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 many out of pocket expenses. Educational instability generated by schools unable to provide a safe learning environment creates tremendous hardship as parents relinquish employment to home school their child, or move them to private schools in search of the elusive best case scenario. Relocation to other states is frequently necessary to track down more generous insurance, autism services and competent school systems.
Having personally endured harrowing financial hardships raising my twins with autism as a single parent, I recently found a measure of peace through successfully attaining Social Security Insurance (SSI) for one of my sons. This is disability insurance that pays a monthly amount of about $700. You have to be in dire straits to receive this money before your child turns 18 because the family income is then included as a determinant of eligibility. However, after your child turns 18, family income is no longer counted, and your child receives that income even if he lives with you indefinitely. The application can be done over the phone in an hour and a half. Releases are signed so you don’t have to submit hard copy records. It takes up to 6 months for the application to be processed and you receive three months back payment in a lump sum, a nice reward for your patience.
After your child turns 18, you as the parent can also apply to his paid caregiver, receiving a paycheck for between 30 to 200 hours per month. Pay is low, of course, ($10/hour plus 7 hours of paid training), but why not be compensated for what you already have done around the clock for the last 18 years?
Another door that opens is Vocational Rehabilitation, a service that identifies your child’s employment needs and helps them to achieve them. Some cost is involved unless your child is on SSI. This program does not pigeon hole your child in menial, repetitive tasks, but truly supports whatever their individual needs may by paying for higher education and/or training programs and the supports that may entail, like transportation or a personal aide to attend classes and help them navigate their day.
If you need help, avail yourself of it. God knows, you’ve earned it.
Some upsetting news has emerged for families of individuals with autism and other special needs who plan to visit Disney World or Disneyland anytime in the foreseeable future.
According to Mice Age, the widely popular Guest Assistance Card (GAC) program, which helped accommodate guests with special needs, is set to discontinue at the beginning of next month. The GAC previously allowed an individual with special needs and up to five other guests to access the “FastPass” areas, by-passing many of the long lines in the process. The card did not guarantee parties would skip every line, but it was a huge relief for those who were unable to wait in long lines due to their physical or developmental issues.
The GAC program will supposedly be replaced by something called the Disabled Assistance System (DAS). Without getting into details on the DAS (including the poorly chosen name), it appears to be a very bad alternative that will severely impact the overall experience of special needs families who visit any of the Disney theme parks.
There’s speculation that the planned changes are due to rampant abuse of the system carried out by able-bodied individuals. Due to
health privacy laws, Disney Cast Members were not allowed to ask for medical documentation for those requesting a Guest Assistance Card, essentially turning the program into an honor system. As one would imagine, this led to some series abuse, and perhaps the straw that broke the camel’s back occurred earlier this year when the Today Show did an embarrassing exposé about families hiring "disabled tour guides" from Craig’s List, who would accompany them on trips for the sole purpose of obtaining a GAC. That sickening story can be watched below.
These developments are upsetting on so many levels, and it would be very easy to direct one’s anger at Disney for making these changes. Ultimately, however, the anger should be directed towards the shameful individuals who abused this system that led to these planned changes in the first place. What these selfish people don’t realize is that most of us would gladly exchange the struggles we face with having to wait in long lines at Disney.
We live in Florida and were actually considering renewing our annual pass for Disney, but these planned changes to the GAC program pretty much make that decision easy. There is no way we could have a meaningful or enjoyable experience at these parks without some way to avoid excessive wait times. It’s the reality of our son’s condition.
For those who want to do something about these planned changes, there is a Change.org petition that can be signed here. Tell Disney not to throw the baby out with the bathwater and to find a better solution to accommodate special needs families, while simultaneously weeding out the fraudsters in the process.
Seattle Children’s Hospital was forced to pull its new ads from King County buses after complaints about its call to eradicate autism. The cherubic face of a young boy gazed out from the side of a bus which read, “Let’s wipe out cancer, diabetes and autism in his lifetime.”
The juxtaposition of autism with tragic and often fatal diseases captured the attention of The Autistic Self Advocacy Network’s Washington chapter (ASAN-WA), who in turn organized an online campaign to galvanize opposition to the message.
Seattle Children’s received scores of emails, phone calls and comments on its Facebook page and subsequently pulled the ad last Friday, posting this comment: “We are sorry for the hurt and anger these ads have caused – that was never their intent."
Just like Autism Speaks with its "I Am Autism" video a few years ago, Children’s Hospital made a similar gaffe in not respecting the broad spectrum that is autism.
As Matt Young, co-leader of ASAN-WA put it, “Autism is a disability, but it is not a disease. It is not a life-threatening illness. The idea it’s a state to be wiped out has much negative impact on our lives.” ASAN champions the notion of "neurodiversity,"or autism as a burden/blessing of having your brain differently wired.
Incidents such as these serve to re-ignite the debate between viewing autism as a disease to be cured versus a disorder to be respected. Parents of low functioning, self-harming children would do anything to cure their children of autism, while at the high functioning end of the spectrum there is more concern for civil rights and equal opportunity.
But at neither end of the spectrum is autism regarded as a life-threatening disease, even though children with autism are more vulnerable to calamities associated with their disorder, such as wandering. Fairness calls for accuracy and Seattle Children’s was rightly criticized for not demonstrating an appreciation of the nuances of describing autism.
On Monday, Katharine Fitzgerald, director of marketing and health promotion at Seattle Children’s said: “It’s been difficult because we do so much to support children, teens, and families affected by autism here at Seattle Children’s, and we’re doing amazing research at our research institute.”
Children’s Hospital also boasts a "cutting-edge" Autism Center. The bus ad was intended to raise awareness for Seattle Children’s Research Institute and reflect the “breadth and depth“ of the institute’s research arm, according to Fitzgerald.
They certainly raised awareness, but not the way they intended. Like many others before them, they are now aware of what a minefield it is to address autism from a solely problematic perspective.
If you have a school-aged child, it’s highly likely that you’ve already heard of Minecraft, an interactive, online game that allows players to build and create textured cubes in a 3D, virtual world. Other activities include exploring, gathering, crafting and combat. To date, there are over 11 million players worldwide, with those numbers rapidly increasing by the day.
Because of a user’s ability to play Minecraft in a “multi-player” mode, those with autism can highly benefit from it by developing their communication and social skills, as well as enhancing their creativity at the same time.
These benefits have not been overlooked by Stuart Duncan (aka AutismFather), an autism advocate from Canada who is best known for his online advocacy through blogging and social networking sites. Duncan has even guest blogged on this site in the past.
Last month, Duncan launched AutCraft, a pet project that is the first Minecraft server dedicated to providing a safe, fun and learning environment for children on the autism spectrum and their families at no cost to them.
AutCraft is a members only group and each user must be “whitelisted” prior to playing. Since its launch a few weeks ago, nearly 500 players have already been added the AutCraft community.
Within the world of AutCraft, no swearing or bullying is allowed and the environment has been modified so no monsters will attack players. This means that users are free to adventure and explore anywhere they want, without the typical “dangers” that exist in the game’s regular modes.
My 11-year-old son with autism recently joined and has loved the ability to play and interact with others.
Due to the rapid growth of AutCraft, Duncan is already considering launching a second server. He has put in a considerable amount of time into this project and is providing a fantastic service for the autism community.
If you would like to have your child’s Minecraft user name whitelisted, visit http://www.AutCraft.com and click the ‘Sign Up’ button, then request an invite.
Because of the time, maintenance, management and server costs, Duncan is in need of sponsors that would be willing to assist him with growing this project. He has set up a donation tab on his site for those who would like to help.
In Autcraft, everyone is equal. There is no young or old, boy or girl, neurotypical or autistic – none of that matters. Everyone is there to learn, explore and have a great time.
Check it out — you and your family will be glad you did.
Recent studies at Vanderbilt University and the University of Rochester reveal a startling discovery about autism. In testing a common theory about autism that overwhelming sensory stimulation inhibits other brain functions, researchers decided to study how kids with autism process moving images. They found that children with autism detect simple movement twice as quickly as their typically developing peers.
Here is the gist of the study: The researchers presented 46 children — 20 with autism and 26 without with short video clips of moving black and white vertical bars. The images appeared in three different sizes and all the kids, ranging in age from 8 to 17, had to do was indicate whether the bars were moving right or left. The scientists ran the experiment twice — once with high-contrast images and then again with low-contrast ones. When the black bars were darker and easier to see, the researchers expected the autistic children to do better, figuring they’d be less inhibited by so-called spatial suppression, a mechanism that makes it harder for typical observers to perceive motion as the things they’re looking at increase in
The autistic children did do a lot better with the higher contrast images than the control group, but not because they lacked spatial suppression, it turns out. As the image size increased, the children with autism were slower at recognizing motion. But at each size, they were still twice as fast as the control kids.
Common wisdom is that autism is a brain impairment, but this finding supports an evolving theory that autism is actually a condition in which the balance between different brain processes is impaired. While this may result in functional problems, it also results in enhancements. Even the enhancements, such as being able to perceive motion twice as fast, can produce a problematic flood of sensory information.
In a college child development class, I saw a fascinating film in which a smiling, loving mother lifts up her newborn baby, who promptly begins screaming. When the film speed was slowed way down, you could see a series of angry, frustrated, harried, expressions on the mother’s face that weren’t visible to the naked eye and made sense of her baby’s outburst.
The conclusion was that so called “vibes” are our ability to unconsciously process these high speed images that comprise a person’s
seemingly static expression. Could it be that the autistic inability to read facial expressions is actually due to the fact that they are reading these high speed messages twice as fast as the rest of us and are overloaded with the information?
Recently, Turkish sociologist Fehmi Kaya declared in numerous Turkish media outlets that children with autism are “atheists due to a lack of a section for faith in
their brains.” He elaborated by saying, “That is why they don’t know how to pray, how to believe in God. It is necessary to create awareness [or religion] in these children through methods of therapy.” Digging the hole even deeper he declared, “Research says atheism and autistic children are linked. Researchers in the USA and Canada say that atheism is a different form of autism.” His organization plans to hold sessions to help autistic children embrace religion beginning this June.
Frighteningly, this man is the head of the Health and Education Associations for Autistic Children in his native land. When I tried the links to articles about his statements, they were all broken. Turns out, after a firestorm of anger he apologized to autism families, all the while never backing off of his initial premise: “The message I wished to give was not about autism and atheism, but to highlight that these children cannot communicate, cannot form empathy, live in their own worlds and are isolated. I meant that we should take them out of their isolation
with proper therapy methods”.
It’s tiresome to hear someone, especially someone with power and influence in the Turkish autism community, declare children with autism constitutionally incapable of empathy, especially when there is widespread acknowledgement that autism spectrum individuals can actually feel other people’s feelings too intensely to cope. And unable to communicate? Certainly, communication skills exist on a very broad spectrum. Is it offensive to give children with autism intensive therapy to sensitize them to religion?
Let it be said that Kaya isn’t making up his ideas out of whole cloth. There is some credence to the idea that the concrete thinking of autism and the propensity of individuals with autism to navigate their world through logical reasoning lends itself to atheist thought. If something can’t be proven, logically it does not exist. In 2011, a study by University of Boston did suggest that those with high functioning autism were ‘more likely’ to be atheists.
Yet atheists are displeased with Kaya as well. According to Carlos Diaz, president of the Atheist Alliance International, “There are scientifically valid methods for treating children with autism, but these have nothing to do with religion. It would be best for the child if treatment focuses on what actually works instead of a highly spurious goal of creating belief.”
My major problem with Kaya is the rigidity of his declarations. In my own microcosm, one of my twin sons with autism is a spiritual quester, and the other an avowed atheist. In reflecting upon what has worked for my one son in his forays into religion, I suggest that more creativity and flexibility is required on the part of churches in order to reach members with autism. My son Jackie attempted a formal worship service at a local church, but the hard-surfaced pews and the sheer formality quickly sent him into a tailspin. He couldn’t sit still and remain quiet and people around us glowered and “shh-ed” him. The end result was us bidding a hasty retreat as he starting melting down.
In contrast, an “Experimental Worship” with stations featuring hands on activities such as lighting candles, weaving a prayer tapestry, asking for a blessing, dropping a stone in a bowl of water to represent letting go of a hurt, etc. was a wild success. As in any environment, accommodation is key.
Discussions of religions are always fraught with peril. That said, I see my one son’s belief in an orderly universe governed by natural laws as his own sense of God. And my other child’s spiritual sojourn as a quest for a spiritual community that accepts him as he is.
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.
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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 […]