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.
Courtesy: AutismOne / Louis Felix Photography
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.
See you in Chicago.
Tim Welsh a.k.a. @TannersDad
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.
Airports in Philadelphia and Newark have staged similar events and Manchester Airport in London actually produced
a great brochure on flying with
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.
A medley of current special education headlines paint a grim picture. In a national survey, special educators report that they are carrying a maximum caseload with diminished support and that it is increasingly difficult for them to deliver free and appropriate education as mandated by law.
Compounding the problem is the fact that federal education officials are allowing states to reduce spending on special education on a case-by-case basis. Last month, Alabama and New Jersey were granted waiver requests from the U.S. Department of Education, allowing these states to trim their special education spending to the tune of $9.2 million and $25.6 million, respectively, with South Carolina and Iowa eager to follow suit.
All the while, teachers are under major pressure for their students to perform well on standardized tests. Federal dollars depend on it and in some states, teachers’ salary and contract renewals are at stake as well. To compound matters, autism rates continue to soar, placing even more strain on an already taxed system.
As of late, mainstreaming children with autism seems to be another cost cutting trend. And while it is common knowledge that mainstreaming can be very beneficial, that’s only true if it’s done right. A recent survey of teachers found that while they are largely in favor of including students with autism and other developmental disorders in their mainstream classrooms, they believe these kids typically are not prepared to succeed in that context. This means that most teachers are putting the burden for inclusion entirely on the child, prompting the survey taker to remark that a values clarification is in order for them.
Without the knowledge and skills to accommodate a child with autism in the mainstream classroom, teachers can become frustrated and even angry with them, resenting the time they take away from the class at-large. More often than not, a child with autism is treated as a behavioral problem and parents are left at a loss to explain to the teacher that he or she is punishing symptoms of their child’s autism, not willful misbehavior.
I recently had to withdraw my son from his first year of high school and home school him because of this very
scenario. While I told his teacher over and over that managing his anxiety was priority one, she focused on compliance and academic production. She responded to his escalating anxiety attacks with escalating punishment, until it made him physically ill. When confronted, she told me that she didn’t have an aide and she couldn’t teach her class because of my son. When I complained to school officials about the dearth of autism training amongst even special education teachers, I was told there was no money for it.
I actually think teaching educators about autism could be done in a very affordable manner and it might be more a matter of them seeing that it is in their own best interest to have a truly inclusive learning environment. My next move is to try to persuade the interim school district leader of my notions.
She claims to be open to parents’ concerns. We shall see.
A groundbreaking University of Wisconsin-Madison study reveals some hard truths about the toll autism takes on fathers.
According to the researchers:
* More than 30 percent of fathers of grown children with autism experience symptoms of depression so severe that they warrant clinical attention.
* Fathers of adolescents and young adults with autism experience high levels of depression and are pessimistic about what the future holds for their son or daughter, much more so than dads whose kids have other disabilities
such as Down syndrome.
* Like mothers of autism spectrum children, fathers experience higher stress and that stress remains constant even as their children age.
This is the first time researchers have specifically studied how dads cope as their autism spectrum children get older. While the mitigating factors such as the child’s behavior, how many children in the family have a disability, the father’s age and the mother’s well-being did factor into responses, fathers of children with autism still suffered more than those with other disabilities.
Extrapolating from my previous posting about the financial toll autism takes on moms, it’s not difficult to surmise some of the reasons for this phenomenon. Fathers of children with autism work more hours than other fathers to take up the slack for their hard-pressed wives, so the pressure on them to provide for their families is
enormous and during this hard economy, potentially crushing.
And as the study on moms established, services for autism are fragmented and unequally covered by insurance, accounting for the findings relative to other disabilities.
Adolescence is a time of stress for all parents, but for parents of children with autism, abstract fear of the future now becomes palpable.
It’s a well known fact that resources for young adults with autism are scant, so adulthood rarely signals the end of
a father’s financial burdens. Pessimism is understandable given the unrelenting pressure and the contemplation of what will become of a child after the parent is gone. Even in my posting about grown autism children clustering to live independently, it was the parents,
(i.e. largely the dads) who put up the money to establish and maintain their child’s housing.
And this is just the financial angle. While there are support groups for autism dads, finding the time for them can be
problematic and men are more socialized to just soldier on. The resultant emotional isolation can easily foster
depression and if they look to their wives and see someone suffering from the burden of the daily care of the child,
the father cannot help but be affected as well.
This study is just the tip of the iceberg about autism dads and as one of the researchers put it, “This is the first step to drawing attention to dads, we need to get away from just looking at moms.”
Dads, we’d love to hear from you…..
With summer rapidly approaching, it’s a good time for parents of children with autism to give extra thought to their safety.
According to statistics, drowning is the leading cause of death for children and adults with autism, with many of these incidents occurring during wandering-related episodes, so it is very important that parents and caregivers be extra-vigilant during this time of year.
As I’ve stated in a previous
article, Project Lifesaver ( http://projectlifesaver.org
) fits individuals with a lightweight tracking device and trains teams to successfully recover them when they get lost. The cost of this service is twenty-five dollars per month for maintenance of the device, although sometimes the services are rendered for free. With the advent of the diagnostic codes, insurance would likely cover it as well. If your child is at risk for wandering, consider availing yourselves of this excellent resource.
Law enforcement agencies recognize this as the best technology available and that employing it significantly improves the chances for a successful outcome when searching for a child with autism or other vulnerable individuals who wander.
Children are able to slip out of the house or yard in the blink of an eye, so consider printing flyers to educate your neighbors on your child’s tendencies and how to contact you quickly, especially if they live near water.
It is also a good idea to ask those neighbors to lock fences around their pools
and/or cover them when not in use.
Sign up your child for swimming lessons as early as possible and keep them in life jackets until their aquatic skills are well established. Check with your local community center pools and see if they have a special
population programs. I was able to enroll my son with autism in a private class at the same rate as a group class due to his diagnosis.
If your child gets invited to a pool party, risk being impolite by asking the host if an adult with lifeguard qualifications is supervising the event. Try to always attend yourself — no one will watch your child better than you. Too many drowning tragedies have happened in this context. And of course, don’t leave your child unattended, even briefly if water is in the vicinity.
On the bright side, swimming is a wonderful and beneficial activity for children with autism and some of their happiest and most carefree times are spent in the water. Capitalize on their love for water and help them to become safe around it.
Confusion? Durbin was assigned the "05" suffix despite performing last.
In what could be reminiscent of the 2000 presidential election, there has
been some Internet chatter about a potential American Idol voting controversy
involving James Durbin and Lauren Alaina and the possibility that some votes
intended for Durbin were accidentally funneled to her instead.
Typically, when the Idol field is narrowed to a handful of contestants, they are
required to sing multiple songs in the same night. As a result, contestants are
assigned several phone and text numbers for voting purposes and those numbers
are usually given in sequential order based on appearance.
For example, if there are four remaining contestants and someone performs first,
that person would usually sing their second song in the fifth slot, and the
suffix of the voting numbers would be based on the order of his or her appearance (i.e.
866-IDOLS-01 and 866-IDOLS-05).
However, for reasons unknown, American Idol producers decided to re-arrange
the order in which the contestants performed their second songs on Wednesday
night, forcing James Durbin’s performances to be the first and eighth of the
evening. However, the phone numbers assigned to James did not correspond to
that order. Instead, his voting numbers ended with "01" and "05."
Because of this discrepancy, some are now speculating that Lauren (who was
assigned the "08" suffix) may have received some of James’ votes, skewing the
final results in the process.
While all of this is pure speculation, it does make one wonder if there was
at least some confusion in the minds of voters who were not fully paying
attention to the numbers assigned at the end of the show. Granted, that is
responsibility, but clearly this does create some intrigue, particularly since
Lauren was nearly eliminated last week and up until this week, James had never been in the “bottom 3″ or in danger of being eliminated.
Additionally, it is worth noting that when voting by phone, a generic confirmation message was given and did not indicate who was actually voted for.
What do you think?
UPDATE: May 15, 2011 – Since we originally ran the story above, many
people (on this site and others) have indicated that they either had difficulty
voting for James and/or experienced abnormal activity when attempting to cast
their votes. Please forward this story along to others and also share any unusual
voting experiences below.
Complaints of voting
irregularities are not new for American Idol, but if enough people sound off, the mainstream media will pick up on this, forcing Fox and AI
representatives to respond.
The mismatch of voting numbers and the contestants’ order of appearance, as described in the
original article, along with the large number of voting complaints, should
warrant a closer look into this situation.
UPDATE: May 17, 2011 — American Idol Executive Producer Nigel Lythgoe spoke out publicly on Monday with “So You Think You Can Dance” judge Mary Murphy, only partially addressing the voting
issues surrounding James Durbin. He only spoke about the re-arrangement of the
singing order last Wednesday night, but failed to address the legitimate concerns that
have been raised on this site and elsewhere. Additionally, Lythgoe jokingly
referred to some Idol fans as "morons" and "meglomaniacs."
Really, Mr. Lythgoe? Wow.
– READ ABOUT IT HERE –
A recent University of Pennsylvania study confirms what autism families already know – autism results in substantial underemployment and loss of income among mothers.
Healthcare costs associated with the disorder are only part of the reason. Mothers take lower paying, more flexible jobs to be available for their child. But the primary issue is that the system for caring for
a child with autism is so fragmented that mothers are required to act as case managers for their children in a way that doesn’t happen with children that have other disorders. Advocating for their child’s health needs and education becomes an autism mother’s de facto, full-time job.
Among the study’s findings:
- Mothers of children with autism spectrum disorders were 5 percent less likely to have a job than the mothers of children who had other chronic health problems, and 12 percent less likely to have jobs than mothers of healthy
- Mothers of children with autism spectrum disorders earned about $6,300 less annually than mothers of kids with other health conditions and $11,540 less than mothers whose kids were healthy.
- Families with children with autism spectrum disorders earn an estimated $11,900 less a year than families with children with other chronic health problems and $17,640 less than families with healthy kids. This translates to 20 percent less than families with kids who have another chronic disease and 27 percent less than families with healthy children.
- Fathers were exempt from job and income disparity, although they tended to work more hours than dads of neurotypical children.
- Overall, The labor market costs associated with having a child with autism are more substantial than with a child with other health limitations and constitute a significant national strain.
Coupled with all this information is the reality that lack of respite care for children with autism is a crisis in our country. While it is truly horrifying and an abomination to read about mothers who take the lives of their children with autism, they can be regarded as the canary in the coal mine of our nation’s inability to give children with autism and their families the support they so desperately need.
I recall years ago hearing autism expert Dr. Tony Attwood talk about how in Australia, each child with an autism diagnosis is assigned a public health nurse to coordinate and monitor the youth’s needs and progress throughout childhood and into early adulthood. The audience stared at him blankly. He was aghast to learn that nothing comparable exists in the United States, a place so wealthy compared to other nations.
In this day-and-age of multiple wars overseas and budget hacking, the prospect of significant improvement in our country feels remote. I don’t how or when the change is going to come, only that it needs to — and soon.