We Go With Him

Climate Change and Autism

No, I do not mean to imply that climate change causes autism.

Climage change is real, autism is real and the temperature (with barometric pressure rising or dropping in full force) going up by some 20 degrees then down shortly thereafter, is a little harsh and if you're not one for transitions of any sort, it can all be really a lot to handle.

Wearing shorts instead of long pants is one such irksome transition for Charlie. Usually we try to wait until it is totally clear that warm(er) days are here to stay so he doesn't find himself with bare lower legs in an ice storm. For Charlie, summer temps in early April are not occasion to say 'yay, shorts work today' but to sweat it out on the daily round of bike rides and walks.

That is, what you see him wearing in the above photo taken a few days ago when it was a coolish, very pleasant spring day, was also what he was wearing on an overly fast, muggy hot, mostly run-not-walk exercise fest on Monday night.

And also on a briskly paced walk with very contained running Wednesday night in rain and as the sky flashed suddenly with lightning streaks.

It's cooling off here now, slowly. Apologies to the environment! but we have been turning on the air conditioning, the better to make the climate within comfortable, and comforting.  

Bye Dad Hi Dad

A few thoughts of mine on two new studies regarding the detection of autism in infants over at Care2.com ending with some musings about how, even though it was not exactly easy to learn that our toddler boy had a severe and significant neuro-developmental-psychiatric disability, it was a lot easier to help Charlie through neurological storminess when he was carry-able. Too, a younger Charlie did not stand out in public---and attract attention he does not like--- the way he does now. 

Yet. Our now older, taller, well-muscled and athletic teenage guy seems to be figuring out how to detect storminess in himself as it's starting (rather than while in the throes of it) and to tell us what he needs to do.

This would be, to ride his bike.

Jim always has to accompany Charlie on these rides, of course. It is the case that Jim has been with Charlie (and a-bike himself) on 99.99999999999999999% of these rides, with the exception of my own highly unsuccessful attempt to ride with Charlie two summer ago, and a slightly more successful effort to run behind Charlie (he was only about 7 years old) while he pedaled ahead of me. Also, at one of his former elementary schools, Charlie used to ride a bike (someone had just left it at the school) in the parking lot and two of the (male) aides (whom Charlie adored---so of course, the next year these aides were transferred to another school site) took turns running after him.  Good times those were, very good.

And now. 

Lately Charlie has been saying,

'No Dad, bye Dad, all done Dad.' And then, 'Dad will be back. Dad back. Hi Dad!'

Charlie is (well, this is how I translate it) trying to express an idea that's complicated, a bit contradictory, complex: Dad is gone---therefore Charlie will not be going bike riding with Dad---that is (speculating here) disappointing, sad, puzzling---Dad will come back---and there will be bike riding and other sorts of fun such as orderly Mom doesn't provide (well, not in that exhilarating, aerobic way).

Wednesday I picked up Charlie after day #2 back to school (it was a good day, as Charlie's teacher---she came out to say hi---told me herself). Charlie said those above phrases when we got home and went up to his room to take a rest (napless, as it turned out). Jim came home, Charlie got up, they went for a bike ride, the first of what would be two.

I've been thinking a lot lately about how, as Charlie grows up, things get easier, and harder. About how, 'easy' and 'hard' aren't really the right words.

Yes, there are times I really miss scooping up my boy and carrying him (kicking and back-arching, but in my arms) to safety.

Yes, it feels pretty darn motherly good to hear Charlie call for his bike helmet and hasten out to the front yard so he can bike out his worries and anxieties. 

He certainly doesn't put my shoes amid the pantheon of his favorite things (see photo above).

If that isn't a strong communication, what is?

Will this be my last vaccine post ever?

One can only hope.

Here's the post over Care2.com, Vaccines Don't Cause Autism, No They Don't.

 

Sensitive to Everything (2): Storminess, Medications, Change

Autistic children are slower to integrate multiple stimuli than same-age children whose development is more typical, according to a recently published study in Autism Research. Electrical activity in the brain was measured in 17 autistic children ages six to 16 and in 17 'typically developing' children while they watched a silent movie and were presented with unrelated auditory and tactile sensations. The researchers then

 

.....summed the responses to the single sensations, as measured by high-density electrophysiology, and compared them with responses to the combined stimuli. The combined responses of all the children exceeded the sum of the single responses -- an indication of multi-sensory integration. But the autistic children had less pronounced differences, the researchers said, suggesting their integration was less effective.

As well, the multi-sensory integration took place within about 100 to 200 milliseconds of the stimuli in the typical children, the researchers found, but only occurred after about 300 milliseconds in the autistic children.

 

It's not that autistic children can't integrate different types of stimuli, but that they have difficulties doing so.

While the study doesn't address whether this difficulty in 'sensory integration' can be correlated to behavior issues, I don't think Jim and I are alone among parents of kids on the autism spectrum who think, there is a connection, and we're not necessarily in need of a research study to prove it.

I wrote a while back that Charlie is 'sensitive to everything.' 'Everything' meaning sensory stimuli including sounds, textures, smells, tastes, how his favorite little items are set on the floor, the barometric pressure, what Jim and I wear and whether or not a shirt is tucked in or someone's hair (mine, that is) is pulled up in a ponytail, when Jim and I return to work after much of the summer off. Being the creature of intensely guarded habit that he is, Charlie would prefer, or is inclined to think he would prefer, that things be always the same.

But oh what an overly, entirely OCD world we'd inhabit then!

And too, there are small changes that Charlie is not so aware of, but that nonetheless affect him, in a physical sense. One of these would be, or might be---because it's not really possible totally to know what causes Charlie to have two bouts of neurological storming as he did for the past 24 hours (of me writing this post)---a very small change in one of the four medications that he takes.

Charlie's neurologist has wanted to see if he does not need to take all those meds. It's never entirely clear how any one medication is affecting, helping, hindering: Giving psychiatric, antipsychotic, and anti-epileptic medications to a minimally verbal autistic teenager who isn't yet able to type or express too much verbally is a fairly daunting challenge. One is as frequently likely to be wrong as right, and sometimes one is both at once.

After our June neurologist visit, we attempted to lessen the amount of Zoloft Charlie takes. He's taken Zoloft for over five years and, now that he takes a number of other meds, it's not so easy to figure out what is doing what. Frankly, it's often seemed that Charlie was taking Zoloft more out of habit and because of our worry about what might happen if he didn't. So back in June we halved his dose.

After two days, charting a notable increase in anxiety and OCD fixativeness in Charlie, I called the neurologist's nurse and Charlie went back to the (relatively low) dose of Zoloft he's been taking for years.

Monday, following Charlie's appointment, we gave Charlie a half-pill less of Trileptal.

Tuesday morning, 'contained' SIB in the white car.

Wednesday afternoon, 'contained' SIB in the white car following a new and challenging bike road on the D & R Canal.

Past 24 hours as I type this post, two instances of heavy duty neurological storminess.

Mid-Thursday morning, I stood in the hallway of my office building and left a message with the neurologist's nurse. She called back after a few hours. After stating that---with the Zoloft experience in mind---Charlie seems very sensitive to even small changes in his medications, she said to increase his Tripleptal dosage to what it was prior to Monday.

Granted, there are other reasons for those storms, the chief one being, Charlie is not in school and, Wednesday night, rather gloomily counted off the 20 days till school resumes on the calendar I made for him. Another possible reason is big-time stomach trouble due to something that Jim and I can't fathom, there being no change in Charlie's diet. Charlie could, should, drink more fluids but getting him to drink more water is easier said than done. (Yeh, like everything.) Charlie does like diet Coke and, after I came home from work (Thursday was the last day of Orientation for the incoming first-year students and I had gone in to help schedule their classes), Jim went to the convenience store and returned with a couple of 'brown drinks.'

It wasn't a peaceful-easy afternoon. We were lucky that a friend---a young woman who's a college student and disability activist---stopped by for a nice visit and a nice break from the routines the three of us can't help falling into. Charlie had been groggy and sleepy and just uncomfortable all day and at last went out for a bike ride with Jim.

It was a far, far from perfect day. It did end a lot more peacefully, as in less stormily, than it had begun.

It is good (not sure that's quite the right word) to know how the meds Charlie takes may be---are---helping him.

We do hope---and I think  we're not alone---that there can be some less stormy way to figure that out, and to help Charlie allay the riot in his head when things don't come together the way he so thought they must.

 

O New York Times

Autism: A Disease of the Rich? is the title of a New York Times Freakonomics blog post on this PLOS One study, Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a U.S. Cross-Sectional Study. 

Oh gawd.

Sure, families with more economic resources are more likely to have access to doctors, school services, therapists, information and education that might lead them to suspect and seek out an autism spectrum diagnosis for their child, and then to be able to provide that child with supports and services. 

In the effort of providing such (services, supports) for our particular (lovely, autistic) child, it would be inaccurate to say that we have become richer, in an economic sense. Let's not even bring up having dental surgery under anesthesia at a hospital to get 'routine dental care' performed; maintaining two residences for a few years (that is, paying mortgage + rent) so Charlie could attend an in-district autism program whose personnel in the end decided that he should be, at least temporarily, institutionalized; paying up various bills for home repairs (plumbers are not cheap, especially if called repeatedly), car upkeep, etc., etc.. 

And I'm not even throwing in bills for private ABA/speech/occupational/physical/ETC. therapy, or the rate we paid sitters when we could find people to watch Charlie. 

If we were 'rich' and then Charlie got diagnosed with autism---a correlation suggested by the New York Times Freakonomics blog post's irresponsible headline---then allow me to suggest a few corollaries.

If autism is a disease of the rich, this is a good thing, as you would otherwise become poor paying for all of the above.

Or perhaps more accurately:

If autism is a disease of the rich, it is more technically termed a disease of the financially-strapped after a child is diagnosed. And let's not get started about the employment options, or shamefully huge lack thereof, for many adults.

Or metaphorically:

Autism is a disease of the rich, in what is very much a figurative sense. We are by no means an economically over-endowed household but lemme tell you, every time I see Charlie zooming down the street on his bike, swimming out in the ocean, and just walking through the rooms of our house jabbering away in his one- and three- word utterances, I feel like I've been handed a million dollars.

Yes, maybe autism is a disease of the rich after all.

O New York Times, I know you can't be all that wrong now, can you?

Some Thoughts About Autism Research

The significance of Charlie standing by our front door, raring to go on an evening walk yesterday with Jim (it was raining; Charlie pulled on his hooded sweatshirt and handed Jim his) will be revealed towards the end of this post.

First.

A new study published in yesterday's Nature by researchers from the Autism Genome Project is the 'largest study [on the genetics of autism] to date.' 996 individuals on the autism spectrum of European ancestry were compared to 1287 individuals who do not have autism. While previous studies have looked at genetic variants, this study focused on 'rare, genic copy number variants' (CNVs) which affect only about 1% of the population. From The Great Beyond blog at Nature.com:

[Researchers] found that autistic people did not have more rare copy-number variants than those without the disorder, but their variants were more often found within genes rather than in the vast amount of DNA located between genes. Specifically, 20% more genes contained a rare copy-number variant in autistic participants in the study. And among genes previously linked to autism spectrum disorder or intellectual disability, 70% more of them contained a rare copy number variant. [my emphases]

As noted in a Time magazine article on the study, CNVs 'may include either missing copies or additional copies of genes; most genes have exactly two copies, one inherited from the mother and the other from the father.' The CNVs resulted from 'numerous de novo and inherited events'---that is, they sometimes occur spontaneously in children, and are sometimes inherited from their parents.  Further, from studying the genes showing the CNVs, researchers found four new genes (SHANK2, SYNGAP1, DLGAP2 and the X-linked DDX53–PTCHD1) that may be associated with autism.

The Great Beyond blog at Nature.com, the Time magazine article, an article about the study on US News & World Report, a press release from Autism Speaks, all also note potential actual applications of these findings, to develop 'novel treatments' by offering

shared targets for new drugs, so that even people whose autism has slightly different genetic or environmental causes may benefit from the same therapies. If the biology of the disorder converges on similar pathways in the body, a single treatment or therapy targeted at these pathways could hopefully treat a good proportion of cases. [Time magazine]

Geraldine Dawson, chief science officer for Autism Speaks and a psychiatrist at University North Carolina Chapel Hill, also notes that the findings offer new information about diagnosing autism, perhaps through some kind of genetic testing.

As I've written before, I understand that, at least in the case of our son Charlie, autism is genetic, and I'm very interested in any and all new findings in genetics about autism spectrum disorders. Taking the long view, I'm hopeful that someday genetic research might lead to a better understanding of autism that in turn might lead to the development of medications that might, again in turn, better help Charlie with anxiety and obsessive-compulsiveness, both of which seem to play a large role in his neurological storms, in those 'challenging behaviors' that always seem to get in the way of progress, of learning and of communicating for him.

But in regard to Charlie's immediate future and his most pressing needs, the new study seems---and I am so sorry to sound cynical and, may I dare say, jaded---as full of promise as so many others but mostly of interest in what seems to be increasingly an intellectual sense. That is, it is of interest to see our knowledge of autism genetics being finessed, but there's little, and really not any, direct impact on helping Charlie with what he needs.

Which would be---taking in view the fact that is now 13--- the following: we need to start thinking about transition (from school to what lies after) and about guardianship; about training Charlie to work and take care of his basic daily needs; about finding employers and convincing others to hire persons with disabilities; about finding Charlie a place to live in the community; about providing Charlie with activities in his leisure time; about finding and training and retaining staff; about finding medical professionals (doctors, dentists) for an autistic adult; about financing all this. 

I'm not saying that every scientific study and research paper about autism has to be about these needs, about what are 'best practices' for creating programs and services and training staff. Research is important and necessary, nobody can deny that. But as my son, and all the 200 or so children in his school (a county center for children on the autism spectrum and other developmental disabilities), age out of the school, what's going to happen? 

Should the bulk of the funds raised in the name of 'autism awareness' go to 'research' carried out in a laboratory that may one day lead to the development of some new medication that might help my son, or might make things worse? To creating tests to detect autism in children at younger and younger ages, even before they are born? Should we be devoting the lion's share of research dollars to trying to detect autism in younger and younger children who may or may be autistic? 

What about devoting even more funds than we presently are (or are not)  to create programs and facilities and training and supporting staff? Those teachers, therapists, and aides who spend hours with Charlie and his fellow students, who I see every day, quietly, very seriously, walking the students in from the many buses (like I said, there are some 200 children at the school), sitting with them through happy teaching sessions and tough anxious moments.  The school has a music teacher, an art teacher, a P.E. teacher and they are essential to Charlie's learning; would that there could be more individuals trained to teach music, art, athletics to kids and adults like him, as a child and when he is an adult.

What if every individual on the autism spectrum automatically had respite support by well-trained carers every week, and didn't have to beg request it? Jim and I are perfectly glad (indeed, we relish the occasion) to accompany Charlie on his walks 'round the neighborhood morning noon and night, in sleet and rain and under a boiling sun and in the snow, butwe are only getting older (and creakier in the limbs, etc.). Charlie was so eager to go on a walk Wednesday evening--he'd been pent up in the house all afternoon due to the rain---that he stomped and jumped and ran all over our front lawn waiting for Jim to grab his running shoes and an umbrella (the rain never stopped). Charlie's learned that the walks allay his anxieties, energies, racing thoughts. 

Without stepping into the hot water of discussions about curing and preventing autism, I think we need to ask ourselves, should we devote funds to find out how to prevent autism in yet unborn children, or to help those individuals who are here with us today and who (and whose families) can always use more? 

(Occurs to me that maybe I just got at least one foot rather wet........)

What about research to develop better, improved, even new technological solutions for augmentative communication? To design schools and residences and other buildings using principles of universal design, to create accommodations that make it possible for someone with sensory sensitivities and motor (gross and/or) fine to be as independent as they can? To create computer home monitoring systems so that someone like my son could live in an apartment or house with a roommate(s) and someone (like us and also other carers) could keep track of what's going on, without actually having to be there? 

I know that, ideally, research funding would be dedicated to both science and to more practical applications. But I wonder, what is on the wishlist of needs of the 996 families whose children were part of the study? 

On the top of my list: I want always for there to be someone who can, who will, walk with Charlie.

Camelot

 At Charlie's spring concert last Wednesday, one of the classes of high school students sang the first verse from 'Camelot,' the Lerner and Loewe musical that is sometimes (accurately or not) seen as a symbol of John F. Kennedy's presidency; of what might have been achieved. The first student who performed did most of the first verse:

A law was made a distant moon ago here: 

July and August cannot be too hot. 

And there's a legal limit to the snow here 

In Camelot. 

The winter is forbidden till December 

And exits March the second on the dot.

 By order, summer lingers through September 

In Camelot. 

Camelot! Camelot!

Hearing these words---about a 'congenial spot' that's perfect to live in, so perfect that hopes it might exist forever---I felt a heavy dose of wistfulness.

There were moments when Charlie was much younger when things would seem to have reached a certain level of stability, an even keel, a 'just right': When we'd found a school that he was happy in and that accommodated his needs. When he was having minimal behavior trouble there and at home. When we were able to do all kinds of things from eating in restaurants to walking around New York to flying to California on a non-stop flight.

(Well, to be honest, I never found any of those flights idyllic, but that was at least partially because airplane travel for 6 or 7 hours was tough for Charlie and for anyone in general.)

At those moments, I'd feel like I wished we could just bottle up the moment---that beautiful happy gold-bright on Charlie's face as he beheld the ocean waves, or showed off how well he could ride his bike to a documentary film crew---and keep things that way always. Of course, reality would arrive in the next few seconds and I'd then think, ok, so we can't keep things like this forever, but can't we retain some of it? 

A lot of these musings were tied up with the pang I felt in seeing Charlie getting older and bigger. 

Grounded

 Write a post on vaccines and get lotsa comments, and perhaps especially if you take the position that vaccines and autism aren't linked; that autism (in your family's case at any rate) is most likely genetic; and that all this attention, energy, doggone fixation on the vaccine topic has been highly successful at diverting the public eye from the very urgent, very real needs of individuals on the spectrum and their families for supports and services, programs and school, jobs and job coaches, housing and transportation from the housing to the jobs. 

I suspect I sound like a broken record in the above paragraph. Really, I think I've typed "need for supports and services" so many times my fingers are on auto-type when I do.

Charlie woke up cheery and smiling at 4am yesterday morning. We heard him putting on his coat and shoes and opening the door. I got up, pulled on a jacket and shoes, and went out. Warmed from jogging to keep up with Charlie, I really didn't need even the light coat I had. The sky was bluish but still tinged light orange to the east---Manhattan never sleeps, right?---and I made out the Little Dipper.

Back inside, Charlie ate the pack of sushi I'd stowed in his lunchbox, used the computer, stood by the stairs. "Yes, bedtime," he said. Before I could tell him I wasn't going to object, he said "no bedtime" and so, for the better part of an hour, he stood around and, from time to time, chatted about "no Alphabert" (a toy computer he used to have) and "no Portia" (my sister-in-law's dog whom Charlie has not seen in a long time, which is as well as he used to run when he saw the little canine), while I sat on the couch and read about women in the Hellenistic Age in ancient Greece and Egypt.

(I imagine they got up early, and that children could have well had something to do without it.)

I ran in late to my class as there had been traffic getting Charlie to school (Jim drives him Monday, Wednesday, and Thursday as he teaches on the other days), and then a bit of a bottleneck (due to Road Work and the closure of a crucial lane). Some hours later I raced from Jersey City to the suburb where Charlie's school is so I could make a fast A & P run (part of the proceeds of which Charlie helped himself to by reaching into the white car's trunk). I answered last-minute student queries about the impending Greece trip (um, we leave tomorrow) (!!) inbetween Charlie asking to use the computer to watch YouTube. Just as I was going to sit down and grab a bite to eat, he asked to go out; as we buckled our seatbelts, I handed him a piece of paper on which I'd written "just a ride/eat home/walk." Charlie took it and placed it on the backseat. 

We drove a circle through and discovered a 24 hour CVS and another Home Depot (you never know when you need 'em). We saw a sign for another town's library but somehow missed seeing the actual library (I think the building must have been quite small). We drove past some body shops, gas stations for non-national chains, and a house with a banner that read "CHILE" draped across its front porch. We went into our driveway.

Charlie said "I want" and then "no stay in car" and I explained I was going to attempt to make yellow rice. I went into the house and brought out a box that indeed said "YELLOW RICE" with a picture of said dish in all its sunny glory and Charlie seemed pleased, and came inside. My parents appeared with backpacks and bags (they'll be staying with Jim and Charlie for the next week-plus). Charlie looked down when they came in and pressed his hands over his ears---he likes to warm-up slowly. He turned his nose up at the yellow rice. (Theory can be so much better than the actuality.)

14 hours later and 16 1/2 hours later, we were out on the street again, the second time with my dad keeping pace. Charlie sat on the couch and talked about a classmate and an old teacher and said some really lovely "good morning!" 's. (In anticipation of how my dad says that to him when he's waking up.) He went to bed as 10 was nearing.

Throughout the day, amid sending Jim missives of what Charlie and I were up to and getting things ready for my parents' stay, I'd been stowing things in a big black backpack: Passport. Contact lens cleaner. Bandaids. Toothbrush and toothpaste. Books (10 hour flight---only time I have to read something besides materials for my classes).  A few euros I'd saved from last year's trip. A list of students' phone numbers, health forms, xeroxes of passports, our itinerary, the two-sided fold-out map of Greece I'd bought at a rest stop last year.

It's all very exciting. And maybe all the more so because I know I'm grounded, by needing to plan ahead and think through all of Charlie's needs, and in particular those that I do as second nature. Jim of course is amply prepared but did note to me that, last year, there were lots of little, little things that came up that he'd wished he'd asked me. 

Really, the three of us spend so much time together that going away feels very odd and kind of inconceivable. We've all been through so much together that I'm more than sure we'll remain a tight team o' three. Knowing I'm so grounded by my guys, I think of us as the parts of a compass in John Donne's poem, A Valediction Forbidding Mourning"":

Our two souls therefore, which are one, 

Though I must go, endure not yet 

A breach, but an expansion. 

 Like gold to airy thinness beat. 

 If they be two, they are two so 

 As stiff twin compasses are two: 

Thy soul, the fixed foot, makes no show 

 To move, but doth, if the other do; 

 And though it in the center sit, 

 Yet when the other far doth roam, 

It leans, and hearkens after it, 

 And grows erect, as that comes home.

It's three souls rather than two but Donne's image of the two arms of a compass, connected at the top and the one swinging out to draw a circle and then returning to "end where I begun": I'm the roaming arm on this excursion, and I feel more able to go forth knowing I'm grounded by my two best friends.

As for why I feel so grounded: Here's a post regarding Gravity Pulls You In.

Nice Day & Newsworthy

Sunday was fireworks-less in our household. Charlie slept in a little (till 8am). We did walks (2---short and long) and rides (3---school, grocery store, Jersey City so I could retrieve some items from my office). Charlie used the computer---his typing is getting much better and a little faster, and he seems at long last to be distinguishing between the "I" key and the "L" key---and was eager to find, via Google Search, images of long-gone toys (and he was positively tickled pink when I found a 4 minute video of a green and blue Leapfrog Leap Pad like the one he used to have). All that good exercise in 20-degree or so weather stoked his appetite and he was in bed, and asleep, before 7pm. 

(This does bode an early wake-up, but I'd rather be up earlier rather than running around to get things ready in his lunchbox and for teaching, so that's as well.)

It was a plain and simple nice day. Granted, we didn't do anything controversial or out of the ordinary. But there's something to be said for learning how to be, quietly, peaceably.

---

Lest you're wondering or lest you're not: Jim and I completely and utterly enjoy our walks with Charlie, especially the long ones. Jim and I both get a lot of good thinking done out there and Charlie returns from these walks not at all fatigued, but for sure relaxed and ready to sit down and just hang on his own. I'm starting to see our neighborhood, and the neighborhoods we're venturing into (it is a 4 1/2 mile walk so we end up in walking briefly in two other towns), merely as extensions of our yard (and I wonder if Charlie sees it that way too, somewhat?). Jim (as he'll tell you himself) has ADHD and, while I don't want entirely to speak for him, regularly attests to the need for him to be in motion, to get his thinking and doing going. 

I'm the antithesis of ADHD, you might say----I do like the walks, but I get as much done sitting at a desk for hours on hours.

All that said, Jim would (if I may again speak for him...) also note that it was a quite significant effort for him to write his book, On the Irish Waterfront. The book took over ten years to write in part because Jim kept interrupting his work to run out and ride bikes with Charlie; because he had not mountains, but a mountain range of primary documents, to read through to piece together the story. He got another mention in the New York Times by Sam Roberts over the weekend, in 

Long before “Sex and the City,” Mr. Big was Bill McCormack, who ran a stevedoring company and was billed as the boss of the waterfront. In “On the Irish Waterfront: The Crusader, the Movie and the Soul of the Port of New York” (Cornell University Press, $29.95), James T. Fisher dissects the way labor and business wielded power on the docks in the 1940s and ’50s.

If you have seen the film “On the Waterfront,” you have gotten the gist of it. Professor Fisher, who teaches at Fordham, amply fills in the gaps among organized crime, public officials and the street priests and Catholic hierarchy.

And, not that you really want to read another post about Andrew Wakefield, the General Medical Council, vaccines and all that---here I am on Vaccines, Autism, Bad Research And The Damage Wrought By Andrew Wakefield at Care2.com. It was in February of 1998 that Andrew Wakefield and two other doctors at the Royal Free Hospital in London published a paper in the Lancet medical journal, that, drawing on case studies of only eight children, said that the measles vaccine might be linked to inflammatory bowel disease, and that this might be connected to autism; when Wakefield announced at a press conference that he thought the measles, mumps and rubella vaccines in the MMR vaccine "should not be given in one combined shot, but in single doses, preferably a year apart," he sparked an international scare about the MMR vaccine that we are still feeling the effects of. Indeed, for all the years of Charlie's life and after his being diagnosed with autism, we've been hearing about vaccines and Wakefield etc.. 

Gently peaceful Sundays likes yesterday don't make for attention-grabbing headlines or colorful tales but ok by me to leave such for the history books.

A Myth (of the Greek kind) and a Legal Ruling (of a vaccine kind)

 Jim went to Philadelphia yesterday to give a talk to an Irish lawyers group (last week it was the Celtic Medical Society or some such he spoke at---I guess the book isn't titled On the Irish Waterfront for nothing). Charlie and I cooled our heals at home in Jersey, making our usual rounds: driving in different directions on the way home from school; walking 'round the neighborhood; burrowing (Charlie that is) through the refrigerator and cabinets for all available snacks (the New York Times's recent article on "snack time never ends" be darned----boy is hungry, boy eats); typing on my laptop (during which I pondered what Charlie might make of an iPad); gassing up the car so as not to run into the "time to drive to school and then mom to work and the orange 'gas tank is getting empty' light just went on!" problem; stopping at the little local supermarket that has become Charlie's preferred; one more walk in a howling wind (all this wintry walks are turning into an excellent excuse for me to get myself a nice new, and warm, hat); early dinner; early bedtime.

Another day of just what it's like around here.

Inbetween all that (and of course after Charlie was in bed) I read the myth of Demeter, goddess of agriculture, and her daughter Persephone in the Homeric Hymn to Demeter---the Greek myth about how the maiden Persephone is abducted by Hades, god of the Underworld, leading to Demeter falling into mourning her missing child and going in search of her, and letting the crops die and everything growing wither away. Demeter travels down to the Underworld to find Persephone only to learn that, as her daughter has eaten a few seeds of a pomegranate, she can only return to the world above for half the year. And so, it's said, do we have the seasons, spring and summer when Persephone is with her mother, who rejoices, and makes the crops and plants and flowers grow, and autumn and winter when Persephone joins Hades and Demeter withdraws in sorrow.

A couple of years ago when I first started blogging, I referred to this myth in seeking ways to describe how a parent can feel on learning that their child has been diagnosed with autism---that their child's been taken away and, even though the child returns, something is different, it's never the same. 

While I think the myth does capture how a parent feels, I now find the comparison not so just and potentially perilous. Even before the Ransom Notes advertising campaign---in which autism and other childhood psychiatric disorders were portrayed as "kidnappers" who left "ransom notes" threatening dire, empty lives for the children they now had in their clutches---I've never thought that "one day I had a perfectly normal child and then autism came like a thief in the night and took him." The day before and the day after---all the days of his life---Charlie has been Charlie. The diagnosis (Charlie's is, and has always been, "autism") gave clarity in the form of a word that we could write on forms and say to "professionals" to get Charlie therapies, services, into programs.

Whenever I read about Demeter and Persephone, I still find it speaks to me about the love and bond between mother and child, and the terror of loss of each other; about the ache. I guess you could say I've made my views on "recovery from autism" and all of that pretty clear and I'm quite aware (aren't we all, at this point) of the vitriol that gets cast between those who are "one side" of this issue, and those who are "on the other," and those, too, who find themselves in the crossfire. But I do think that one thing that joins all of us parents together is that sometimes we just feel pretty bad, not because we're yearning for the "what if" of a child who's not autistic, but because we're human, things can get really really tough, we don't get enough sleep and just as we're sitting down to read a few pages in a book we come upon some mess needing immediate attention. We just feel bad like any parent who hates to see the child they love unhappy, and we feel it's our parental responsibility to take care of that child. Of our child.

So the news about that Dr. Andrew Wakefield has been found "irresponsible" over the MMR vaccine scare by the General Medical Council; that he "abused a position of trust as he researched a possible link between the MMR vaccine, bowel disease and autism in children" leaves me feeling sad and worn most of all. How much time have we (and I include myself) spent in exchanges about vaccines and autism and Dr. Wakefield himself, exchanges that have taken us far, far away from talking about actual individuals on the autism spectrum and their (in some cases) long-term, life-long needs for services and supports? How many frankly mean, cutting,  things have we flung at each other? How did we let ourselves get so caught up in this controversy that, as it's gradually developing, indeed has less and less to do with autism?

Because all those parents who believed Dr. Wakefield and his theories about a "link" between vaccines and autism----because we all love our kids and, like Demeter, would travel to the ends of the earth to help them.

You don't need me to tell you that love is foolish, that love makes you proverbially blind, makes some things you might look back on and question yourself about. 

Emily has a list of media and blog responses to the news about Dr. Wakefield and the GMC. (LB/RB of course already has a couple of posts and, on the other end of the spectrum on this issue, is AOA.) I suspect the divisions of belief, and the contentious exchanges, will continue. Certainly it would be nice if we could end the autism wars---but somehow it seems near-impossible to stop "looking in whatever direction we think most important at the moment," so that we "let our understanding of what binds us together atrophy."

Accordingly, while unable to resist an occasional dip into those more contentious waters, I'll be looking homeward most of all, and boyward. Because, this is what it's all about.