7/31/2011

Penn State's Autism Conference Being Webcast

Thanks to Trish for the heads-up on the Autism Conference at Penn State this week. It is being webcast live for free!

Go to this page for the schedule of presentations. It would be awesome to be there in person, but I'll take vicariously from my recliner, too!

Little Dude Likes TV




He looks more like Ibit each day, too.

7/30/2011

Respect People with Disabilities: FC Doesn't

Under pages is a piece on what I believe and why.


About neurodiversity, I wrote (more than a year ago):


Neurodiversity.
Neurodiversity is about accepting people's value and worth is independent of their functional level.
It is about working to help people be accepted and supported.
It is about helping people reach their potential.
It is not inherently anti-cure; if it exists as a movement, it would reject the terminology.
It's about making people's lives better.


I stand corrected


"For many autistic people, neurodiversity is viewed is a concept and social movement that advocates for viewing autism as a variation of human wiring, rather than a disease. As such, neurodiversity activists reject the idea that autism should be cured, advocating instead for celebrating autistic forms of communication and self-expression, and for promoting support systems that allow autistic people to live as autistic people."


 By choosing to have the neurodiversity symposium encompass and showcase facilitated communication, the key promoters of the construct are signalling their support for a debunked communication form and actively supporting its continued use. And they are obviously, openly anti-cure. Based on the language here, one could argue that if an autistic individual happens to communicate by smearing feces, that this should be celebrated. I hope that's not what they mean.


Perhaps there's a failure to think through here on their part, but regardless, it seems to be an extreme position that I can not, after having worked  for two decades with my son to help him overcome obstacles, to learn to communicate, to function in the wider world, support. I have not sought to make him neurotypical, but I have worked to help him function better, to master new skills, to become more autonomous (the same as I've done for my daughters). Imagine if I'd chosen to celebrate his (and their) autistic forms of communication and self-expression involving feces instead. 

Just as the anti-vaccine movement couples its belief system with quackery, it is apparent that its opposing movement, although professing to be pro-science, is not necessarily so. This is deeply disappointing, regardless of whether it comes from a lack of information or intentional support of quackery.


I support evidence-based practices and a position of doing no harm. Based on the overwhelming scientific evidence, facilitated communication is not evidence-based and it does in fact do a great deal of harm. 


I am changing my what I believe and why page. In place of the neurodiversity section, it will read:


Respecting People with Disabilities.
It is about recognizing that people's value and worth is independent of their functional level.
 It is about working to help people be accepted and supported.
 It is about helping people reach their potential.
 While respecting each person's uniqueness, working to reduce suffering and improve functions are actively pursued.
 It's about making people's lives better.




Lest one think that FC has any support from evidence-based organizations:


From BAAM's links on resolutions:


Facilitated Communication
Reviewed June, 2008Approved by Council, October 20, 1993To be reviewed June, 2013
Facilitated communication (FC) is a process by which a "facilitator" supports the hand or arm of a communicatively impaired individual while using a keyboard or typing device. It has been claimed that this process enables persons with autism or mental retardation to communicate. Studies have repeatedly demonstrated that FC is not a scientifically valid technique for individuals with autism or mental retardation. In particular, information obtained via (FC) should not be used to confirm or deny allegations of abuse or to make diagnostic or treatment decisions.
*Endorsed by the American Academy of Pediatrics.
This is a Policy Statement of the American Academy of Child and Adolescent Psychiatry


AAP's policy
 "AIT and FC are controversial treatment options for autism and other disorders. Although two investigations indicated AIT may help some children with autism,56 as yet there are no good controlled studies to support its use. In the case of FC, there are good scientific data showing it to be ineffective.11-14Moreover, as noted before, the potential for harm does exist, particularly if unsubstantiated allegations of abuse occur using FC. Many families incur substantial expense pursuing these treatments, and spend time and resources that could be used more productively on behavioral and educational interventions. When controversial or unproven treatments are being considered by a family, thepediatrician should provide guidance and assistance in obtaining and reviewing information. The pediatrician should ensure that the child's health and safety, and the family's financial and emotional resources are not compromised. It is important for the pediatrician to obtain current data on both AIT and FC as they become available. Until further information is available, the use of these treatments does not appear warranted at this time, except within research protocols. Information on communicating with families who choose an alternative medical approach for their child with chronic illness and disability is also available in the literature.21"

Also rejecting FC, according to BAAM, are the American Association on Mental Retardation (now The American Association on Intellectual and Developmental Disabilities [AAIDD]), American Psychological Association, American Speech Language Hearing Association, Association for Behavior Analysis, Association for Science in Autism Treatment, Autism Society of Canada (ASC)/La Société canadienne de l ’autisme (SCA), Behavior Analysis Association of Michigan, Heilpädagogische Forschung, Resolution zur Gestützten Kommunikation, among other organizations.

*Update: If you think that FC and neurodiversity don't have history, indeed they do: http://www.autcom.org/conf2008/schedule.html.

"A) Neurodiversity: Views from Those of Us Who Are Supposedly Neurologically Atypical

Jacob Pratt, Jamie Burke, Daniel McConnell and Ari Ne'eman
The current neurological research shows that most of what DSM-IV says about autism is misguided at best. We know that people with autism labels have a lot of the same movement, anxiety, communication and sensory differences as so-called neurotypical people, but to a different--that is, diversified--degree. The panel members will discuss our neurological similarities and differences--both with each other and with people who do not acquire the autism spectrum label."


And if you think that the people organizing the event know about it and wouldn't push woo; of course they know all about it.  Syracuse U is the home of Biklen's organization. Biklen is the American pusher of facilitated communication.

7/29/2011

What would you think...

If you realized an autism self-advocate advocated specifically for a debunked treatment like facilitated communication?

If you realized that a self-advocate who represents an organization speaks at conferences on facilitated communication?

What responsibility does a disability rights advocate have to ensure that the practices he or she endorses are sound practices?

We already have too many autism organizations explicitly endorsing various forms of pseudoscience and quackery (NAA, ASA).

What would you think if you realized another organization you supported because of its self-advocacy role also endorsed some of the same quackery? Not only endorsed it, but embraced it, used it in PSAs. What would you think?

Would you stand up? Would you ask what's going on? Would you look more closely? Would you care?

Would you shrug it off, claim it represents inclusion, and let it go?

Would you label it political expediency and the price one pays for being a vocal advocate, that these disability rights advocates go where the audiences are? Would you give the person a free pass?

Would you?

Why?

Why would you give this a free pass?

Why would you sit silently by and allow a method that argues that what an individual can communicate on his own is so inadequate that co-opting that communication is acceptable, even preferable?

Why do you?

Is it a lack of understanding?

Is it wishful thinking?

Is it because the stories that come out of facilitated communication from its proponents are so feel-good you get emotionally invested in it that it's hard to imagine that there are people who intentionally con others?

Is it because you are afraid to call this out? Be seen as a killjoy?

A commitment to disability rights, to protecting and standing up for those who are different, ought to mean a moral and social responsibility to protect, not exploit, those who are most vulnerable. It ought to mean acceptance of severe disability rather than embracing fairy tales that if only the right person holds onto the disabled's arm, the person's true intelligence will finally be revealed.

Honoring humanity means accepting people as they are, no matter how severely disabled, as people of value and worth independent of their capability to communicate or their supposed "intelligence."

If we cannot accept people where they are for who they are, we can not work with them to help them learn new skills. Instead, by cheating with facilitated communication, one is denying the person his autonomy, his chance to learn and grow at his own pace, to achieve his own milestones.

Endorsing facilitated communication is denying the disabled individual his value, his worth, and his autonomy.

What would you think if you really considered the implications of an endorsement of facilitated communication by a "disability rights advocate"?

Well?

*Comments closed due to off-topic commenting.



7/26/2011

Mark Osteen's One of Us

There are many memoirs out there, many stories by individuals about their journeys as parents of disabled children, and some are good, some are great, and others are neither. Some writers are polished and offer their journeys with a luminosity of prose that leaves your soul fed. Other memoirs, while polished and offering a distinct voice, a unique insight, leave you with a heavy heart, a soul weighed down by the limbo, the purgatory, the family finds itself in. Osteen's tale, One of Us, does that: leaves the reader weighted and yet lost.

Mark Osteen's memoir of raising a severely impaired son on the spectrum and the decision to place him at a residential school is not an easy read. It's well-written, it's detailed (perhaps too detailed with its descriptions along the way of people he and his wife had issues with), and it's brutally honest. It is not a book for parents new to the journey; it just isn't. It's a book for those willing to bear witness, ready to hear the reality of what autism is for some families, for whom happy endings are not in sight, whose burdens, whose choices, are grim ones.

Last month, my kids and I watched Fly Away. My son commented on the film, a film with an autistic young woman with similar issues as Mark's son, about the lucky kind of autism:


Lily asks over and over why Mandy is so aggressive and to listen to Bobby explain is illuminating; Bobby says to Lily, “She doesn’t have the lucky kind of autism.” And I feel my nose tingle and tears start. What do you say to that?

Mark Osteen's son doesn't have the lucky kind of autism. This family's journey isn't one of uplifting, of overcoming, but is instead a clear, level look at autism that severely impairs a person, causing the family to make decisions that don't have happy endings, but pockets of limbo, where a couple is left in an empty house, finding ways to make it through those times their son is living at his residential school. It is an empty nest far too empty far too soon.

This isn't a book that should be offered blithely to all, but instead one that should be carefully proferred to those willing to bear witness, to join an uncertain and painful journey. It will resonate with families going through similar ordeals and perhaps offer them comfort that these decisions can be made, that life can go on, that it is not the worst thing or even the wrong thing to do, that no one in the middle of such decisions is a failure for recognizing that placement in a residential facility is appropriate. It's one that those of us dealing with the "lucky kind of autism," the kind where significant, often phenomenal progress is made, should make time for. Sometimes all we can do is offer to bear witness, to stand and listen, to offer empathy.

Learning to make peace with life's surprises, jolts, and arrows is a continual process, and it is a process that leaves some people struggling, some people in limbo. While Osteen writes in the concluding page of his book that he sees his journal as "a tale of endurance" that becomes a tale of acceptance, it is an acceptance that comes with a price. It isn't giving up, not on his son or his son's journey, but it is giving up the traditional dreams parents have. And that, despite his closing line, "We finally accepted Cam as one of us. Then we had to stand aside and let him take his rightful place as one of you," invokes in me, at least, a lament for what could have been, should have been. It is, perhaps, because I recognize, despite our "luckier autism," one that I recognize. Letting go, standing aside, and accepting that we don't control the outcome for our children is a hard lesson to learn, and because their futures are so uncertain, it is hard not to feel that sense of limbo.

Stargate, Belief Systems, and the Misguided Assumption that the Truth Will Set them Free

Occasionally, my interests in the psychology of belief and my love of sci-fi intersect. Imagine if you will my howling with disgust when one of my favorite shows perpetuates the 10% myth of brain use (and they all do it!).

Last night, we watched "Rules of Engagement," a third season Stargate SG1 episode in which Apophis has rounded up a bunch of young men and has them training to be infiltrators; SG1 gets stunned by them when they gate to the planet and think that the men in military uniforms are a missing SG team.

In the end, one of the young men, the captain for one quadrant, is wounded by one of the SG1's weapons, and O'Neill convinces him that he must take him through the gate to Apophis (it's complicated). Once back on earth, O'Neill shows the young man a video of Apophis dying, which convinces the young man that Apophis is not a god. A plan is hatched to go back, show all of the men now engaged in a battle with real weapons the video so that they will lay down arms. And it's just that easy. The video is shown and all of them lay aside a belief system that has guided them for five years. Sure. It's just that easy.

Anyone engaged in the teaching of critical thinking, in the world of woo-fighting, knows that evidence offered to true believers is almost never enough to get people to lay aside their beliefs. 

If only it were that easy, the autism/vaccine wars would be over. 

If only it were that easy, people wouldn't buy the power bracelets.

If only it were that easy, Mercola and Mike Adams would be out of business.

If only it were that easy, homeopathy would no longer have any takers.

If only it were that easy.


7/25/2011

Thoughts on Language and Responsibility in Blogging about Autism

There have been some posts I've read recently that raise the issue of the right of authors to be true to their experiences and the responsibility an author has to a wider audience. I've been chewing on this, weighing it. A lot of what we do in the online autism blogging community is reactionary; we respond to other people's words. Sometimes we skewer them for those words. I've done that here; this blog started as a response to the words that Age of Autism put out there. Words matter; we all know that. Words start wars. Words end them.
Words began relationships and tear them apart. Words build people up and rip them apart.

Many of us stand up and write in response to the R-word campaign, that the language must change, but that without a change in the sentiment driving the language, nothing really changes.

So it is not just words then, obviously, that do this, but the sentiment behind them, the honesty with which the words are offered and the receptivity of the person hearing those words. Sincerity on the offerer's part can be rendered moot by the skepticism of the receiver. Wiio's laws regarding communication are always worth keeping in mind.

It would be remiss to not let readers know the pieces which have made me think about the responsibilities we have when we write, both to ourselves and our own experiences and to the community at large. Failure to consider these twin responsibilities in tandem leads to more conflict. We hear in this community a lot about empathy and how autistic individuals lack it, with many autistics and families stepping forward to say that's not true in their experiences. The reality is that we are all occasionally empathy-impaired. We are all occasionally self-absorbed. It is not the complete measure of a person that we have an occasional lack of empathy and  occasional self-absorption (which go hand-in-hand), but if we do not know when to shake that off and make amends, well, perhaps that's the bigger problem. What's important is that these kinds of pieces, the range of experiences, offer us the opportunity for reflection.


Rachel Cohen-Rottenberg's recent piece "On Language and the Spectrum of Experience" calls a mother blogger to task for not considering her autistic son's perspective when she relates a late night experience. Always thoughtful, Rachel's concern that the autistic person's perspective be related, be considered, that bloggers be responsible for their language use so that stereotypes not be perpetuated is clear.

As writers, we are responsible for our words, and out here on the internet, those words live on, ready to impact and influence others and even bite us in the rear. We put those words out there, and we have to accept that when we do, we open ourselves to criticism and disagreement, and there's nothing we can do about it. So some thoughtfulness about those words we write for the world to see before we hit publish is probably a good thing. We should be responsible with our language while still being able to write honestly. Or we should have thick enough skins to accept that once we put it out there, we lose control of the message.

Another writer admonishes his critics to quit reading if they don't like his words. It's a short piece, and readers familiar with Rob Gorski's blog Lost and Tired will know that his blog is about the difficulties and burdens that autism is for his family. You could not get farther from Rachel's blog than Rob's. 

I've waded into these things before, argued that we have a responsibility to be sensitive to how individuals on the spectrum are portrayed. I've argued that we must be careful about how we present our stories so that we minimize potential harm. I think it's harmful to write things like the light went out of the child's eyes, or that the child died. Dude, it's autism, not death. The reality, though, is that the parents who write these things are hurting, are not coping well, and may be dealing with things we cannot even begin to imagine. How do we help them?  Perhaps that is something we should consider before reacting. I know that there are things I would do differently now, reactionary pieces that in hindsight, were too judgmental. 

The other thing that I think is not said often enough is that our community has a tendency to lump every behavior under autism, so that uncontrollable rages get labeled autism. Not everything is autism. Sometimes it's intermittent explosive disorder. Sometimes it's psychosis. Sometimes it's bipolar or schizophrenia or full-blown OCD. Or generalized anxiety disorder. 

I don't think that things are going to change in the community; even this post is a reactionary post. It's what we do; it's an extension of a conversation that is international in scope and diverse in ideology. We each bear responsibility for the words we share with the world. 

These two posts, read together, reflected on together, represent two poles in our community, and offer the chance for a wider dialogue on how to honestly share our stories while being responsible, or for that matter, a real dialogue on whether we owe the wider community any consideration when telling our personal stories.

To dialogue, to reflection, to diversity, to community.



7/24/2011

Hiccups and Ever-Expanding Comfort Zones: Coping Adaptively

You know how you'll be swimming along (metaphorically), going, well geez, things are going pretty well, knock on wood? And then, bamm! You say those words, even invoking superstitious protections, and you're hit with anecdotal evidence that you spoke too soon?

I'm just saying, it seemingly never fails to happen. Of course, that might be more to do with the reality that life is constantly on an up and down roller coaster ride of events and when we're in a high or in a low, it can be hard to see that it's been something else and will be again.

We're doing well here, but we've had the regular hiccups that you'd think I'd never forget are inevitable. We're working hard at expanding comfort zones and getting out in the community several times a week (a change from our preferences for staying home and hyperfocusing on our geek/garden obsessions). It's been mostly great, but we've had some bumps.

Bobby is continuing to grow and do well at his volunteering, so well that this next week will be his last time to attend the day center for the disabled; he's going to transition to volunteering five days a week as we work to build his skills and his ability to sustain 40 hours a week doing meaningful labor in the hopes and plans that this will, after a year or two, allow him to transition to a regular paying job.

It's scary and exciting at the same time, from my perspective, to let go of the center and to move him to five-days-a-week volunteering and ultimately to 40 hours a week volunteering. It's hard to tell how Bobby feels about it, although he seems to move towards this goal with less trepidation than I have. Maybe in some way, this change is not as difficult for him as it is for me? And to even state that it's difficult for me is to overstate it; it's electrifying, exciting, and, yes, scary, but that doesn't mean difficult, not really: it's inevitable. It is uncharted waters, though, and comes with risks, but with the chance for him to continue working towards independence. I want this for him and am thrilled that he's heading there. It's huge.

But there are hiccups. He maintains a focus at the places he volunteers and in our kitchen when he cooks that impresses me as it's new, but at the same time, when he is outside those duties and tasks requiring the attention to detail, he can be very unfocused. I don't think that is worse than it's been, but that in contrast with his improvements in functioning, it's all the more telling. The important thing to remember is that when we give our everything to rise above, to do more than comes easily, that it comes with tradeoffs, that there are prices to be paid. Much better to remember that he cannot sustain continual focus than to expect that he have consistency across all domains. It's all about baby steps and realistic expectations and assumptions.

And then there's this: we've had very few instances of aggression, but the other day Rick heard Bobby on the phone being hostile towards a friend (who had texted him, calling him a name, out of the blue); Bobby lit off like a firecracker, and surprised us with just how mad he was and how difficult it was to calm him down. So we face the hiccup of whether this is a new problem, if this is a friendship we'll have to limit (this friend's been texting and calling him dozens of times a day despite Bobby asking him to only do so at certain times). Hiccups or something more? Time will tell. Not overreacting on our parts and allowing Bobby as much autonomy as possible is, I think, key. He's got to learn how to navigate this kind of thing in the real world. Finding the balance between protection and instruction is not something that gets easier. In the short term, telling the friend that Bobby's grounded for two weeks and not allowed to visit or accept texts gives Bobby the break he needs from what he views (rightfully so) as overly demanding and intrusive contact on the part of this friend.

Onto other bumps and hiccups. The girls went to a fun day at a local church (where they met up with their friends). It's a large, well organized, friendly church, but walking away leaving them in a sea of strangers was hard for all three of us. We were nervous. I think the day, on balance, went very well for them. Their friends ended up getting into the same classrooms with them, which helped, but Lily, who is almost always grinning and happy (or the opposite) was unusually pensive when I got her. And both girls, when I asked what they'd learned that day, immediately offered, in tandem, that the punishment for sin is death, with Lily offering that it's a sin to disobey parents. I'm absolutely certain that this was not the takeaway message the church was trying to offer, and it took some prying to get the girls to admit that Jesus had been mentioned, but what they took away from the lessons was about sin, punishment, and death. Hyperliteral kids and Old Testament teachings are perhaps not a good mix.  I suspect the pensiveness was Lily trying to work out what that all meant, and she managed to right herself after an extended talk with her grandma and me. But still. Hiccup. However, the bigger picture and takeaway should be that they entered a brand new place, teaming with hundreds and hundreds of kids, and they navigated it successfully with no special supports. Big deal, despite the hiccup. Plus, what a great way to ultimately learn that a hiccup does not have to mean a ruined day and that sometimes the message we take away was not the one intended.

Friday, I treated the three kids to lunch at Golden Corral, thinking, on the spot, that the buffet style eating, the busy atmosphere and the lunchtime crowds would be comfort zone-expanding at the least.

Rosie's got big-time issues with choice making and here we inundated her with countless choices. She chose on her own the lasagna. But that's pretty much all she chose. She didn't want anything else on her plate. She accepted the roll, though, and then was able to handle dessert choices. Yay, Rosie!

Lily, bless her heart, in taking her own plate back to our table so she could come back and help with Rosie's, managed to get hit by a service person with a bunch of trays, hurting her hand. She cried, but she accepted ice and the woman's sincere apologies. She recovered from that, managed to eat more than the rest of us and was back to smiling by the time we were done eating.

Bobby, well, he was a man on a mission, and helped himself to food with no assistance, no hesitation, and then helped his sisters get their desserts. And then helped finish eating them.

We had one other small hiccup when our service person, in cleaning up the table, managed to spill the glasses of ice left after we'd slurped our diet sodas down, all over the table and to varying degrees, us. Another lesson in how not to overreact for all of us. The girls immediately offered to her that this happened at home all the time. Hiccup escalating into major meltdowns averted.

Much of our parenting, whether we have special needs children or those with just the fair share of issues, is about teaching our children how to cope with hiccups, or hassles, as they're termed in psychology: those minor upsets that momentarily throw our day out of whack. It's our job to teach them that a zit doesn't mean the end of the world, or a bad hair day doesn't spell doom. And for our children with special needs, the demands are higher, as their hassles are rarely just zits or bad hair days. It's our job to arm our children with the tools to appraise those hassles as just that: momentary blips that do not have to ruin our day.

We've had our share of hassles and we've certainly had our share of major, life-altering events. Each of them is a learning opportunity and a chance for growth. Adaptive coping in the face of adversity is about weathering these events emotionally intact. We can't get through life unscathed, but we can make a conscious choice to learn from those events and grow. We can create our own self-fulfilling prophecies that we can handle it, that we are up to the challenges we face. The greatest gift we can give our kids is adaptive coping, but we can't offer them that gift if we don't have it ourselves.

Too many of our parents in our special needs communities need help, need information, need support that they too can cope adaptively, that they are up to the challenges, and that they can survive the hiccups and the bumps that life throws at us.

We need to do better as a community in offering the support, the tips, and the tools so that all families have the opportunity to weather the hassles and the upheavals and come out the other side intact.




7/23/2011

Beat the Back-to-School Jitters

I've been immersed the last several weeks in trying to put together a local "Beat the Back-to-School Jitters" events here on August 10. Both fundraiser (although parents and children can attend free) and information and tool provider, it's proving to be both time-consuming and energizing to line up sponsors (come on, sponsors!), vendors, speakers, volunteers, and door prizes. I've been on the phone, in businesses, and on the computer working to make this happen. And I've had some wonderful friends help me with this. It's coming together, and I can't wait to see families walk through those doors and hopefully leave two hours later, armed with tips, tools, information, and the absolutely vital realization that they are not alone.

I'd like to give them a little more than that, though. I'd love it if bloggers would share their posts, their worries, their tips, and their tools. We'll run them on the directory, and every attendee will leave with the event with a business card for the directory so that they can read the offerings on their own time. I'll showcase those entries that are up on the directory when I give my presentation. Help me show my local community just what a great international community there is out there, show them the diversity and the acceptance that they'll find.

Please email me your link or your piece to kwombles@gmail.com and I will get the pieces posted as they come in. Thank you!



7/19/2011

Lofty Goals and Milestones


I don't get out much.

Last time I flew alone, Bobby was in my womb.
22 years ago.
A lifetime ago.

I've flown since, but let's say those trips were nightmarish 
and leave it at that.

I'm a homebody at heart.
But I was asked to go.
And I said yes.

How appropriate that the theme of the conference was


I went.
I went to the Autism Speaks Volunteer Leadership Conference.
And I met 250 incredible people.
Well, not all of them, but a lot.
I made some great friends.
I cried. A lot.
And I learned a lot.

I sat with people from all over the country.
With different beliefs but one common goal:
improving the lives of people with autism
 and their families.

My Autism Speaks folder says three things:
Research.
Awareness.
Compassion.

I stood on the stage and accepted an award with fellow West Texas volunteers
and our wonderful staff member who has become my friend.
I spoke words off-the-cuff to the audience that I barely remember, 
but that I know were about how my children had changed me and all for the better.

I didn't see much of Philadelphia, 
but that conference was all about brotherly love.

It was about making the world a better place,
about creating local communities,
about Autism Speaks being of service at the local level.
About housing and job training for adults on the spectrum.
About education and toolkits to arm parents and professionals 
with the knowledge they need.
About events that give families a sense of community 
and the assurance that they are never alone.
About fighting for legislation that helps with services, with research for treatments.

It was about family.
And inclusion.

Our local walk here next year will have an autistic adult on the committee: Bobby.
It will also have my father.
Three generations will sit on one committee.
Every event we go to, these three generations have volunteered.
Family.

We are all connected on this journey, 
and we share a common goal:
making the world a better place 
for our loved ones 
and helping them achieve their milestones.
Even when those milestones are not the traditional ones.


 the view from my room
 looking up, way up, at the base of the hotel
 gorgeous
 interesting choice for a monument.
 at the base of the monument
the hotel rising

I know that our community, too, will rise above,
will stand towering.
We're going to change the world.
And not just for our children.

7/18/2011

Living Life Well

Last night, I attended the visitation  for a woman I've known for thirty years plus. She was only 62, had just completed her doctorate, been made a dean, was making things happen. And now she's gone, with things left undone, and her absence will be felt keenly at my college. A few years ago, we lost her predecessor, another woman who was an important part of my growing up. Unlike Jackie, Donna left with the chance to wrap things up, to look back and see that she'd accomplished what she'd set out to. Jackie wasn't done. Jackie was, in many ways, just starting.

She lived her life well, though. She believed in God, she believed in heaven, and if there is a heaven, she's up there now, looking down and knowing that her work will be carried on.

Living life well is a goal we should all strive for. It will mean different things to different people. And it will change for us, on our life's journey. Our interests, our goals, our concerns will shift with time and it will be up to us to find a way to make life have meaning.

We spend, in our culture, a lot of time on empty pursuits that provide no depth, that leave us with little chance to say we lived our life well.

One of the most important lessons I can teach my children is to be of service, that a life lived well must encompass service to others. I think my son is learning that lesson well. Two days a week at Meals on Wheels, one morning a week at the animal shelter. He gives of himself and is pleased that he can be of service. It's a lesson I will make sure my daughters learn, too. And I will do this by being of service. Volunteering for Autism Speaks, helping to plan a walk, and planning a "Beat the Back-to-School Jitters" event for parents and kids next month, whether online autism community members agree or not about AS, is being of service to the community I live in. This week I'll also start as a hospice volunteer, another way, an important way, to be of service to my local community.

Each of us has something to offer to our community. Each of us is called to live our lives well. I hope each of you who reads this finds your way to be of service, to live life well, so that no matter when our journeys end, we will know we did the best we could, we gave what we could, and we showed that we cared about our fellow man.

7/17/2011

Bippity, BAPpity, Boo!


In the autism community, it can’t help but be noticed that a good portion of the parents of autistic kids deal with the same kinds of issues their children do. Indeed, researchers also noticed that the personality traits that were similar in kind to autistic traits and behaviors, but usually of less intensity, were present in many of the family members of autistic individuals.

These personality quirks and issues that mirror autistic traits (but usually less in number and in intensity) are known as the broad autism phenotype. Micali et al. (2004) note that the “genetic liability is not only confined to autism  per se, but also applies to a constellation of subtler abnormalities, known as the broad autism phenotype.”
Certainly calling this “constellation of subtler abnormalities” quirks and issues is a much more appealing way of dealing with the reality that many of us parents of autistic children have faced our own challenges in overcoming or working around or flat-out accepting (because overcoming and working around seem to be out of our reach) various social and communication deficits, or our own narrow interests that we hyper-focus on, or our own anxiety issues or sensory issues (or all of them).
Some parents even come to the realization of their own place on the spectrum after having a child diagnosed. We see ourselves and our experiences reflected back in the struggles our children face, and we feel comforted in having a name for those struggles. Even if we decide that our cluster of quirks and issues don’t rise to the need of a diagnosis, we can see ourselves and our mates, and other extended family members reflected back in our children, and we have the term broader autism phenotype to explain it.
For years, my husband and I have joked that when our powers combined (think Captain Planet), how surprising is it, really, that his issues and mine combined would bite our kids in the butt, or that our strengths would also be their strengths? Once acceptance and understanding of autism kicked in, it became increasingly easy to look around and see those traits in ourselves, in our siblings, and our parents. And it became a comfort. After all, here we all are, adults, and we made our way, mostly overcoming the worst of the issues and relying on each other to help us get through those hurdles that were still too high. If we could do it and do so without labels (other than those other kids or adults placed on us like geek, nerd, dweeb, weird, eccentric, odd, etc.), then there’s certainly hope that with a combined effort from family, school, and community, that our children will find their way in the world, hopefully with less shock and awe.
In accepting autism and the personality traits and issues that go along with it in our children, we learned to be more accepting of our own quirks and our family members’ quirks, as well. We learned to cut some slack and give more second chances. Accepting autism doesn’t mean excusing bad behavior or free passes, but understanding where the weak spots are so that more directed, targeted effort to strengthen those weak spots can occur. It meant being able to name and understand some of the issues that had kicked us in our own asses, hard, over the years, and being able to go, well, alright, then, how do we fix this? We also learned that if we wanted our children to rise above, we had better do so, as well.
Learning about autism and the broader autism phenotype, even when the scientific literature is difficult to not take personally, can be an illuminating experience.
I’ve never minded geek or nerd, or being a combination of the two, and I don’t mind knowing that I am those things because I am BAPpy, nor understanding my husband and where he’s coming from better because of his BAPpy traits.
No, life isn’t easy, and I’m not making light of the struggles that come with social anxiety or with the darn near OCD-like tendencies, and I’m sorry as all get out to see my kids struggle with my issues, to see those issues magnified and intensified in my children a hundred-fold, to realize that their genetic inheritance gave them autism and some other issues that I’d have loved to spare them. And it’s not particularly a happy moment to realize my lack of interest in social events and clubs makes helping them be more social creatures all the more difficult, but together we’re finding our niches, places where we are free to be our true selves, to leave masks behind, to be confident in who we are so that when our true selves are not embraced as we’d wish we have the internal strength to see that as the other person’s loss, not ours.
References
Micali, N. N., Charkrabarti, S. S., & Fombonne, E. E. (2004). The broad autism phenotype. Autism: The International Journal of Research
This originally appeared at Laura's Life in the House that Asperger Built: http://lifeintheaspiehouse.wordpress.com/2011/04/28/bippity-bappity-boo/

7/16/2011

Another Dubious Autism Treatment: Listening Therapies


Parents are always looking for new treatments to help their children with autism; it can be daunting to keep up with the multitude of new therapies constantly popping up on the internet, many with similar sounding names. There are several different “listening therapies” or auditory integrative training programs available online promising relief for autism symptoms. According to Sinha, Silove, Wheeler, and Williams (2006), “treatments to overcome variations in auditory sensitivity commonly encountered in people with autism have been developed and are collectively called auditory integration therapies. They include auditory integration training (AIT), the Tomatis method and Samonas sound therapy.”
Listening (or sound) therapies fall within the category of auditory training programs. Database searches show no results for any scientific investigation on specific programs available online, such the Lollipop Listening Therapy ,Tomatis, or EASe, and there is limited research into auditory integration training for reducing autistic behaviors and issues.
The lack of research into the newer programs and the American Academy of Pediatrics’ recommendation to not use auditory integrative training has not stopped these programs from being popular ones for parents and therapists to use, as the abundance of sites relating to listening therapy, sound therapy, and auditory integration training attest.
In 1998, The American Academy of Pediatrics issued a blanket rejection of both auditory integration training and facilitated communication which it reaffirmed in 2006. The AAP’s conclusion reads: “Their use does not appear warranted at this time, except within research protocols.” Much like facilitated communication has been made over into supported typing, all appearances indicate that listening therapy is auditory integrative training rebooted.
Sinha et al.’s 2006 attempted meta-analysis of auditory integrative training concludes with this warning: “AIT continues to be practised worldwide,30 despite evidence that shows it to be still an experimental treatment at best, and one which may be only available at a considerable cost to the family.”
Even without this research to rely on, parents can evaluate these programs by looking for a series of red flags that indicate a potential problem:
1.      Does the program promise to recover your child from autism?
2.      Are the total costs hidden?
3.      Do you have to but special headphones and special equipment?
4.      Is the program prohibitively expensive?
5.      What evidence do they offer? (website articles and testimonials do not count as good evidence)
Traditional occupational or speech therapists may offer the program as part of their routine therapies, making it appear to be legitimate and evidence-based. While it can be hard to say no to a therapy, if the therapist is pushing the purchase of the items related to AIT, then parents should strongly consider opting out. With little to no evidence that this works and with the AAP’s recommendation that based on the science at hand it not be used, parents might want to think very carefully before pursuing this option. 

The reality is that the therapy is in use by therapists and parents are exposed to these kinds of therapies without ever being informed of the legitimacy or the quality of the evidence for the treatments. It's not just auditory integrative training or facilitated communication. It's sensory integration training and rapid prompting method, and so on. Not all of these can cause harm, but at best they are wild goose chases, and drains of income and time. Parents are in a no-win situation here, inundated with more and more information, with new therapies, with hopes, dreams, and promises. 
In the end, parents must make the best decisions they can with the information they can find. With far too many treatments and therapies just a google search away, the demands on parents to make informed, practical decisions for their children is a daunting task.
Appeared at TPGA on Wednesday Jul 13.