I've tried to visit many bloggers this week, but we have so many, over 400 bloggers, that I barely scratched the surface!
If I didn't swing by to wish you a happy Thankgiving personally, I apologize. I hope everyone had a good day today, whether it was a holiday for you or not. :-)
Thanks to each of you who take the time to share bits of your lives, your worries, your fears, your hopes, your successes. It means a lot to know that others share similar circumstances and find ways to cope and overcome their obstacles, to find joy and hope.
Your blogs mean a lot to Kathleen and me and we appreciate you sharing your journeys with the world.
There are lots of lovely blog hops going around on our member blogs; if you aren't participating in one, I hope you'll find the time. We won't do a blog hop here where you've got to add your link; it's pretty much a constant blog hop, hopefully.
But I would like to suggest a topic this Thanksgiving week for folks with the invitation to use the above flower picture of one or your own: community building. Why not take a moment to visit fellow bloggers and tell them what you like and appreciate about their blogs? I'll be doing that throughout the week as I have time, taking the time to share with blogging friends what about them makes me grateful I've found them.
I hope each of you has a peaceful Thanksgiving, one in which you have good food and good company and know that you are loved and appreciated.
The Help Group – UCLA Autism Research Alliance: An Innovative New Approach to Bridging Science and Treatment
SHERMAN OAKS, CA (Nov. 15, 2010) – Long the domain of university labs, autism research is taking the critical next step into the real world of special education classrooms. Investigators from The Help Group – UCLA Autism Research Alliance are exploring answers to some of the long-standing questions about how best to treat children with autism.
“The classroom is an ideal environment to study interventions for children with autism,” said Dr. Elizabeth Laugeson, Director of the Alliance, “but the majority of autism research takes place in a laboratory setting. By transitioning research out of the lab, we can test the true benefit of our interventions for children with autism in a natural environment and open the door to exciting new possibilities.”
Currently, 12 cutting-edge Alliance studies are underway, including:
·Research into studying how children with autism can be more successful in school
·Improving the social skills and independence of young adults with autism
·Using play and joint attention to improve language skills for preschoolers with autism
·Improving social skills and friendship quality for teens with autism
·Understanding the positive impact of music education
·Using brain imaging to understand how children with autism process emotion in music
·Studying how children with autism recognize complex emotions in faces
·Exploring therapies to reduce social anxiety in schoolchildren and adolescents with autism
·Helping parents utilize evidence-based treatments for preschool children with autism
·Understanding how children with autism hear and process sounds in their environments
·Examining the differences in development among adolescents with autism from those with mild intellectual disabilities ortypical development
Through this groundbreaking approach to research, investigators are examining pressing issues confronting children with autism and their families. “While a lot of studies are focusing on the causes of autism, or potential cures, it’s important to research new and innovative ways to treat children now,” says Charity Vanderveer, whose son Dublin graduated from The Help Group’s Young Learners Preschool. “It’s only through treatment that our children will have the opportunity to become the best they can be and reach their fullest potential.”
In an effort to help their children with autism, parents often pursue a myriad of treatments; however, without research to validate a specific approach, a true measure of value can be elusive.
One example of translational research by the Alliance includes testing the effects of treatment in joint attention skills for young children with autism at The Help Group’s Young Learners Preschool. Joint attention skills include showing, pointing, and sharing an event or object with another person in an effort to share the experience. Children with autism tend to lack this ability. Research indicates that if joint attention skills are improved, language development may follow. The progress of participating Young Learners students will test this hypothesis.
The Alliance is a unique partnership between The Help Group, a leader in autism education, and the UCLA Semel Institute for Neuroscience and Human Behavior, an Autism Center for Excellence. Through the pioneering vision of Dr. Barbara Firestone, President & CEO of The Help Group, and Dr. Peter Whybrow, Director of the UCLA Semel Institute, the Alliance has grown into one of the most innovative autism research partnerships in the United States.
For more information about the research projects currently in progress through The Help Group – UCLA Autism Research Alliance, please contact Dr. Liz Laugeson at (310) 206-8139 or email@example.com.
Founded in 1975, The Help Group is the largest, most innovative nonprofit organization of its kind in the U.S. serving children with autism spectrum disorders, learning disabilities and other special needs. The Help Group’s specialized education and therapy programs serve more than 6,000 children and families each year. Through outreach, parent and professional education efforts, The Help Group extends its reach to countless others nationally and internationally. www.thehelpgroup.org.
Diane Yapko writes an interesting pieceat PsychCentral on neurodiversity, noting that the stark contrasts that many would place, neurodiversity versus cure, on the autism community, really don't exist. Perhaps it's inevitable that the debate gets rendered in black and white so that neurodiversity is presented as an ideology that would leave autistics without treatment, without therapies, the them in this us-them tug-of-war. Perhaps there are people who are that two dimensional; perhaps there is a group of people who claim to be neurodiverse and think that means no treatments, no interventions, no help for a child. I hate the thought that there are people out there who would literally do nothing to help their child to grow, to develop, to overcome obstacles, who wouldn't move heaven and earth to help their child. Of course, we know there are parents out there like that in the general community, parents who fail their children in every conceivable way, and that undoubtedly happens for autistic children as well. On the flip side, there are no doubt parents, who in their zeal to cure their child, go too far, and in the process of running down every possible cure, subject their children to nearly equally abusive experiences. And maybe both sets of parents conceivably do all these things and more in the name of love. I heard someone say, in a recent interview I was listening to, that it's out of love parents do things and who are we to judge. But we do, each and everyone of us judge. Even this person. We can't get around that. We hold up other people's behaviors to our owns, we compare, and we place our decisions as the right ones. If other parents deviate beyond the threshold of what we'd be willing to do or believe to be morally plausible, then they are wrong, they're bad parents. We all do it, and we do it with pride in our decisions, in conviction of the superiority of our positions, convinced we've displayed clear critical thinking skills and that anyone who disagrees has failed to exercise those skills. I tell my students, sometimes daily, that we are always assured that if we believe it, we are right, and "if I'm right and you believe differently, you have to be WRONG." A lot of the rhetoric on autism talks about how two dimensional autistic individuals are, how hard a time they have of seeing shades of gray. The reality is that we are all hardwired for black and white. All of us. It's only when we begin to shift our own personal actions into what we'd have considered no-no areas that there become shades of gray. Grays only become visible when we mentally place ourselves in other people's situations and try to get a sense of what we'd do faced with the same situation, when we really think about what we'd do and start chasing down possible consequences. Children see the world starkly: right or or wrong, heroes and villains. Our cartoons and comics often reinforce this flatness: Batman is a moral arbiter; while attracted to Catwoman, he rejects her because she operates outside the law, even though her aims might be laudable; he ignores that his actions arise from the same moral stance (been rewatching animated batman with the kids, offers lots of opportunity to discuss morality and theory of mind issues). Our fiction also renders things flatly, especially the popular fiction. Most of us, despite our tendency to think starkly (us-them dichotomies), find ways to navigate the world more multi-dimensionally. We ignore those differences we've decided don't matter in our real world relationships and only attend to those belief systems that are fundamental to our core identities. Not into politics? Then you probably don't care if someone is republican or democratic. Not into religion? Then you don't care overly much whether someone believes. We do this for countless potential differences. If we have one core dimension that we consider foundational to our identity and we find others who have that commonality, we focus on core commonalities and ignore the differences, dismissing the importance of those characteristics. This happens in our autism community as well, but instead of focusing on the overarching commonality of autism, what we do, some of us, is focus on differences, real or imagined, to create a clear us-them dichotomy. We do this, even if it means we create huge strawman arguments to create the other side so that we have a clear group identity. That means some of us set ourselves up as the aggrieved ones who are woefully misunderstood and persecuted. Some of us set ourselves up as martyr parents. Despite the desire to believe there are clear us-them divisions, there aren't, and if one takes the time to read through the lines of some of the more strident postings out there, it should become evident that we are often more in agreement than not. I think most of us, though, reject that hardcore us-them mentality. I see it daily on the blogs on our directory. Some are fringe bloggers, but most just want to talk about their lives, the good and the bad, and get support while giving it. Let's assume that there are fringe elements that would either do every conceivable woo treatment out there as well as some who would do absolutely nothing at all, not even basic parenting skills, to help their children. But let's also admit that we'd be hardpressed to find actual concrete examples of either true fringe as they are often argued to exist. We'll place a bell curve on the autism community, if you please.
Oh look, more of us have to be in the middle, with more in common than not. Go figure.
I choose to not define myself as part of the fringes; I would not do absolutely anything, but I would never do nothing. I do not believe that believing in neurodiversity means what some insist it does, but let us say it does: that it is a do nothing philosophy that would not help individuals overcome any challenges or learn anything (rather absurd). Let us say it is the right side of the curve. Let us say the curebies are on the left and they would do a complete reboot if that's what it took. These fringe elements, these outliers, are not the driving force, either perspective, of the autism community. They're loud, certainly, but that's only if you're fixated on the edges. I'd bet you most people in the autism community are not.
Most of us agree:
We want our children to be accepted into mainstream society as individuals who have innate value regardless of functional levels.
We want research into therapies that will mitigate the symptoms and behaviors that cause them disability, pain, and difficulty.
We want access to effective therapies to help our children overcome their challenges.
We want safe places for our children to be cared for when therapies and treatments do not remove all disabilities and impairments.
We want meaningful work for our children when they grow into adulthood, so that they can feel they are of service and make meaningful contributions to society.
We want support services, education and training for family members and professionals working with our children so that we can best serve our children.
We want acceptance for our families as we work to navigate this world and do the best we can for our children.
We are members of the autism community and encompass family members, individuals on the spectrum, and professionals who provide services to autistic individuals and their families. We can forget about false dichotomies that do not exist in reality. We can embrace pluralities of opinions and acknowledge that we are one group, united under a bell curve. We can work to create the world we wish for our children and ourselves. Even better, each and every day, most of us do just that.
Passing along this information on the Gateway Project.
Autistic Self-Advocacy Network
Be Included in Autism Research
The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) and the Gernsbacher Lab
believe in research WITH autistic adults, not just ABOUT autistic adults.
Together, we have created the Gateway Project, which is an online gateway to research that
encourages the inclusion of autistic adults in matters that affect them;
includes autistic adults as equal partners in research about autistic persons;
answers research questions that are considered relevant by the autistic community;
uses research findings to effect positive change for people on the autistic spectrum.
The Gateway Project needs your help, whether or not you are on the autistic spectrum.
If you’re at least 18 years old and have access to the Internet, you can participate in a series of online research
studies. Upcoming studies address topics such as healthcare, well-being, and problem solving.
To participate in the Gateway Project:
1. Register online for a Gateway account starting at http://www.thegatewayproject.org
2. Take the online Gateway Survey. The survey takes about 20 minutes to complete.
3. You will be notified by email when new studies for which you are eligible become available.
Completing the survey entitles you to a 1 in 25 chance to win a $25 Amazon.com gift certificate.
If you would like to learn more about the Gateway Project, you can
Go to the Gateway home page at http://www.thegatewayproject.org
Send an email to firstname.lastname@example.org
Make a telephone call to Dr. Morton Ann Gernsbacher at 1-608-262-6989 or Christina Nicolaidis at
OHSU IRB # 3762; UW IRB# SE-2008-0749
Principal Investigators: Morton Ann Gernsbacher, PhD, University of Wisconsin–Madison
Christina Nicolaidis, MD, MPH, Oregon Health & Science University
Please pass this information along to your friends!
"To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.
In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.
It skips everything.
While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.
The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.
If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.