Tuesday, December 25, 2007

Merry Christmas!

From my family to yours, Merry Christmas!



We hope you spend the day with people you love, and we wish you the best in the coming year.


Thursday, December 20, 2007

An Exhortation

In case you haven't had enough calls to action recently, what with the Ransom Notes campaign and all, I've got another one for you.

Yesterday I received an email notification from the NIH (National Institute of Mental Health) Autism Listserv. This email was an RFI (Request for Information) for the autism community to make recommendations for future autism research directions. Here's the email:

"The National Institute of Mental Health has issued a “Request for Information
(RFI): Research Priorities for the Interagency Autism Coordinating Committee
Strategic Plan for Autism Spectrum Disorders (ASD).” Please see the
official notice for more information and instructions for responding by the
deadline of January 4, 2008:
http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-003.html
The purpose of this time-sensitive RFI is to seek input from ASD
stakeholders such as individuals with ASD and their families, autism advocates,
scientists, health professionals, therapists, educators, state and local
programs for ASD, and the public at large about what they consider to be
high-priority research questions. Please forward this email or share this
request with any individuals or groups who may be interested."


Please note the deadline - January 4. This is a mere 15 days from now, so a sense of urgency seems appropriate at this time.

If you follow the link provided in the email, you will see a bit more information about the RFI. Some key phrases stand out:

"The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research."
Yes, that actually stated that there is a legal mandate driving this process. Though this circumstance is accompanied by its own set of problems, I think it is clear that some conclusions will be reached and a plan will be laid out. If you, like me, have any concerns that the plan may not end up to be what you envision as being supportive of or appropriate to autistic people, now is the time to voice that opinion.

"In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input."
Huh? They had a meeting already? Well don't worry, a very strong and appropriate statement was delivered by Kristina Chew that hopefully helped to frame some of the decisions that will be taking place. Thank you for your timely and well-chosen words, Kristina.

"To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:"
The 4 areas are Treatment, Diagnosis, Risk Factors, and Biology. While it is in all likelihood too late to have input on what the 4 areas are, it is certainly the right moment to influence what direction these 4 areas will go in. If you believe that vaccine studies are not a fruitful way to spend autism research dollars, say so now or risk Risk Factors being all about that. If you are an autistic person who has benefitted from the GFCF diet and believe that research will result in the same benefit being granted to some other autistic people, please let the IACC know that now. If you feel that Asperger's Syndrome and Autism Disorder belong in different diagnostic categories, argue why you feel that way. If you think the JRC is an abomination, perhaps a recommendation to the IACC about researching electroshock therapy is in order.
Notice that the RFI also allows for the category "Other areas of research". Perhaps this is where you want to step in and try to make a difference in how future research directions will be established.

Conveniently, contact info for Diane Buckley, Office of the Director of the National Institute of Mental Health, is also listed for the purpose of supporting inquiries.

I have followed any number of autism debates over the past couple of years, and am acutely aware that virtually all elements of the autism community feel under-represented. Virtually all feel strongly that research should be oriented a certain way. Well, guess what folks? Now - NOW! - is the time to exert your individual and collective influence on the process. I exhort each person, each 'stakeholder' in the autism community, to take some time in the next two weeks to organize your thoughts and present them to the NIH.

Wednesday, December 19, 2007

The Power of Community

I just received an email notification from Ari Ne'eman, President of the Autistic Self Advocacy Network and current spokesperson for the wider disability community, that NYU has announced the end of the 'Ransom Notes' campaign.

Here is a link to Dr. Koplewicz's official statement.

A few brief words about all this:
First, I can't overstate how impressed I have been by Ari Ne'eman's leadership during this process. Though I am not sure at what point Ari assumed his unofficial leadership role, or how he individually ended up in that position, he acquitted himself admirably by all measures. Ari, in his writings encouraging a response from the broader disability community, facilitated a tone of honest and open communication by using such a tone himself. Noticeably absent from his statements was the contentious nature of so many debates and discussions, at least those in the autism community. Ari was consistent in his position as a coalition-builder, was appropriate in his chosen use of diplomacy to achieve the goal of ending the ad campaign, was clear in his explanations of why the campaign was harmful and offensive to those who live with the labels/disabilities it centered on, and has fostered an environment in which Dr. Koplewicz is now willing to sit at the table with the disability community and craft a campaign that can bring about the ends that NYU initially was striving for.

As I said in my earlier post on this topic, I don't think Dr. Koplewicz ever intended to cause harm to anyone. Quite the contrary, I am thankful that there are professionals who dedicate their lives to careers that serve to benefit people with disabilities of all kinds, and he is certainly to be included in that group. I think this is clearly evidenced in his closing statement about the 'Ransom Notes' campaign: "We hope you will partner with us to bring the issues surrounding child and adolescent mental health to the top of America's agenda. Work with us as we fight to give children and their families equal access to health insurance, remove the stigma that the term "psychiatric disorder" so clearly still elicits, and, most importantly, support the drive to make research and science-based treatment a national priority." While there are still some things in his statement that I disagree with or are couched in such a way as to indicate that his hand had been forced, I am appreciative of the steps he has taken today.

Here are some closing words from Ari Ne'eman which I think encapsulate the issue well:

"This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign.
Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place.
We are strongest when we stand together, as a community, as a culture and as a people.
Thank you to all of you who have made this victory possible.
Remember: 'Nothing About Us, Without Us!' "

Tuesday, December 18, 2007

Calvinism

It is so easy to become overly serious. That's why a little levity is good medicine every now and then. Enjoy these cartoons - there is a little Calvin in all of us. Yes, and a little Hobbes, too.










Wednesday, December 12, 2007

Horton Hears a Who

I thought it fitting that I open my response to being awarded by ABFH the "Roar for Powerful Words" by evoking an image of one of the finest fables relating to small voices being heard.

In this book, the most famous line (and one that has gained traction with the Pro-life philosophy that I identify with and support) is:
"...a person's a person, no matter how small."

Needless to say, this phrase can and should have lots of play in any discussion of disability rights, as well.

So I am pleased and humbled by ABFH's decision to tag me with this award. I quite simply don't feel deserving, especially considering the other bloggers selected by ABFH (and ABFH herself) and their range and depth of thought on many of the same subjects covered here. If I could smile shyly in an "Aw, shucks" kind of way on my blog, I would be doing so right now.

When I read the post of the originator of this award - Seamus - I saw mention of the sideways glances given to blogging by the mainstream media. In his words, "A Roar For Powerful Words is the chance to scream from the mountains the good news about the powerful posts that are produced every day in the blogosphere, despite what some mainstream columnists and journalists claim." And when you look at the ethics (or lack thereof) and social mores of some bloggers, it is apparent that blogging is the literary equivalent of the Wild West in many ways. But to my mind that makes it all the more notable that some people exercise their right to free speech and communication in ways that reflect the responsiblity we feel to our society, our communities, our families, ourselves. These are the blogs I feel are deserving of the "Roar for Powerful Words" award, and that is why I feel pleased to be included in that group.

With this award comes the request to "... examine exactly what it is that makes writing good and powerful." In keeping with the title and theme of this blog, here are three things that do just that, in my opinion:

*Be yourself. When writing, we all have a voice. Attempting to sublimate the natural voice that comes when the pen touches the paper is a mistake.

*Choose a topic you can be passionate about. I am a person of low emotional range - a stony-faced stoic in many ways. But when my son received an autism diagnosis, I allowed my new-found passion to guide me to places I never thought I'd be. And to write about things I never thought I'd write about.

*Be respectful. It is fine to be a critic, but I feel it is important to do so in a respectful way. If you want to criticize someone or something, have some sound thinking to support your position and don't be afraid to have your positions challenged by people who think differently.

This award will not sit idle here on my blog. It is now my pleasure to offer it to other bloggers.Though we are supposed to pick five, I have only three to mention.
For being a clear, strong, and consistent voice in teaching people what is right and wrong in autism advocacy, Joel Smith at NT's are Weird.
For proving that actions can speak even louder than words, Alex Bain at Run Man Blog.
For proudly and positively discussing views of multiple disabilities, NiksMom at Maternal Instincts.




Tuesday, December 11, 2007

Solidarity

Edit as of 12-12-07
***
Individuals can now endorse the disability community's joint statement by going to http://www.petitiononline.com/ransom/petition.html
***


Solidarity.

The autism community has gained solidarity - among many of its own organizations and those that involve other disabilities - in response to New York University's "Ransom Notes" campaign.
For those of you who have not yet seen the ads being featured as part of this campaign, please take a moment to view them here...

Read the notes - no really, go read them - allow your natural emotional response to surface. If I set all personal experience with autism aside for a moment and take a fresh look - seeing these "notes", I feel a sense of panic, of a wrong having been committed. That I need to rush to the defense of someone, perhaps come up with some cash to solve the problem. There is an implication of crime, of guilt. A need for swift justice.
I can only speak for my own son when I say ... he doesn't need this kind of publicity.

In an astonishingly misguided effort to raise awareness on Autism, Asperger's, Bulimia, ADHD, Depression, and OCD, the NYU Child Study Center has unwittingly produced precisely the result their campaign was 'designed' to combat. The response to these notes, as desired by the ad agency who developed the theme, is powerful and visceral. But it produces the wrong response. Instead of reducing stigma associated with these dosorders, it reinforces the stigma.

In a remarkable display of unity, the blogging community has stepped forward in an attempt to help provide a unified response to this egregious affront to people affected by the aforementioned group of disorders. Much of the work in doing so has been borne by one Ari Ne'eman, president of the Autism Self Advocacy Network.

Ari prepared and delivered what I consider to be an excellent response to the leaders at NYU. His response acknowledges their good intentions, but clearly and appropriately spells out just exactly why the 'Ransom Notes' campaign has been met with such resistance within the autism community. Since Ari has done such a great job of reflecting my own thoughts on the subject, I need only to shut up at this point and post his letter here.

**********

Dr. Harold S. Koplewicz, M.D.
The NYU Child Study Center
577 First Avenue
New York, NY 10016



Dr. Robert Grossman, M.D.
NYU School of Medicine
IRM 229
560 First Avenue
New York NY 10016



John Osborn
President and CEO of BBDO New York
BBDO New York
1285 Avenue of the Americas
New York, NY 10019



Richard Schaps, Chairman and Chief Executive Officer
Van Wagner Communications, LLC.
800 Third Ave 28th Floor
New York, NY 10022



To the NYU Child Study Center and the supporters of the “Ransom Notes” advertising
campaign:
We, the undersigned organizations, are writing to you regarding your new ad campaign
for the NYU Child Study Center: “Ransom Notes”. Our organizations represent people
with a wide range of disabilities, including those portrayed in your campaign, as well as
family members, professionals and others whose lives are affected by disabilities. As
people who live and work with disability, we cannot help but be concerned by the way
your campaign depicts individuals with disabilities. By choosing to portray people on the
autism spectrum as well as those living with OCD, ADHD and other disabilities as
kidnapped or possessed children, you have inadvertently reinforced many of the worst
stereotypes that have prevented children and adults with disabilities from gaining
inclusion, equality and full access to the services and supports they require.
While the “Ransom Notes” campaign was no doubt a well-intentioned effort to increase
awareness and thus support for the disabilities it describes, the means through which it
attempts this have the opposite effect. When a child with ADHD is described as “a
detriment to himself and those around him,” it hurts the efforts of individuals, parents and
families to ensure inclusion and equal access throughout society for people with
disabilities. When individuals with diagnoses of autism and Asperger’s Syndrome are
told that their capacities for social interaction and independent living are completely
destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading
misleading and inaccurate information about these neurologies. While it is true that there
are many difficulties associated with the disabilities you describe, individuals with those
diagnostic categories do succeed – not necessarily by becoming indistinguishable from
their non-disabled peers – but by finding ways to maximize their unique abilities and
potential on their own terms.
The “Ransom Notes” campaign places a stigma on both parents and children, thus
discouraging them from pursuing a diagnosis that might be helpful in gaining access to
the appropriate services, supports, and educational tools. The autism spectrum should be
recognized for what it is: a lifelong neurological condition – not a kidnapper that steals
children in the dead of the night. The devaluation of the lives of people with disabilities
has led to public policies and funding decisions that have forced thousands of people with
disabilities into nursing homes and other institutions. The unintended consequences of ad
campaigns like yours give legitimacy to the taking away of the civil and human rights of
people with disabilities.
It is true that diagnoses of ADHD, autism, Asperger’s Syndrome, and OCD often
accompany great hardships for families. It is true that depression and bulimia are terrible
disorders that require treatment. Yet, the way you choose to convey those messages is
inappropriate and counterproductive. Individuals with disabilities are not replacements
for normal children that are stolen away by the disability in question. They are whole
people, deserving of the same rights, respect, and dignity afforded their peers. Too often,
the idea that children with disabilities are less than human lies at the heart of horrific
crimes committed against them. The recent tragic instances of violence against children
and adults on the autism spectrum and with other developmental disabilities are linked to
the perception that these people are less than human. We – the adults, families,
professionals and others affected by these conditions - assert that nothing could be further
from the truth.
We are also concerned that the negative stereotypes the “Ransom Notes” campaign
depicts could make it harder for the many people with disabilities and their family
members who are working to ensure that students with disabilities have the right to be
included in their home schools while still receiving all necessary services. Federal law
mandates that students with disabilities have the right to a “free and appropriate public
education” in the “least restrictive environment”. Your advertising campaign claims that
children with disabilities could be a detriment to those around them and as a result hurts
the efforts of parents working to secure the opportunity for their children to be included
with their peers.
While we recognize and applaud the good intentions intended by this effort, we must
urge you to withdraw this campaign immediately, as it threatens to harm the very people
whom it seeks to benefit: people with disabilities, their families, and their supporters. In
the press release announcing this campaign, the Center gave as one of its goals
“eliminating the stigma of being or having a child with a psychiatric disorder”. We are in
full agreement with the goal of eliminating stigma against people with disabilities and
their families. Yet, this campaign serves to increase that stigma rather than lessen it. We
hope that you will heed our concerns and those of many other people with disabilities,
family members, professionals, and countless others and end the “Ransom Notes”
advertising campaign.
Please do not to hesitate to contact any of the organizations listed as signatories to this
letter in order to better solicit the opinions of the disability community prior to your next
advertising campaign. We would be more than glad to help the Center to develop better
strategies to achieve its excellent goals. The NYU Child Study Center has the potential to
do enormous good for children and families affected by disability. By showing that the
Center respects the views of people with disabilities, families, and professionals, you can
make that aspiration a reality.


Sincerely,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org


Bob Kafka
National Organizer
ADAPT
http://www.adapt.org/


Diane Autin
Executive Co-Director
Statewide Parent Advocacy Network of New Jersey
http://www.spannj.org/


Jim Ward
ADA and the National Coalition for Disability Rights
http://www.adawatch.org/


Janette R. Vance
The Family Alliance to Stop Abuse and Neglect
http://www.thefamilyalliance.net/


Estee Klar-Wolfond
The Autism Acceptance Project
http://www.taaproject.com/


Barbara Trader, MS
Executive Director
TASH
http://www.tash.org


Jim Sinclair
Autism Network International
http://ani.autistics.org/


Stephen Drake
Not Dead Yet
http://www.notdeadyet.org/


Stanley Soden
Director of Independent Living Services.
MOCEANS Center for Independent Living
http://www.moceanscil.org/


Ethan B. Ellis, Executive Director
Executive Director
Alliance for Disabled in Action, Inc.
http://www.adacil.org/
President
Next Step, Inc.


Phil Schwarz
Vice President
Asperger Association of New England
http://www.aane.org/
Member, Board of Directors
Autism National Committee
http://www.autcom.org/

Thursday, December 6, 2007

USD January Conference

I am pleased to announce that I and a few other Autism Hub bloggers will be presenting at the University of San Diego Autism Institute Conference in January!

Several bloggers will be presenting in person - including one of my personal favorites, Bev from Asperger Square 8. The title of our presentation is "Enhancing Communication: Blogging and Autism". We plan to discuss a number of issues related to blogging and the Autism Hub, with each presenter speaking of their personal experience and area of focus. Our presentation will also feature two video presentations which will help the attendees gain a greater understanding of how the Hub came to be what it is today and how its contributors and readers feel about it.

If you have been reading this blog for a while, you may recall a series of posts (1, 2, 3)I did in July about the Summer Conference I attended at USD. I was very impressed with the topics covered, the expertise of the presenters, and the emphasis on providing viable supports for autistic people that emphasized the person over the disorder.

The conference will take place from January 7-9 in San Diego. The USD campus is among the most beautiful in the U.S., and the conference itself will take place - appropriately - in the beautiful Joan B. Kroc Institute for Peace and Justice. Aside from our presentation, topics will include:
-Understanding Sensory and Movement Differences (by Martha Leary, read here)
-The role of development of learning and other support accomodations
-Applying Dynamic Systems Theory
-Humanizing and personalizing positive Applied Behavioral Analysis approaches
-Understanding the lived experience of persons with the autism label

I look forward to seeing those of you who are able to attend!

Saturday, December 1, 2007

Making it Worthwhile

When I started this blog in April of this year, I had already spent significant amounts of time familiarizing myself with much of the autism "buzz" on the internet. There is lots out there, from message boards to propietary websites, from PubMed to weblogs, members-only groups to daily newsfeeds.
As with anyone who wants to become involved in the online community, I had to decide what was important to me. What did I feel was an area that would stand to make me a better father for my autistic son? Did I have anything to offer to the online discussions, considering that so much had been so adequately covered already. I'm not particularly confrontational, I don't have advanced science degrees, I dont have enough internet savvy to run a "newsfeed"-type site.
One area that I felt affected me most strongly is the interaction and relationships I was able to develop with autistic adults who communicate via the internet. I've got to say this was a surpsrise to me - a pleasant one at that - because when I first encountered these online self-advocates I was still early enough in the parenting process that I did not realize the extent of positive outcomes for autistic individuals. I took it upon myself to read a lot about what they had to say, how their lives looked right now, what affected them positively and negatively, what similarities and differences they shared. And slowly but surely I began to shift my view of autistic people from being a homogenous group from the pages of a textbook to being a group of people as varied and diverse in their abilities, pursuits, limitations, interests, and relationships as will be found in any group anywhere. All this took place before we had any indication of what skills my son would someday develop. In those early months and throughout the first year+ after diagnosis, Jason was nonverbal. He had frequent and powerful stims. He seemed very detached from us, and he had extreme sensory problems. He still faces many of those challenges, but as he grows we are able to say with certainty that he is not one of the most negatively affected by autism. Jason has no SIBs, is developing strong communication skills, and does not seem to deal with the anxiety issues I hear so commonly about from autistic folks.

So I have spent much time on this blog discussing autistic people - not just my son - in the context of cultural issues, being accepted in our society, government funding, transportation issues, affect on parenting styles, evidence based interventions, cause and cure issues, self-advocacy, and many other topics that I feel are important.

Having said all that, I recently received an email from a reader. I want to share excerpts of this email with you and to express that it is messages like this that make all the work that goes into this blog worthwhile. This was in response to a post I did last month when I indicated my focus on the blog will diminish due to other familial and professional responsibilities and changes in the online autism community:

Hi Steve,
I wanted to thank you again for all the support and encouragement you've
given me. It really means alot to me.
I like reading your blog very much.
The way that you care about you kids shows in your writing. You have a
background in studies that adds alot to what you have to offer.
You have shown an interest in autistic adults on your blog that is
unmatched by anyone I've seen ... We need people like you.
I have fewer responsibilities than you and will look things up for you as
just a friend and supporter if it will help give you more time and more to write
about. There are actually several subjects that you have posted about that are
a lot of interest to me and I would like to learn more about them. It would help
me learn and help me express myself better as well. Please continue to blog when
ever you can and let me know of any way I can be supportive.
I hope you and your family are doing well.
Thanks


If I have made even a moderately positive impact on even one person, then it makes this whole undertaking much more gratifying.

Sunday, November 18, 2007

More Food and Friends

At the end of my most recent post, Breaking Bread, I talked about how we were having some friends visit this weekend, I would be attempting a fairly difficult recipe - authentic Spanish Paella (sans rabbit, of course) - and that we would be heading off to "A Day Out With Thomas".
So its only fair that I report the results of the weekend .... which was a rousing success on all levels!
First up, the Paella. You must realize that I am a foodie with little opportunity for outlet of my foodie-ism. I am not a big eater, but I like what I like and often crave well-prepared fresh foods . Suffice it to say that flavor trumps dietary value in my book. So when I set out to decide what to make for our guests this weekend, I hearkened back to a recipe I last made, with the help of my visiting-from-Chicago gourmand best friend about 7 years ago (pre-kids). Actually, this is the same recipe we used then.
Essential is the Paella pan. This is a 13-inch skillet with low, flared sides and dual handles. It is the utensil that gives the dish its name. Paella is Spanish fare, and therefore it is prepared in numerous forms dependent upon the region the cook hails from. In coastal regions, for example, clams and oysters are de rigeur. In regions with hard winters, such as the mountainous areas, cured meats are common ingredients. Since I am not a seafood guy, I lean more towards the "turf" than the "surf" version. I chose to use bone-in chicken breasts (chopped into thirds) and Portuguese Linguica sausage for the meats, and green beans, artichoke hearts, and red peppers for the veggies.
The true heart and soul of Paella, however, is the rice and the saffron. Saffron - that rarest and most expensive of all spices, gives Paella its characteristic yellow color and unmistakeable aroma. The rice I used is Arborio - a medium grain that tends to end up al dente as opposed to mushy or chewy.
The recipe took me three hours to complete - non-stop cooking. I probably could reduce the over-the-stove time with experience, but since I am a Paella novice I really had to sweat every step this time.

Here I am slowly sauteeing the red peppers. In the pan you will notice a whole head of garlic with the top trimmed off. This stays in the pan the whole time - through all steps - and imparts a wonderful, deep, rich garlicky flavor that deepens as the process unfolds. The sauce pan holds the saffron-infused chicken stock that provides the unique flavor of the dish. The broth won't be added for another hour or so from this point. The red peppers are sauteed after the chicken and sausage has been done. After they have softened considerably, I will remove them to a plate and tent them with foil. This way, the steam their heat builds under the foil will help loosen the skin so I can easily remove it before adding the peppers back in for the final step. Details, details!
While all that sauteeing is going on, I have to keep chopping,mincing, and grating. Yes, grating. Part of the key to a good Paella is the Sofrito. The Sofrito provides the flavor base. It is the equivalent of a Mirepoix, or the Holy Trinity of celery, onions, and bell pepper in Cajun cooking.
But since Paella does not stew or roast for long periods, the flavor base has to be pre-deconstructed, so to speak. So what I did is grate a whole tomato and grate a whole onion to make a big tomato/onion mush. To this, I added thin slivers of garlic (yes, more garlic). Also in this picture you will see a bottle of Spanish Rioja - a sturdy red wine made from Tempranillo grapes. When in Rome, and all that, right? The lemon wedges are to serve with the finished product for those who prefer to add a squeeze of tartness. The Bosc pears are for the salad.
And now, the finished product! At this point I have boiled down over 5 cups of saffron-infused chicken stock. By rotating the Paella pan over two burners, as well as covering it with foil and placing it in a 425-degree oven, I have caused the rice to absorb all this liquid. Also, I have been passably proficient in producing the pinnacle of Paella perfection (awesome alliteration, eh?) - the Soccarat. This is the term that describes the light brown crusting that develops on the bottom layer of rice in the pan. It is just shy of burnt, and is the final piece of the multi-layered puzzle of flavor in this dish. Note in the middle of the pan that whole head of garlic still tagging along.
Okay, no more food talk. I am sated for a while, and now return to my regular diet.

This morning we went to 'A Day Out With Thomas'. This was out third year going, as Jason is perhaps the biggest Thomas fan the world has ever known.
{Aside - One of the best moments I have ever had with Jason was a time when he had found the Thomas website (by himself, of course). He was in his fourth year, and was gaining some verbal skills at the time. He still had lots of issues - and still does - with voice volume modulation, so I was trying to teach him to whisper. To do so, we got on the webpage that has all the Sodor characters listed vertically, with a brief synopsis (a CV, if you will) of each one. Well, little did I know he was going to go through every single one, whispering their name and 'story'. I was simply overwhelmed with the volume of information he threw at me that night (it was late at night as I remember, before we discovered melatonin), and amazed at his ability to keep reverting to a whisper as I reminded him. It was one of those moments where we just ... connected. Those moments were rare back then, and I'll always appreciate his love for Thomas as being one of the things that gave us some 'conversation material'. }
What would make this year's visit interesting would be our friends' little boy - all of almost-three years old - and his undying enthusiasm for all things Thomas. And the day certainly lived up to its billing.









We rode the train pulled by the life-sized Thomas engine - that was fun as always.This is Colin on the train, straining to be turned loose on the unsuspecting passengers.











We also got some pictures with Sir Topham Hatt. Trying to get three young boys to look at a cameraman is difficult in any case - when you add the Amphetamine Personified that is Sir TH, it becomes nigh on impossible. Making the day even more .. interesting .. is that it was close to 90 degrees fahrenheit. It was just downright HOT and it was hard to escape the heat and sunlight. If you combine the effects of the heat, the crowds, the excitement, having guests spend the night before at our house, all the Thomas paraphernalia, and some ice cream you begin to see the recipe for what parents of ASD kids know to be somewhat of a problem - sensory overload.




Today, though, Jason surprised us all. He actually agreed to let a clown paint his face! This is a huge step for him, and one that caught us completely off guard. His sensory integration issues would have prevented this from even having been a consideration in the past. This is a huge difference from last year, and we are just so proud of him for doing this today. He has always had a lot of sensory issues, and that makes this a really big deal!

Saturday, November 17, 2007

Breaking Bread

Recently, we had a very nice visit from some friends. Their family is kind of a mirror image of ours - 3 kids, each set within a few months of age, oldest child autistic, semi-rural lifestyle. Its always a pleasure to spend time with them, and since it was at our house, I made lunch. Prior to having kids I was a pretty avid home cook. As with so many things, this changed a bit when the responsibilities of parenting took hold. I'd gladly make that exchange again 100 times, but that doesn't mean I can't long for the 'easier' times (funny how they only seem easy in retrospect. Aaaah, such is life.)
So I made the usual; sandwiches, salad, side dish.
The sandwiches featured smoky, thin-sliced Black Forest Ham piled on slices of crusty french bread. I added freshly grated Gruyere cheese with some freshly chopped tarragon for some flavor complexity and then spread on some Dijon mustard. I then coated the bread slices with butter - on the outside, of course - and toasted the sandwiches in a grill-pan till the cheese was all melty and the tarragon flavor had been released.
In the meantime, I sauteed a skilletful of cauliflower florets in olive oil until they took on a golden color and nutty aroma (I love cauliflower). I removed the cauliflower from the pan and added a whole chopped onion and more oil (I've never been noted for low-fat cooking). Once the onion was sweating, a BIG pinch of Spanish saffron went in, followed by some chicken stock. At this point I added a can of stewed Roma tomatoes, some toasted pine nuts, and a heap of chopped Italian parsley. And, of course, the sauteed florets. After simmering for a bit to reduce the liquid, I coated the whole thing with some homemade fresh garlic breadcrumbs (made earlier in the day by toasting some of the crusty french bread I used for the sandwiches, along with oil, parsley and minced garlic in the food processor) and put the whole pan right in the oven at about 400 degrees. The result of all this is a rich, deep bronze panful of spiced, roasted cauliflower with a coating of crusty garlic breadcrumbs. Heaven.
Moving on to the salad. A bed of field greens such as baby spinach and frisee. One peeled and chopped Bosc pear (I like Bosc pears because they are dry and crispy like apples - perfect for salad). A big handful of toasted walnuts (toasted side-by-side with the pine nuts earlier in the day). And some crumbled, rich, strong blue cheese. I'd have used Stilton, but the market didn't have any. Finish it with a Balsamic Vinaigrette - a really light, bright one - and that makes one heck of a lunch.
But wait! A really good meal always requires a wild card. Sometimes it is a special announcement someone makes while eating. Sometimes it is a big storm during the meal, or a hallmark being celebrated. An old friend makes any meal special. Even the perfect song (like, for example, anything off 'A Charlie Brown Christmas' album). In this case, our guests had brought a bottle of wine. This was a Zinfandel that comes from the vineyard they had been married on. Awesome sentimental value, superb wine, the wild card was complete, and the meal was a success. Gotta love that.

Tomorrow we have some other friends coming over. This time, they are spending the night so we can all get up and go to 'A Day Out With Thomas' in the morning. Their little boy likes Thomas the Tank Engine as much as ours does, and we will get to see the 'real' Thomas engine and ride in the train. I'll make an authentic Spanish Paella (yes, saffron seems to be the spice of choice for me these days) with chicken and sausage, artichokes, sweet peppers, green beans, arborio rice, and a sofrito of grated onion, garlic, and tomato. And perhaps a Spanish Rioja to add some depth to the meal. I just love food and friends.

Friday, November 16, 2007

Contradictions and Strawmen

In another fascinating glimpse at his relentless attempts to attack and degrade anyone who identifies with the concept of Neurodiversity, Harold Doherty has recently expounded upon the evils to be found at the National Autistic Society. In their own words, "The National Autistic Society provides a wide range of services across the four nations for people with autism, their parents, carers and the professionals who work with them."

So why is the NAS under attack by a prominent autism advocate in Canada? Because of this article in the Independent. In it, a parent of an autistic child - one who aligns herself with Treating Autism, a "rival organization" according to the Independent article - casts disdain upon the NAS for their attempts to promote public awareness of autism via the recent "Think Differently About Autism" Campaign. Please read the full article for details on what the journalist feels lie at the heart of the debate.

So, in classic form, Harold Doherty saw an opportunity to use this article as a means to attack "Neurodiversity". From his post on the topic:
" In the United Kingdom parents fighting to help their autistic children overcome the deficits of their autism disorders, fighting to help their children as all parents do, face opposition from a National Autistic Society ..."
and
"...saying that society should change how it views autism will not help those autistic children who need help for the more serious symptoms of autism, a neurological disorder."
and
"Neurodiversity ideologues are not human rights advocates. They are in fact suppressing the human rights of autistic children..."

Fascinating stuff.

Here's the thing - Harold once again is walking away from his own stated beliefs - that people who have Autism Disorder should be supported by Evidence-based treatments/interventions - because of the expediency of being able to use this platform (the Independent article) to launch another attack on Neurodiversity. Perhaps someday Harold could clarify exactly who "Neurodiversity" is, as the group seems to grow all the time by his definition (The NAS involves over 100,000 people). Harold, by supporting this particular pair of people and the group they represent - praising them as "Autism Heroines" - is supporting a group that endorses numerous biomedical treatments that are backed by no evidence. This group also fails to endorse any behavioral treatments, including ABA which Harold claims is the Gold Standard in Evidence-based autism treatments. This link shows the list of treatments endorsed by Treating Autism, the organization that includes "Autism Heroines" Lara Hawkings and Sally Eva. Does this look like an Evidence-Based Approach to you? This page includes such gems as Chelation, "Gut Bug Treatments", and a link to Lupron Protocol (look under "New and Promising!").
To make matters even worse, Harold does a follow-up post that features a quote from one of the "heroines" mentioned in the first post. One line from that quote is: "The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum. " Maybe its just me, but I think this person is clearly indicating that the NAS employing autistic people is a bad thing. Can she be serious? Maybe I am jumping to conclusions, though. Maybe what she is really saying is that its ok for the NAS to employ autistic people, as long as they shut up. Amazing.

So let's review how many strawman arguments and self-contradictions Harold Doherty can perform in the brief span of two short posts:

"In the United Kingdom parents fighting to help their autistic children overcome the deficits of their autism disorders, fighting to help their children as all parents do, face opposition from a National Autistic Society which has drunk deep from the kool aid of the neurodiversity 'movement'." Here, Harold offers the strawman that 'Promoting Autism Acceptance' = 'Opposition to Helping Children'.

"In the UK the National Autistic Society has adopted the "autism is beautiful" ideology and frowns upon parents like Lara Hawkings and Sally Eva who fight to help their own children overcome and recover from the sometimes debilitating deficits of their neurological disorder." Strawman: That not supporting unproven biomedical treatments for autism equates to 'frowning upon' parents who pursue these treatments for their kids.

"Neurodiversity ideologues are not human rights advocates. They are in fact suppressing the human rights of autistic children; their right to be treated for their neurological disorders. And they are suppressing the rights of parents to help their own children." The fallacy here is that biomedical interventions are a legitimate treatment for neurological disorders. Also found here is a contradiction to Harold's stated beliefs that only Evidence-based treatments should be considered. His profile on his blog states: "Evidence based treatment, education and residential care by properly trained service providers are required to help the 1 in 150 persons who have an autism spectrum disorder." Nothing there about Low-dose Naltrexone or Urecholine.

"...NAS should be ashamed of itself for imbibing this topsy turvy ideology and for helping suppress the human rights ... of autistic children in the UK." Ok, I don't even know how to classify this ludicrous statement. The NAS is helping to suppress the human rights of autistic children in the UK. How? By asking people to take some time to improve their understanding of autistic people?

(From the comments section) "Anecdotal evidence is evidence, it is just not as strong as other forms of evidence. An evidence based approach looks at the various types of evidence in support of an intervention and ranks them according to the quality of the evidence with anecdotal ranking very low." This is where Harold begins to realize that the position he has taken over the years - that Evidence-based treatments are the only way to go - creates a trap for him. How can he attack Neurodiverse-associated scientists who oppose bogus biomedical treatments due to their lack of evidence since he also opposes such treatments? The statement I just quoted answers that question. So this one falls under self-contradiction.

(From Comments)"The real issue with NAS v parents, and it is a general issue between neurodiversity generally and many parents, is whether treatment and cure should be sought for autistic children at all." Okay, this is the ultimate strawman. In this one, Harold claims that ND advocates believe that no treatment, intervention, or support is appropriate for autistic people. I can't believe people still hold on to this one. Please, will someone show me somewhere, anywhere, that anyone having anything to do with Neurodiversity has made this statement? Even if you were to find one instance, which I doubt, I could offer hundreds of instances where people have said the opposite. This is one argument that has worn awfully thin.

(From comments)"ABA is an effective intervention based on the quantity and quality of the research although it is not a cure." Another contradiction, in that Harold has held up as "heroines" two people who support an organization that has nothing to do with ABA promotion or discussion. It is strictly a biomedical group. The NAS, on the other hand, has information about ABA right there on their website. So how does Harold justify supporting Treating Autism over the NAS?

(From comments)" Neurodiversity advocates, including NAS, oppose attempts to treat or cure autistic children." Whoops! There's that silly argument again.

And, finally, Harold says of this quote that it "...summarizes nicely one of the most intense points of discussion in world autism debates:"
"The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum." As I stated above, this is a deplorable statement. Harold, as an autism advocate, is being highly self-contradictory for supporting it.

Wow. Normally I am a pretty soft-spoken blogger who does not get too deeply involved in blog wars. But when I read this nonsense from Mr. Doherty, well, some things you just can't take sittin' down, as they say.

Wednesday, November 14, 2007

Not Knowing

Though it has been more than a few years now, I still recall elements of my undergraduate degree. Though I did not pursue it as a career, I majored in Psychology with an emphasis on Neurophysiology. In the lower level Psych classes, it seems that just about everything they taught us was based on the concept of "stages". Erikson's Stages of Psychosocial Development. Kohlberg's Stages of Moral Development. Piaget's Stages of Cognitive Development.

In keeping with the basic idea I was left with - that the majority of these developmental diagrams were just flawed attempts by smart people at making sense of an incredibly random and unpredictable series of potential developmental trajectories - I will now introduce to you Steve D's Stages of Autism Acceptance Development (for NT's).
Let me begin by saying that my stages will be tremendously flawed, unable to be generalized to anyone but my own self, and might even piss a few people off.

Stage 1: You don't know, and you don't know that you don't know.

Stage 2: You don't know, and you begin to know that you don't know.

Stage 3: You know, but you don't know that you know.

Stage 4: You know, and you know you know.

Any parent of a child diagnosed with autism is intimately familiar with Stage 1. This is the time when we know nothing. We are pretty much going off the limited and largely fallacious information provided to us by the person giving the diagnosis. This information usually contains the line, "A person diagnosed with autism may even someday have the ability to live independently in a group setting." While true for many autistic people, this flawed statement does not even begin to describe the real set of possibilities that exist for many others who receive this diagnosis in their first few years. But when someone is new to their child's diagnosis, you just don't know these things. One also, if they share a similar background to me, has limited if any experience in knowing autistic people. One has virtually no working knowledge of what "autistic" really means. One has no conception of the range of difficulties the disorder can cause people to experience, no conception of the huge variance in personal experience autistic people can live with. It also has an overriding negative connotation - another thing which proves that at that stage we "don't know".

At some point later, we enter Stage 2. Everyone does. This is sometime after we have spent X amount of hours researching treatment options, funding options, outcome studies, reviewing discussion boards, attending local meetings, joining Autism Societies, meeting parents of other special needs kids via the school district. This is the point where we say to ourselves, "Crikey! (if we are Australian, anyway, which I am decidedly not) There is so much to learn!" And so we go about it. This is a crucial stage, and is the one that usually devolves the autism community into sects. Based on choices made at this point, one tends to set down a particular path. There are a million choices, but most are settled on while we are still in the "Knowing we Don't Know Stage".

I cannot comment on the last 2 stages, other than saying this:
-I am still in Stage 2
-I know a few NT folks who I think are in Stage 3.
-A non-autistic person cannot get to Stage 4.
Someday I will learn all about Stage 4 from my son. He is a bright, verbal, autistic boy who is not facing some of the challenges that other autistic people are facing. He is going to have his own set of challenges, especially I think those related to navigating social situations. I hope to raise him in such a way that he can, if he so chooses, be the ultimate advocate. An autistic person with Steve D's Stage 4 Awareness.

Wednesday, November 7, 2007

Excuses, Excuses

I'm not sure what the topic of this post is. I guess it is an admission that I am passing through a (hopefully brief) period of flagging enthusiasm for keeping my blog as current as possible. It has been a week since I posted anything at all, and a few weeks since I have posted anything resembling valuable contributions to discussion relating to autism (That post, by the way, titled "The Autism ... Continuum?" netted some of the best and most varied comments I have ever received, comments that originated from a very diverse range of people covering various age groups, NT and ASD, several countries - all in all, good stuff).
Don't get me wrong - I don't plan on stopping. Its just that there are so many things going on in my life and in the autism blogosphere that the net effect seems to temporarily be that I haven' got enough creative juice to post as regularly as before.

So what exactly is going on? Let's see...
1) We had tremendous wildfires here in Southern California, which caused a huge week-long distraction. (I actually wrote about that experience).
Also recently occurring are such things as a trip to Disneyland for Jason's birthday, surgery for one of our dogs, school meetings and whatnot, lots and lots of work due to seasonal shifts and covering for out-of-the-office co-workers. Lots to do leaves little time and energy for writing.
2) A favorite blogger (and friend) of mine was threatened and harrassed straight off the internet by "the bad guys". His site always provided a good petri dish for autism-related discussion, as it was frequented by such a diverse group of people. Other people whom I respect and like very much have also stopped or all but stopped blogging. Though, as always, there will be new people entering the community who have great things to offer, that doesn't mean I can't miss the other ones.
3) The more I read about and learn about autism, the more I realize that a non-academic like myself will have a hard time contributing new thoughts to the area I feel most strongly about: improving understanding of the condition of autism and using that understanding to provide better supports for ASD individuals. I am going to keep trying, but I am not one to spend too much time rehashing other people's thoughts or findings. Therefore it is difficult sometimes for me to generate "new material". But I don't want my blog to degenerate into a site like Harold Doherty's where I just grab autism news off the newswire and spin it to launch attacks against those who are ideologically different from me. If I can't take a stab at a careful, reasoned discussion (when that is my intent, not including posts where I am simply celebrating my family or having some fun, then I'd rather not say anything at all.
4) We have three kids now, and they take a tremendous amount of time to care for, attend to, and nurture. And that is priority #1. So devoting the time to keeping up the blog is difficult. I also have a very challenging and demanding career. Again, a good thing, but it does make it hard to keep up the blog.

So anyway, I am going to get my mojo back soon, I expect. There still is much to talk about, much to learn, much to do.

Wednesday, October 31, 2007

Fright Night



Trick-or-Treating is a Hair-Raising Experience!!!




It's hard to protect the world when your pants won't stay on...




Colony Collapse Disorder?

Monday, October 29, 2007

The Best Story Ever!

Recently, we achieved a parental milestone of sorts - we went to parent-teacher night. Our oldest son is Jason, and Jason is attending Kindergarten this year in a general education classroom. He has a full-time shadow to help him through the more difficult moments, and everyone seems to agree that Jason is doing very well with this placement. Especially Jason...

***
During the parent-teacher meeting, when we asked how, in a general sense, Jason is doing, Jason's teacher burst into a big smile and told us the following story:

The class was gathered around Ms. D'Nealian, who was holding their attention with some sort of information sharing game. She was engaging the students to say something about themselves, or about her, or about whatever they chose. She elected to start at the beginning of the semi-circle - her left - and work her way around giving each student an opportunity to talk. As the students took their turns to talk, and the speaking job moved closer and closer to Jason, he began to get very fidgety.
{Aside: Jason is almost always fidgety. He shows an extremely inquisitive nature, and asks a LOT of questions during the school day. So many, in fact, that he constantly walks around all day with his right arm upright at the shoulder, bent 90 degrees at the elbow, forearm resting on the top of his head. This way, when he has a question, he can efficiently raise his hand in .0000057 seconds and ideally receive his answer much more quickly.}
As each student in the arc ahead of Jason did their speaking bit, his movements became more pronounced. First his hand would shudder in an effort to hold it back from shooting upwards to question-mode...
Student A would stand up, say "Ummmmmm, Ms. D'Nealian, I have socks that look like your socks" and sit back down. Jason would begin to "jog in place" with anticipation...
Student B would stand up, say "Ms. D'Nealian, my daddy has lots of tools and, and a truck that's fast and stuff" and sit back down. Jason was hopping by this time.
Student C would stand up and say, "Ms. D'Nealian, I saw a frog this weekend. He was green." and sit back down. Jason, whose turn was next, by this time was hopping and jogging in place, both hands straight up in a 'touchdown' signal...
"Jason, what would you like to say?" asked Ms. D.Nealian....

Out from my little boy bursts - the kind of BURST that can only take place after holding back for a while - "I LOVE YOU!!! I LOVE THIS CLASS!!!!" He is now jumping up and down wildly, his enthusiasm infectious! All the little kids leap up from the floor - "I love you too!" "I love this class too!" It was a storm - a perfect storm of unleashed goodwill! It was as if the proverbial crowd stormed the playing field. Love was in the air!

And - amidst the chaos of 5 year-olds and 35-year olds celebrating their very existence in the wonderful classroom known as K5 - Ms. D'Nealian stopped a moment to observe my son. My son Jason - who has his whole life ahead of him and will carry the things he learns in Kindergarten with him every moment of that journey - was standing there amidst leaping kids and grinning teachers/aides/volunteer moms with his hands on his hips, beaming from ear to ear, looking from side to side, being as smug as can be as if to say "I DID IT, damn it! I caused this glee! I am Jason! Join me in celebrating!!!!! I LOVE this class!!!!"
***

If you've ever seen the end of the movie Rudy, you'll know how I felt when she told us that story. Its a moment that will never leave me.

Saturday, October 27, 2007

Pardon the Interruption...

Despite all expectations, the sun rose. Though weak, its rays slowly soaked through the roiling gray-brown skies. There was no sound but the persistent breath of the Santa Ana wind. The cloying taste of fear and ash clung to my throat, which was made raw by dry smoke and heat......



A post-apocalyptic vision? No, a description of Tuesday morning here in Southern California.

Every now and then, I depart from the topic of autism to talk about something else. This is one of those occasions. This post is about the wildfires that plagued Southern California this week. This post is about how my family's life was temporarily jacked up by Mother Nature. I am highly cognizant of the fact that we did not lose our home. Perhaps 1800 families here did. We are very lucky to not be included in that number, and my heart goes out to those who have suffered terrible loss this week.

Monday morning I got up at and went to work as usual. The top radio news story on the way in was that Highway 15 - the major inland north/south expressway in SoCal - was closed due to smoke and embers from a wildfire. No big deal, as we occasionally run into this condition in San Diego County. A few minutes later, another story runs that a fire is burning behind California State University-San Marcos and is forcing the evacuation of a few neighborhoods at the base of the hill upon which the University is located. Hmmm. 2 fires now. I also recalled that the Santa Ana winds (The Devil Winds, in which an atmospheric high pressure zone migrates to the Mojave desert, forcing hot desert air to rapidly traverse Southern California in its effort to seek the low-pressure zone sitting over the cool Pacific Ocean) were expected to prevail strongly for a few days. Uh-oh. This could be trouble.
But not for me! Wildfires, hurricanes, tsunamis, and "storms of the century" happen to other people, not me and mine. So no worries.
I settle in to work, with several co-workers commenting on the fires. One office clerk leaves, as her neighborhood is being evacuated due to the proximity of the fire and she needs to tend to her kids. Okay, so we'll be a bit short-handed. At least there is no fire in the area that I live, about a 40-minute drive away. Then someone mentions that a new fire has been reported in my area. About 30 minutes later my wife calls and confirms this, but that it is burning on the other side of the interstate a few miles away. Close, but no imminent danger ... yet. As a precautionary tactic, she began to assemble those belongings we would take with us in the event of an evacuation.
A few hours later, news reports had the fire "jumping" the highway. That is 8 lanes of highway with a very wide median - probably 50 yards of distance.
This is what can happen when the hot desert winds push a fire - burning embers are forced way out in front and ignite areas far removed from the source flames. This is how fires "jump" huge swaths of land so quickly. If the wind is travelling 70 mph like it did in gusts that day and the next, then the fire can also travel at 70 mph. Scary, if you think of it.

Anyhow, with this news I was quickly out of work and on the way home. I have an excellent and trustworthy staff, a staff that was heroic in maintaining compsure and business activities in the ensuing three days.
I barely avoided getting caught in a major snarl on the highway as it was unexpectedly closed due to the fire roaring around it and the resulting smoke. Since I had to get home in a hurry, I burned a U-turn into the median and drove back against stopped traffic to find an emergency access break in the center divide, I squeezed through there and headed back to the prior exit so I could wind through some surface roads to get home.
Keep in mind that the area I live in is very hilly - it is actually a foothill range that includes a series of ridges and valleys. Roads are limited, usually windy, and not heavily travelled.
Soon after I got home, our bright sunny day degenerated into a brown, choking haze due to the smoke from the nearby conflagration. And, obviously, since the smoke was coming our way so was the fire. We packed up my wife and kids and decided I would stay behind to watch the house and the animals. Though our area was under official "mandatory evacuation" orders issued via reverse-911 phone calls and door-to-door Sherriff visits, and the resulting exodus had begun in earnest, our situation was probably a bit more complicated than many others. Only if it became obviously dangerous would I leave. Dragging around 2 dogs and three cats to unknown shelter locations for unknown periods of time is not an appealing scenario, hence our decision. Plus, it is hard to walk away from your house not knowing if you will see it again. She and the boys safely arrived at their destination - the home of some wonderful friends (thank you!) up North of us, so now I only had to worry about the proximity of the fire.
As night fell, I began to look for a good vantage point. I found one nearby, further down the ridge that our house sits atop, and several other "stay-behinds" found the same spot. Thus began a very long night of fire-watching.
The fire line approached from the East. I live on the Western ridge of a North-South-running valley. From ridgetop to ridgetop is probably a mile or two. The valley is about 2 total miles in length. The firehad burned all day on the opposite side of the Eastern ridge. At that point, it had destroyed maybe 40 or 50 structures and a golf course.
At home, I made pots of coffee to keep the caffeine flowing. Every hour or so I would drive over to the vantage point to watch the glow from the other side of the ridge, hoping to see it diminish. Firefighters had been on it all day, so I was hoping they would beat it.
At 11:00 it was still just a steady orange glow. When I returned at 11:45 much had changed. The wind had picked up dramatically, fueling the fire. In that 45 minutes, it had crested the ridge and burned about 2/3 of the way down to the base of the valley where the road runs. It was now hard to watch as the wind was hurling embers and debris and smoke up our ridge. The crackle-pop was vaguely audible now. As the fire marched down the hill, it was the only thing you could see on an otherwise night-darkened hillside. Except ... sometimes a giant ball of fire would develop within the wall of flames. And a huge plume of black smoke would burst upwards. The adjacent flames would bend towards these intense flare-ups, drawn to them by the rush of oxygen. These were homes. Families' homes, burning to nothing in a matter of minutes. Wow. I wish I had pictures of this, but the camera was packed with our evacuation 'valuables' and was therefore, well, evacuated.
At this point, the small group of us watching this happen were of a mind to get going. None of us had any intention of getting into serious danger, and none of us had any illusions about our own ability to defend our homes from fire.
We knew that if and when we left, we would have no way of knowing what happened to our homes, had no way of knowing when we could return, and had no way of knowing whether we would be able to meet up with our families in the interim. These were powerful motivators to stay put as long as was feasible.
But ... just at the crucial moment when it seemed we would have maybe 10 or 15 minutes to clear out before the wall of flames reached us ... the wind died down. Then it picked up again - from the West. The Santa Ana had momentarily given way to a coastal breeze. This ceased the forward progress of the flames, though they still hungrily consumed avocado groves, homes, and ancient Live Oaks without compunction. Immediately thereafter, a stream of emergency vehicles gushed into our valley along the road that ran along its nadir. As I heard on the news the next day, this was a contingent of firefighters freshly arriving from Northern California, and assigned to our location as it was designated a "last line of defense". If the fire broke through our valley, authorities were concerned it would enter an estuary valley that runs directly to the coast about 10 miles away, and there would be no stopping it. I could see their vehicles wind up the narrow lanes cutting up the opposite ridge by tracking their flashing lights. They arrayed themselves above, around, and below the 2 major rivers of fire descending into the valley and valiantly defended their chosen turf. The end of the story is good - they stopped the advance and saved hundreds of homes. God Bless our firefighters.

Fast forward to the next day - Wednesday. Now it is midday, and I decide to check out the area. At the time I leave home, I feel like the only person in the world. As I walk out to my car in the driveway, every footfall results in a little cloud of rising ash. I flip the windshield wipers to clear the ash and create another little cloud that will eventually settle on the driveway. I leave home and drive past the vantage point from the night before - no one there now. The radio says the fireline is still being defended at the bottom of the valley, but I can no longer see the flames since it is day. Smoke roils by in great black and brown belches stinging my eyes and throat.
As I drive into various areas I see nothing but emergency vehicles. Fire trucks, Cal. Dept. of Forestry trucks, Ambulances screaming by with sirens blaring. Overhead, a chopper repeatedly goes back to the worst of the fire after refilling its water tank from a nearby pond. I am passed by two Army Hummers, complete with visored soldiers perched atop the roof with M-16's - guarding against the inevitable looters. There is no other movement or activity, just these vehicles with their missions. Truly bizarre, as this is my town, my little agricultural haven amidst the hubbub of Southern California. Very few stayed behind, and those who did were home indoors avoiding the choking atmosphere.

The story, for me and my family, has a happy ending. My wife and kids were able to return home Wednesday night, just two nights after flames tore through our valley. We cleaned up the ash around the house as the fire burned North into an unpopulated river valley, and eventually burned itself out.

This fire burned 9000 acres. It destroyed 206 homes and 42 other buildings.4 firefighters have been injured out of 967 assigned to the fire.
And that is just my town. In all of Southern California, the combined force of the wildfires since Monday have consumed 410,000 acres and over 1,500 homes.


This last picture is just one little area of my town that used to be lush, green growth. Suffice it to say that we're glad this week is over in Southern California.

Thursday, October 18, 2007

The Autism ... Continuum?

If you were to perform a PubMed search for studies that include "visuo-spatial" and "autism", you might come up with 15 studies that indicate differences between the way autistic people process visuo-spatial stimuli versus control groups of neurotypicals. Perhaps this goes a long way towards explaining why many autistic folks - and many of their allies in academia and parenting communities - object to the use of the term "Autism Spectrum". Let me explain.

"What?" the casual observer may ask, "I didn't even realize that the use of the 'spectrum' was controversial". Well, its not really elevated to the level of controversy yet. But as the realization of the need for protection of the rights of autistic people grows, so too does the need to consider the language of the topic. And 'spectrum' is one word that deserves consideration.

Consider, for example, my first exposure to the word. This is a brief outtake of the story of the day we received our son's autism diagnosis:

After standing by while my son completed a battery of behavioral and performance-based tests, I was asked by the psychologist to take Jason downstairs for a while so whe could complete her analysis of results. After about 45 minutes, I brought him back up to the Pediatric Neurology offices for the diagnosis. She worked with me through the initial process of diagnosis, describing each diagnostic criterion and asking if I agreed. After 11 affirmative responses, she knew she had brought me to the point where I understood where she was going with this. And so she continued with a description of the Autism Spectrum - the first I had ever heard of it:
"On this third, you have Asperger's Disorder. In the middle, you have PDD-nos, and the most severely affected are in the Top Third, called Autism Disorder or Classic Autism. Your son is in the top third, probably somewhere in the middle of that segment. This means that he has less of a chance of living independently and functioning normally in society than if he were in the other two sections."
It was as if she had a special "Autism Sextant" that pinpointed precisely where he fell, at the ripe old age of 39 months, on the linear spectrum. And, being totally new to the diagnosis and having a complete void of any competing knowledge, I bought the whole line.

So this was my working knowledge of the autism spectrum - as a linear spectrum going from 'mild' to 'severe' - for maybe a year or so after my son's diagnosis. How simplistic this view now seems to me.

You see, the Autism Spectrum is not just a linear representation of behavior, with one end being the "best" and one end being the "worst". Instead, it describes a continuum of subjective experience and behavior, resulting from neurological atypicalities, which can vary significantly over the lifespan of any individual who is labelled autistic.

Notice that I have selected the word Continuuum here.
Description: Continuum theories or models explain variation as involving a gradual quantitative transition without abrupt changes or discontinuities. It can be contrasted with 'categorical' models which propose qualitatively different states.

So by viewing autism as a continuum, we can incorporate the concept of fluidity of behaviors or experiential factors, thereby creating an increased ability to understand and discuss autism issues in a more realistic fashion. At the same time, we avoid the Spectrum's push towards 'grading' behavioral presentation to the detriment of potentially diminishing the value of the individual.

Too often, productive discussion on the topic of autism is limited by term usage such as "high-functioning" or "low-functioning." You will occasionally see comments such as "Person A is just Asperger's or HFA, and therefore can't be considered alongside Person B, who is non-verbal with SIB's." And there is something to this, as everyone I think agrees that some autistic individuals' symptoms or characteristics are much more debilitating than others. But to simply compare HFA to LFA is far too simplistic. Such a view ignores tremendous variation in "clusters" of abilities and disabilities related to autism. I have read or spoken with several autistic adults, and a common theme is that "some days are better than others". Or, to put it another way, a person can appear to function at different levels at different times. I think the continuum concept captures this fluidity.

Another criticism I would offer of the linear spectrum concept is adopted from a researcher-friend of mine. She has stated (paraphrasing here) "Spectrum? Bahh. That's just something the Behaviorists cooked up to separate those they could help from those they couldn't figure out."
I think what she means by this is that allowing ourselves to label an individual as being in the lowest functioning category provides a wealth of excuses for ourselves to consider them outside the realm of "help-able".

Here's another angle, albeit somewhat Sophist by nature. Taking this idea of a Spectrum to its extreme, then at any given moment ONE PERSON is the most autistic in the world. One person is also the least autistic, and is just one person away from no longer being considered autistic. This is purely conceptual and has no pratical application other than to highlight how the Spectrum can result in a "ranking" of behavioral presentation.

I have also been part of numerous discussions on the topic of a cure where this linear spectrum concept is inadvertently interjected into the conversation. Usually the commenter will say, in reference to their efforts to provide a cure for their child's autism, "All I want to do (with treatment X or intervention Y) is to move him/her up the spectrum. Is that so wrong?" What the parent is insinuating, though probably unintentionally, is that their child's current 'level' of autistic functioning can be incrementally, quantitatively improved by degree and the progress can be tracked. This is almost never the case. Typically, when parents talk about their children's progress, it goes something like this,
Parent A: "Well, she has started talking now in single words, still isn't forming sentences. But her use of sign language is improving all the time. Unfortunately, it seems that she has a lot of anxiety since school started, and her sleep patterns are very erratic and unpredictable."
Parent B: "My son is not talking at all, and has never really had significant anxiety problems. He's always very calm, like an old soul. His fascination with airplanes is really taking over his other hobbies right now - he won't read anything but that topic. And ever since we moved out of the city, he doesn't scratch or bite his arms anymore like he used to."
In both of these examples, there is no clear delineation of improvement or regression. The changes in the kids are Fluid. They are on a Continuum.

This discussion, as do so many others, boils down in large part to the fact that we don't have a very good working definition of autism. Autism Disorder is still, from an academic standpoint, a term used to describe a set of observable symptoms. I hope the academics consider the importance of defining and endorsing a better way of describing the tremendous range of individuals that carry the label of Autism than placing them all on a linear Spectrum.

Sunday, October 14, 2007

Inspiration!

Sometimes something happens at the right time, and it penetrates the chinks in the armor that we build around ourselves.

I'm a bit down about recent goings-on in the online autism community. I need cheering up, but all my colleagues are similarly afflicted with negative feelings. Where do I turn?

Where indeed?

A few moments ago an email came to us from one of our son's former behavioral therapists. It's a video that I will post here.
This video is Christian, and it is tremendously inspirational. Regrdless of your feelings about religion, Christianity, or anything else, I think you will find this to be enlightening, applicable to your daily life, and just really intensely wonderful to watch. Though the context is Christianity, it is a skit about life, about right and wrong, about trials and successes, about love and hate, about ups and downs, about danger and safe harbor, about many of the things we all have been dwelling on the last few days.

Even if you are unable to identify with Christian values or symbolism, try to set that aside for 5-1/2 minutes while you watch this - you won't likely regret it.

Click here for video

Hate is Unmistakeable

Do you ever feel like the bad guys have won?
That's how I feel today after reading Kev Leitch's farewell message, and witnessing the closure of his blog, Left Brain/Right Brain.

Kev's reasons are his own, and for no one to question. He is acting in the way that he feels necessary to protect his family, and I support him 100% in that.

Kev's daughter has been the target of impersonation and dehumanizing insults by John Best for quite some time now. John is the despicable person who writes the Hating Autism blog. His derogatory writing too often crosses ethical and moral boundaries that are easily recognized and avoided by more decent people. Over the last three days, John has committed himself to a campaign of hate against Kev and His daughter that is unprecedented in its depravity, and Kev has reacted accordingly.

Many, many people like me have directly benefitted from Kev's work in establishing a central point for autism blogging, many of whom are autistic bloggers who were able to benefit from the Hub's high traffic to get a message out to the world that Autism is not necessarily what it has been thought to be. That autistic folks are whole persons, people deserving of our respect and admiration for abilities and attitudes that were dismissed, ignored, or overlooked by most professionals until recently.

I hope Kev will still contribute his voice and efforts in other ways - ways that will provide some insulation between his family and those who would do them harm through words or deeds.
I hope the autism community realizes that we are diminishing ourselves if we let the outrageous actions of the offending person go without condemnation and censure.
I hope we can organize ourselves to continue the Autism Hub, so that there is always a place for Autistic bloggers and their allies to gather and share ideas.
I hope that Kev knows how much I and so many others appreciate his efforts over the years. And I hope that my Autistic son grows up in a world full of people like Kev Leitch, and bereft of haters like John Best. I will keep blogging to do my part to see these things happen.
And if anything occurs that causes Kev to reconsider, I will be the first in line to welcome him back.