During Autism Awareness Month and the other eleven months of the year, I am aware of the toll that autism takes on families. A key to alleviating this stress is respite care. The value of respite care is now being substantiated by researchers from Brigham Young University and Wasatch Mental Health who have conducted a study on the effects of respite care on autism families. One hundred and one two parent households across the nation were polled who had children with autism between the ages of 1 to 33.
Parents individually answered questions about their marriage, their feelings about daily responsibilities like money and work as well as how much
respite care they received during a typical week or weekend. They indicated that about 64 percent of their kids with autism spent time with a respite care provider. Grandparents were most often the ones cited in giving parents a break. Also mentioned were babysitters, community agencies and extended family members. The results indicated that, “Just one additional hour of respite care per week was related to an increase of six to seven points in marital quality, which is approximately one half of a standard deviation. This finding offers hope to couples parenting a child with ASD."
Adding to the evidence of respite care’s impact is a study last year in which researchers found a decreased risk for psychiatric hospitalization in kids and young adults with autism whose caregivers used respite services.
While this study addresses two parent households, single parents are even more vulnerable to the stresses of not having respite care. Many of you already know I am raising twins with autism alone. A few years ago I made a desperate search for respite care for one of my sons that included calling the governor of Washington State. Then Governor Christine Gregoire’s aide connected me to a state mental healthcare provider program. After an odious home visit and exhaustive interview process, I was referred to a state approved agency for four hours of respite care a month.
The aide who was sent to our home had no training in autism and spoke to my child in baby talk although he was a precocious sixth grader. When he had a meltdown and threw himself on the floor kicking and screaming, she called the fire department. Adding insult to injury the aide’s supervisor phoned me afterwards and read me the riot act because my son had “kicked her employee”. I tried to explain that her employee had gotten too close to him as I’d specifically instructed her not to, but ended up hanging up instead.
At this point I’d like to issue a friendly challenge to transform “autism awareness” into action. If you know an autism family, you know someone who could use your help. Maybe you can’t commit yourself to watching their child with autism for a whole hour. Maybe you watch them while the mom goes to the store, transforming a potential ordeal for her into a quick outing. Double your next batch of muffins and show up at their door. Give her your phone number and let her call when they need to talk. Inquire how their child is doing. Use your imagination. Any small gesture will be
a great blessing and incredibly appreciated.
Spring is in the air and with it, comes thoughts of summer. Parents know they have to
plan well in advance to get their kids the best camps to meet their needs. A wonderful program that teaches kids with disabilities to ride a bicycle is iCan Shine. Formerly called Lose The Training Wheels, iCan Shine partners with local organizations and individuals to conduct over 90 iCan Bike programs in 32 states and 2 Canadian provinces, reaching 2,500 kids with various disabilities, including autism.
About eighty percent of the participants are able to ride a two-wheeler independently by the end of the 5 day course. The remaining kids reach their highest level of ability and are poised to keep progressing after the program ends. iCan Shine expects to add 300 more programs in the next five years, and expand its offering to include other activities such an iCan Swim starting in 2014.
Last year, my then-sixteen-year-old, multiply-disabled son decided he finally wanted to learn how to ride a bike. I was daunted because he was physically larger than me at that point and I had no clue how to be his teacher. I signed him up for iCan Bike and it just a super experience. He was the oldest kid in the program, but didn’t care.
Each participant is assigned two spotters to be their personal coaches and helpers. Instead of the usual training wheels, each bike was fitted with heavy rollers than look like rolling pins. These stabilize the bike and give the rider the actual feel of the road. Over the five days the pins get progressively thinner until they are removed altogether on the last day.
Along the way, the kids also ride bicycles built for two with their spotters. On the final day, the children "launch." What a joyous and heartwarming experience it is to witness once awkward children confidently riding their bicycles independently! And the more severely disabled children are equally-thrilled with their new level of confidence and ability.
My son rides his bike every day now, reveling in the fact that he has his own means of transportation. It’s been just great for his self confidence and physical health.
I cannot recommend this program more highly. The people who run it are super- well organized and devoted to their cause. Their volunteer spotters are awesome and their scholarships are very generous.
A pair of articles about autism and depression have captured my attention recently. The first involves a study published in JAMA Psychiatry in which researchers from the
Harvard School of Public Health examined medical records from 50,000 women enrolled in the Nurses’ Health Study II and found that those who experienced the most physical, emotional and/or sexual abuse as children were 60 percent more likely to have a child with autism. Twenty-five percent of the queried women fell into the top group of the severely abused — a large percentage.
The study doesn’t prove causation, but does note a correlation between the long term mental health of the mother and the well-being of her unborn child. Speculation is that severe abuse has lasting effects on a woman’s immune system or stress response system that leads to more risk for her unborn child. One person went so far as to suggest a woman who has suffered severe childhood abuse should think twice about having children.
While not discounting the risk factor, I think that is an extreme reaction and in effect, punishes the victim twice. Many victims of childhood abuse
become wonderful mothers. Intent on rewriting their personal history, they become the mother they wished they’d had.
This study is reminiscent of a previous one in which Dr. Gabor Mate postulated that mothers who are depressed after the birth of their child expose them to high risk of developmental disabilities, even inducing autism.
While I honored the effect of a mother’s depression on her child, I believed it to be one of many “environmental toxins” that contribute to autism, not a sole cause. All autism mothers know it’s easy to forget about taking care of yourself in your quest to take care of your autism spectrum (AS) child. Self-care can become a lofty goal instead of a daily habit. I know my children are hypersensitive to my mood to the point where they actually mirror it.
The other recent article I read about autism and depression involves a new study appearing in the January issue of Research in Autism Spectrum Disorders which concluded that children with autism have much higher rates of suicidal ideation and suicide attempts than their neurotypical peers. The body of data is summarized in
Susan Dickerson Mayes, PhD, from the Penn State College of Medicine in Hershey, and colleagues determined the risk factors for and the frequency of suicide ideation and attempts in 791 children with autism (aged 1–16 years), 35 depressed children without autism, and 186 typical children. The researchers found that suicide ideation or attempts were rated as sometimes to very often a problem by 14% of mothers of children with autism, a rate 28 times greater than reported for typical children (0.5%) but lower than the rate reported for depressed children (43%). Four demographic variables: age ≥10 years, Black or Hispanic, lower socioeconomic status, and male sex were significant risk factors of suicide ideation or attempts among
children with autism. Suicide ideation or attempts were experienced by 71% of children who had all four demographic risk factors. Depression, behavior problems, and being teased were the co-morbid psychological problems most highly predictive of suicide ideation or attempts, with nearly half of children with these problems reporting suicide ideation or attempts.
Once again, we see autism mothers suffering from depression at a higher rate, which is only logical given the stresses of raising a child on the spectrum. It stands to reason that poverty would exacerbate an already difficult situation, limiting a family’s access to autism services.
Being a boy is a no-brainer, since the common wisdom is that boys are more prone to autism, although Dr. Tony Attwood might disagree
But I am wondering how exactly depression, behavior problems, and being teased are co-morbid psychological problems independent from autism. My experience is that most “behavior problems” are symptomatic of surrounding adults punishing the symptoms
rather than addressing the root causes and triggers of the AS child’s behavior.
We know that being teased is frightfully common among individuals with autism. In fact, autism makes a child twice as likely to be bullied at school. And unfortunately, some of these bullies are teachers and administrators ignorant about autism who try to use overwhelming force and/or shame to bring a child into compliance. So if “depression, behavior problems, and being teased” is most highly predictive of suicide ideation or attempts, we are in serious trouble, because from where I sit, they are part and parcel to having autism.
These articles constitute another clarion call for more support for autism families and more education and training within our schools to deal with the exploding number of autism cases. It’s hard to even voice this, but I think the prospect for real change is grim.
Given the fact that we can’t even account for the number of special education children severely injured or killed across our nation, nor even generate a national law concerning the use of restraint and seclusion in our schools, it feels like our kids are considered to “get what’s coming to them” for not behaving properly. I doubt their vulnerability to wanting to take their own lives will be considered the national health crisis that it is.
Vancouver-based video game designer Taylan Kadayifcioglu, who goes more accessibly by Taylan Kay, has created "Auti-Sim," a video game that demonstrates what it is like living with hypersensitivity common to autism. The essence of the game is this: As the user walks around a playground, other children laugh and play on the equipment. However, anytime the user gets too close to the crowd, the situation becomes overwhelming. Suddenly, the children’s laughter turns loud and cacophonous and their faces become abstractly distorted. The user can then escape the situation by moving to a quieter, more secluded area of the playground.
The game was created in merely twelve hours at last month’s Vancouver’s Hacking Health Hackathon, a conclave devoted to applying technology to health issues. Truth to tell, it looks like it was a one day project. But hats off to them for the idea. Moving forward, the graphics will surely improve.
Mr. Kay is also taking criticism to heart that no one with autism with was included in the game’s design team. As their
project continues, they have pledged to remedy that problem. They intend to illustrate autism comprehensively in an expanded game that will be made available to the public for free.
This is a very creative and generous act. While video games have been made for individuals on the autism spectrum, this is the first time
someone has tried to generate awareness and empathy from the neurotypical population through this universal and thus powerful medium.
Realizing I was my own answer to my plea, I contacted Dennis Debbaudt, founder of Autism Risk & Safety Mangement, law enforcement expert and world leader in educating police departments on autism.
I previously mentioned Mr. Debbaudt in a recent story as a ray of light in the ongoing hardships of individuals with autism clashing with law enforcement and contacted him through his website. Within an hour, he answered that he has contacts in Alton, Illinois and will have them get the word out to the chief of police.
This site has previously been in touch with Mr. Debbaudt in the past and even did a podcast back in 2007 regarding his specialized training and services. That interview that can be heard here.
Words cannot describe how relieved and appreciative I am that this horrible event will become a teachable moment for the police department of Alton, Illinois.
In yet another horror story of schools and police criminalizing autism, an eight year old girl at Lovejoy Elementary School in Alton, Ill., was jailed for over two hours by Alton police because of tantrum behavior. The youngster, who suffers from autism, anxiety disorder, and depression threw a fit at school and was screaming and kicking. Her uncle, who is also her guardian was called to the scene and was en route to the school, but before he could arrive, administrators called 911. The child was handcuffed, and shackled at the waist and feet. Her uncle maintained she asked to use the bathroom at the police station but her requests were ignored. They gave her nothing to eat or drink and she was in custody for two hours. When she finally came home, her eyes were swollen from crying and there were welts around her wrists from the handcuffs.
The school district of Alton is nowhere to be found in the aftermath of this appalling episode. The police captain has come forward with a disturbingly adamant statement about the correctness of the police response. We need to have some way to intervene in these situations and demand that schools and police departments be educated in autism and the correct response to an child who is out of control.
Meltdowns," a guide issued on Tony Attwood’s website should be mandatory reading from all police departments and schools.
This madness must end. Our children’s emotional health and well-being, and personal freedom are at stake.
As an older sister to a young man with autism, it’s important for me to connect with the autism community. I maintain friendships, read and write posts, give talks, and try to keep up with research findings too. And so, while reading a recent essay on autism causes and treatments, I recognized a description of one of my brother Willie’s former doctors.
In that moment, I had a taste of what it must be like for parents and caregivers whenever well-supported scientific studies seem to contradict one another. Whenever we as a community are left with more questions than answers, it’s hard to know what information to trust. At best, it makes us second-guess our every move. At worst, it makes us feel like failures for not knowing who, or what, to believe.
To be sure, I’m thankful that we live in a world where autism research and learning is continuing and evolving. It’s vital that we add to our knowledge and that we work to ‘unlock the mystery’ that is autism. And of course, we need to use good judgment and value each person’s health and safety. However, it can be difficult for families — emotionally, interpersonally, and financially, when a treatment they’ve tried is debunked by the scientific community.
What emotions may come up in such cases? Here are just a few…
Shame. When I spotted the reference to my brother’s former doctor, I immediately felt foolish; why had I trusted that the treatment was the right course for my brother? Had our parents been too credulous? Had we missed significant warning signs?
Should my family and I have ‘known better?’
Hurt. After the first flush of shame, I noticed that the brief account was rather one-sided; for example, there were no details provided about individual experiences with this physician’s protocols. And there was no mention of individuals like Willie, people who have been helped by this particular practitioner. And I thought, why have their stories been excluded? This led to …
Anger. I was upset that this author had casually disparaged a treatment that has been helpful for my family, and others like us.
I wanted to ask the writer: Do you know what our lives have been like, dealing with aggressive and self-injurious behavior on a regular basis? And when you discredit this doctor and his treatment, do you really have a viable alternative?
Do you know that no ‘conventional’ treatments have helped my brother, and many of them have made his behavior much worse? Do you realize that our parents have carried on for over a decade with no real answers, no fully successful treatments, and a young man who causes physical harm himself and others?
My anger burned hot, but when it cooled, I came to …
Peace. Real peace comes from knowing that no one has all the ‘right answers’ about autism (the author of the article I was reading rightly noted this as well). We are all doing the best we can with what we have. Since modern science can’t supply every answer, we have to make our best guess as to what is ‘the next right thing’ for our loved ones. And of course, this uncertainty makes us feel defensive and insecure at times and we are vulnerable to criticism, in need of tender care and encouragement along the way.
Since autism is such an individually-specific condition, what is right for one may not be right for another. Some individuals and family members may decide that an intensive therapy or dietary change is in order. And in turn, some families may come to see that everyone is better off without additional treatments.
We make these decisions to the best of our ability, in partnership with our loved ones on the spectrum. And at the end of the day, we have to believe that is enough.
ABOUT THE AUTHOR
Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism and intellectual disabilities (and empowering caregivers to do the same). Her new Kindle Single, I Was a Stranger to Beauty (ThinkPiece Publishing) is now available on Amazon. Readers are also invited to receive a complimentary copy of Caroline’s digital book, Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive) via her
Scientists at the University of Queensland, Australia, have found that “the presence of an animal can significantly increase positive social behaviors in children with autism spectrum disorders (ASD)”. Their recent study compared how 5-13 children on the spectrum interacted with adults and neurotypical peers in the presence of two guinea pigs compared to toys. In the presence of guinea pigs as opposed to toys, the ASD children showed increased social behaviors such as being more talkative, looking at faces, and making physical contact. They were also more receptive to social advances demonstrating an increase in smiling and laughing. Concomitantly observed was a reduction in frowning, whining, and crying. On the basis of their findings, this study recommends that animals be used more in classroom and therapeutic settings to the promote social interaction for children with autism.
This is a study after my own heart. It leads me to wonder what would happen in various play therapy settings that are toy-centric if an animal was introduced to the mix. Certainly, a classroom pet that could be held at given times by individual children would be extremely beneficial in a self-contained or inclusion setting, and could even be written into an IEP. And hopefully , this scientific affirmation of the power of animals to soothe and relax a child with autism will also lead to more service animals being allowed in the classroom.
As noted previously on this site, the battle for
autism service dogs in the schools rages on. As of now the IDEA (Individuals with Disabilities Education Act) is silent on the subject, and from that void a wide range of standards emerge, typically coming down of the side of schools opposing the perceived inconvenience of a service animal in their midst. Parents frequently have to hire lawyers to fight for their child’s rights to have a service dog at school.
Sometimes, the verdicts have been against parents because their child has a one-to-one human being to aid them already. No offense intended to aides, but a service dog is the child’s around-the-clock companion who renders unconditional love, never chides, scolds, or makes demands. Plus, having a dog is cool and attracts enthusiastic classmates. In the wake of massive “Sequester” cuts, special education aides are on the chopping block, which leads me to wonder how this will affect the service dog issue.
It would be nice if there’s some silver lining to the impending budgetary doom.
All autism parents feel anxious about their children in the community, knowing they could be perpetrators, victims of crime, or wanderers. Far too often, criminal actions on the part of Autism Spectrum Disorder (ASD) individuals are provoked by school administrators and/or police officers not understanding the signs and manifestations of autism. A recent case in point is the ridiculous incarceration of a young man selling packs of sugar at
Common reasons for ASD people to run afoul of the law include:
• Deliberate exploitation by others
• Aggressive behavior brought on by disruption of routine, sensory overload, etc. or the police encounter itself.
• Anti-social behavior due to their lack of knowledge of reading and following
• Obsessions (such as a computer programming obsession leading to hacking charges)
• Fleeing the scene of the police encounter
While ASD people as a group commit no more crimes than any other group, they have much less comprehension of the consequences of their actions. Once in police custody, individuals with autism can be treated more harshly due to their seeming lack of cooperation or remorse. They may confess to crimes they did not commit in an effort to please the interrogator. Thrown into the general prison population, they become a
ready target for abuse. Once out of prison, the transition back into society is more difficult for them than the average felon.
A reader shared with me her frustration in trying to find housing for her ASD son, who is soon to be released from jail on a felony charge largely attributable to his disability. A group housing affiliate stated that they would consider housing an ex-murderer but couldn’t consider her loved one due to his “legal type problem.” Hence, an ex-murderer would be afforded a second chance that her son would not. Her righteous reaction is that anyone with a mental health, developmental disability or autism spectrum diagnosis should have access to reasonable accommodations under fair housing laws, regardless of having a felony. No one trying to re-enter society after prison should be put at risk for homelessness or recidivism because of their disability.
While crimes committed by ASD individuals can be unfairly attributed to their disability (as in the case of the Newtown massacre), individuals on the autism spectrum are statistically more likely to be a victim of crime than commit one. It’s estimated that ASD individuals are four to ten times more likely to be victims of crime than their neurotypical counterparts. Police, social workers and other intervening entities need to handle ASD victims with particular care so as not to traumatize them further. Autism Society has created a series of downloadable pamphlets addressing important issues confronting professionals, victims and their families that can be downloaded here.
And then there’s every autism parents’ nightmare — wandering. We have discovered that even incidents of wandering that end happily can turn to disaster when overzealous child protective services break up families in the name of saving them. The case of Ayn Van Dyk, the Canadian child who was seized and held for over a year is but the tip of the iceberg of institutional injustice against autism families. The trauma inflicted is incalculable.
Against this dire backdrop, it is indeed heartening to discover more momentum gathering behind educating and reforming the criminal justice system when it comes to autism. A lengthy and detailed article at a police website addressed autism and law enforcement in all its aspects can be found here.
Dennis Debbaudt of Autism Risk & Safety Management is a career police officer, a father of a son with autism, and a trailblazer in making the world a safer place for our children with autism. Through his many training and outreach programs, he is the perfect liaison between law enforcement and autism. His website contains a plethora of downloadable information (parents of teens may be particularly interested in his materials about autism and driving). Also heartening, more and more police departments are creating voluntary autism registries to aid in the recovery and soothing of wandering children, or to defuse potentially charged interactions with
ASD individuals in their communities.
There are things that we as parents and caregivers can do for our children. Coach your child on what to do if stopped by a police officer. Play act possible scenarios. See if your community has an autism registry that will give first responders a personal approach to helping your child if they wander or get stopped for jaywalking or some reason. And have your child wear a medical alert tag identifying their disorder.
As we keep pressing for more reform in the world at large, we can make our corner of it safer for our children.
In another episode of “World Gone Mad," a sixteen-year-old Ohio boy has been jailed for allegedly trying to sell sugar packets at school. Conceptualized as a practical joke, the teen took sugar packets from the cafeteria and transferred them to a soda straw wrapper, telling classmates it was a “secret sugar rush concoction." Punishment was swift and ludicrous. The St. Mary’s Memorial High School student was arrested on probation and taken to jail under the school’s zero tolerance policy stated in their handbook:
“In conjunction with the board policy, the St. Mary’s City Schools are a drug free zone and the Board of Education has zero tolerance for substance abuse or possession on school property. The school will cooperate fully with police investigation including but not limited to the use of canine patrol programs subject to the Board of Education policy.”
The boy’s parents were duly outraged, his father issuing this statement:
“He attempted to sell this as his secret sugar rush concoction. His maturity and emotional development is somewhere around the level of a 10 year old or 11. It was very obviously sugar, within a wrapper, candy wrapper. They knew they weren’t dealing with any drug. My son totally uprooted and slammed into jail over a sugar packet is completely unacceptable to me.”
According to the boy’s mother, this is the second time the school has had her son arrested over a “frivolous matter.” These kinds of so called “Zero Tolerance Policies” are responsible for a bevy of other absurd incidents, such as these:
* A fifth-grade class in California, in a gesture to support our troops fighting overseas, put toy soldiers on their graduation mortarboards. School officials forbade them from doing that unless the gun barrels were removed. Education officials pointed to a California weapons law.
* A kindergarten student in Rhode Island was suspended for bringing a plastic knife to school to cut cookies.
* A Utah boy was suspended for giving his cousin a cold pill prescribed to both students.
* At Kilmer Middle School in Virginia, every type of student touching was banned, including handshakes, high-fives, and pats on the back.
St. Mary’s Memorial High School declined comment. The Miami Valley Crime Lab is analyzing the offending sugar packet.
When will cooler heads prevail and the impulse to protect our children be tempered with common sense, especially when dealing with our special needs population? For any child to be subjected to such treatment is traumatic, but all-the-more so for one with autism. To ignore the extenuating circumstance of autism shows just how much work remains to be done within our public schools to bring officials into the twenty-first century.
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Once again, our nation has been rocked by another young adult conducting a murderous rampage that ends multiple lives, including his own. My heart sank when the shooter in the latest tragedy, Elliot Roger, was identified as having Asperger’s Syndrome (AS). Barely past Sandy Hook with Adam Lanza, and now this. Even with some news […]