are on the autism spectrum, one has less severe problems than the other and I habitually looked to him for help with his brother. From a very tender age, it was obvious that the twin connection superseded the parent connection. I considered it a
blessing and tried very hard to keep both sons’ needs in balance, but truthfully, my more stable son was rendered a “little adult,” despite his own challenges. He was the eye of every storm and I looked to him often.
Parents should give their weight-bearing child the chance to express what it’s like for them to have a brother or sister with autism. These siblings often hide their concerns and become the overachiever or the “easy” child who harbors feelings of invisibility within the family. There is a danger that just like other caregivers who sacrifice too much, they may be giving up their childhood or missing opportunities to just be a kid. Making special one-to-one time expressly for your neurotypical child goes a long way towards letting them know that they are not losing out to the more needy brother or sister.
Siblings have a huge influence on children with autism. In fact, a groundbreaking study published in
the latest edition of the Journal of Child Psychology and Psychiatry suggests that the influence of siblings actually determines the social behavior of children with autism. Children with autism who have younger siblings demonstrate a significant advance between the ages of three-to-five years in “theory of mind,” or the ability to perceive that everyone has their own intentions, beliefs, desires and emotions. Normally, even the highest-functioning child does not score well in theory of mind before age thirteen, yet these very young children excelled.
Unsurprisingly, siblings of children with autism are often deeply compassionate and wise beyond their years.
This month as a part of Autism Awareness Month, there was a school sponsored event where siblings explained autism from their perspective to their classmates, serving as both ambassadors and
liaisons between the autistic and neurotypical worlds.
Clearly, siblings of children on the autism spectrum have a special role to play within the family and community.
As such, extra care needs to be taken to honor and support them. Towards that end, many organizations have started groups expressly for siblings of children with autism.
Facebook now has a page just for siblings-of-Autistic-Children: http://www.facebook.com/pages/Siblings-of-Autistic-Children/179729994860
In what appears to be an alarming and disturbing trend, another incident has
been reported involving sexual misconduct between a caregiver and a child with
autism. This time, a case has emerged from the Los Angeles area, where an
in-home caregiver has been arrested and charged with 11 felony counts of committing a lewd act upon a child and three felony counts of oral copulation of a person under 14.
Twenty-nine year old Jeremy Stockton, a caregiver to special needs children,
was taken into custody last week and is currently in jail on a $1.4 million
bond. Stockton is accused of committing the alleged crimes on a young boy with
autism from March 1, 2008 to March 26, 2011. He was arrested when the youngster
came forward with allegations of molestation.
There needs to be greater accountability in these types of incidents and
authorities need to identify how this type of behavior (if proven true) was able
to go on for such a long period of time and what type of background and
screening process was implemented by Wellspring, the local agency that employed
This is also a perfect example of the need for parents to be extra-vigilant about who
comes in contact with their children on a regular basis. Children with autism,
especially those who are non-verbal, are ideal targets for sexual predators
because of their inability to properly communicate or report incidents of abuse.
As such, parents need to be extremely sensitive to who they are entrusting their
Jeremy Stockton has pleaded not guilty and is due back on court on May 3 to
determine if there is enough evidence for him to stand trial. We will provide
updates on this case, as they emerge.
On April 6, 2011, U.S. Rep. George Miller (D-CA) introduced The Keeping All Students Safe Act, legislation designed to prevent
school children from being abused as a result of inappropriate uses of restraint and seclusion. Government investigations have found that these abusive practices are used disproportionately
against children with disabilities such as autism and most often at the hands of inadequately trained staff. The legislation first passed the House a year ago with bipartisan support, yet never became law.
Since the bill failed in March 2010, dozens of instances of maltreatment have been reported across the nation. Children have been tied up with duct tape, sat on by untrained
staff and locked in rooms for hours at a time – abuses tantamount to torture.
The Keeping All Students Safe Act would introduce minimum safety standards to prevent abusive restraint and seclusion in schools across the country. Similar protections already exist in medical and community based facilities, but like corporal punishment, public schools are the last bastion of unrestricted child abuse. After two years, states will be required to have their own policies in place to meet new minimum standards, which would apply to all schools and preschools receiving federal education support.
The Government Accountability Office (GAO) found that abusive restraint and seclusion were widespread in schools across the country. Typically inflicted by untrained personnel, these practices were largely used as a routine disciplinary tactic, rather than in response to an emergency.
Seclusion in this context means the act of involuntarily confining students in
areas by themselves. Restraint is a restriction of an individual’s freedom of movement. Restraint can and has become fatal when it blocks air to the lungs. Ropes, duct tape, chairs with straps and bungee cords
have been used to retrain or isolate young children in some of the cases examined.
Only twenty-three states have meaningful restraint and seclusion laws or regulations. Currently, only thirteen states ban the use of restraints that impede breathing, only ten states ban mechanical restraint and ten states ban chemical restraints.
Specifically, the legislation would:
• Allow physical restraint or locked seclusion only when there is imminent danger of injury, and only when imposed by trained staff;
• Prohibit the use of any mechanical restraint, such as strapping children to chairs, misusing therapeutic equipment to punish students, or duct-taping parts of their bodies;
• Prohibit chemical restraint, meaning medications used to control behavior that are not administered consistent with a physician’s prescription;
• Prohibit any restraint that restricts breathing;
• Prohibit aversive behavioral interventions that compromise health and safety, such as denying students water, food, or clothing, denying access to toilet facilities, or using noxious stimuli such as pepper spray in order to control behavior;
• Prohibit schools from including restraint or seclusion as planned interventions in student’s education plans, including Individualized Education Programs (IEPs); and
• Require schools to notify parents after incidents when restraint or seclusion was used.
It’s remarkable that in 2011, this legislation is even necessary. The reality of just how barbaric our school systems actually are is utterly shocking. One of my own children suffered such abominations and it scarred him for life. It rendered him anti-authoritarian, a logical consequence, but one not conducive to attending school. It pains me because I know why he feels the way he does, yet I want him to be able to access education and have a range of choices about his future.
Attention to the issues of corporal punishment and isolation and restraint are long overdue in a country that considers itself a leader among civilized nations. As the number of cases of autism continue to explode, the heat is on to develop best practices for educating children on the spectrum.
A recent and growing trend that has provided many benefits for children on the
autism spectrum involves their engagement in karate and other martial arts.
A 2010 research project conducted by the University of Wisconsin physical therapy department confirmed what parents were already
reporting — in the course of learning martial arts, children with autism essentially came out of their
shells and grew more socially assertive and cooperative. They exhibited better balance and motor
coordination, eye contact improved and play skills were further developed. Greater self-esteem was also reported, with the added bonus of these kids
being able to defend themselves, if need be.
Karate and martial arts assist kids on the autism spectrum with the ability to concentrate and focus their attention in a consistent and highly structured environment.
Additionally, parents find that new skills carry over into home and at school. The
release of energy in a safe and ritualized environment can bring a child to a new sense of calm. Friendships are formed around a shared
activity and that sense of belonging can be the greatest reward of all.
If contemplating martial arts for your child, it’s always good to consult with his or her doctor prior to beginning any physical training. Observe the class before committing your child to it. It should be small and solely for children with autism, at least initially.
Higher functioning children may be able to integrate into regular classes
immediately. Confer with the instructor about your child’s needs and make sure you feel you can successfully partner with them.
Once your child is underway, have them practice at home in a no pressure
environment and offer encouragement and reinforcement for the moves they have
already learned. A demonstration for siblings or other relatives will also go a
long way in building confidence and self-esteem.
Martial arts offers therapeutic rewards and parents will enjoy the fact that their child
can participate in activities that other kids take for granted. And with summer
fast approaching, it just may be the perfect activity to consider.
Ohio is leading the way in educational opportunities for individuals with autism by sponsoring the
Ohio Autism Scholarship Program. Since 2003, the program has been providing up to $20,000 a year for families to seek an educational placement outside the public school system.
Funds can also be used to gain access to early intervention services and for individualized programs that may include several different essential therapies. Currently, more than 1,600 students avail themselves of the scholarship and the number of students who may apply is unlimited.
The Ohio General Assembly is discussing expanding the program to include all children with disabilities, not just autism.
As someone who had to fight my son’s school system for several years in order to obtain an out-of-district placement, this program is truly
inspiring. The time my son languished in limbo while our case crawled through the system was not worth it against the eight months at a private school the district ultimately agreed to pay for.
I also love that the scholarship includes early intervention and therapy.
No child with autism should be denied treatment because of his or her family’s lack of economic resources.
That has always been a vexing injustice.
While the public school system is mandated to provide an appropriate education to every student, the reality is that this just isn’t the case. Between that sad fact and the astronomical costs of therapies for autism, many children on the spectrum have been falling through the cracks.
I hope more states will take Ohio’s program as a blueprint for closing those gaps.
With the launch of this month’s critically acclaimed autism documentary,
"Wretches and Jabberers," another autism film that has
yet-to-be-released is quietly creating a buzz online and in the blogosphere.
"The United States of Autism" is a documentary from director Richard
Everts that involves a quest across America in just 40 days involving 11,000
miles and 20 families speaking 5 different languages. With the help of the Pepsi Refresh
Project and a $50,000 grant, Everts and a small production team ventured out to
seek answers to questions for not only himself and his son with autism, but for
other families dealing with similar challenges as well.
The film weaves a broad and compelling tapestry across all faiths, disparities,
colors and cultures. What is learned along with way has changed not only the
life of Everts, but the families he came across as well.
Currently in post-production, "The United States of Autism" is in need
of additional funding for its marketing, distribution and release. Online
donations are being accepted and every pledge over a certain amount receives a
gift based on that amount. If Everts and his team exceed their goal of $10,000
by May 6, the project will be funded.
While raising a child with autism is a day to day journey, in the back of every parent’s mind is what level of independence their child will eventually achieve. Where and how will they live?
Lately, I’ve been coming across articles about concerned parents coming together to generate living spaces for their children. In Canada, a group of parents designed an apartment house for their young adults on the spectrum to dwell in, complete with quarters for live-in aides. It enjoyed underwriting by the Canadian government, but unfortunately stalled due to the economic downturn. The parents still vow to replace promised funds and see the finished architectural renderings become a dream home for their children.
In Asheville, North Carolina, Jesse Willis, aged 29, is severely autistic yet lives in a house with two
roommates and holds down a restaurant job. Independence from his parents was once thought an impossibility, but the three men’s parents bought the house and the Autism Society of North Carolina pays for the live-in staff that provide their around-the-clock oversight. The community is embracing Jesse and he enjoys a good life, a life his parent’s never dared dream for him.
Strength obviously springs from families of adults on the autism spectrum coming together to generate workable solutions. The collaboration between (albeit it undependable) government and
families and the partnership between families and state autism societies are exciting aspects of these stories.
The weakness lies in a parent who cannot afford to kick in financially for their child’s housing. Their economic stake should be provided by a foundation or charity so that they too can participate in this creative problem solving.
With my sons having just started high school, their transition to adulthood is moving from the back burner to the front. Now, I’m thinking over who they could live communally with, what level of support they would
need and what groups are available within the community to participate in a plan. It’s good to be able to think creatively about the next phase of their lives instead of merely experiencing apprehension over their futures.
Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Idaho, Indiana, Kansas, Kentucky, Louisiana, Mississippi, Missouri, North Carolina, Oklahoma, South Carolina, Tennessee, Texas and Wyoming.
These are the remaining states where corporal punishment is still legal in schools. On April 7, New Mexico courageously removed itself from the list.
Despite empirical evidence that corporal punishment negatively impacts academic success and causes
long-term psychological and social harm, there is no federal ban on the horizon and inmates in juvenile detention centers actually enjoy greater protections from physical punishment than students in public schools.
Perhaps most alarming is the fact that students of color and students with disabilities such as autism are disproportionately subjected to corporal punishment.
Distressingly, a child with autism or Tourette’s syndrome is most often physically punished for exhibiting symptoms of their disorder. Abuse of children on the autism spectrum tends to include more other forms of abuse as well, like dragging, pinching, slapping and improper restraint. Obviously, the legal rights of these individuals are being systematically denied and their conditions are worsening instead of improving.
Corporal punishment pits parents against schools, as parents objecting to their child being paddled or otherwise harmed have no recourse but to withdraw them. Drop out rates have been demonstrated to spike among paddled populations, as has aggressive behavior in children with autism who have suffered physical harm in the school setting.
During Autism Awareness Month, let’s redouble our efforts to shed light on the dark truths of our educational system and compel those nineteen remaining states to join the 21st century.
It’s all over the news that a Massachusetts woman
has been charged with attempted murder, child endangerment and assault and
battery for withholding cancer treatment from her son who also suffered from autism. She admitted that she did not give him in-home chemotherapy prescriptions for five months because the side effects made
her son so sick, she was afraid he couldn’t withstand them. His cancer, once in remission, returned and he died of lymphoma at
the age 9 in 2009.
Certainly, this story is an unspeakable tragedy by any measure, but rather than address the woman’s guilt or innocence, I want to speak to
the underlying issues. This woman was a broke, single mother with little or no support from the boy’s
father and took care of her son alone. Those of us with children on the autism spectrum know what a daunting and exhausting task raising our child is. Now add the dimension of that child having a separate, life threatening disease.
From personal experience, I know that even the most prestigious hospitals can lack special protocols for children with autism, making their stay much more stressful than it needs
Late the second night after my child was admitted into a hospital, they moved him without warning to another floor. He became hysterical and
there was no one there to be with him. The next morning, I walked into what I thought was his room only to find it stripped bare of everything, beds and equipment included. I went into shock thinking he had died in the night. This was just the kick off to six weeks of such horrific surprises and mistakes.
Then once a child is released from the hospital, a parent is expected to become
a full time nurse, charged with monitoring IV machines, stomach pumps, copious
amounts of medication and whatever else it is that goes home with him or her.
What doesn’t go home with you is help and support. Already pushed beyond the human limits of endurance by a lengthy and harrowing hospitalization, parents are tasked with being their child’s medical
caregiver, then held accountable should something go awry.
This is a very serious problem and endemic at our children’s hospitals. Public health nurses and respite care should be made available to the parents of seriously ill children after they leave the hospital, especially single mothers without the support of an extended family. Community support is generous for these institutions and special funds should be allocated to
assist parents once their children leave the hospital proper.
The woman in this tragic story needed other hands to help with her son. She needed to sit in a cafe and drink coffee or go for a walk. She needed to be part of his home medical team, not the whole show. Someone should’ve had her back.
All information in this site is presented for support and educational purposes only. It is not intended to substitute for medical treatment or visiting a licensed medical physician. Visitors who desire to apply or use any information listed herein are urged to consult with licensed healthcare professionals first. All information is deemed reliable but its accuracy can't be guaranteed.
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 […]