We get Alex up for school at 6:15. I do this four days a week, and Jill sleeps in a bit before she has to rise to get Ned ready for school. So I’m alone with Alex.
I have stuff to do for my day, plus make sure he gets dressed and brushes his teeth and gets his stuff together. (First I have to make sure he stays awake, as he’s often up in the middle of the night, and 0615 comes early.) One thing I like to do is empty the clean dishwasher so Jill doesn’t have to do it.

So I’m just about done with the previous night’s dinner plates and the spoons when I notice that I haven’t heard anything from Alex for a few moments. “Alex?” Nothing. “ALEX?!” Nothing. I hear water running from the bathroom.

I go in. There is Alex. The toilet is overflowing. There’s almost an inch of water on the floor.

He says nothing. He isn’t giggling. He looks at me.

His toilet training – and believe me I know how lucky we are – went splendidly from the moment Jill took it upon herself to decide, “Now’s the time!” Someone has also taught Alex to use toilet paper. A lot of it.

“Jill, get up! I need a hand this morning!!”

She got Alex dressed and stuff while I mopped. And mopped, all the time wishing he could’ve called out for me, or bragged about it (who hasn’t wondered how a toilet would react if you put almost a whole roll of paper down it?), or even just giggled.

Punishment?

“For a first time offense, I would react by having Alex assist in the clean up,” offered fellow LinkedIn autism poster Jennifer Merritt. “Perhaps explaining more about what toilets are used for, and why it is important that we don’t stuff them. If your son is interested, provide an anatomy lesson of toilets, identifying the key parts of the toilet and the functions they provide. Perhaps one solution would be to limit the amount of toilet paper available to the child, and also showing him how much is the correct amount. Being curious is natural, all kids put one thing or another down the toilet just to see what happens. If it were to happen on multiple occasions, then perhaps a punishment would be in order, but I would not worry to much about it for the first offense. Correct, instruct, and be done with it.”

My thoughts exactly. He learned to handle a mop, and we got our bathroom floor clean. Floods haven’t been repeated, and in fact lately Alex shows more drive than Ned when it comes to helping with other chores, like setting the table and putting groceries away.

I’ve found the autism groups of LinkedIn great places to ask advice and find help. My LinkedIn autism groups – and there are many others – include Autism Awareness, Autism Advocacy, Autism Speaks, Autism Help, and Linked to Autism. Jennifer has also started another cool one: Cookbook 4 Autism Speaks.

Earlier this week, mega-autism-organization Autism Speaks announced the appointment of three new board members, Artie Kempner, lead director for the NFL and NASCAR on FOX; Billy Mann, President of International A & R - Labels and President of Global Artist Management, EMI Music; and Jack Schneider, managing director of Allen & Co.. Kempner and Mann are both fathers of autistic children.

It’s been noted (by Lisa Jo Rudy at About.com) that the new board members include no one who’s autistic. With the rise of self-advocacy organizations like ASAN, and also GRASP and many others, the absence of an autistic member on Autism Speaks’ board seems more and more puzzling. The Interagency Autism Coordinating Committee lists Stephen Shore, a self-advocate, on its roster, and Paula Durbin-Westby, a member of ASAN, was asked to present at the November 21st IACC meeting (and you can view her presentation here). The Autism Society of America has a panel of people on the spectrum of autism advisors; Shore is also on the ASA’s board as is Valerie Paradiz. And ought not most or all autism organizations have an autistic individual on their boards?

On October 12, while presiding as the honorary chair for an Autism Speaks walk on the campus of Ohio State University, President Gordon Gee made remarks including the statement that “‘It [autism] should not exist.’” Melanie Yergeau, a 2nd-year Ph.D. student in English, wrote this letter, which is posted on the Autistic Self-Advocacy Network blog. As Yergeau, who notes that she has Asperger’s Syndrome, writes:

Until very recently, I have felt incredibly welcome at Ohio State—due to the interdisciplinary work of the Disability Studies Program and the Department of English, the Office of Disability Services, and the programs for high-functioning/Asperger’s adults at the Nisonger Center. I would urge you, as you continue in your autism advocacy, to consider what cure means to autistic individuals themselves, to familiarize yourself with organizations that actually appoint autistic individuals to their executive boards (e.g., the Autistic Self-Advocacy Network, or the Global and Regional Asperger Syndrome Partnership). In this regard, I find it important to note that none of the leadership or board positions of Autism Speaks are occupied by autistics: Autism Speaks speaks about autistics rather than for or with autistics.

As I read articles and listen to reports of the rally from my saddened autistic friends, I’ve noticed a trend in representation at Autism Speaks rallies like the one on October 12, 2008: autistics themselves have no voice. Any conversation that determines the fate of autism, I would argue, must consider the opinions, voices (however literally or metaphorically), and experiences of those on the autism spectrum. Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.

Read the rest of Yergeau’s thought-provoking letter.

I’ve become rather obsessed with exercise—-no, I’ve not become a calorie counting fiend tracking the minutes on the treadmill. It’s making sure that there’s enough physical activity integrated throughout Charlie’s day in general and at school in particular that have preoccupied my thoughts. I’ve noted that the very layout and physical space of his middle school classroom are very different from the windowed, light-filled classroom of his elementary school last year; the fluorescent lights just seems to buzz and glow more harshly.

Charlie has gym every morning around 9.30am. He has a locker now and has to change into and out of his gym clothes. The adapted physical education (APE) teacher has put together a very fine schedule of activities including soccer, yoga, volleyball, aerobics, and (though not skateboarding, as at this school), golf. (And Charlie got a hole in one the other day, his teacher noted to me.) One doesn’t want to ask for too much but, well, gym at 9.30am means that the boys in Charlie’s room get in their workout first thing in the morning and then….that’s it.

Because, there’s no recess in middle school.

And, there’s no playground in middle school.

And you’ve four growing boys who’s always had a need for jumping, fidgeting, being in motion, and can’t always tell you that’s what they need. In their elementary school, they had scooters to ride and someone left behind a bike that fit Charlie perfectly; he used to ride it around the school with an instructor running after him (and enjoying every moment of it—-Charlie’s not the only one who relishes getting outside the classroom). Charlie’s in a self-contained autism classroom with the same three boys he’s been with for two years and with a teacher who’s thoroughly up on their learning styles, past histories, communication needs. But it’s middle school, with expectations of being “more mature,” rules and dictates for discipline—-walky-talky bearing administrators roam the halls, not students—-and the difference from the sun-lit corridors of Charlie’s old elementary school, with PTA parents bustling around with plates of cookies, are palpable.

Charlie’s teacher, recognizing the need of all the kids to be in motion, is wondering about getting access to a treadmill and/or exercise bike. For Charlie in particular—as noted, he’s the biggest kid in the class (and the youngest) with long arms and lanky legs to throw around—-Jim suggested that he get a chance to be in motion as much as possible, and Charlie’s teacher has been having Charlie get out of the room and walk. Since it’s gotten cooler, most of this walking has been in the hallways. Fortunately, it’s a big middle school with over a thousand students (which in itself must be something for Charlie to get used to—-being in a building with over a thousand other kids his age, not including numerous teachers, administrators, support staff………).

After some of “those sort of days” in October when I start reading Wrightslaw (obsessively, yes), and after a lot of discussion and some reaccessments on everyone’s part (teachers and Jim and me too) about how to change our approach to teaching Charlie, he’s had some solid days. He’s still adjusting to the middle school schedule: School is over at 2.30, but Charlie is usually “done” an hour earlier, and his teacher has been moving around his activities, trying new teaching methods, making suggestions to us and listening to our suggestions.

Just hoping we can keep doing the same as the year unfolds and that we can remember, staying in motion—-that’s the key. And there’s a lot of hope in the air here right now, and I think we’re going to take that and run with it.

Try as we might, we couldn’t figure out a Halloween costume for Charlie. I found the captain’s hat that was part of last year’s costume (he was, yes, a captain) and Charlie took it off as soon as I placed it on his head. He’s never been too interested in dressing up for Halloween and has usually needed a big of coaxing to trick or treat: Charlie’s wary of walking up strange new walkways; once, a small dog appeared and started barking really loudly just as the door was slowly being opened. Charlie turned and raced back down the walkway and no promise of candy would draw him back, and he’s remained wary about walking into houses he’s never been into (not a bad thing, in and of itself).

Charlie’s class had a little Halloween party with cupcakes and (for those who wanted to dress up) costumes. And instead of going through the whole trick or treat thing, Charlie and I found ourselves heading to Jersey City in the late afternoon, with the plan of parking the car at my office, walking to the getting a new Leapster, Charlie’s been wanting to carry both it and his old one around. They’re a bit awkward to hold and just as I was going to offer to carry them in my bag, Charlie somehow managed to shove both Leapsters into the front pocket of is blue hooded sweatshirt. We proceeded down Kennedy Boulevard, which is a major thoroughfare in Jersey City. Both sides are lined with brick apartment buildings, again woodframe houses, storefronts, and there’s always a steady stream of fast moving traffic. As you get closer to Journal Square, i’s all storefrontss—Goodwill, dollar store, a restaurant adversing a very cheap breakfast as noted by a hand-written sign, a Payless shoe store—-and a Methodist church in front of which people hang out around at all times of the day, a shopping cart packed with plastic bags nearby.

Charlie likes to alternate racing ahead of me with shuffling beside me. Despite the roar of the traffic, he’s very good about following requests to stop, wait, wait up. Usually there’s not a lot of people out walking in the evening but Friday night, the closer we got to Journal Square, the more groups there were of children clad as superheroes, Sponge Bob, princesses, witches, with their mothers pushing younger siblings in strollers and speaking in Spanish or Arabic. Everyone had plastic pumpkins to hold the candy. They weren’t so much ringing doorbells as walking into stores, which apparently, besides selling mattresses or women’s clothing or sneakers, were carrying on an Amrerican childhood tradition.

Charlie and I moved among the trick or treaters. Many of the children’s costumes were completely obscured under winter coats and there were a few crying children, reaching for their plastic pumpkins and “just one more” piece of candy. We crossed Kennedy Boulevard and took the PATH into Manhattan, and then the B train up to where Jim’s office is. We got some take-out of Charlie’s favorites and brought it to Jim’s office where Charlie got to dine on Dad’s desk. Going home, we saw a far greater variety of costumes than one generally sees in a New Jersey suburb. There was a gorilla football player, a mug of beer (complete with foam), a team of Ghostbusters. a couple of accident scene victims……

Charlie kept his hood pulled tight over his ears and those two Leapsters in his front pocket, in his usual way; I’m almost starting to think that blue hooded sweatshirt if a bit of a uniform, comforting in its sameness. Who needs a costume when you know you’re guaranteed the good treat of a night out in good company?

Brooke Dickerson’s 19-year-old so, Quinn Carey, has attended 10 different schools, yesterday’s Santa Cruz Sentinel reports. Diagnosed with autism as a young child, Quinn has not been able “to receive the consistent care that is needed to develop the skills he is lacking.” His mother notes that his physical size has been a factor:

Now fully grown at 6 feet tall and about 300 pounds, Quinn is more than a handful. The family has taken him to schools in Morgan Hill, San Jose and Palo Alto, but the schools shut down or turned Quinn away because of his size.

“It’s nuts because he’s entitled to appropriate education,” Dickerson said. “He is denied treatment here because of his size and then he is denied over the hill because he is from Santa Cruz. We grew up in Santa Cruz, Quinn loves the ocean and there is nothing here for us.

My son’s grown tall—taller than me, and he’s 11 1/2 years old—and this fact has (not always for the better) changed how people respond to him. So far there’s been a place for Charlie in a public school autism classroom; reading about Quinn Carey’s experience, makes me pause.

Some years ago, when we were trying to find a new school placement for Charlie,I visited a large “center” for children with many disabilities, autism included. I was shown a room that would be for children Charlie’s age: Most of the children were working at their desks one-on-one with instructors. And in one corner was a child—he must have been as old as Charlie is now—he wore a helmet and a loose t-shirt and baggy sweats and he was standing on a gym mat. His arms were out and tension and fight were in his body; at least two instructors were standing, arms out and ready to grab or whatever, him, and to block him from running away from the little padded area he was being fenced in. As we left the room, the woman who was showing me the school wiped tears from her eyes.

(No, Charlie did not attend that school.)

Charlie was really struggling—really—in those days. He’d been restrained too too many times and the result was that his “behavior problems” multiplied. Since then, slowly, with lots of back-stepping and revising of plans and gritting of teeth, we’ve tried to figure out how to help him calm down from really anxious moments while staying safe. There are ways to help a very upset child that are not overly physical; there is a need to better educate about such methods.

And certainly there’s an unspoken need to teach every autistic individual—every one; to really teach them.

Remember the Got Autism?” that PETA put up in downtown Newark, New Jersey? The billboard that was subsequently taken down by the ad agency hosting it?

Well, it’s traveled West, to St. Louis, Missouri. From a PETA press release today:

In light of two scientific studies that link milk consumption to autism in children, PETA will be displaying a new billboard parodying a ubiquitous milk ad. The ad shows a bowl of milk and cereal next to the tagline “Has Your Child Got Autism? Learn About the Link Between Autism and Dairy Products at PETA.org.”

The bad news is that data from a study by the Centers for Disease Control and Prevention show that metropolitan St. Louis’ rate of 7.3 cases of autism per 1,000 8-year-old children is one of the highest among the 14 areas studied.

Just for a comparison, PETA said this about why it put the first billboard up in Newark:

*The Newark area had the highest rates of autism occurrence among 14 states studied in one report.

Wonder if PETA has plans to put up billboards in the other 12 states……..

A three-year-old autistic boy died after being strangled by his seatbelt on a schoolbus this past Sunday, the Jerusalem Post reports. An aide has been arrested:

During a police investigation into the incident, the boy’s mother said that she realized he was unconscious when she boarded the school bus to help him off after it arrived at her house.

Police later began to suspect that the incident was a result of the boy being improperly secured into his seat, a suspicion that led to the arrest of his aide

Many, many thoughts with the boy’s family. Many.

Do we really need a “crusade against autism”?  Autism Speaks co-founder Bob Wright, grandfather of an autistic child, spoke of just such a “crusade” in the inaugural Annual TreeHouse Lecture. Dr. Michael Fitzpatrick (who’s the parent of an autistic child) writes about how such a “crusade” does more harm than good in the October 29th Spiked. Here’s his conclusion:

Many families affected by autism welcome the higher public profile of autism, as reflected in the US election campaign. If this leads to greater resources to enable children with autism to get appropriate schooling and for affected families to get the support that they need, then that will be progress. If, however, resources are diverted into the pursuit of phantom environmental causes – such as vaccines – or the promotion of quack treatments or fad therapies, this is likely to have damaging consequences for all concerned. What we need is not a crusade but to move beyond discourses of blame based on irrational views about autism.

“To move beyond discourses of blame based on irrational views about autism”—-I can’t agree more. I’ll go a step further and suggest that we need to move beyond discourses of blame, period. Of parents and mothers in particular being blame for causing their children to become autistic due to being emotionally withdrawn, “refrigerator parents. Of endless efforts to pin this or that “environmental agent” as The Cause of Autism.” Of blaming vaccines or something in vaccines and then blaming doctors, scientists, and science itself.

I think—my husband Jim and I think—-that our son Charlie is autistic because he’s our son. We love him beyond what words can say and consider ourselves lucky to spend every day with him. I’m with Virginia Bovell, whose 15 year old son Danny is autistic and who says in an interview with the Daily Mail:

There are many things I find uncomfortable about the notion of ‘curing’ autism.

To cure my amazing son Danny would be to suggest that there is something dreadfully wrong with him, perhaps even something we, as parents, couldn’t live with - but nothing could be further from the truth.

If someone took away Danny’s autism, it would also take away so much of who he is. And I am certain that many parents of autistic children would agree, because how can I ever tire of watching my son’s face light up with joy as he kicks leaves in the park on his way to school?

To me, the notion of “curing autism” misses the point about what autism is (a lifelong disability). It’s not a helpful notion in my daily efforts to help my son: If one keeps thinking that there’s some “magic pill” for autism out there, and that one just has to find that elixir to make it all right, one’s determination and devotion are unquestionable. And because of that determination and devotion—-because, if you will, of love—it’s natural to want that magic pill. But autism and Charlie, and Charlie and autism: These are intertwined entities. Again quoting Bovell:

My son doesn’t have a ‘disease’. He is unique, special and happy. So why do I need to cure him?

Like “vaccines,” “cure” is one of those topics that come up in relation to autism, but that shift the focus too much away from helping autistic children and adults here, today, and now. Crusading against autism has a grandiloquent sound, but what I’m in search of is so much mundane reality. A job, a place to call home, other needs—of food, clothing, drink—all met at least adequately and, preferably, very well—these are real things that real individuals will need. Rather than mourning that a child did not get started in Early Intervention “early enough” (a point that Wright raises regarding his grandson in his TreeHouse Lecture), what about starting wherever a child is at and building an individualized education and individualized services—building a good life—around them?

It can be a huge and absorbing task to figure out how to do this. While it can seem scary to think about the future, for myself, the fear is more manageable when I look into things and deal with what’s in front of me—-this would be many more days of us walking the long road with Charlie, every step of the way.

Heralding an October 22nd lecture entitled “Are we ambitious enough about autism?” to be delivered by Autism Speaks co-found Bob Wright at the Treehouse charity in the UK Telegraph asks “Should we want to cure autism?”

After raising my son Charlie for these past 11 years, my answer is that (in the words of a friend) curing autism is “neither possible nor desirable.” Autism is lifelong; it’s neither something that you catch or that you can be cured from, and focusing too much on trying to cure autism can distract from the pressing realities of teaching, supporting, taking care of, and being with people who are autistic. As I wrote in a March 2007 post, Acceptance vs. Cure:

Is autism a difference, a manifestation of human diversity and variation—-or is it autism a disease that one “suffers” from? Is autism something that has always been with us, or is something completely new?

The Telegraph article quotes Treehouse founder Virginia Bovill, who is

….currently studying for a DPhil on whether the quest to prevent and cure autism is morally justified. “Where would prevention lead - to ante-natal testing and abortion?” she asks. “The thought of a world without all the people I have met with autism is not a world I would want to live in. I would rather people said: ‘They are here, autism is here - how can we help these children fulfil their potential; how can we support their parents?’”

“‘They are here, autism is here’”: I just had to reiterate that.