Legislation to provide for insurance coverage for autism treatment has been introduced, and even passed, in many states including my own state of New Jersey; here’s a number of previous posts on this topic. An Associated Press article quotes J.P. Wieske, a lobbyist for an insurance coalition, as saying that “‘This is the hottest trend in mandates we’ve seen in a long time…..It’s hard to fight them.’”

Notable in the Associated Press is mention of families with older children—-11, 12 (same age as my son) who are using ABA therapy. It’s noted that, while there are studies arguing for the benefits of ABA therapy in younger children, research supporting its efficacy for older children are “sparse.”

Some states require behavior therapy coverage up to age 18 or 21. But the scientific evidence for ABA is strongest for the youngest, ages 2 to 5. Some researchers have reported on individual children with autism who no longer appeared disabled when they reached school age.

The most rigorous studies, though, show mixed results. A study published in 2000 showed that preschoolers who got intensive behavior therapy had greater gains in IQ than children who didn’t get the therapy. But there was little difference in the two group’s language development or the intensity of behavior problems. And the children most severely affected by autism showed no comparative gain.

Another study in preschoolers, published in 2005, showed little difference between an intensive ABA-based program run by therapists and less-intensive therapy from parents; children in both groups improved.

When it comes to older children, the research is sparse, said Tristram Smith of the University of Rochester Medical Center in New York, who co-authored the 2000 autism study.

“You could make a decent case for the little kids up to 6 or 7 that (insurance mandates) would be appropriate,” Smith said. “I think it would be hard to make that case for older kids.”

Psychology professor Laura Schreibman of the University of California at San Diego also raises the problem of “‘fly-by-night’ behavior therapists could defraud insurers with ineffective therapy.”

The same questions remain: Are educational treatments like ABA better provided by public schools or private insurers, or by a mix of both? And, how to autistic teenagers and, too, adults—my son is always learning, and I know there’s no deadline for when we stop teaching him.

Back in the summer, I noted that Charlie had discovered the wonders of YouTube, when he and I found that a number of the Barney videos he used to watch, ask to see a thousand times over, and get so upset and over-stimulated over that he’d knock his head on the floor when we turned one on—-that many of these could be found posted on YouTube. For the past two months, he’s been typing in “Barney” and “school” or “good day good night” and sitting on his knees to watch the old familiar scenes. It was in mid-September that he discovered “Let’s Play School” and that’s been the main one he watched, as I realized just how deeply I have indeed memorized many a Barney song (”butterfly, butterfly, fly fly away”…..).

There seemed to be an endless pick of Barney videos and especially of older ones that featured simple sets and—in one video—–parents, besides the purple dinosaur. Charlie typed and watched; Jim proclaimed that he was on a nostalgia kick. Unlike when he was younger, Charlie understood about turning off the videos. He wanted to see them, but he could let go when he had to. Sometimes he asked a lot to see the videos, and other times, not so much, if at all. And then, this past week, when he asked to see a particular song, type in whatever combination of “Barney” and other words, nothing came up, aside from endless clips of the “I Love You” song.

I found the URL—saved in Firefox—of one video and got to a page informing me that a video’d been removed from YouTube for copyright reasons. And that’s what I told Charlie whe he asked to see a video.

He was wistful, asked to see the videos again, heard the “I Love You” clips a couple of times. He shut the lid of the computer, got up, and moved on.

I’d been—-the panic of mothers—-worried that we’d be stuck in eternal Barney-mode once again. I suspect Charlie would like to see those certain videos if he could; I see that he had walk away when what he wants is not available, and there’s no especial big fuss.

Friday night Charlie and I took the train into lower Manhattan to meet Jim for dinner. Charlie likes to walk in front of us, and he stops when we call out “stop” and “wait for us” and “red light.” He peered into every storefront, pausing sometimes in front of the ones with cases of sodas. He sometimes looked hopefully at the door and then quickened his step when we told him to keep going.

Always so much to see and do out in the big wide world, and it’s always best when it’s the three of us, especially when Charlie leads the way.

I signed Charlie up for a special needs kids bowling league every Wednesday. It’s at the same bowling alley we’ve been going to all summer and with many of the same kids. Yesterday Charlie bowled a few, poked a finger in some ketchup on a plate of French fries, and sat with his head against his elbows. “No bowling,” he told me, and let that be known in a louder way. He sat, I bowled a round (why not), and after I’d told him he only had to bowl two more times and we’d head for the car, Charlie stood up, picked up a neon orange ball, and rolled it with such force that nine pins came down. He barely pushed the ball the second time so the spare remained, and, as promised, it was to the car.

I’d sensed something edgy in the set of Charlie’s features since he’d come home, and something was very different Wednesday. Jim had left Tuesday night for Los Angeles, to lecture here. Just as Charlie got onto the bus Wednesday morning, Charlie had looked over his shoulder and his eyes paused over where Jim usually stands.

I’d have been more worried over Jim being gone if Charlie were not so happily settled in school. With his day now starting with the bus pulling up as early as 7.20am, he’s off from the time he wakes up pretty much until almost 3pm, and school offers zero dull moments. This all keeps Charlie busy and his mind at work; bowling has a much slower pace and I wondered if too many thoughts came crowding in and he wondered why in the world he was to pick up a heavy ball and roll it towards a line-up of cylindrical objects…….

Charlie’s been in school full-time since he was four years old and in a special ed preschool program in a public school district somewhere else in New Jersey than where we live now. That particular school district was located far from both my and Jim’s jobs; we had chosen it because we’d found out that it had a well-established program for autistic children and, since it was a public school, all we had to do was to live in the district for Charlie to be in it.

Finding a school for Charlie had been our chief concern throughout the year and a half that he was in a home ABA therapy-educational program. We just did not picture him learning at a table in his bedroom forever; we also sensed (though we still had not really digested this at that time) that Charlie was going to need a lot more specialized teaching. Charlie’s lived in eight different places; the main reason that we’ve kept moving is to find him the right school.

Christine Gralow’s The Special Needs Kindergarten Crunch in the September 22nd New York Times Lesson Plans blog really struck a note in me. Gralow writes specifically of her the extra obstacles thrown at parents of autistic and special needs kids in New York, where competition to get into kindergarten (and preschool) is fierce for any child:

Last weekend, I had a long conversation with one mom who is already very worried about finding a placement for her child, who has an autism spectrum disorder. Like many Manhattan parents, she’s already calculating what connections she might be able to use and what strings she might be able to pull. She is considering the possibility of either mainstreaming him with some level of special-education support or enrolling him in one of the city’s private, special-needs schools (for which admissions competition is also very tough). It’s frustrating that she has to begin making the call at this point in the pre-K school year, when it’s far too early to tell which kindergarten option will be best for her son. But since many kindergartens have pre-Thanksgiving application deadlines, she has to begin the process now.

I wish I could tell her not to worry, that everything will be O.K. But I can’t. I’ve seen parents of children with autism go through particularly trying battles with school directors and the city’s Department of Education (D.O.E.) officials, often without a good result.

Gralow describes the intense efforts of the parents of David, an autistic preschool student, to get him into a kindergarten program appropriate for his level of needs. After a lot of back and forth (some of it quite bafflinf David’s family ends up moving out of the city; he’s currently attending first grade and doing well.

Moving households is a major undertaking and it’s not every family who has the resources to do this, and do it quickly. We lived with my in-laws for a year when Charlie started the school program he’s currently in, partially because doing so was a matter of moving our beds and suitcases into their basement, without having to find a place to live and going through the whole rigamarole of renting or buying. Plus, Charlie was already familiar with the house and was comfortable being there (I wasn’t, and it was not easy on Jim; that’s a longer story). I still feel more than a little amazed that Charlie ended up liking the school program so much, and liking school so very, very much. A friend pointed out to me that “school is what kids do,” just like adults work and small wonder that Charlie was so unhappy when he was a school placement that was very, clearly wrong for him.

Wednesday after bowling, we stopped for gas and a cold drink on the way home. I mentioned swimming and Charlie eagerly put on his swimsuit. I did several laps while he bobbed in and out of the water, swam on his back, did a few laps himself. He found some frozen eggrolls in the freezer and heated them up for himself in the microwave and gobbled up a bowl of freshly cooked rice. He wanted to see Barney on YouTube so I set up my laptop for him. “Yes, yes!” Charlie pointed to a video of Barney’s Let’s Play School: It was in five segments and he watched the first four, wrapped in his pale yellow fleece blanket, on this chair flattened into a sort of couch; I prepared a class on the meters of Latin poetry and read A Friend Like Henry by Nuala Gardner. Finding services and a classroom (and a proper diagnosis of autism) was the subject of much of the early chapters, along with the arrival of Henry, a Golden Retriever whom Dale, Gardner’s son, connects with from the first moment.

(Yes, for about a millisecond, I wondered what it would be like for Charlie to have a dog as a constant companion and friend—that’s how effective Gardner’s account of Dale and Henry is.)

By the fifth segment of Let’s Play School, Charlie told me he wanted “bedtime” and shut the lid of my laptop. He padded down the hall to his room, plunked himself on his bed with eyes already shut, and was asleep momentarily.

Another big day tomorrow.

An autistic man, Karl Tilcock, who also has two autistic children, lost his job at Foster’s brewer in Queensland (Australia) over YouTube videos made under the name AustDingo that offended his employer. The September 8th News.com.au describes Tilcock as an “online comedian” and notes that he has removed the offensive videos when contacted via letter by his employer. It’s contested whether the videos presented “untruths” about Foster’s and whether they were made while Tilcock was at work:

[Tilcock] denied any of the videos communicated untruths or were produced on his employer’s time.

“They never argued the facts on me, just that it didn’t make the company look good.

“I’ve had to fight a lot more (because of the autism) and take time off to care for my family and the company didn’t like it,” he said.

“I did my job.”

A Foster’s spokeswoman said Mr Tilcock was warned repeatedly about making videos in violation of company policy, and the backdrop of some videos showed he was at work when he produced them.

“We re-explained the rules to him after the initial warning,” she said.

“He was making disparaging remarks and defaming the company.”

Mr Tilcock admitted making a video ridiculing a manager.

“I’m struggling. It’s hard at the moment,” he said. “I think it’s gone past the point of getting my job back.”

Am also concerned about how Tilcock’s family and his autistic children are doing, without their father having a job?

Some software and other updates have been going on behind the scenes here, so if this blog loads slowly or (alas and argh) a comment does not go through, please bear with us. Over in the sidebar, the lists of comments and recent posts have not been updating (Learning All the Time (Whether You Know It Or Not) was posted on Friday morning) and I’m hoping that will get fixed soon. In the meantime, I wanted to point out discussions about the YouTube video of an autistic teenager getting beat up—about how autism, unlike measles, is not an infectious disease—–about the luxury of being able to choose to vaccinate or not—-whether hacker Gary McKinnon is a scapegoat or a public enemy.

Also: Tara on an idea for housing for disabled adults in New Jersey on Sued: New Jersey’s Department of Human Services.

And here’s what’s been under discussion here for the past two weeks:

• Gluten-free more and more common (and not just for autism)
  If everyone’s doing it, is “the diet” really a treatment for autism?
• Another Test to Detect Autism Earlier
  University of Missouri-Columbia are studying how to use 3-D imaging to analyze the facial structures and brain abnormalities of autistic children.
• Minnesota Has the Highest Autism Rate?: Depends on How You Count It
  An article in the August 20th CityPages in Minnesota suggests that it’s rather the North Star state that has the highest rate, 1 in 81. The article relies on a chart made up from data from public school districts around the country.
• The Autistic/Has Autism Question
  Dan Olmsted “really can’t stand” it when the “people with autism” are referred to as “autistics,” and he sees the word as a “corollary of ‘retards’.” Hmmmm…….
• Measles Cases, and Fear of Autism, on the Rise
  Measles cases are at their highest level in a decade, and is looming dread of autism at least partially responsible for this?
• The Parental Right to Choose to Vaccinate, Or Not
  A story from MSNBC provides some details about the attitudes of parents who’ve chosen not to vaccinate their children for their “philosophical or religious beliefs.”.
• The Right to Choose, So Choose Carefully
  If the word keeps getting out that there’s some (scientifically disputed) link between measles and autism, and vaccination rates continue to fall, and autism rates stay the same or rise, and measles really really returns—-will those who’ve invested so much energy to promote a vaccine-autism link be willing to be responsible for the consequences of their efforts?
• Measles You Can Catch (But Not Autism)
  “People have forgotten what measles looks like and have forgotten how infectious it is.”—Jane Seward, deputy director of the division of viral diseases at the CDC
• Monday at the Dentist
  A super great visit to the dentist for Charlie!
• A Note On Hillary Clinton’s Speech
  Said the Senator in her speech to the DNC: “I will always remember the single mom who had adopted two kids with autism. She didn’t have any health insurance, and she discovered she had cancer. But she greeted me with her bald head, painted with my name on it, and asked me to fight for health care for her and her children.”
• The Luxury of Choice
  Writes Matthew N. Parker, M.D.: “Perhaps it is yet another symptom of our wealth in this country that we have the luxury of wondering whether it is necessary to vaccinate.”
• Unlike Measles, Autism is Not a Potentially Fatal Disease
  Measles is an infectious disease; autism is not.
• False Prophets and Failed Poets
  The “false prophets” of autism are, it would seem, such figures as Dr. Andrew Wakefield, the doctor at the center of the controversy over the MMR vaccine and autism, and numerous others who have proclaimed that vaccines or something in vaccines is behind the epidemic rise in autism diagnoses, and who’ve given short shrift to arguments for how better diagnosis, understanding and awareness of autism have contributed to a rise in the prevalence of autism.

This past June, a 16-year-old with autism is punched in the face and bullied by a teenager who attends the same high school—-and the whole attack is videotaped and posted on YouTube. The 16-year-old’s family saw the video and was able to identify the attacked. WSBT (South Bend, Indiana) interviewed Joyce Vermillion and Amber Fairchild, the mother and sister of the boy who was attacked:

“First it was bad enough that they did it. Then they videotaped it. Then they made it into a joke. They did it in slow motion and they replayed it frame by frame,” Fairchild said. “It hurts my feelings so bad, it hurts my heart.”

The family says the boy’s face was swollen after the attack, but since then he has been doing well.

The video helped the family identify his attacker, who attends the same high school.

Mishawaka police said the police report was filed Tuesday and officers are on the case.

The telltale video is no longer on YouTube; Fairchild was able to download it.

And you really have to wonder, what were the teenagers who did the bullying it thinking. Or not.

I mean, what do you expect? We spend two whole weeks in a house with a lovely big open room one block from the ocean (and are able to piggyback on someone’s internet server so Charlie is able to discover the pleasures and perils of YouTube) and (after a very anxious start) fall into a fine routine of late morning and late afternoon ocean swims, punctuated by plenty of beach food (i.e., seafood and fries, though Charlie was not too interested in the latter—a first—but wanted sushi again and again; good thing it’s become a fixture at the Jersey shore along with the crabcakes). We overpacked, meaning that all that I should have packed was three shirts, one pair of shorts, and three swimsuits for Charlie (because he rotated wearing those few items).

A few years ago, Charlie spent the last three days of vacation shouting “No Gong Gong no PoPo” over and over and over. Gong Gong and PoPo are Cantonese for “maternal grandfather” and “maternal grandmother” and are what Charlie calls my parents; he’s extremely fond of them, but had equated their arrival with leaving the beach house, and so shouted himself hoarse. Another year he hid his favorite toys, a stuffed Barney and a toy computer, Alphabert, in a closet and told us “no Barney, no Alphabert” when we asked Charlie where these were. Jim thought to look in a closet and found both toys and we realized the Charlie was hoping that if his favorite toys could not be found, we’d never have to leave.

This year, we made sure that Charlie knew that Saturday would be the last day by talking about it and showing Charlie a calendar on his computer. But the reality of the last day only hit Charlie when he came down the stairs Saturday moring and saw the bags and laundry hampers packed. He insisted on leaving a red boogie board (which was scraped and banged up) at the beachhouse.

Jim and I have a hard time leaving ourselves and, rather than sit on the Garden State Parkway in bumper to bumper traffic with everyone else trying to get home on Saturday afternoon, we’ve often gotten in one last afternoon at the beach with a long walk out on a rock jetty. Charlie took the lead on the walk, moving from one big boulder (some with some big gaps between them) with steady ease, only occasionally pausing and taking Jim’s hand to step over a particularly large distance between rocks. As I watched him, my mind was filled with images of 5-year-old Charlie in his little blue Teva sandals gripping Jim’s hand and sometimes needing to be carried; I recalled our worry about Charlie slipping and falling and here he was, at 11, moving like a billy goat over a rocky mountain.

On the walk back (after one last swim) Charlie remembered that we were, after all, leaving, and started calling out for the beach house and the red boogie board. As we drove away over the bridge, he looked back, saw that his view was blocked with the big yewllow boogie board and a beach chair, and started pushing everything and crying (and somehow the car’s tailgate got loosened and we had to make an emergency stop). The Parkway was not too busy so we got on and he cried, cried, and cried, and a couple of times there were some extra vibrations throughout the car. We suggested taking deep breaths, Charlie wrapped himself in a fleece blanket and called for the beach house, and Jim got off the Parkway and onto a local road which brought us to a gas station offering gas for $3.39 a gallon and Charlie started looking around and stopped crying.

We continued a more gradual transition by visiting a boardwalk where Jim and Charlie rode the swings and a whale-size version of  the Frog Hopper and then Charlie had rice and shrimp and poked at some coleslaw at a picnic table while people fished nearby. We got back on the Parkway and all was peaceful until we were ten minutes from home and Charlie started shouting out his anxiety, again and again calling “beach house!”

And I told him I was glad he was doing this. The memory of a boy unable to express himself and speak is ever fresh. Charlie doesn’t have too many words, and not enough to explain what must be complicated feelings about going to and leaving a place he loves as much as the ocean. But he’s trying and the results are imprecise and not enough, but every year there’s more he can tell us, in his speech and in other ways. With every visit to the beach, Charlie shows how he’s grown over the year.

When we got home, the trunk of the black car (a stationwagon) was stuck and Jim had to lower the back seat and pull everything out. He left the big yellow boogie board and beach chair by the car as he hauled everything else in. At first Charlie ran straight to his bedroom, asked for his yellow blanket, and howled for ten minutes—-then got up, went outside, and carried the boogie board and beach chair inside. When I put the board in the kitchen to get it out of the way in the living room, Charlie set it in the hallway, not far from his bedroom door. Then he poked in the (very empty) refrigerator, told us “good night” and went to bed peacefully, his toy Leapster (which he’d been carrying everywhere while at the beach) beside his pillow.

A rocky voyage home, yes, but I think we’ve come back safely to harbor.

Two weeks ago, we went back to the beach house. At first Charlie was not happy to be there. But the third day was the charm and we had some interesting meetings. Charlie discovered YouTube and its cache of Barney videos (especially the really old ones, which he seems to prefer). He got very upset after a fun visit with friends. He swam worthy of an Olympian. He worked on the concept of “swimming flag to flag” and ate his share of ketchup. He had a super surfing lesson.

And on the last day, we (i.e., Jim and Charlie) went kayaking in the bay.

Change of scenery, change of routine—-that’s all part of vacation and, as recounted here, why Charlie’s first three days at the beach house were full of more sorrow than smiles. We’re back in the swim (big-time—-Jim’s been calling Charlie “the torpedo” for the way he propels himself through the water, in the moving waves and all).

We came down here with a minimum of “stuff”; just enough clothes (mostly swimsuits, of course!) and beach towels; laptops (Jim is in the final, final stages of finishing his book and I am trying to dig into mine); a few books (wish I could say “a nice stack,” but going to the beach with Charlie means being as active as him; no relaxing in a beach chair with something cold to drink and “summer reading”); random necessities (my coffee maker). I brought Charlie’s laptop, too, though his interest in it—doing jigsaws, listening to music and looking at photos—fluctuates and is generally not too great. I was able to get his laptop connected to the internet and first showed him some YouTube videos of the Wiggles, as he requested. I got up and when I looked over, Charlie was clicking away. And then I heard a certain familiar theme song and that voice that can never be forgotten……………

Yes, the purple dinosaur.

Charlie had clicked his way to what’s probably an infinite trove of Barney videos on YouTube. He found all of his old favorites, all from the videos that were long since consigned to the garbage because, when Charlie was 7 and I turned them on for him, he watched for a few seconds and head-banged on the hardwood floor.

So there he was, stretched out on the beach house couch, with “Shapes and Colors” and “The Treasure of Rainbow Beard” playing; he occasionally put his hands over his ears. He still needed some help with the mouse and, perhaps in his eagerness to watch The Purple One, had twelve tabs opened to different YouTube videos at once. I restarted Firefox on the laptop and Charlie clicked the videos on.

And amid all that talk about triangles and dancing in a circle and the green growing round and the banjo music, and Charlie intently working the mouse, I felt a very super big huge warm sigh well up inside of me.

I’ve not been surprised that Charlie’s been calling for home and so uncertain about vacation, although it’s a very familiar vacation, in the same beach house that we’ve rented for a couple of years and at the same time of year, and with the same families renting houses on the same street. He likes his regular routine that centers around school, because he likes school, and packing up the car and going somewhere else may suggest to him that we’re not going back.

We went to a take-out place for dinner and Charlie insisted that we sit down instead of taking the food home. Every picnic table was filled and Charlie stood close by one table and then another while I beckoned him to stand with me. We went into the building; Jim was just getting our food. The tables were all still full and Charlie still wanted to sit at one, so we waited—-after a few minutes, Jim noticed a family standing up and I edged myself over.

As we sat down, I realized that there was another family—-two parents and their sons—at the other end of the table. Who knows but we were barging into their space. Charlie sat down and reached for his ketchup. Every other table was taken and more people were standing around with strollers and six packs. Charlie ate some and asked to get up and—unusual for him—only ate a few more bites of his burger after we were back at the beach house, with my coaxing.

It’s not easy asking for a place at a table—-hence the title of a collection of stories of growing up, of being different, Can I Sit with You?, edited by Shannon Des Roches Rosa (she blogs at Squidalicious) and Jennifer Byde Myers of into the woods, living deliberately).You can buy the book here and submit yours own writing for a second version here. From the mission statement:

Dealing with the other kids at school was complicated even if you didn’t have a label. For those of us who were socially awkward, culturally juxtaposed, same-sex attracted, gender-cocooned, income-challenged, “weird” sibling-saddled, differently abled, atypical looking, religiously isolated, on the autism spectrum, or who somehow just didn’t fit in, it could be brutal. Even though most of us eventually developed coping strategies, grew up, left school behind, and tried not to think about how much that time in our life sucked.

Until some of us starting having our own kids. And saw those kids start to flounder, saw them start fretting about how to fit in. Aiigh! What to do?

What to do is write and tell the story. I think. Jim and I have often thought that our own experiences of growing up and being different have truly helped us in raising Charlie and facing and identifying his challenges. I remember a friend whose son has Asperger’s telling me that, when he’d sit at a table in the school cafeteria, everyone else would get up and leave. What does that do to a growing child’s understanding of the world?

Saturday night, Charlie planted himself on a couch after eating a few bites of burger and carefully arranged the favorite things he’d brought with him nearby: Two copies of Goodnight Moon, his Leapster, his blue backpack with the photo bucket (he kept calling for his lunchbox; it’s at home in the fridge); two fleece blankets. He didn’t want to go up the stairs to his bed (the same one he’s slept in the three previous times we’ve been at this beach house); he took himself up with a cry and I followed with all of his stuff.

I found him curled up in the yellow fleece blanket and asking to see Wiggles videos. I recently got myself an iPhone and ran downstairs for it, and found Charlie several Wiggles videos—all the old favorites, “Hot Potato,” “Point Your Finger and Do the Twist,” and the one about riding in the big red car. At first I wondered if Charlie could see the videos on the small screen, but he was quite absorbed watching and I wished him good night with the promise that we’d watch more tomorrow.

And any day, sitting side by side, together.