Autism Corps: Adult Autistics Join Us, Terri Mauro Supports Us

Jen and I are so pleased to announce that adults autistics Rachel Cohen-Rottenberg and Lindsey Nebeker have agreed to work with us on Autism Corps strategy, and to meet with Michelle Obama should that portion of the campaign come to fruition! (Please sign the petition if you haven't already.)

• Rachel is a writer, singer, artist and community volunteer, as well as the author of Asperger Journeys. She did not receive her Asperger's diagnosis until mid-life and so is keenly aware of the challenges unsupported people with autism can face in their lifetime, and the specific challenges autism brings to older adults.

• Lindsey, a young pianist and composer who has been profiled in Glamour Magazine and on Good Morning America, is both the partner and sibling of adults with autism, and so understands adult autistic needs on multiple levels. You can follow Lindsey on Twitter at AutismIsARose.

In separate news, the ever-positive Terri Mauro has made our Michelle Obama / Autism Corps Petition the Site of the Day on SpecialChildren.About.com! We would be grateful if you'd stop by and lend a supportive comment.

And finally, we've started a Facebook Group to support the Autism Corps. Please join, and ask your friends to join.

Thank you, Rachel, Lindsey, and Terri! And thanks to everyone else who continues to show such postive support for this movement, and for the autism and autistic communities in general.

Self-Righteous SoCal Smiting

I enjoyed our recent trip to Southern California. Mali and I traveled down separately, and broke the road trip in two by having lunch with Seymour's Fresno-adjacent aunt and cousin (she's actually a first cousin once removed, but my husband's Portuguese family does not make distinctions between the various degrees or strata of cousinhood).

Then Mali and I went to Hollywood, and were given a personalized tour of the studio where Leo's godmother produces kids' TV shows. I got to take a picture with a real Skeksis! The various talented and kid-loving creatives adored Mali (who had turned her personality meter to 11) and made her custom character drawings and gave her show-related toys. Then we had dinner at Versailles (NOM) and got to meet the newest Rosenberg girl baby (CUTE).

In the morning our friend Skip treated us to a Westwood breakfast and recent medical media gossip. I then had lunch with Roo and Linda at Mexi-Casa in the O.C., and got to marvel at how well my friends are taking care of their health despite everything else that's going on in their lives. (The gym is a valid priority. Who knew?)

Then to my mom's house in San Diego where I saw Iz for the first time in almost two weeks, and got to also hang out with my mom, baby brother, and teenage niece Nicole. The six of us had three days of lazy beach dazing and Fair-going, cooking and socializing.

Then Seymour and Leo arrived, via the much-crowed-about successful one-way SJC-SAN flight. Seymour said that Leo had had a great week, temperament-wise, so we decided to take our entire group of eight straight from the airport to a local locals' Mexican restaurant.

Leo wasn't pleased to be trapped in a car with bickering sisters after a two-week break. He was less pleased to arrive at an unfamiliar restaurant, and started to make unhappy noises. I realized with growing panic that it was lunch time at a busy seat-yourself restaurant, that most of the tables were full, and that seating an octet would be a challenge even during a slower time of day.

Then I spied a table for eight in the back corner. There were two young women seated in the middle chairs, but they were next to an empty table for two. The restaurant seemed like the kind of neighborhood place where people would naturally rearrange themselves to ensure everyone who needed a seat got one, so I grabbed Leo and walked over to the two women, and tried not to look too wild-eyed as I asked, "Hi, excuse me, but would it be okay ... we have a large party and were wondering if you would mind moving to that table for two? We'd be really grateful."

The closer of the young women swiveled her head around, putting me face-to-face with a strain of SoCal vapidity I'd almost forgotten about:

"Yah, well, you know, we're kind of really in the middle of eating right now? But maybe you could sit next to us if you want?"

Eight people in the spot for two people? Really? Fine.

My family stalled, not being able to fit six people into the available seats, while I sat Leo down next to her -- though not so close as to imperil her -- and started taking out some of his activities and snacks. He was not impressed and started hitting his head. BAM-BAM-BAM.

She looked horrified and leaned further away, not understanding, I suppose, the nuances differentiating a tantrum and a meltdown. I apologized in faux-saccharine tones and switched places with my son. Then my not merely socially-enabled but charming and handsome brother asked the women one more time if they wouldn't mind switching tables, and the two practically jumped over the aisle into the empty seats. My brother transferred their trays with a smile.

I smirked. Because you know what? I am all done with people who refuse to help others -- whatever the need -- because they just don't feel like it. We need to be better than that, and if some people need slight unpleasantness to motivate ultimately positive behaviors, so be it.

Leo settled down once we arrived at my mom's house. The rest of the trip was the best vacation our family of five has ever had: beach excursions, walks, family meals, and Independence Day fireworks. Leo remained chipper.

We had another mid-trip lunch on the road trip back -- this time with my L.A.-based brother- and sister-in-law and their trio of girls. My BIL loaded us up with fifteen pounds of his custom charcuterie (we have since been swooning and sighing over and nibbling on eight different cured meats varieties, bacon included). I got to hold my new niece a lot a lot, and my SIL showed me the fantastic new fenced playground and bluff-top walking path in her neighborhood. I think we might be able to bring Leo back there. Another full-family trip option.

We hit sticky I-5 traffic as it was the last day of a holiday weekend, but Leo somehow maintained his cool even as the girls devolved into stereotypes, whining "Are we there yet?" every five minutes. I did not again need to get passive-aggressively self-righteous on any other strangers. Which is what I prefer.

Literary Pretensions Download: 90% Complete

My eldest: 'Ballet Shoes is better than any of the Clique books! And I'm not only saying that because it's what you want to hear!'

Take Action: Ask Michelle Obama to Help Create an Autism Corps

Jennyalice and I have taken the Autism Corps idea one step further: We have created a petition asking Michelle Obama to meet with us, to discuss creating an Autism Corps based on the Teach for America Model.

We welcome feedback from all families affected by autism, and from autistics themselves. Would four to fourteen hours of one-to-one support make a difference in your life? You can comment below, or even better leave a comment next to your signature on the petition.

Petition excerpts:

"We would like to propose that Michelle Obama meet with Shannon Des Roches Rosa and Jennifer Byde Myers, two parents representing two different autism families' perspectives, and Rachel Cohen-Rottenberg and Lindsey Nebeker, two adults on the autism spectrum, to discuss creating an Autism Corps so as to address one of the most pressing needs of autism families and adult autistics: one-to-one in-home support.

"We would like to discuss taking those three factors and combining them into a nationwide organization dedicated to training volunteers to aid kids and adults with autism: an Autism Corps based on the Teach For America urgent action model, with the goal of providing autism families as well as adult autistics in need with between four and fourteen hours of weekly care."

Please forward this post to anyone who might be interested.

Tremendously Successful Travel With Leelo

I'm not sure why I said I would write this post earlier today. I needed to get Iz to camp, get Leelo back home and ready for the schoolbus, take Mali to swimming lessons (which she uses to hone her comedy routine, not learn water skills), and then pick up her friend Lucy to distract her with imaginary Sparkle Puppy Super Veterinarian scenarios. Thinking I could do anything beyond kid-prep and chauffeurring and popping out some tweets was poor planning.

Still, no harm done. We are having a relatively mellow summer week and blogging is an elastic medium. But last week's San Diego trip with Leo? That was planned, examined, tweaked, and replotted until we had accounted for every detail we could anticipate. Planning was what made that trip with my boy and his autism possible.

And it worked. Leo was a star on his visit to San Diego. He cheerfully tolerated the flight down and the marathon road trip back (he was a much better sport than his Bickerson sisters), and was mostly happy and content to stay at my mom's house.

Here's how we prepared for our boy and his autism to have a successful trip away from home:

1) Do a Local Trial Run.
Leo and I recently spent one, experimental night at a hotel. I chose a location (Sebastopol, two hours away) that was close enough to turn tail and run home if we had to. We stayed at a hotel because I didn't want to risk interrupting family or friends' sleep. Leo did not have a problem sleeping away from home (though he did have issues with the pool not being open at 7 AM), and we had evidence that successful travel with our boy was indeed possible.

2) One-Way Flight the First Time
Leo and Seymour flew Southwest, which has an official policy of pre-boarding kids like our son. Leo enjoyed the flight down, but if he hadn't then we didn't want to worry about flying him back. Our destination was a day's drive away; I took the car down ahead of time and met Leo and his dad at the airport, and we all drove back together.

3) 48 Hours Are Plenty
We didn't want to push our luck, or stress Leo out with a long trip. A short, two-night visit seemed like the best way to succeed -- and indeed, it was. Leo got to have plenty of fun before coming right back home to his regular routine. We might try a longer trip in the future.

4) Choose a Destination With More Options Than You Think You Need
My mom's place is an ideal vacation spot for Leo, and I wouldn't take him anywhere that didn't have a similar variety of options. We could walk to one beach, and drive to several more. There is a hiking path out the back door. A nearby park has swings and a slide. There is a wonderful waterfront for taking walks when Leo goes into dawn-greeting rooster mode. There is a porch swing for Leo to chill out on if he gets overwhelmed and needs a quiet space. We rarely had to worry about how to keep him happily busy.



5) Stay With People Who Will Help You
Traveling with kids who need 1:1 supervision can be exhausting, even if those kids are good-natured. So we stayed with relatives who were happy to hang out with our boy in short stretches. If we attempt future non-family trips, I will research local special needs babysitting options in advance, so we can have a small bit of respite. As much fun as we all had, if my mom and brother hadn't pitched in occasionally, we'd have been exhausted.

6) Rearrange Accomodations As Needed
Leo loves my mom's house, but he simply cannot sleep in her guest room. It is too bright, and its location on the top floor makes it too hot for him during summer nights. Leo was up by 3:30 AM on his first night, which had us worried that he no longer tolerated sleeping away from home. But once I pleaded with everyone in the house to play musical beds and he got to sleep in a dark cool room on the ground floor, he slept through the night. *Whew*

7) Bring Lots of Engaging Activities
Leo currently enjoys dot-to-dots, mazes, matching activities, etc, and he likes to do the same activity multiple times. Instead of buying several of the same activity book, I made copies of their pages to tuck in every backpack and bag we brought with us, and laminated other copies to use with dry-erase markers. And I have mentioned these multiple times (and am not employed or compensated by their producer), but the My Busy Kits are a great idea -- lots of sensory, tactile, and open-ended activities, good space-savers, and all three of my kids love them (Leo was the focus of our trip, but he does have sisters). No matter where we were, we always had something with which to engage our boy.

8) Plan Time-Consuming, Self-Directing Excursions
The shore walk mentioned above takes at least an hour. Going to the beach takes at least two. Leo needed supervision but was otherwise self-directed during both. During these activities, my and Seymour's energies were able to shift to lower gears. Plus we enjoyed the swimming and walking as much as Leo did -- I was positively giddy to see my entire family having a good time in a crowded public beach.





This was the first full-family trip we'd taken since Spring 2008, when Leo exploded in the SeaTac departure lounge. We pretty much gave up on traveling with him after that, which is why I am so excited about last week's success. I almost can't believe Leo was such a happy and willing traveler, but am so, so grateful.

We may not be the globetrotting family of my pre-parenting dreams, but I'm tentatively hoping to resume traveling on our previous scale (before Leo's rough behavioral patch, he'd been to Hawaii, Seattle, Southern California, and Nevada, several times). We'll keep our destinations reasonable, and tailored to his needs. Who knows, Leo may one day get to fulfill his grandparents' dreams, and come boating with them. He loves to contemplate waves and water, and I love to think how soothing he would find the scenery below.



I won't despair if extensive travel doesn't happen, but how wonderful to once again imagine that it might!

How to Travel With Leelo

Will write a real travel post in the AM. Our travel was hugely successful, but I'm finding we all need a couple of recovery days.

I will say: BEACH BEACH BEACH = GOOD. Leo agrees.

The Autism Corps

UPDATE: I have tweaked the argument below to center on the Teach for America Model rather than the Peace Corps model, and created a petition which I encourage you to sign.

If I had an opportunity to discuss autism with First Lady Michelle Obama, here's what I'd want to talk about:

We need an Autism Corps, modeled after the Peace Corps and AmeriCorps.

There are hundreds of thousands of children and adults with autism diagnoses who need day-to-day support now, and their ranks are swelling. There aren't enough trained professionals to serve them all, and even if there were, many families can't afford them. I can't imagine how those families go it alone, managing their lives without external support -- especially those whose children have moderate to severe diagnoses. Mine is one of the luckiest autism families around; we have access to and funding for the highest quality services, yet we still have plenty of scorched-earth days.

Michelle and Barack Obama have launched a campaign to encourage service, while millions of energetic and idealistic young adults want to work but can't find jobs, and our president has said that he "...believes we must work to guarantee that Americans with ASD [autism spectrum disorder] can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD."

Let's put that all together. Let's create a federally-funded organization dedicated to training volunteers to work with kids and adults with autism. Autism Corps workers could help individuals with autism gain skills and independence, and have recreation opportunities. They could give their families -- all autism families, not just those who can pay for or know how to get services -- some sorely-needed respite. They could make it possible for parents who would otherwise be full-time caretakers to work outside the home. They could supply balance to families who never thought they'd find it. They could make a real difference for families approaching the breaking point.

This is not to downplay the importance of autism discussion, approaches, and research. But those are already on White House and Federal radars. "The Autism Society has invited First Lady Michelle Obama to participate in [their annual conference's] July 24 keynote panel on public policy and autism." This is good news for autism awaress in general, and I hope the panel will be recorded. President Obama has welcomed science back to the White House, which hopefully translates into good news for evidenced-based autism treatments. And the US Dept of Health & Human Resources has publicly released its Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research, which bodes well for future autism research, and answers.

While autism and people with autism shouldn't be demonized, we need to be frank: having a child with autism is more stress than some families can handle. Those families have needs that take precedence over panels and promises and research; they need help getting through the day. They need an Autism Corps. I would hope our First Lady (and her husband) could both recognize and support this idea.

Just Beachy

Leelo in Wonderland

Leo is going on a plane today.

That is huge news, and speaks to how wonderfully he is doing in general. Air travel is something we'd written off after a departure lounge meltdown fourteen months ago, and while his aggressive behavior escalated from the summer through the winter of 2008. On January 1, 2009, we put him on a very low dose of Risperdol, and it was a switch-flip. Almost as though all his senses all been previously misaligned, and he could now focus on things other than trying to process each moment.

Since the beginning of 2009, Leo has been increasingly been so content, so confident, so affectionate. He is engaged with his environment, and his family. We are locked in a vicious positive-reinforcement cycle: he behaves well, we shower him with praise and affection, he likes that and wants more, he repeats and expands on the positive behaviors.

Some mornings we now have to wake up our former dawn-responder alarm clock. He usually gives me a sleepy, "Mommy, get in the bed," and if I do lie down, he enfolds me in a bear hug. It's delicious.

His good mood had meant minimized aggression both to himself and to others. During provoking situations, he will start to lunge as he used to, but now pulls himself back or hesitates before he makes contact. That is fantastic self-control. I'm impressed and proud.

He has lots of spontaneous and new language, and this past week especially it has been bubbling up furiously:

• "Dora is on TV, Monsters [Inc.] is a video!"
• "Stand up, Mommy"
• "I'm hungry!"
• "MOVE!" [proper imperative form].
• "I need to run to the potty" (spontaneous potty run!)
• "Turn on TV," then "Turn it OFF" (when done).
• "Move your arm" [to me, proper spontaneous pronoun]
• "Want to lie down in the bed wif Mommy."
• "Lie down, tickle my belly"
• "Jump with me" (on trampoline)
• "Wear your crocs" (when he wanted Seymour's shoes).
• "Cut my apple."
• "Don't spin around" (a current stim is spinning during transitions between activities.)

(Half of this language was collected by Seymour. One more reason to love online spreadsheets for tracking data -- If I'm away, I can log on remotely and keep up with how Leo is doing, whether my husband is available to talk about it or not.)

He has also been doing really well with color and shape matching activities, pre-sight reading word-matching, dot-to-dot, and maze activities. Therapist V, his home ABA therapist/respite provider (who also works at a local autism school), has been instrumental in helping Leo identify new activities' goals in cases where I could not figure out how communicate them. Once he understands them, Leo has been mastering these visually-based tasks very quickly. Like many other kids with autism, he is smart as hell, but cannot always express that intelligence through traditional learning routes.

This is a boy who is ready to fly.

The girls and I are already at our destination at my mom's beach town home, and will be picking up Leo and Seymour in couple of hours. Leo has been talking about airplanes and airports for a couple of months, so I hope he enjoys having his wish fulfilled.

I can't wait to see how our attempt at a full-family vacation goes, because we miss taking our kids to stay with relatives and seeing the cousins -- all the cousins -- frolic and bicker and play. We're keeping this experimental Leo leg of the trip brief and controlled -- one-way, short flight, less than 48 hours at my mom's place, then driving home. If Leo can't tolerate being away from home, we can leave.

But I'm feeling optimistic. We're staying next to a park, can walk to a beach, I've brought Leo's favorite videos, toys, and stacks of xeroxed activities, and stocked up on his preferred foods. There is a trail behind my mom's house; if Leo gets antsy, we can go for a hike. He will still need vigilant supervision, but my mom and my little brother and Seymour will be here, and my girls are mostly self-reliant and hanging out with their teenage cousin Nicole -- Leo's need for a 1:1 adult companion shouldn't exhaust any of us, even if he is less than content here.

Have a happy flight, sweet boy.



(Mali & I planted these dahlia & gladiolus bulbs in March, and have been entreating them to bloom for weeks. This picture was taken the day before we left on our vacation; the flowers are of course about to explode. At least we got to see some of them bloom.)

Journalist Brian Deer vs. MMR Researcher Andrew Wakefield

Those who keep up with reporter Brian Deer's ongoing research into Dr. Andrew Wakefield's questionable research practices re: autism and the MMR vaccine, or who read the Schaefer Report, may have read that:

"Press Complaints Commission Orders Sunday Times to Remove MMR journalist's Stories on Dr. Wakefield from Paper's Web Site"

The Press Complaints Commission (PCC) of London, an independent body that oversees journalism fairness in the UK, has issued an interim order calling for the Sunday Times to remove stories written by Brian Deer about Dr. Andrew Wakefield from its web site. Dr. Wakefield had filed an extensive complaint with the PCC regarding errors of fact in Deer's reportage on the MMR vaccine and its possible relationship to autism. The General Medical Council (GMC) in the UK is presently hearing evidence involving Dr. Wakefield and two of his colleagues following a complaint to the GMC by Deer himself. The PCC decision today appears to indicate there are questions about the accuracy of the Deer stories. (Full article)

The problem is that the article excerpted above is from the media arm of Thoughtful House, which is Dr. Wakefield's US research/treatment facility, and that it distorts the facts (as reported on LBRB):

The Sunday Times has not been ordered to take down the articles. The PCC [Press Complainants Commission] decided to postpone its investigation until after the GMC [General Medical Counci] reaches a decision on the allegations of misconduct. This makes sense. If Wakefield is found guilty the complaint will fail. Meanwhile the PCC has asked the Sunday Times to remove the article from its website until matters can be resolved and the Sunday Times has agreed. [...]

So no order was issued, no judgement was made and there is no suggestion of impropriety by Deer or the Sunday Times. All the suggestions come from one source, Wakefield himself. (Full article.)

More from Brian Deer on Dr. Wakefield and the MMR/autism brouhaha.

New BlogHer Post: Identifying and Avoiding Autism Cults

New autism parents need to invest in critical thinking, and avoid hype-based organizations that foster autism fear & loathing. If you fall for an autism cult, you might never trust your own judgment again.

http://www.blogher.com/identifying-and-avoiding-autism-cults

An excerpt:

The best investment you can make in your autistic child's future is a commitment to intense scrutinization of treatment options. Does an approach make sense, or do you just really, really want to believe it will help? Are there real risks and only possible benefits? Do data and studies support it? If so, are they from independent sources or biased ones? New autism parents need to work past their fear and confusion, and embrace their critical reasoning skills. (If you need a skeptical thinking refresher, Michael Shermer's "Baloney Detection Kit" lists ten criteria for evaluating questionable claims.)