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.
Researchers at the University of Texas, led by Professor Mark O’Reilly, have declared that Sensory Integration Therapy (SIT) is scientifically ungrounded and should cease to be used by a majority of occupational therapists in the treatment of autism spectrum disorders (ASDs). Since many agencies are mandated to use only scientifically-proven methods, they advocate that Applied Behavioral Therapy (ABA) should be the sole therapy employed.
Noteworthy is the fact that this university is among the few that offer certification in ABA. O’Reilly’s conclusions are supported by recent statements by the American Society of Pediatrics disparaging SIT as scientifically unproven. So say goodbye to weighted blankets, swings and bouncy balls and say hello to rote repetition of desired skills.
Now I realize that ABA is a viable therapy for autism and is proven to establish age-appropriate, desirable behavior but does it really need to supplant SIT?
Experts see danger in SIT because they deem it rewarding of undesirable behaviors. Act out and you get to go sit on a bouncy ball and not complete that loathsome math worksheet. And offering pleasant distractions from performing desired tasks messes up ABA therapy when used concurrently.
My hackles are now up. Full disclosure, my child never had ABA. His life may have unfolded much differently and better if he had. But he did have an overabundance of individuals who felt his spectacular meltdowns were gross manipulations in order to get out of doing something unpleasant. And what I reiterated until I was blue in the face was that my son wasn’t trying to get out of the work itself, rather the extreme
anxiety the work induced. There’s a term for this: Pathological Demand Avoidance, a condition in which the everyday demands of life induce unbearable stress.
My son was hospitalized twice for anxiety, during which time he would spend the entirety of his psych ward school time convulsing because he
couldn’t bear math worksheets. It broke my heart but the staff maintained that he would “flame out” and eventually perform the tasks, but the grand progress cited was a reduction of 5 minutes in fits by the end of his two weeks in lockdown.
The fact is that some children need to be soothed before they can be educated. A total of two teachers in my son’s eleven years of school appreciated this. His time in their classrooms were halcyon days of productivity. Yes, he sat on a couch instead of a desk, and from that couch he could actually focus and absorb what the teacher was saying. Yes, if he started to get anxious, he could go for a walk but he did so before he exploded and came back calm and ready to get back into the flow. These strategies weren’t coddling, they were accommodations that worked.
I sometimes despair at the chasm between those who scientifically study autism and those of us who are actually in the trenches. Techniques I learned from SIT were life lines. One of the blessings of my neighborhood is that we live close to a park with swings. Swinging was the fastest way to calm my son. And what would I do if I couldn’t lay his heavy blanket over him at home, bringing him instance peace? His public outbursts were cut by more than half after I purchased noise reducing headphones.
Now that he’s sixteen, the headphones are hooked into his iPod. Just last week, I took him to the dentist and cringed when I heard him shrieking inside. His doctor emerged to report that as soon as they put a weighted blanket on him, he was fine. Some things never change.
Maybe what you know can’t be scientifically proven, but the truth of it remains…
The latest big autism story is a new study by University of Connecticut psychology professor Deborah Fein that claims some children with autism can not only lose their diagnosis as they get older, but become indistinguishable from typical peers. Fein assessed 34 adults who had been given an autism diagnosis as children, many of whom had received behavioral interventions and were deemed to have “optimal outcomes.” As young adults, the study subjects were found to have “no current symptoms of the disorder” and to be “functioning on a par with their mainstream peers.”
This has led to an onslaught of headlines about children “outgrowing autism” and becoming "cured." While initially reticent to open this Pandora’s box, I have felt increasing compelled to put in my two cents worth on the controversy.
First of all, while this premise may never have been scientifically proven before, it is not fresh news. I remember listening to Dr. Tony Attwood roughly seven years ago as he described high functioning autism existing on a spectrum from severe dysfunction to becoming a personality trait. This is not a passive experience of merely “outgrowing” something as you would the myriad immature behaviors of childhood, but an active and sustained
effort over the course of years to resolve problematic issues inherent in having autism. Significant is the fact that the study subject had all engaged in intensive behavioral therapy which help them to adapt to the neurotypical world, or “play the game," as it were. While in no way disparaging behavioral therapy and successfully functioning in the larger world, this is not indicative of no longer having autism. A high functioning person with autism still carries the joys and burdens of it for life. They may shed a clinical diagnosis, but autism is still the prism through which they experience the world.
This leads us to another issue. Many consider autism a source of pride and would no longer shed it than they would an ethnic heritage or distinctive physical trait. This brings to mind a time when one of my high functioning twins was asked to write a two page essay on what it’s like to have a disorder. He wrote the single sentence, “It’s like having brown eyes." That phrase is enshrined in my heart and mind.
Like the subjects of the test, my son passes for "normal," is successful in school, beloved by his high school teachers. But the myriad social interactions and pressures he successfully fields each day leave him utterly exhausted in a way his neurotypical peers will never experience. While he has acquaintances in his classes, he true sense of belonging is derived from the Robotics Club, where he gathers with
other "nerds." He still gets a PE exemption from the agony of team sports and will never go to a school football game. Is he proud to have shed the identity of being autistic, that he passes for neurotypical? Yes and no. He doesn’t want to be defined by his autism, but he is very proud of the distinct gifts it bestows, his unique take on the world, his piercing intellect when it comes to his special interest.
He is at peace with himself.
I believe the take away from the Fein study is but a confirmation that within the course of a lifetime, all children with autism can and will grow and change within their personal, idiosyncratic spectrum of possibility. Studies like this can raise hopes of a “cure” and subsequently dash the hopes of parents whose kids don’t experience similar outcomes. Concomitant feelings of regret are a risk. “If-only” mantras could
afflict parents who didn’t give their children intensive behavior therapy as the “successful” test participants reported. For what it’s worth, my son never had behavior therapy and didn’t even have early intervention.
There is no rubric for autism parenthood, just unconditional love and devotion.
Seattle theater artist and playwright, Lauren Marshall, has developed an amazing class for both neurotypical and special needs children. Entitled “Theater of Possibility," Lauren synthesizes what she has learned as a mother of two daughters on the autism spectrum with Relationship Development Intervention (RDI) and “Theatre of the Oppressed," a movement that employs theater as an agent of social change.
RDI is a parent-based therapy that addresses core deficits of autism such as emotional referencing, social coordination, flexible thinking, declarative language, foresight/hindsight and relational information process (the ability to solve problems that have no right or wrong solution). Having realized the shortcomings of ABA (Applied Behavioral Analysis) in creating more than mimicked skills in her daughters, Lauren turned to RDI to fill in the “why” of performing social behaviors. For instance, her theater games require participants to utilize eye contact and read facial expressions in order to know what to do next, teaching non verbal communication in a playful, effective manner.
Lauren also infuses her curriculum with the principles of Augusto Boal, the Brazilian founder of “Theatre of the Oppressed” who maintained that “oppression is when one person is dominated by the monologue of another and has no chance to reply." He created the concept of using theater as a means of empowering audiences and performers alike. The heart of Boal’s work is the spect-actor, the audience members who are asked to join in problem solving the dilemma presented onstage. Major techniques of “Theatre of the Oppressed” that Lauren draws upon include:
Forum Theater – A problem solving technique in which an unresolved scene of oppression is presented. It is then replayed with the audience invited to stop the action, replace the character they feel is “lacking power”, and improvise solutions. This structure can be used to explore past and current situations, or as a rehearsal for a future event.
The Cop in the Head – Techniques that help individuals explore the internal voices, fears, oppressions that prevent him/her from living fully. Rather than focus on external oppressors (“cops”), these techniques bring to light the “cops” inside one’s head.
The Rainbow of Desire – A technique which deconstructs one person’s story of tension in a relationship – parent/child, employer/employee, lovers, friends, etc. Using Image Theater, we then identify and bring to life the various conflicting emotions — the fears and desires that are happening inside the characters. The process very quickly goes beyond the individual story into an exploration of the group experience
and the “rainbow” of who we are.
Lauren’s ability to bring together kids with diverse needs and have them work harmoniously is an outstanding part of her class. Neurotypical kids and those with various degrees of challenges strike a chord of true mutual understanding and appreciation.
My sixteen-year-old son has never fared well in the classroom setting and when I sent him off to the first meeting of Theater of Possibility, I fully expected a cell phone call telling me to come get him soon after I left. Instead, at the end of the class I heard “what a joy he is to work with!” I couldn’t believe my ears. When his class gave its final presentation, my other son balked at having to attend, but soon he was joining in onstage, having the time of his life. He signed on for the next session.
When our kids thrive at something they attempt, it’s a such a joy. Improvisation affords them the opportunity to learn social skills obliquely and act out their inner lives instead of acting out.
Of all the sad autism stories I have encountered, perhaps none has haunted me more than that of Ayn Van Dyk, the ten year old Canadian girl who was abducted from her school by Canada’s Child Protective Services. As this site has documented in the past, Ayn had been successfully found safe and sound after a wandering incident at her home, but authorities seized her and put her in state custody “to lighten the load” of her single father of
While in custody, she was heavily drugged on anti-psychotics as her frantic father Derek, fought tirelessly for her release.
So it was with great trepidation that I recently set out to learn what had become of her in the many months since I had followed the story. To my great and utter delight, the Freedom for Ayn blog has reported that the family’s horrible ordeal of more than five hundred days is now drawing to a close. Ayn is coming home very soon.
While details are scant, it appears that her father finally had his day in court.
In a time when we’re overdue for good news, this is indeed a candle in the darkness. Ayn won’t be the same little girl who wandered out of her yard so long ago and the damage to this family has been done, but at least now the recovery and healing can begin.
For more details on Ayn’s story, here’s a timeline of previous posts that shed more light on her and her family’s plight:
Yes, Ayn is coming home to her daddy and 2 siblings. Derek, however, did not receive his day in court… Actually, MCFD entered with a deal to avert a trial just days prior to a scheduled hearing. An agreement was reached in which the Ministry conceded, no finding of need to intervene existed! More than a year and a half has transpired since the nightmare began; an unacceptable delay of justice.
The story of Derek Hoare and his little girl, Ayn, is a tragic one; one that sadly, is afflicting many Canadian households: Children with disability, such as Autism, are being herded under the scope of Child Welfare Intervention despite absence of negligence or abuse.
SAMANTHA’S LAW in the neighbouring Province of Alberta could have averted this tragic demonstration of Ministry’s ignorance towards the disabled community in British Columbia. Caring families dealing with issues of medical and developmental diversity must be handled distinctly from the Child Welfare Intervention Model.
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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 […]