It’s no secret that children love animals, particularly those that are found in zoos. And for those on the autism spectrum, this affinity for zoo animals is seemingly compounded due to the comfort and respite they provide. Some zoos have taken notice, even offering special programs specifically geared towards those with autism, making their zoo experiences more enjoyable in the process.
There is plenty of anecdotal evidence that demonstrates the benefits of animals for those with autism and other related conditions, and there are even some studies confirming this fact.
Karin Winegar, author of “Saved: Rescued Animals and the Lives They Transform,” has addressed this phenomenon and was previously quoted in a New York Times article, stating:
“The human-animal bond bypasses the intellect and goes straight to the heart and emotions and nurtures us in ways that nothing else can …We’ve seen this from coast to coast, whether it’s disabled children at a riding center in California or a nursing home in Minnesota, where a woman with Alzheimer’s could not recognize her husband but she could recognize their beloved dog.”
Temple Grandin is another example of how one’s connection to animals can impact lives. Diagnosed with severe autism as a child, Grandin found her passion in animals and animal science, eventually going on to transform the slaughterhouse industry, which now affects the way livestock animals are treated this very day.
As one of our other authors previously noted, our worldview of autism is often shaped by our own personal experiences. With this in mind, there are few things in the past six years of our autism journey that stand out more than the frequent trips to our local zoo. It was during those times when our son’s condition and symptoms seemed to miraculously vanish as he became enthralled and captivated by the world around him. As zoo members and annual passholders, our visits became near-weekly occurrences, with each trip providing something new and different for my child each time.
As the years progressed, our son became increasingly interested in animals, eventually able to identify complex animal names and species classifications. His uncanny ability to identify and classify even the most obscure of animals is something that would impress even the most seasoned zoologist.
Zoos can be therapeutic for many children on the autism spectrum and unlock something unique inside a child. If you have yet to experience the joys of a zoo outing, take the time and plan a trip. You just may discover something new about your child and find out that you have the next Jack Hanna on your hands.
As we all know, the vaccine-autism debate can often be as virulent as the diseases the vaccines are intended to prevent. But equally as rancorous is the debate of whether autism is a disability or a disorder.
The question cuts to the heart of issues from allocation of funding to how individuals with autism want to be perceived by the world.
By definition, a disorder is a set of symptoms or undesirable traits separate from the person who has them. A disorder has no rights under the Department of Disabilities Act (DD Act) or any other legislation. A disorder must be prevented, fought, eradicated and is typically spoken of in highly negative and combative terms.
A disability, however, grants personhood and legitimacy to the person who has one. The DD Act presumes that a person with a developmental disability has the right to self-determination, inclusion in the
community, as well as care and treatment that maximizes the potential of that person with the disability. It specifies that no person with a disability can be subject to a greater risk of harm than to any other person in the general population. Protections for the disabled are offered via the Protection and Advocacy (P&A) system.
There is a huge philosophical divide in the use of the two terms.
Autism Speaks, the fundraising powerhouse, comes down on the side of autism being a disorder. While the organization enjoys a great reputation, many people were highly offended by their “I am Autism”
video that was released several years ago and some questioned their motives in producing it.
The spot created a PR headache for the organization, drawing the ire from many in the neurodiversity movement and elsewhere. The video also gave rise to parodies such as “I am Autism Speaks” and "I am Socks."
Standing in sharp contrast to Autism Speaks is The Autism Self Advocacy Group (ASAN) headed by Ari Ne’eman, President Obama’s appointee to the National Council on Disabilities. Mr. Ne’eman has Asperger’s Syndrome and many people vehemently objected to his appointment because of his professed desire to treat autism as a civil rights issue of honoring “neurodiversity." ASAN’s motto is “Nothing About Us, Without Us” and they are unhappy that Autism Speaks does not employ anyone with autism within their organization.
The website for ASAN is eye-opening. I found them to be opposed to legislation that I thought had sounded like a good idea. For instance, giving “wandering” a diagnostic code to draw more attention to the problem seemed like a no-brainer. But ASAN points out that no one deems wandering to a be a medical condition and a specific medical diagnosis could have the unintended effect of institutions proactively constraining and restraining individuals who might wander. In effect, the code would create an excuse for abuse in schools and residential institutions. As far as alerting rescuers to a missing person, they contend that using the Amber Alert system would be as or more effective than creating a diagnostic
code. ASAN’s perspective is useful in terms of them always being alert for the implications of legislation upon the civil rights of those who have developmental disabilities and I have found their opinions enlightening.
Personally, I think the range of people’s opinions on disability vs. disorder is going to be as broad as the autism spectrum itself. While I fully understand the desire to cure autism, to me it’s a slippery slope. My fear is that concentrating on finding a cure will lead to future abortion of fetuses deemed to be autistic and that would be a tragedy in and of itself.
As the mother of teens with autism, I am profoundly disappointed in the public school system’s ability to address their needs and worry about how they will fare as young adults. Quality of life naturally take precedence in my mind.
However, each person’s autism story and experience will certainly shape their outlook and worldview on the issues that divide us and simultaneously hold the key to us finding common ground.
In an upsetting
story out of the United Kingdom, a 49-year-old mother has been found not-guilty of murdering her 11-year-old son with autism, despite admitting to strangling him in a hotel room back in May of last year.
Yvonne Freaney, a resident of Wales, strangled her son Glen with a coat belt because she "was frightened about who would look after him." After killing her son, Freaney laid down and attempted to take her own life, but was unsuccessful. Prosecutors described her as a "sad, defeated woman."
Freaney was living in the Sky Plaza hotel with her severely autistic son due to alleged domestic violence episodes, causing her to move out of the family’s home. Some incidents were violent enough to require Mrs. Freaney to seek medical attention for her injuries, but she never pressed charges against her husband,
Mark. In fact, during the trial, he was shown to have sent a text message to a friend that read, "I’m a wife beater and proud of it. She deserves it.”
Clearly, the jury showed compassion and spared Freaney of murder charges and this case highlights the extreme emotional stress that parents of children with autism can often be subjected to. Further compounding matters, Freaney’s hotel stays are an indicator of the lack of a support structure around her.
This case is tragic for all involved and underscores the need for respite care for parents and caregivers. While Freaney clearly should have been found guilty of murder, she also should never have been in the position she was in to allow these incidents to occur.
Parents with children on the low end of the
spectrum can often be exhausted physically, emotionally and financially — and for those who are emotionally unstable, it doesn’t take much for them to reach their breaking point.
Freaney is being held until her sentencing on June 10th for the lesser charge of manslaughter.
By now, we’ve all heard that iPads can be very helpful to children with autism, allowing them to communicate desires and feelings in ways not otherwise possible. Gone is the keyboard and mouse as the child now has direct control over the entire interface. The devices are considered “cool” and don’t call unwanted attention to a child.
If you’ve committed to getting an iPad for your child, you already know that it can be a dilemma figuring out which ones are the best and most appropriate.
Speech therapist Lois Brady uses “iTherapy” extensively with her patients with autism and has authored the book “Apps for Autism."
Brady has compiled a list of her most highly recommended apps that specifically address expressive language, which include:
Additionally, for those with PCs, Martin van der Kooij has developed Picto Selector specifically for the
PC, which has also recently become available for MAC. For more information, visit: http://www.pecsforall.com
With so many choices, the world of iPad apps can be daunting. It’s good there are professionals like Ms. Brady who have examined every app under the sun and is able to share her assessment and opinions with
If you would like to hear Ms. Brady compare and contrast these apps you can find her valuable information in the video below:
DIR/Floortime is one of the many time tested therapies available to treat autism and other developmental disabilities. The stated objectives of DIR/Floortime are “to build healthy foundations for social,
emotional and intellectual capacities, rather than focusing on skills and isolated behaviors." DIR stands for Developmental, Individual, Relationship-based, a model that enables clinicians, parents and educators to conduct a comprehensive assessment of an individual and develop a treatment program unique to them.
“Floortime” is a specific technique and a form of emergent curriculum where a child takes the lead in revealing to the adult his or her natural emotional interests. The therapist, in turn, uses that expressed interest to challenge the child towards greater mastery of their social, emotional and intellectual capacities. With young children, this playful relationship literally occurs on a mat-covered floor, but carries over into conversation skill-building and interactions in other environments. Parents are also brought into the equation.
I saw a video on Floortime in which a child who was riveted by a toy and oblivious to her attendant parents, ended up happily sharing the toy with them. A watershed event for the entire family, the child was so excited by these people who’d yearned to connect with her and had regarded it as an impossibility.
Adolescents and adults can also benefit from DIR. In fact, doctors maintain that many individuals with developmental disabilities are prematurely written off in terms of improvement that can be made in their conditions. They point to unconscious reactions in adults to the size of older individuals with developmental disabilities as being a factor. The adult reaction to an angry three-year-old is much different than that of a sixteen-year-old who is acting out. The attending adult wants to address the needs of the three-year-old who evokes their nurturing impulses, while seeking to punish, contain or restrain the teen. Certainly, these forces are at work in public school systems and residential treatment centers, entrapping many needy individuals in a vicious and escalating cycle.
Doctors have also warned that children shouldn’t be labeled “retarded” until three full years of treatment render no improvement. Succumbing to such resignation isn’t necessary when work can be done with a child and their family to improve his or her processing capacities. Striving to remediate specific deficits such as deficient motor-planning and sequencing, which affects function across the board can lead to overall improvement. Working to identify underlying conditions and identifying the strengths and weaknesses within
an individual’s many systems is much more demanding of diagnosticians and therapists, but brings hope to people who in many cases, have been written off, including self-injurious children with autism.
DIR/Floortime’s comprehensive approach is scientifically grounded and effective at improving the quality of life for children with autism. It’s very expensive and that puts it out of reach for my family, but if you have good insurance, it’s definitely something to consider. In addition, these types of services may be covered under your State’s autism funding, grant or scholarship programs: http://www.icdl.com
A groundbreaking survey from the Interactive Autism Network (IAN) paints a picture of grandparents assuming a larger role in the lives of their grandchildren with autism. They are often the first to suspect that a child may have autism and once diagnosed, they have their own struggles in coming to terms with it. Some are resilient, while others confess to having a hard time moving through their grief.
Thereafter, grandparents become immersed in the daily life of the child, even going so far as to have some say in their course of treatment.
Overwhelmingly, grandparents are a savvy group, doing extensive research to empower themselves as an advocate for the grandchild and taking up autism causes.
Among the survey’s findings:
Over 36 percent say they take care of their grandchild at least once a week and about 1 in 5 indicate that they provide regular transportation for the child.
72 percent of grandparents say they play some role in making treatment decisions for their grandchild.
Many say they moved so they could be closer to their grandchild, while 1 in 10 report living in the same household.
A quarter of grandparents report spending up to $99 a month on their grandchild, with some contributing over $500 or $1,000 monthly.
Grandparents are making considerable sacrifices for their child with autism both in terms of money and freedom as they retain the role of caregiving long after they thought it would be over.
While unscientific in that uninvolved grandparents would be unlikely to participate in the survey, the findings
do reveal a trend towards a more tightly-knit extended family, a village forming to help raise the child with autism. This is very touching and heartening to me that at a time when modern life is seeing families more scattered and estranged, autism is bringing them together.
Even more, over ninety-percent of the survey respondents reported that they feel much closer to their grown child because of their grandchild’s autism diagnosis. As in many other areas, this appears to be yet another silver lining for families facing autism on a day-to-day basis.
Much like within neurotypical families, grandparents are often the unsung heroes and deserve much more credit and recognition for their part in dealing with autism.
Many autism families would like to be able to attend church, but have given up on that possibility due to the obvious stress and strain of their child having to sit still for an hour (or more) or properly behave in a children’s ministry. Missing not only the worship aspect, but the support of a church community is difficult and isolating for them. And of course, people of faith want their child with autism to engage in a spiritual
life as well.
In Ohio, a couple versed in social work and special education have created Through the Roof Ministries to train churches to successfully bring everyone into the the fold. And as of late, more churches across the nation are responding to the special needs of families with autism and other issues by creating alternative worship programs for them, or assigning a buddy to help them get through the service.
Inherent difficulties include access as the church needs to buy a van to make sure everyone can come. It’s very labor-intensive and requires a lot of effort by families and volunteers. It also requires grace on the part of the congregation to withstand the inherent disruption. Education is key to fostering this acceptance.
To facilitate autism inclusion in church, one Missouri autism mother has initiated the first conference on “Disability and the Church,” bringing together keynote speakers to address what autism is and how the church can minister to these individuals. Ministers expressing frustration on how to reach the concrete autism mind with such an abstract concept as God will be given ideas on the topic.
My personal experience with these issues began when a friend with sons on the spectrum invited me and my son to her church (his twin brother had zero interest in attending). I hadn’t been to church in a while, but I was up for it because my son was very interested in it at the time.
The first service we attempted was a positive experience because there were different stations you could go to
and engage in activities such as lighting a candle, dropping a stone in water to represent letting go of some personal hurt, receiving a blessing, etc. Active and creative, it went very well for my son and was a great experience.
The next service we tried was a traditional one and he started having an anxiety attack almost immediately, so we had to leave. It was the same dynamic as him sitting still for a lecture in a classroom — he can’t bear statically absorbing the words of an individual addressing a large group. As he put it, "the more interactive, the better."
On Easter weekend, that same church threw a laser tag party for kids of all ages. I knew both of my sons would love it, but my previously abstaining son stood outside and refused to go in while his twin freaked out that they’d miss it. I finally tracked down my friend to bring my stony, red-faced son inside. It worked out and my boys ended up having a blast. It was a turning point for my recalcitrant son who declared it to be “the least churchy church ever!”
The Lord works in mysterious ways, even going so far as to host a laser party for His children and allowing involvement for everyone.
Hopefully, more congregations around the country will continue to follow the examples in Missouri and my hometown and implement similar inclusionary programs in the future.
Beginning Wednesday, May, 25, 2011, the AutismOne/Generation Rescue Conference will begin at The Westin Hotel in the Chicago suburb of Lombard.
The five-day event concludes on Sunday, May 29 and will contain a vast amount of information and resources, as well as give parents and caregivers the opportunity to reach out to each other and recharge their batteries. Over 7,000 people are expected to attend and there is a sense that this could be one of the best conferences of its kind to-date.
This is the third year I have volunteered and wear many hats, which include participating on the publicity team to help raise awareness for the event.
I cannot adequately put into words the number of individuals in so many fields that will be in attendance. For starters, there will be 150 autism experts speaking on six special content tracks. What struck me in the past was how accessible all of these figures were and how down to earth they are. It’s one thing to read
stories about them in the media, but it’s entirely different to actually visit with, eat with and engage those who are involved in fighting and asking for answers on behalf of the autism community.
I have been awarded a Buick Enclave by the good folks at General Motors to drive to Lombard and will be surprising some families at the airport. Additionally, I will serve on the security, introduction and auction teams, helping to set up various
events. I’ll be attending as a featured blogger for Generation Rescue and reporting from the conference with news and interviews. I’ll also be involved in unveiling
an extended trailer of a new movie entitled "United States of Autism"
( http://www.usofautism.com ).
The purpose of the conference is to be the ultimate summit of knowledge and support for families and professionals working and dealing with autism. In addition to the speakers, there will be presenters, authors and vendors, as well as official credits and units available for doctors, nurses, therapists, teachers, lawyers and first responders (CME, CLE, & CPDU).
Families should consider attending because this is a chance to see, hear and feel the power of the autism community. It will be an opportunity to learn alongside and interact with professionals and those who are traveling down similar roads. This year’s conference has virtually eliminated the expense for local families to attend. Registration is free and there is only a small fee for conference materials. Professional child care
will be available if one were to bring the entire family. Everyone in attendance is understanding of those on the spectrum and families are welcome to participate as this is definitely not a parent-only event.
As parents of children on the autism spectrum, ours can be a lonely existence at times. Let us join hands, hug, laugh and weep together until we are not lonely anymore. I know we have many miles to go before this mystery is solved but I believe this convergence of like-minded individuals is a giant step forward in keeping us in touch with each other and making breakthroughs that we never thought were possible.
I am also in the middle of 50 days of prayer to help bring churches and service groups to the conference and would personally like to invite each and every one of you to attend and would be honored if you took some time to stop by and say hello. I am looking forward to meeting with you in person.
Summer is upon us and we all long for a vacation, but any autism family who’s attempted to fly knows what an ordeal it can be. Increasingly, airports are providing special trial runs for autism families to put them at ease prior to undertaking a journey.
Logan Airport in Boston recently offered training to dozens of JetBlue volunteers to host such an event, going so far as to bring an Airbus to a gate to allow families to familiarize their child with the plane and practice staying seated and belted once aboard.
Of course, people with autism and other special needs are not exempt from screening procedures, so airport staff are being trained to understand their behaviors. The alien environment and aggravating wait times cause many children to flee, so advocates hosting the event designed a special autism lapel pin so that screeners would know who to allow more time and so security could help reunite a bolting child with their family.
Massport (the parent company of Logan Airport) will set up individual practice times for children and assign a customer service representative to accompany families through security on the day of a flight and it is worth it to inquire if such services are at the airport in your area.
If nothing is available, taking the child on a tour of the airport prior to travel day is certainly a good idea. Noise-canceling headphones definitely help with sensory overload. Parents have found tracking bracelets and even helmets to shield a child throwing a fit useful. Surrendering cherished possessions to go through the X-ray machine is a particular flashpoint to prepare your child for.
Additionally, be sure to take advantage of airline pre-boarding accommodations for travelers with special needs. It may never be needed, but be prepared to provide documentation such as a doctor’s note or IEP paperwork to
prove that your child or fellow passenger does in fact have an ASD diagnosis. This will avoid
having to wait in the general boarding lines, which can often cause undue stress for a child or young
adult with autism.
Carrying favorite books to read or music to listen to helps with long waits. And packing never-before-seen coloring books, DVDs and other items of entertainment is also recommended. Don’t forget those favorite snacks as well. In advance of your flight, call for bulkhead seats. I recall spending a seven-hour flight trying to keep peace with our neighbors as my sons relentlessly and unwittingly kicked the poor people’s seats in front of them.
Frustrated parents launched the event at Logan and hopefully, airports across the nations will follow suit. It’s certainly in their best interest to accommodate autism families eager to be able to fly.
And if you aren’t under distance or time constraints, don’t forget the option of traveling by train. Kids love trains and it’s less of a hassle. They can walk around and personnel will deliver dining car food to your seat or compartment.
Whatever your mode of transportation this summer, we wish you happy and safe
In many seasons since its inception, American Idol has been dogged with accusations of voting irregularities, mainly from disgruntled fans of popular contestants who were upset that their favorites did not advance to the next round. It’s no surprise, then, when James Durbin was
eliminated last week, a large number of fans took to Facebook and Twitter to lodge various complaints related to his early departure from Season Ten’s lineup. However, unlike past American Idol voting "controversies," this one appeared to be different, but unfortunately, it has virtually gone
unreported by the mainstream media.
noted in a recent article, American Idol producers altered the order in which contestants performed their second songs last week, but failed to correctly correspond the voting numbers with their order of appearance. Many claimed that this created confusion in the minds of voters, deviating from a
well-known format that many were accustomed to. As we can personally attest, James has a significant following within the special needs population and even the slightest alteration to the ordering of phone numbers could have significantly affected the total number of votes received.
However, this issue was not the only problem reported. Since our story ran, many American Idol fans have come forward to report voting irregularities when attempting to cast their votes for James. These complaints came from a large number of individuals, both
on our site and elsewhere. Some of them included:
* Using the online voting system, some attempted to cast a vote for James Durbin, only to receive a confirmation notice with a picture of Haley Reinhart
* Numerous "fast busy" signals and "dead air" calls were reported on Durbin’s lines
* When attempting to call 1-866-IDOLS-01, some callers reported receiving a confirmation message stating, "thank you for voting for contestant three." Contestant three was Scotty McCreery
While there were many other types of complaints, these were the most commonly reported.
What’s most distressing about all of this is the lack of attention given by the press and the unwillingness of American Idol or Fox representatives to publicly address these complaints. In fact, many are claiming that most of the message board threads on American Idol’s Web site that attempt to discuss this topic are being deleted by administrators.
While bringing James Durbin back to the competition is not a realistic scenario, it would be nice to see this issue given the attention it deserves to help address these alleged irregularities for the benefit of fans and contestants in future seasons.
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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 […]