Thursday, August 27, 2009

Peg Board

Hello readers!
I am very pleased today to offer you One Dad's Opinion's second-ever guest-blogger piece!

This piece was written by my friend Diana Pastora Carson of Ability Awareness. Diana's brother, Joaquin, is autistic. Currently, Diana and her family are actively pursuing the important process of transitioning Joaquin from institutional care to his own home, and addressing all of the community involvement pieces that go along with that.

This essay was written after one of many appointments that are part of that process, an appointment that occurred yesterday. This piece is also to be included as a chapter in Diana and Joaquin's upcoming book, "A Walk With Joaquin".

A Walk with Joaquin
By Diana Pastora Carson

Peg Board

I watched under emotional anesthesia as the teacher pulled out a bright, foam peg board and asked Joaquin to show us how well he can work.

Peg Board. Really? You mean we’ve come 100 miles for this momentous occasion, the first official visit from Joaquin’s community support staff (the people who are going to take him away from all this madness and facilitate him having a real life, one with meaningful experiences, choices, and enjoyment) only to walk into a noisy, windowless room where a good-hearted, but clueless “psych tech” actually boasts of Joaquin’s ability to put large, colored, plastic pegs into a peg board for no apparent reason other than to seem productive and to be compliant?

In this second millennium, the absurd and unbelievable scenario where a professional in the most highly funded state agency working with people with developmental disabilities offers a peg board to my brother, a 40-year-old man who loves walking, riding bikes, and socializing…not peg boards, defies all reason. In what seemed to be slow motion horror, I watched, and even encouraged Joaquin to sit down and try, knowing he would understand what I was doing and would forgive me as soon as we had humored his instructor. I just wanted to get it over with and show a cooperative spirit so we could get the hell out of there.

The poetic ending of this story is that Joaquin refused to perform the task. He sat down at the table in front of the peg board, wrinkled his nose and looked at us as if to say, “You’re kidding, right?” and then put his hand on his head as if fighting off a headache. When prodded, he shook his head, clearly communicating that this was not his idea of fun…or life. “Okay, Joaquin. You’re telling us that you don’t want to do this. It’s okay,” I assured him. It was actually great!

But what if he HAD done it? Would it have meant that he was content? Or that he had finally grown to be compliant after endless years of “treatment.” Would it have meant that he wanted to live in an institution? Or would it have meant that he knew no alternative?

But he had not complied. Did Joaquin know that his act of committed defiance was the perfect metaphorical statement of empowerment? Did he understand that he was actually saying, “I am my own person and I want to live my own life?” Did he know the implications of his action? In my mind, he understood, and he’s a badass genius.

Diana and Joaquin

Saturday, August 1, 2009

Quintessential Summer Day

Wow - we had a lively day around here today!

Firstly, two of our boys - J and C - rode horses in the REINS "Fun Day" Horse Show. REINS is where people with disabilities are able to ride horses in a supportive environment. I've written a lot here on One Dad's Opinion about REINS, as it represents one of the gravitational centers of our family's community involvement and deserves much mention.
This was J's fourth time riding in the "Fun Day" contest and C's first. It's called "Fun Day", but the annual event that precedes REINS' monthly summer break in August groups the students together by skill level and judges their riding performance against each other. Its all in good fun, and creates a tremendous sense of pride amongst the students (ranging from the youngest - Baby C, at 2 years old - up to riders in their elderly years). See this post for a look at their oldest rider, Millie. She is 93 years old. Wow.

Of our boys, C was the first rider of the day. He acquitted himself marvellously well, and brightened his own day and the rest of our days as well with his bright smiles and obvious
affection for his horse and instructor.

He was particularly impressive when completing the "Round the World" move that he always looks forward to. (Spare me the "Horse's *ss" jokes please...)

C won the pink 5th place ribbon - we couldn't be more proud of him!.

After C dismounted and we gathered around him to share the moment, J pointed to the ribbon pinned on C's chest and gave C a little nudge and said, "Congratulations". Both Kaitlyn (the wonderful instructor for both our boys) and me overheard this and commented to Jason how nice it was for him to say that. He very matter-of-factly replied "I was reading his ribbon actually." All-righty.

One could almost imagine C riding off into the sunset like John Wayne...

So after a while waiting in the heat and dust, it was finally J's turn to ride with his group of 6. This was a particularly exciting competition for J, since it would be the first time he would ride independently, without Kaitlyn holding the horse's lead. He mounted up on trusty old Betsy, who he has been riding since day 1, and prepared for his turn.

In a word: Success!
J completed the entire dressage routine without any assistance from Kaitlyn.

Note in this picture the separation between J/Betsy and Kaitlyn - this is an independent performance. Oh, and that look on J's face? Nervous self-satisfaction.

J's excitement-meter was running very low today, so it is difficult to know how he felt upon completing his routine. But when the ribbons were presented, all that changed. J won first place and received a BLUE ribbon! This is dually awesome as blue is J's favorite color - a preference that borders on obsession and influences a large array of J's decisions in life. Blue rules J, and so you can imagine his elation at receiving the Blue Ribbon.
One Dad even got to share the moment with him and Betsy. What a great moment.

After 3 hours of tramping around in the dusty, hot environs at REINS, what better way to cool down than a swim in the pool?

NOT SO FAST! Today, our pool had in interloper that had to be addressed before we could go in. I bet you didn't know this post would include - Tarantula pictures!

I realize it is difficult to grasp scale in a small internet picture, but this spider's body was about 3.5 inches long, with a full leg-span of around 6 inches. Here he is walking along the edg
e of the pool-skimmer I used to retrieve him from the water.

Once we moved our hairy friend to a more spider-friendly neighborhood - ya know, somewhere other than our freakin' pool - we dove in to escape the summer heat. One Mom and I are pleasantly surprised by C's progress in branching out his experiential tolerances. But remember - autism consists of developmental delay, not developmental stasis - so it should be no surprise that C is jumping in the pool now all by himself and generally having a rip-roaring time trying to keep up with his older brothers.

That includes being thrown into the pool.
Hey, give me a big sloppy dog and a smilin' 2-year old "chunky monkey" and I'm One Happy Dad.

I hope you are all having a great summer like we are - and that you are not finding Tarantulas in your pool or anywhere else.
Next week ... Surf Camp!!!

Tuesday, July 28, 2009

Awkward Moments ... are okay

After Tae Kwan Do class today - a sport in which both J (age 7) and T (age 6) have achieved their "Camo belt" status (which bugs me - I am a military history aficionado, and I'm making an educated guess that "camo" was not one of the color choices made by the originators of Tae Kwan Do). T was snapping his side kicks and giggling during stretching as always, but J was clearly dragging tail throughout the session. Physical fatigue did not seem to be an issue - his heart just wasn't in it today. S'ok - kids are allowed to "check out" sometimes in This Dad's Opinion. I'm not raising a Commando force, just a few kids.

Moving to the point - after class I took the boys to Baskin Robbins. Baskin Robbins throws J a little off his game since they advertise 31 flavors but sell 42 flavors. I have to agree with J that the universe is slightly askance due to this unsettling factoid (a factoid that is rediscovered immediately upon every visit as J re-counts the flavor labels to make sure they still offer the ridiculous sum of 42 flavors). But this time, on today's visit, there was no re-count. J was thrown a curve-ball immediately upon entering the door. You see, someone said, "Hi, J".

J froze in place, clearly torn between counting the flavors and becoming invisible. He grabbed me around the thighs with both arms, looked up with an obvious and unabated look of bewilderment in his big eyes, and whisper-shouted, "I don't know who that is."

(Aside: I must define the whisper-shout. This is J's verbal channel that he deploys when he is trying to speak 'under his breath'. The thing is, J doesn't modulate that very well and ends up over-compensating his voice volume to make up for the whisper-effect that prevents a voice from carrying distance. So he winds up with a very loud, throaty whisper-shout that he honestly believes is only heard by the person he is oriented towards at that exact moment.)

The boy who accosted J (well, actually he only said 'hi') was sitting with, presumably, his Dad and older brother. The boy was probably 9 or 10, the brother probably 18. All in all, and leaving out some of the "small talk" that surrounded this fragmented interaction, they were a perfectly friendly bunch.

I peeled J off my leg and encouraged him to pick a flavor. He picked chocolate (no surprise there - read this post I wrote back in 2007 to see the consistency of J's taste for chocolate) and went to his favorite position of flipping through the B-R catalog to hone in on his favorite characters represented in the fashion-forward genre of frozen ice cream cakes. At one point he moved closer to the table with the boy who had said 'hi', and the same boy leaned over and said, 'J - you remember me! From Vacation Bible School!" (VBS was last week - not a long time ago) J grabbed my hand and whisper-shouted to me "I think I can't remember him. I think he has different clothes!" Once I had paid up, I walked over to him and crouched down to have a "man-to-man" talk.

I said, "J - on the way out of here, I want you to walk up to the boy who said 'Hi'. I think you should tell him you are sorry you don't remember him, and thank him for saying hello. The reason I think you should do this is because it is the polite thing to do. Do you agree?"
"Yes, Dad, I will."
So we walked over to the door and the boy. Jason grabbed on to me tight and whisper-shouted (the boy could definitely hear, as could everyone else around) "I'm scared!" I told him he would do fine, and we could just leave if he wanted to but that he should try to be polite. "But I'm nervous!"
We stopped in front of the boy. J looked at his feet and whispered - not whisper-shouted, whispered - "I'msorryIdidn'trememberyouthankyouforsayinghello" and we left. The boy was responding, but we left in a hurry. As we crossed the parking lot, I asked J if he felt like what he did was the right thing. "Yes". I asked if he felt better to have done it, even though it was hard to do. "Please don't ask me about that right now!" was his reply. Okay.

Saturday, July 18, 2009

Redefining the "Happy Camper"

I am a very poor blogger these days. Blogging requires somewhat of a repetitive tempo, and my internal blogging metronome has seemingly ground to a halt. This despite a veritable wealth of fascinating goings-on in the microcosm of our family, and in the macrocosm of the autism community. I feel like opportunity after opportunity to write some thoughts on things like the IACC, like the new movie Adam, like the shutting down of fraudulent autism cure peddlers "Care Clinics", like some new and fascinating research and how people are incorporating its results, like so many other things.
So why today? Well, I've been shamed into it. First, I notice that my friend Do'C has posted a new blog entry over at Autism Street. Next I notice that my friend Bev has done the same over at Asperger Square 8. The three of us make up the triumvirate that has spoken several times to large audiences about blogging and autism, but here at One Dad's Opinion there was just the sound of crickets chirping. Then, I log on to the good ol' Autism Hub and see a post by Sharon in which she names little ol' me as a guy who writes things about autism that she likes to read. Okay, so when called out by "Best Family Blog in Ireland", one tends to want to respond.

So on to the point of this post, which is to describe a recent camping trip. Here in our neck of the woods, we hang out with a group of 4 or 5 families on a regular basis. When we all converge, as we recently did at a campground surrounding a few lakes here in SoCal last weekend, the tally comes to 10 adults, 13 kids. 23 of us (one family was absent this time due to a new baby arriving a few weeks ago). Of the 13 kids, 5 have been diagnosed on the autism spectrum. If you want to see a classic, moving, changing representation of the topographical model of understanding the autism spectrum, join us for a weekend sometime!

This group, I'd like to mention, is NOT a support group. This is a group of families who enjoy spending time together, no matter anyone's specific circumstances. We are also a heterogenous group in terms of our views of autism etiology and treatment, and it matters not one whit.

So how, with this many different people of different ages and interests and, yes, neurological profiles, does one ensure that everyone is a "Happy Camper". Easy answer: One simply cannot. But one can describe several circumstances of Happy Campers, as well as some simple and general observations, so here goes:

In the campground's pool, my son J was doing his typical pool routine after playing with friends for a while. He will break away from the group and just kind of "be" in the water. This consists of swirling around, inverting himself, periodically floating and treading, eyes closed most of the time, tuning out minor nuisances and most noises (I think), and reveling in the weightlessness of being water-bound. But this time, he had a silent and unintentional partner. One of the other boy's Moms pointed out to me that her son, who is three years older than J and very similar to him in a lot of respects, was doing EXACTLY the same thing about 12 feet away. Neither one seemed aware of the other, but their movements, and tempo, and intent seemed identical. It was Autistic Synchronized Swimming.

One of the boys, though he will never come right out and say it, is qualified at age 8 to be President of the Audobon Society. Upon watching some ducks (apparently a newfound 'special interest' for Baby C) one Mom asked another what kind of duck was that peculiar one with black feathers and a white beak. This boy, who was otherwise silent as he watched the ducks (and was keenly aware of all other surrounding wildlife) piped up and said, "That is NOT a duck, but it IS a Fowl. That is a Western Coot." Later as, he walked along side me in his trademark skip-step with windmill arms, he stopped and whacked my arm with his. "Look! 2 Grey Herons!" And he skipped off. His identification abilities do not stop at birds - he intently studies any and all animal info he can and is an expert in recognizing virtually all birds, critters, and bugs in Southern California. He is 8 years old.

Several of the campers found great solace in enjoying some time around the campfire. Some of these campers enjoyed cigars, Black Bush whiskey, and a game of Dominoes. These rare and elusive creatures are called DADS, and can be viewed in their natural habitat sometime after 11:00 p.m.

One of our goals was to get J to learn how to ride a bike. This he did, for at least 20 feet without anyone's assistance. Hooray for J! Physical coordination is not one of J's long suits (as I wrote about here). Meanwhile, my middle son T quite literally drove his bike into the lake. When I came along with Baby C strapped in behind me (and limited in my ability to react as a result of that), one Mom had jumped off her bike, and was diving in after T who at that point was just seen as a floating safety helmet. She retrieved the child and the bike. T, once he shook off the initial shock, turned to me and said - and I quote - "That was AWESOME!"

Baby C likes ducks, Baby C likes water. Baby C does not respond to his name very well when interested in other things. Baby C will walk well over 100 yards without ever looking back to 'reference' Mom or Dad. Baby C has the autistic child's trademark lack of a sense of "danger". Baby C was watched very, very closely every minute of the time. Baby C's parents, One Dad and One Mom, are looking forward to Baby C becoming plain ol' C. The terrible two's started in our house 6 years ago and haven't stopped yet as the baton has been passed form child to child. Do we get an award for all of this? Oh yeah, we did :)

Ya know .. this wasn't so bad to get back at it. Maybe I'll hang around here at One Dad's Opinion a bit more often...

Saturday, June 27, 2009

Way Beyond Awareness

Though I haven't had adequate time to organize my thoughts prior to writing a summary of the really great day we had at USD's Summer Autism Conference, I have to refer back to my write-ups of previous experiences there and arrive at the conclusion that only an inadequate summary is possible anyway. To actually grab a hold of and present to someone who was not in attendance the overall tone of this conference would be exceedingly difficult.

Fortunately, veteran Hub blogger Dad of Cameron (Do'C) has provided an excellent blow-by-blow of our 2-hour presentation, including links to some of the video and written media that we utilized in our presentation. Do'C also added a palpable energy to the presentation that would be sorely lacking without his contribution.
I couldn't be more pleased than to count Bev as among my friends and allies, as she is quite simply one of the most elucidating people on the subject of autism that I have had the pleasure to encounter. Bev gives of herself in many ways - far moreso than myself or Do'C - in terms of the personal commitment required to carry this all the way through. I respect that immensely, and I think anyone who has seen Bev's presentations would agree that there is something - a very nebulous, abstract something - that is pervasive during her presentation and that creates an intensity that is difficult to describe, but easy to buy into. I think the word I am looking for here is ... Honesty.

Two amazing people that I am proud to be associated with.

I want to extend a personal invitation to any new blog readers who may be visiting after seeing or meeting us at USD to shoot me an email or comment on this post if you would like any further information from our group beyond that which we talked about during the conference. Please also look at the archives or maybe some of the "Best of One Dad's Opinion" on the right sidebar if you are interested in other things I have written.

One SLT asked us during the panel presentation what resources may be available to get our message of dignity and respect to the group that she works with at her site, many of whom speak Spanish, Kumeyaay, or Filipino as their first language. I mentioned the Exceptional Family Resource Center as one possibility for a local resource, and so have included a link to their website (click the underlined words). I would take a personal interest in assisting the EFRC to archive and offer some of the resources that are available via the Autism Hub, if you choose to initiate this contact. Stephen Hinkle also mentioned Babelfish as a posible resource for such families. It also so happens that I am a passable Spanish speaker, and Do'C is quite fluent.

I'd also like to thank, once again, conference organizer Dr. Jodi Robledo (whoe husband and infant daughter were also diligently spreading sunshine all around the conference environs) and , of course, Dr. Anne Donnellan. Of Anne Donnellan I have often said before, she was "ND" before "ND" even knew itself existed.
Of the other presenters; among them Stephen Hinkle, Martha Leary, Nan Negri, Diana Pastora-Carson, Jacqui Thousand, and others - I simply can't say enough good things.
Thanks also to Steven Kapp for his contributions, and also to Daniel Lightfoot from Autism Speaks - a research scientist who wanted to - and I believe did! - learn some new things from the autism community that go far beyond cell behavior.

And to the teachers, administrators, SLTs, aide workers, and parents who took the time to attend the conference - thank you! I hope you benefitted from the time invested and that you will recommend others attend this great conference in the future.

Wednesday, June 17, 2009

Comic Relief


That is the name of an online comic book I stumbled across written by one Dan Woodman. Dan Woodman, according to his "About the Artist" page, is "...mildly autistic. The process of creating SOIL is intended to be therapeutic as well as humorous. Dan identifies with SOIL’s characters — especially Cory — who illustrates many of Dan’s own personal challenges..."

I read some of Dan's comic strips and found them to be wry, and funny, and very good at representing specific challenging aspects of Asperger's Syndrome.

Regardless, it is very nice to see the culmination of the effort and creativity that Dan is applying to this comic strip. I would be thrilled to see "SOIL" make it in to a mainstream setting such as a major newspaper so that more people could be exposed to Dan's work. If you explore the website you will see that "SOIL" has been seen in some local papers and has some nice reviews as well. There is even a book, cited as "A massive collection of SOIL in one volume!"

So kudos to Dan Woodman and "SOIL", which now ranks as my second favorite comic strip on the subject of autism. My absolute favorite? Square Talk, by Bev at Asperger Square 8.

Monday, June 15, 2009

Encore at USD

I am very pleased to inform friends and readers that a small group of Autism Hub bloggers will once again be presenting at the University of San Diego's Autism Institute on Friday, June 26.

This year's conference is titled "Together We Can Do It!: Building Personalized Supports and Instruction Through Relationships and Collaboration", a very appropriate title that once again captures the approach espoused by Drs. Anne Donnellan and Jodi Robledo who lead the Autism Institute. Read here for a piece I wrote about the type of work Drs. Robledo and Donnellan have published.

I am very proud to stand together with Bev and Dad of Cameron in presenting to the audience of professional educators and service delivery providers, and hope that the diversity of our own opinions and styles of delivery give the attendees a feel for the diversity of thought and opinion that is represented by the Autism Hub.

This will be the third time the three of us have assembled for this purpose, and I hope that our presentation will be met with the same level of enthusiasm as we have experienced in the past. You can read more about those remarkable experiences here (January 2008), here and here (June 2008).

If you are a casual reader of this blog or the Autism Hub in general, if you have an interest in the type of things we will be discussing, we'd love to see you in San Diego in two weeks. Please feel free to email me with any questions you may have.

Thanks to Bev for the great poster!

Saturday, June 13, 2009

Another Grade, Another Great Teacher

J has been so blessed with being placed with the most outstanding teachers in his few years of school. Last year, Ms. D'Nealian created an opportunity for The Best Story Ever and even sent postcards to our little guy. This year, Ms. Potato continued the string of superior educators, and was integral in fostering an atmosphere of patience and respect for J in his first grade classroom. Along with the help of J's classroom aide, Ms. Kathy, J had a good year in which he developed some friendships and had strong academic success.
It is amazing to think I wrote about J's Preschool graduation here just two years ago, and now he has graduated first grade.

J has a lot of struggles with transitions, and he was fully aware yesterday that the school year was coming to an end. Even before we left the classroom, his eyes were misty and the corners of his mouth turned down as he anticipated the end of his time in Ms. Potato's class. By the time we finished his afternoon session (and his little brother's too) at REINS, and headed off to dinner, he was downright morose. Not to worry - Ms. Potato is just a phone call away, and after a brief phone call J was feeling marginally better. Today, J will write a letter to Ms. Potato - an exercise that always seems to help him sort and settle things out.

Here is the message the Ms. Potato had for us parents. If you had ever met this wonderful teacher, you'd know that she means every word of it.

Friday, June 5, 2009


Strangely, for someone who has only sent a handful of text messsages and who is woefully unacquainted with the "shorthand" techniques widely used for that purpose, just such a phrase jumped to mind when titling this post.
"IRL" means "In Real Life", and this post is to perhaps explain to ongoing as well as potentially new readers of One Dad's Opinion that life has been going full speed ahead despite my uncustomary lack of attention to the blog. Writing this blog in many ways has been a transformative experience, in that it creates a de facto personal journal, public (though shaded) record of the early years of our complex family, a window to One Dad's thoughts and how those thoughts shft and change over time, and a self-proclaimed cul-de-sac in the online neighborhood of autism parenting. So I always end up regretting not dedicating the time to keeping up. Apologies, and on with it then!

Okay, so back to Real Life. L (my lovely wife) and I were thrilled when, in the mail a few weeks ago, we received notice that we had been nominated for - and in actuality had won - an award for "Excellence in Special Education"! Hooray for us! Hooray for J! Hooray for Baby C, who will be soon entering the selfsame system that has awarded us for our efforts!

I have written several times about our great school district on this blog - here, for example, is a post from May 2007 detailing what seemed then to be (and indeed turned out to be) a successful IEP development process. It provides a glimpse at the type of marvelous people we have had the pleasure to work with, as well as how we have approached the sometimes-contentious process of requesting services for J.

As it turns out, the same Special Education Director has worked with us since the first day J was brought to the school system. She was the one who nominated us and gathered a consensus from within the school district to present their case. The award we won was for "Collaborative Parents". Upon first being informed of this, the skeptical side of me was like "so, collaborative means Pushover, right?" When I had some time to think about it, I realized that there is power in that word. Collaboration is "the act of working together, in unison' ... for a common goal. Despite all the "autism wars" being fought on so many fronts out there, we had somehow found a groove in which our son's needs were best met through cooperative, mutually advantageous scenarios.
Upon receiving the award, I couldn't help but include in my brief words on stage (as L stood in the background, not at all comfortable in the spotlight) that this award really is for her. Look, I may write a decent blog post now and then, and autism advocacy has led me from presentations at academic conferences to interviews on NPR, but nothing I have ever done holds a candle to the work that my wife has done. She is the one who built these strong bridges, she takes him to school everday, she has shared a zillion small successes with him that so many moms and sons would take for granted, she has helped him in more ways than I can invent to write about. So here is One Dad's Opinion that One Dad's Son has One Great Mom. And now? Now we have the hardware to prove it!

Saturday, April 18, 2009

Strong Current, Narrow Channel

I am really interested in a rather unexpected (to me) and quite possibly major shift in the course of autism research funding and guidance that was announced today.

The Autism Science Foundation launched its existence and posted a website today, amidst significant media hoopla and statements made by several important directors and members.

You will, of course, see numerous analyses of this new development over the next few days and weeks. Here's mine: I hope they dedicate themselves to research with tangible benefits to autistic people today and in the future.

The people involved (founding members? Board of Directors?) could not be a more interesting ensemble. I find a lot to like, and frankly an equal amount that makes me nervous.

Begin with Allison Tepper Singer, the former Executive Vice President of monolithic autism charity Autism Speaks, who co-founded the new org with Karen London, formerly of NAAR.
Ms. Tepper-Singer uttered one of the most notorious lines heard in autism documentary film history when she expressed her urge to drive herself and her daughter off the George Washington bridge - with her daughter in the room with her. This, as some will recall, was an early rallying point of the Autism Hub itself - a galvanizing moment that some of the original Hubbers might tell you went a long ways towards cementing the Hub's eventual activist-style approach to controversial issues.

Allison Tepper-Singer left Autism Speaks last fall over a hubbub relating to an IACC vote over funding vaccine research. She stated that her intent to vote against further research in that area clearly opposed the will of the powers-that-be at AS, and resigned as a matter of principle. The new org's initial media statements assert a continuation of that foundational belief:

The Autism Science Foundation's mission is premised on the following facts and principles:
  • Autism is known to have a strong genetic component. Research must aim to discover the mechanisms of action that trigger autism, as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.
  • Early diagnosis and early intervention are critical to helping people with autism reach their potential, but educational, vocational and support services must be applied across the lifespan. Science has a critical role to play in creating evidence-based, effective lifespan interventions.
  • Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

I agree with the entirety of that triumvirate of statements, though they do fall short of covering the full range of things I'd like to see flow from our scientific community for autistic people. Its a heck of a start, though, and provides a spectrum (ahem) of goals that can be worked towards.

Also on the Board of Directors is one Dr. Paul Offit. I was extremely pleased to see Dr. Offit's inclusion with this new science group, as he has certainly earned his stripes in the vaccine-autism conflict and has emerged as a knowledgeable leader with great perspective on the science, the media's interpretation of the existing science, and the (quite frankly) dark nature of the more extreme anti-vaccination autism activists. Dr. Offit's book, "Autism's False Prophets" should be required reading for all young parents worrying over vaccinating their kids, for parents of young autistic children who may be considering some of the more dangerous, bizarre, or expensive snake-oil treatments sold as autism cures these days, and for any and all members of the medical and treatment communities that relate in any way to vaccines or autism. Furthermore, Dr. Offit's inclusion, as well as the bold and direct vaccine-related statements made by the Foundation, provide clear focus for their donors and decision-makers, eliminate the political minefield that is vaccine/autism debate, and further marginalizes Generation Rescue (a group that doesn't seem to stay on the fringe despite its junk science and vulgar set of personalities).

Further perusal of the Leaders of the Foundation turn up some other very interesting names.

Catherine Lord is considered to be perhaps the pre-eminent expert in autism diagnostic issues. She is the developer of the Autism Diagnostic Observation Scale (ADOS) which is the most well-supported diagnostic tool currently used. Interestingly, she is (or has recently) released an ADOS-I for infants. When my son Baby C was diagnosed back in August at age 19 months he just missed the release of the ADOS-I.

Harold Koplewicz is well-known around these (Autism Hub) parts for his leadership role in the Ransom Notes campaign, which was utterly despicable. It took tremendous media pressure for him to accede that the campaign was misguided and harmful, but ultimately he did just that. At the time, I recall feeling stunned, in that he essentially owned up to a mistake that totalled probably to the tune of several hundreds of thousands of dollars. He then initiated a series of town-hall meetings to hear more from the ND community - in coordination with Ari Ne'eman as I recall. I'd like to hear from Ari as to what he thinks we might expect from Dr. Koplewicz' involvement with the Foundation.

At the risk of downplaying their obvious strong credentials, I'll omit going into detail on each of the other members. Suffice it to say that I am just fascinated looking at the group that has been assembled, and I feel they have established an extremely strong group to help guide research.

Bottom line, folks, is that autism research is a rushing river these days. It is a strong current forced between two steep banks forming a very, very narrow channel of success. As I have grown weary over the past few years of watching the constant grind that is the vaccine-autism war and its resulting removal of resources towards truly benefitting autistic people (especially those needing more assitance than my own children), I can only begin to guess at the frustration felt by well-meaning researchers, science leaders, and most importantly autistic people and their loved ones. Here is One Dad's Opinion - no, hope! - that the Autism Science Foundation is successful at navigating that narrow channel.

Friday, April 17, 2009

Forms of Communication

Autism is a diagnosis made by observation. Specific behavioral criteria are set forth in the DSM-IV-r and the ICD-10 that are used to define the disorder.
It has been my experience as someone who has now met numerous autistic people of many ages and, more specifically, is a parent to two young autistic boys, that any attempt to boil down such a vastly complex thing as human behavior to a 12-point checklist is an exercise in futility. At the same time, I respect the need to have a "neutral" description for autism that can be referenced universally.
Autism, moreover, is described now as a spectrum. By definition, this means that the Autism Spectrum Disorders include Autism Disorder, PDD-nos, Asperger's Syndrome, CDD, and Rhett's Disorder. I have come to recognize that 5 "classes" of ASD are probably not enough, though I think they satisfy clinical needs for the time being.
What I have come to realize over time is that mini-spectrums exist within each category that is used to describe autism. Here is the official list of diagnostic criteria for Autism from the DSM.
To illustrate my point, take item 1.a., which reads:
"marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction"

In the case of my older son, this category would describe his former tendency to emphasize use of peripheral vision over direct gaze. Or his habit of dropping small objects from his forehead down to the floor so they would rapidly pass through his field of vision. To this day, he still points using his middle finger (awkward in western society to be sure). He frequently touches people's faces to get their attention - a definite faux pas for someone over the age of 3 or 4. My youngest son does none of these things. Instead, he does things like walking with only one arm swinging in time with his gait. Or always averting his gaze when he is handing something to you, but stares right at you all other times. He regularly scrunches his cheek down towards his shoulder, his head askance. Point being, there is a huge range of things that classify as item 1.a. Exponentially apply that variance by a factor of 12, and you might begin to sense the range of autistic individuality.

Which leads me to a story about my oldest son, J. This story strikes me as a great example of how subtle, but at the same time stark, differences can be. This specific instance relates to communication.
J has armed himself with some pretty strong communication skills over time. But one must at times set aside convention when understanding J's particular way of approaching things.
Last week, my wife L was busy around the house when J approached her and tapped her on the shoulder. "What is it?" she said.
"Did you hear something?" cames J's reply.
"No - why, what do you hear?"
"I think it sounds like Thump-Thump-Thump!"
Puzzled now, L asked him where he had heard that. Where was it coming from?
J poked rapidly at his chest. "I think its my heart."
Mildly alarmed, L asked "J, honey, is your heart thumping? Are you okay?"
"I think its because I am nervous to tell you somefing."
*Sigh* "What do you want to tell me?"
"Well ..... tsk .... well .... IthinkItouchedthechairanditkindoffelloverinthekitchen!"
L, of course, was relieved on several levels that this minor thing was the cause of J's guilt trip.

Point being, this is a highly atypical and roundabout approach for a 7-year-old kid to take. But it is J's particular way to do it, and we embrace that. Time will tell how Baby C develops his own style of communication. No doubt it will be other than typical. Equally doubtless is that it will have his own personal stamp on it, and that we will strive to support him in his efforts to develop it.

Thursday, April 16, 2009

A PSA I Can Support

Many of us in the autism community are constantly appalled at what passes for "awareness" these days. There is a near-constant barrage of negative publicity regarding autism. I have seen TV ads that create a metaphor between autism diagnosis and automobile deaths in young children. PETA got in on the party a while back, and I wrote about that. Autistic kids are framed as 'monsters' in a recent campaign in the UK. Of course, there was the infamous "Ransom Notes" campaign of last year. So I expect you'll understand that I cringe when I see another Autism PSA coming down the turnpike.

This one is different. Many thanks to the Dan Marino Foundation, Ari Ne'eman and ASAN for doing a great job with this one. I hope there is more to come from this coalition.

Of course, there are other positive awareness activities going on. Here is one very good example:
Autism Awareness Video by Bev

Thursday, April 2, 2009

World Autism Awareness Day

It occurs to me that today is World Autism Awareness Day.

As a means of commemorating this day, I think after work I will go home and be acutely AWARE of how I am the luckiest guy in the WORLD to have the family that I have been blessed with, and that family happens to include two AUTISTIC sons.

Thursday, March 26, 2009

Challenging Beliefs

I am a supporter of the concept of Neurodiversity as I understand it. After a few years of striving to improve my working knowledge and understanding of autism, I think I have a pretty good grip on this concept. I can assure you that my understanding of Neurodiversity varies significantly from the ideological strawmen extended by ND's detractors. Perhaps the most common such strawman is the one that roughly states "The Neurodiversity crowd will have you believe that autism is simply 'beautiful' and that we should do nothing to mitigate any challenges for autistics since it is, in their view, just part of their personality or something". This, of course, is patently wrong.

I am a supporter of the concept of Neurodiversity and I fully acknowledge the challenges and negative aspects that can and, in many cases, do plague autistic people. In a radio broadcast to 10's of thousands of Southern Californians, I was asked about this and answered the same way I am answering here. In presentations to audiences at the University of San Diego Autism Institute, I have made the same statements.

Where am I going with this? Well, I read an essay today. A really powerful, deeply disturbing essay. And after I read it, I couldn't help but think to myself how quickly the knives would be drawn by the ND detractors out there after reading it.

The Monster Inside My Son
Above is a link to the essay, penned by Patricia Ann Bauer for In it, Ms. Bauer bares her soul and describes a shift from the type of mentality I currently espouse and write about and talk about (in her own words: "For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew.") If you are autistic, or if you love someone who is, brace yourself before reading this. But please do read it.

You see, it is fairly easy to predict the outcry once this essay makes the rounds. From the 'vaccines cause autism' crowd over at, for example, Age of Autism, there will be a cry of "Hurry up and cure your kids now before they become raving lunatics! Just click on our sponsors tab and order enough vitamin supplements and natural chelators to save your family!" Don't believe me? They've already done this, just last week.

From the 'autism is horrible and don't dare try to tell me otherwise' camp, you might see a reaction that tries to paint Ms. Bauer's experience as the inevitable endgame for "shiny happy people" parents like me who simply refuse to give in to the rhetoric revolving around how devastating autism inevitably is. You might see a call for us to pull our head out of the sand and acknowledge that our lives really have been demolished by having autistic kids. You will of course see the tired, old accusation that we are neglectful in not treating our kids! All of this is incongruous when oriented towards people like me and just about every parent-advocate I know who identify with the neurodiversity concept, all of whom carefully guide their children through various forms of available therapies, supports, and services in an effort to provide the best possible outcome for their kids.

Guess what? Nothing always works. This is a powerful, overriding message that I get from Ms. Bauer's essay. Was her son provided adequate supports, services, love and affection? I think it is a pretty sure guess that yes, he did, judgng by Ms. Bauer's long standing record as an admired and knowledgeable disability advocate and her very clearly expressed affection for her son. In her own words, "It happened no matter how fiercely I loved him or how many therapies I employed."
It is chilling to me to read the following, "Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ ... We got him into a good program and there was a brief, halcyon phase of near normalcy -- a time I long for still so ardently that I feel hungry for it at a cellular level ... I occasionally even referred to him as 'cured'." Chilling because this could be one of my sons. We have used the sam terminology at times for both boys, saying to ourselves on some days, "Gosh, its almost like he's 100% typical".
Then there are the days that one comes home with clothes destroyed from cutting them, or chewing them. Little outburts of anger that, when asked about, are simply answered in a low, monotone voice "Why do you ask me about that I don't want to answer that." Or my youngest, who we jokingly referred to as "The World's Angriest Baby" prior to our understanding of how his neurological development was affectng the way he dealt with us and his surroundings. He is a little force of nature, to be sure.

So there you have it. A "neurodiverse" dad, expounding on the difficulties that autism can entail, the fears that we have as the future seems less far away than it used to. And all this in response to a poised, respected autism advocate who has been rocked and brought to her knees in the last few weeks and months by the tragic changes experienced by her son.

I am not attempting to advance the concept that autistics are more likely to become violent, not am I trying to create fear that this type of outcome is inevitable in some individuals. I am simply stating that gut-wrenching descriptions of problems such as the one on the linked essay have a powerful and essential role in helping to form my view of the many potential challenges that lie ahead for my own sons and all autistic people out there.

Wednesday, March 25, 2009

A Stark Contrast

After a 6 week hiatus from blogging, I am moved to write today by the stark contrast in emotions I experienced from two separate sources on the internet today.

The first set of emotions were caused by this despicable opinion piece on the website Opposing Views. Titled "Its Time for an Abortion Pride Movement", it is penned by one Jacob Appel, who claims to be a bioethicist. After having my interest piqued by the title, it took me a few paragraphs of reading to realize that Mr. Appel is not kidding. He actually believes that aborting children's lives during pregnancy is not only perfectly acceptable from an ethical standpoint, but also something its participants should be proud of and build an identity around, much like being Irish or being gay. Some excerpts, in case you would rather not read the article:
"In contrast to women who have foregone abortion, women who have chosen to terminate their pregnancies are rarely encouraged to take pride in their decisions. That is unfortunate."

"In the current political climate, deciding not to bring a fetus to term, if a woman is unready to parent, or if that fetus is likely to lead a life of great physical suffering, is a courageous and noble moral choice."
(I added the bold emphasis above, simply to point out that many readers of this blog understand where this type of reasoning comes from and where, in turn, it leads).

"In short, women should not merely have the right to end unwanted pregnancies, they should have the right to be proud of having done so. Surely, there is enough suffering in this world already without adding infants with Tay-Sachs disease and Lesch-Nyhan syndrome to the mix."
(I wonder where autism fits in this bioethicist's (sic) spectrum of suffering?)

"Our message should not be merely toleration or resigned acquiescence, but genuine joy that someone has made a decision for their own and for the collective good."
(There's that elitist mentality again. Does the collective good include stopping an "epidemic"? Does it factor in Special Education costs? )
I could go on at some length about the unbelievably bankrupt arguments this fool is putting forth about Abortion Pride, but it is not really necessary. I think most readers will see where this type of reasoning leads. And it certainly raises the spectre of the possibility that a prenatal "Autism Test", should one ever be developed, could lead people who support this type of thinking to opt for the abortion.

And this leads to the other item I came across. It is related from the standpoint of abortion's impact on the population of people with Down Syndrome. I don't know the exact figures, but suffice it to say that prenatal detection of Down Syndrome has resulted in the deaths of huge numbers of unborn infants. I would hope that misanthropes such as Mr. Appel of "Abortion Pride" infamy would consider learn a lesson in life from simple, true stories such as this one.

Thursday, February 12, 2009

VICP Decisions are in...

When I became aware that the Vaccine Court (VICP) was to soon announce their decisions on the three test-cases for the Autism Omnibus Proceedings, I thought about what I might write - indeed if I might write - about the outcome. Having closely followed and carefully tried to understand the various expert positions and arguments, I felt quite certain that the petitioners had very little chance of establishing causation. At the same time, I anticipated a profound sense of sorrow for the thousands of families involved, families whom I feel have been preyed upon by a group of unethical, malfeasant physicians and alt-med practitioners. How could I express this feeling in a way that is respectful to the families involved without coming across with an "I told you so" posture?

Fortunately, I don't have to come up with anything, for Special Master Hastings wrote a poignant and powerful conclusion to his decision on the Cedillo portion of the AOP. The conclusion sums up perfectly how I feel about this dark chapter in autism's timeline.

The record of this case demonstrates plainly that Michelle Cedillo and her family have been though a tragic and painful ordeal. I had the opportunity, in the courtroom during the evidentiary hearing, to meet and to observe both of Michelle’s parents, and a number of other family members as well. I have also studied the records describing Michelle’s medical history, and the efforts of her family in caring for her. Based upon those experiences, I am deeply impressed by the very loving, caring, and courageous nature of the Cedillo family. Those family members clearly have done a wonderful job of coping with Michelle’s conditions, and in caring for her with great love. I admire them greatly for their dedication to Michelle’s welfare.

Nor do I doubt that Michelle’s parents and relatives are sincere in their belief that the MMR vaccine played a role in causing Michelle’s devastating disorders. Certainly, the mere fact that Michelle’s autistic symptoms first became evident to her family during the months after her MMR vaccination might make them wonder about a possible causal connection. Further, the Cedillos have read about physicians who profess to believe in a causal connection between the MMR vaccine and both autism and chronic gastrointestinal problems. They have visited at least one physician, Dr. Krigsman, who has explicitly opined that Michelle’s own chronic gastrointestinal symptoms are MMR-caused. And they have even been told that a medical laboratory has positively identified the presence of the persisting vaccine-strain measles virus in Michelle’s body, years after her vaccination. After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr. Krigsman and some other physicians, advising the Cedillos that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions, have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment. Nevertheless, I can understand why the Cedillos found such reports and advice to be believable under the circumstances. I conclude that the Cedillos filed this Program claim in good faith.

Thus, I feel deep sympathy and admiration for the Cedillo family. And I have no doubt that the families of countless other autistic children, families that cope every day with the tremendous challenges of caring for autistic children, are similarly deserving of sympathy and admiration. However, I must decide this case not on sentiment, but by analyzing the evidence. Congress designed the Program to compensate only the families of those individuals whose injuries or deaths can be linked causally, either by a Table Injury presumption or by a preponderance of causation-infact evidence, to a listed vaccination. In this case the evidence advanced by the petitioners has fallen 173 far short of demonstrating such a link. Accordingly, I conclude that the petitioners in this case are not entitled to a Program award on Michelle’s behalf.

/s/ George L. Hastings, Jr.

Sunday, January 18, 2009

Baby C (and friends)

Some of you have been asking how Baby C is doing these days. I appreciate your questions and concerns. Many readers here know that Baby C was determined to be autistic back in August. At the time, even though it was the second such diagnosis we had experienced as parents, and even though we are generally at peace with autism and all that goes along with it from a young family's perspective, and even though we were much more 'equipped' with information than the first time around, we still had great concerns about Baby C and his outcome.

I, for one, fully realize that autism is a different experience for different people. Some are more significantly affected by the disabling aspects of autism. Some are in environments that, combined with their autistic characteristics make things difficult. There are rough spots over the lifespan. Some have challenges or discomforts that their communication differences make very difficult to convey and to request help for. Some have co-occurring cognitive or physical disabilities. Some just frankly want to be neurotypical. The list goes on and on. Autism is not "all good", and as parents my wife and I worry all the time about Baby C and what challenges lie ahead for him. That goes for both of his brothers too, as with any parents and kids, but for Baby C and his older brother J, we have the added concerns of autism.

As of now, Colin is just a happy, growing boy. He has strong likes and dislikes, he is kind of obnoxious most of the time due to pretty constant 'loudness', and his happy moments shine brightly. During his first 12-16 months of life, there were precious few happy moments. He was, quite simply, the most challenging child I have ever met, seen, or even heard of. He almost brought us to our knees with his perpetual, um, er, .... discomfort with the world around him. It is a tremendous relief to see the improvement in his demeanor and enjoyment of himself and our family.

So here are a few pictorial updates of little Baby C (who is not really a baby anymore).
Fall comes late in Southern California, and these leaves just fell from our Mulberry tree over the last three weeks. Baby C loves when Mom rakes them into a leaf-pile!

C just had his 2nd birthday this past week! In our family, on the first birthday, the baby gets to "dig in" to their birthday cake with full gusto and no rules. In the case of Baby C, he showed utterly no interest in his cake on that first birthday. So we decided to let him have a chance at Round 2, and he certainly appreciated the offer. Note how our resident canines uderstand the concept of 'positioning' as they hope for some scraps to hit floor. Believe me when I tell you that their patience is rewarded more often than not.

Speaking of the dogs, any mention of Baby C would be incomplete without also caling to attention his best buddy - Marley. Marley is the Rottweiler/Lab mix on your right in this photo. He is still very much a puppy, albeit a 100-lb+ puppy. And he still tips the scales a few pounds lighter than old man Chance, who is often seen lying down as in the photo above. Marley and Baby C play together all day, and are best buddies. For a picture of when they first met, look here.
This photo shows Baby C surrounded by some of the wonderful people at REINS, where he is the youngest rider they have ever had. After a period of adjustment, he seems to have reached a point (on most days) where he genuinely enjoys riding horses. In case you are wondering ... that's a pretty small horse. And this picture was taken while we were still fighting the 'helmet' battle with him.

Tuesday, January 13, 2009

Buyer Beware - ACAB

Here's a "press release", issued on that highly respected stalwart of news wire services, "", that trumpets:
"...a world-class board of advisors that bring extraordinary expertise concerning autism spectrum disorder care and represent the many different facets of recovery. This board oversees “Hope for Autism” the first BioNutritional Care certification program ever designed specifically for chiropractors."
This "board of advisers" is the board of one American Chiropractic Autism Board. Sounds very official! How encouraging!

Or maybe not ...
As a friend recently put it, "Health Care Fraud is a booming business, and the bad guys know all about autism."

Let's begin with a quick trip over to the American Board of Medical Specialties website, which is the "gold standard" for physician certification. If a "board" is not listed there, its not legit. A quick search for 'American Chiropractic Autism Board' and 'ACAB' turns up ...... nothing! So let's understand at the outset that we are dealing with a " board of advisors..." that has no regard or respect for established accreditation/certification with mainstream medical standards of practice. But that's nothing new for the cottage autism "cure" industry, is it?

So the ABMS search came up empty. How else can we validate the credibility of this seemingly remarkable group that is in a position to " [meet] ... the demand of parents who are desperately searching for a physician to help their child recover;..."
Conveniently, the press release has listed on the bottom a link to their very own website! A quick perusal unveils their "board members", which turns out to be a veritable pantheon of purveyors of quackery. To wit:

  • Andrew Moulden, M.D., Ph.D. (watch about 2 minutes of this video - recorded at a 9/11 conspiracy theorist march, no less - for all you need to know about this guy).
  • Boyd Haley, Ph.D., the man who has concocted and patented a home-tested chelator to market to parents of autistic children.
  • William Shaw, Ph.D, who is director of the Great Plains Laboratory. This is the primary "mail-order" lab that generates deeply misleading and flawed reports on heavy metals contamination among autistic children, primarily by comparing "provoked" urine samples to "standardized" measurements.
  • And the "Sisters Tocco" - Mary and Renee. Read on...
  • Renee is a (surprise!) DAN! doc. Hey, don't they require a medical degree for that? Uh, no.
  • Mary is an "independent vaccine researcher". She sells a DVD on her website - - titled "Are Vaccines Safe?"

Let's review for a minute. What we have here is the ACAB, made up of known hucksters, 9/11 conspiracists, anti-vaccine zealots, DAN! docs and other alt-med-gurus, backed by those who operate the bogus testing labs as well as someone who sells a home-brewed chelating agent masquerading as an FDA-approved "nutritional supplement" (OSR by Boyd Haley). Can the rabbit hole of quackery get any deeper than this? Every single one of these players has something to sell you. Speaking engagements, lab tests, DVD's, online consultations, BioNutritional "Hope for Autism" programs, supplements, chelators, certifications. And, notably, not one single peer-reviewed, documented case of even one single autistic child benefitting in even one single way from anything they sell! Its a grand scheme, and who is falling for it? Look no further than the original press release itself, as it so callously labels its target market:
"The benefits of being a certified “Hope for Autism” doctor include:

• Having the solution to the number 1 healthcare crisis affecting children;

• Meeting the demand of parents who are desperately searching for a physician to help their child recover;

• Being a part of the movement of chiropractors who are dedicated to healing our nation; and

• Increasing patient base complimenting autism care and chiropractic, allowing for the best opportunity of recovery."

Unbelieveable, isn't it? Un-freakin'-believable.

Picking up the pieces here, let's just take a quick look back at the purpose of the press release to begin with (believe it or not, we haven't even discussed that yet).
The purpose is to advertise a 3-day seminar. This seminar does NOT include the words 'autism', 'chiropractic', 'nutritional', or even 'health' in its title. It is actually called "The 2009 International Vaccine Risk Symposium". I'm not making this up - its right there on the press release.
The final two days of the 'symposium' will be spent training chiropractors on the newly minted "Hope for Autism" (HFA - nice pun, eh?) certification that promises to:
"... equip chiropractors to responsibly address autism, ADD, learning disabilities, and other neurological developmental problems using BioNutritional Care."
Just two days, and they are miraculously suited to cure children of autism and other neurological problems!

So the next time you see media reports offering a 'balanced' view of the vaccine controversy, please consider that these are the type of people that populate the anti-vaccine side. This is the sales machine that so actively pursues, to use their own words, parents who are "desperately" searching for solutions. And these are the tactics they use.
It is One Dad's Opinion that this is shameful exploitation and needs to be exposed for what it is.

Sunday, January 11, 2009


If anyone doubts the need to expand positive awareness of autism in particular (are you listening, Harold Doherty?), and of disability in general, please read this article from my local newspaper.

It is heart-wrenching to hear quotes from potential neighbors such as:
"We have no guarantee as to who is going to live there and with what degree of mental illness," said Diana Grogan, who lives a few doors down [from a proposed group home in a suburban neighborhood].

Perhaps Diana Grogan should examine precisely what type of guarantee she wants, and what misconceptions about "mental illness" she harbors that make her feel a guarantee is necessary. Perhaps Diana Grogan should consider that her life, too, may be touched by "mental illness", and exercise the same degree of understanding and compassion that she would someday expect others to exercise in her or her loved ones' favor.

There are some encouraging aspects to the article as well. TERI, the organization cited in the article, has been around North County for a long time. I've heard good things about them, and I certainly appreciate the progressive approach they are taking towards promoting independence for those who are involved with their program.

Saturday, January 10, 2009

Wii Would Like To Play...

Over the past year, in particular, we have been trying to help J - now 7 years old - to find some physical activities he enjoys. J, like many autistic people, has a limited range of foods that he eats. Though we do what we can to enhance the nutritional value of his diet, and we have employed numerous strategies to reduce the gag-reflex that accompanies so many different kinds of food, J simply does not, at this age, have an ideal diet. J's limited diet issues are exacerbated by another tendency, or characteristic, that it seems to me is also quite common amongst autistics, and that is that he prefers cerebral pursuits to physical activities. We recognize the importance of leading a healthful life in terms of impact on physical as well as emotional well-being, and have therefore been "signing up" J for a range of activities.

Over the past year, these activities have included Tee-ball. This was not a big hit (please ignore the obnoxious pun), though it is difficult to determine exactly why J never seemed to get into it. I can say that his younger brother, T, on the same team, also did not derive a lot of pleasure or interest from it. It may be an age thing. In the summer, we enrolled J in Tae Kwan Do. There, we definitely found something to his liking. The more individual nature of it, as well as the rigidity of the routines and the "demanding" nature of the instruction seems to really jibe with J's mentality. In the Fall, J joined a soccer team. This had mixed results - he enjoyed the practices due to some of the practice games we would play (i.e. Sharks and Minnows), but during games it was not uncommon for him to simply lie down in the middle of the action. The ultra-bright mornings were not ideal for him in terms of light sensitivity, and he could often be found during his "breaks" from action reading thick books in the foldup chair on the sideline instead of cheering his teammates on. Aside from these structured activities, J fully enjoys games like "Monster Tag" and wrestling with Daddy. And he loves a day at the beach, something we can do with regularity during the summer now that he is over his aversion to the movement of the waves. Surfing is definitely on the slate for the little grommet this summer (maybe Dad can learn a little too!). He also loves to swim in our pool, and has been involved in a therapeutic horsemanship program for over three years.
So at this point - at age 7 - J's physical activity and nutritional intake is a mixed-bag at best, and certainly could use some "catching up" to his pretty remarkable academic achievements.

Enter Wii Fit.

When I first read about the Wii Fit and its remarkable balance board, I knew it would be a perfect match for J and the way he derives enjoyment from his activities. As I write this blog, J and his two brothers are around the corner engaging with the Wii system and working up a good sweat doing it!

You see, the Wii Fit allows J - and everyone in the family - to create a Mii, which is a little on-screen mini-me of each of us. Once created, you step on the board and the system takes your height and weight and establishes a baseline BMI (body mass index). It also measures your overall balance and body posture. It then allows you to set short or long term fitness goals, specifically addressing the areas you would like.
Once you have completed the setup, it records your time spent in the "time bank", and also regularly re-weighs and tests balance, updating your progress vs. goals.
The player then picks aerobic (running, hula hoops), strength training, balance activities (ski slalom, ski long jump), and yoga for posture. The more you play, the more different games you unlock.
All of these features are precisely conducive to J's unique way of learning. First of all, it is engaging without being overly demanding from a social standpoint (unlike team sports). It is unforgivingly rigid in its repetitive nature - it behaves the same way each time. This avoids J's sometime-anxiety about variable things. It has clear, easy-to-understand goals, which play to J's learning style. It disguises physical activity in what seems more of a cerebral pursuit with the use of points, stars, levels of achievement, and gradual unlocking of new activities. Frankly, it is an ideal method for J to improve his physical fitness. Interestingly, since beginning this (at Christmas), J has expressed a higher level of interest in eating more healthfully (even though this does not overcome his extreme sensitivity to certain foods and the way they elicit his gag reflex).

I realize that not all autistic children or adults have would be able to play Wii Fit. I also realize that not all families or individuals can own or access one. But the bottom line is this: I can't recommend the Wii Fit highly enough for any individual who would like to help them self or a loved one to improve their physical well-being in a fun and positive way!

Wednesday, January 7, 2009

Simple Greeting Exchange

I have been, as some of you have noticed, quite absent from the online/blogging/autism community as of late. I realize everyone is busy, but my particular version of "busy" has - to paraphrase a classic Mel Brooks line - hit "ludicrous speed". I hope that soon I'll be able to return some focus to this area.

Still, I periodically come across a really meaningful piece of information or postulation that I feel rounds out my understanding of - or appreciation of - the autistic experience. To that end, I'd like to link to an excellent short piece about The Simple Greeting Exchange.

The writer is one Alan Griswold. Am I the only one who would like to offer this guy an invitation to join the Autism Hub? Dig into the archives of his blog for some excellent reading.

Tuesday, January 6, 2009

Analogy Works Both Ways

Well ... hello again everyone. Long time, no blog. On with it, then.

In the hubbub of daily life in the D household (and believe me when I tell you that a term that adequately describes our level of chaos has not yet been coined), it is exceedingly and unfortunately rare that focused, direct, one-on-one communication is able to take place.
It is very fortunate, therefore, that my 7-year-old, highly verbal, autism-spectrum son and I have established a new bedtime routine that provides that well-needed time. T, my middle son, is also welcome to join in, but this is a routine that J thinks about now all day long, and simply will not do without. This routine is well known in many households around the world, and is certainly not unique to us. It is ... Bedtime Stories.

To understand why this simple topic justifies a blog entry of its own, one must understand the stage of interest/learning/discovery/passion/focus that J is at right now. I think of him as an intellectual tuning fork in a lot of ways; interacting with him is rewarding (and enjoyable and fun) on so many levels (especially - as many "autism" parents can relate to - being previously told that his likelihood of developing valid communication aptitude is very low) and yet also rigorous by virtue of needing to resonate with his particular and fairly demanding communication style.

Anyway, a few weeks ago I settled into a certain genre of storytelling that is based on modifying fables ("the moral of this story is...") to fit the theme of a young Indian Brave named Redwing. Actually, it began as Redwing - largely due to my ignorance of Native American nomenclature and resulting cliched approach to inventing a name (let alone the Detroit NHL franchise of the same name) - but very quickly changed to a new name.

Me: "This is a story about a little Indian Brave named Redwing. One day Redwing..."
J (interrupting): "But my favorite color is Blue"
Me: "Okay, blue is a great color. I like orange, myself. But this is a story about Redwing and the big archery contest..."
J: "Awww. But my favorite color is blue. Why is Redwing Red?"
Me: "Redwing is his name, but the important thing is that he needs to get ready for the big archery contest! So Red wing decided one day..."
J (interrupting): "If he was blue, then he would be my favorite color, you know."

*pause, as I consider...*

Me: "Once, there was a little Indian Brave named Bluewing..."
and off we went - a tradition was born.

Now we have run into another unexpected issue. J now recognizes when I am using an analogy to his own life to try to create a teachable moment.
Example: We recently took a trip to Hawaii. My wife and Baby C were unable to go, depsite the existing travel plans, due to Baby C's own issues (he was diagnosed with autism in August). J had very significant homesickness issues due to, in his own words, Mommy and Baby C not being with us. After we returned, I adapted a Bluewing story to mimic this set of circumstances. I very cleverly wove a tale about how Bluewing was going "whale-watching" on an island, and how he would be honored to travel with his father and all the fun adventures they would have, etc, etc. At the end of the story, to which he listened with his characterstic stoic intensity, he immediately asked, "Why did you tell a story about me being homesick in Hawaii?"
I explained the value of analogy and how it helps us to understand difficult situations in our own lives, and I think that resonated with him. Because, ever since, he will certainly point out when I am inferring an analogy but he has no real objection to it. In fact, he may have warmed to the idea that maybe the Ol' Man has something relevant to offer his little 7-year old body of wisdom. And I can't help but think of this bedtime story routine as a reasonable extension of Social Stories, which seemed to help J so much from ages 3-5. Social stories presented J with digestible information in the form of a simple storyline accompanied by little pictures (i.e. "going to school" or "visiting Grandma and Poppa"), whereas Bedtime Stories seem to be fulfilling a more advanced set of needs in terms of a budding sense of ethics and morals (Bluewing is a pretty upstanding little Indian Brave) in a format that is easily digestible due to the routine and mutually-agreed-upon format.
All of which serves as yet another reminder that, in many ways, raising a child (or two) on the autism spectrum is not wholly different from raising a typically developing child. A little understanding and acomodation does go a long way...

Tonight, I told J that he needs to tell me a Bedtime Story. That from now on, Tuesday night is the night that he has to 'reciprocate'. Do you doubt his grasp of the nature of the analogy?
J: "There once was an Indian Brave named Orangewing. (big smile; "because that's your favorite color, Dad"). He knew he had to go to work. But he was sick. So he went to work sick, because he always goes to work. "