Additional responses to “What’s the one thing you’d like to say to your relatives about your autistic child?”:

“Just love him and enjoy him.  Let me worry about the rest.”

“Thank you for loving him and treating him like the beautiful blessing that he is. We’re blessed and lucky to have family that ‘gets it’!”

Photo by Me-Liss-A (flickr.com)

“Sometimes (my wife and I) need your help watching him so we can spend some time on ‘us’.”

“How we live for the ‘us’ moments, and have learned not to feel guilty about it. If only our loved ones could understand.”

“Please don’t look at him for what he is not, but rather for what he is.  There is not one day that goes by that he does not amaze me, I wish you could see and understand the same.”

“Recognize some of the exact same ‘quirks’ in yourself.”

“Thank you for loving him and recognizing his gifts. Understand that spending time with him is all he really needs.”

And in response to the question, “What’s the smartest thing anyone ever said to you about your autistic child?”:

“He is charming and intelligent beyond his years”; “He is a tutor in his math class”; “Quite frankly, he is refreshing compared to the rest of the kids (in middle school)”;”We love him here at school and we will miss him.”

Thanks as always to everybody over on the LinkedIn boards.

* * *

“Autism Parents’ Plea: Understand Kids’ Meltdowns,” from CNN.

IQ testing for children with autism, from about.com.

Image by Photo by Me-Liss-A (flickr.com)

This question posted to the forums: “What’s the smartest thing anyone ever said to you about your autistic child?”

Said one respondent who’s 3-year-old daughter was diagnosed two years ago, “She is progessing well and although she still shows signs of autism on a daily basis, my wife and I sometimes question the early diagnoses.  With that said, someone once told us that whether it is autism or not, she still has some developemental issues which need to be addressed.  ‘Concentrate on those things as opposed to getting all hung up on the bigger autism diagnoses.’  This comment helped us do just that and feel as though it provided a bit more focuse on her treatment moving forward.”

“Once our now-17 year-old son was diagnosed with autism one of the doctors who saw him said that if he wanted to do something, he would do it,” said another. “The secret was in motivating him to want to do it. I never forgot that and it was so true. It may sound trite, however, I was coming from a place in my mind that said you can’t reach
people with autism (and I) learned that oh yes you can!”

Another was once at an autism conference with a fabulous keynote speaker.  “She was an ABA specialist and author and had worked with numerous kids over the years.  She said that every time we take our kids out in public we need to remember all the eyes that are watching us.  Not in a negative way, like we’d better be perfect in all we do or else.  But she said that sometimes it’s more important to consider the impact and impressions we leave on others than to work on every single behavior our kid is exhibiting.  As people see us, they see how we value our child; how we respect him
as an individual and his inherent worth to us and society.  As others see how we value him, that directly affects how they see people with autism and disabilities in general. I try to be more aware of my interactions with my son in public, not just for his benefit, but also to teach others around us. For example, if he’s noisy or having a hard time staying calm somewhere, I normally try to speak to him calmly to defuse things.  In public, I also try to narrate and
explain his feelings and the reasons for the behaviors, allowing others to overhear so they can understand.  Hopefully, the next time the other people near us see someone in a similar situation, they would remember and understand, say, that maybe he’s just tired today or he’s feeling a bit stressed.  It’s better than just seeing
someone that seems strange and maybe a bit scary and not knowing why.”

And the smartest thing said to this respondent: “‘So, now you know. Make the best of your knowledge.  It is a blessing if you treat it as such.’”

My own smart comment came from a doctor, said to Jill way back in the hospital when Alex was just a year old: “‘Life isn’t a matter of having a good hand. It’s a matter of playing well the cards you’re dealt.’”

***

LinkedIn’s groups are excellent places to pick up advice and contacts professional and otherwise. I’m a member of Autism Advocates, Linked to Autism, Autism Speaks, Parents With Patience, Autism Advocacy, Special Education Innovators, and Special Olympics, among others.

Photo by Me-Liss-A (flickr.com)

Replies continue to come in on the question posted on another forum, “If you could say one thing to your relatives about your autistic child, what would it be?”

“Have empathy,” said one respondent. “”He’s still family. Don’t forget he exists,” said another. And still another: “Open your eyes!”

“Do not be afraid,” one reply said. “Do not feel sorry for us or our child. He is the greatest gift/blessing we could ever have in our lives. We are happy we were chosen to care for this person.”

“My wonderful Aspie is now 16 years old, and we have overcome so many hurdles,” one respondent said. “If I
could turn back to yesterday, these are some of the things that I would have said: ‘It is not my lack of discipline that has made him this way and I don’t appreciate being told that is it poor parenting.’ ‘It’s okay that you didn’t invite me to family get togethers because my child is too high-strung. Someday when he is older you will regret your decision to exclude us all those times’ (and they did regret!). ‘Yes, I have to remind him to say “thank you” when you give him something. It’s not that he is spoiled, rude, or ungrateful. It’s just that sometimes he forgets our social standards.’ I couldn’t stop at just one comment either!”

With an eye to celebrities and debate: “Please stop judging our love for our child based on our (un)willingness to try every anecdotal therapy you hear about from Jenny McCarthy or Oprah.”

“Love him because he’s different,” said another. “He’s no one to fear and deserves the same love and respect as his siblings.”

I’ve always liked to think people liked me because I was different.

***

Autism Speaks Family Services has released its Autism Safety Project, which provides first responders with information and guidelines for communicating with individuals with autism in emergency situations.

I’ve often wondered what I can do. Organizations walk, give concerts, golf, and do any number of other activities during Autism Awareness Day. Unlike too many observances, the event seems sincerely devoid of commercial possibilities (as a friend said to me last April, “I searched and searched for a Happy Autism Awareness Day card for you, but couldn’t find one…”). So I’d like to do something real, though maybe on a smaller and more immediate scale than a walk to a rock concert, to start.

“What are you doing to promote Autism Awareness Day?” was the question posed on LinkedIn’s Autism Awareness Group earlier this week, and several responses offered food for thought:

One busy LinkedIner specifically shopped at a grocery store chain after spotting store associates wearing the puzzle pin.

Another woman handed out awareness fliers to pediatricians and pediatric dentists in her area, and placed an awareness poster in her husband’s dental practice, along with fliers informing people that she’d speak for free to any groups who want more information about autism.

“We posted information on our website for all school employees,” said a director of sped in one Virginia school district. One advocate overseas added the World Autism Day logo to their website (www.actiebijautisms.nl), and planned to host a seminar for local autism professionals and academics to discuss ABA in the Netherlands.

From a parent in Great Britain: “The day was great but I was quite fed up with how little mainstream TV coverage the day got in the U.K. I was using Twitter to try and get people to go through to the World Autism Awareness Day website and to the National Autistic Society website in the U.K.” Smashing!

One woman brought in bagels and cream cheese for her office. “It had promient placement in the kitchen, with an autism puzzle poster and notification of World Autism Awareness Day, and a few facts and figures about Autism. It created some good discussion.”

Had her co-workers any questions about autism?

” ‘Why is autism increasing?’” she answered. “Many had heard that vaccinations were a cause. I shared some facts and current thought, and also discussed current legislation on private insurance coverage of autism therapy in eight states.

Most I spoke with were incredulous about autism therapies not being covered by private health insurance.”

News stories on other programs for Awareness Day:

California Association Of Health Plans Recognizes World Autism Awareness Day By Highlighting Medical Services Plans

Provide http://www.medicalnewstoday.com/articles/144873.php

Elementary school makes Awareness pins: http://wfmz.com/view/?id=720846

Toy retailer sponsors walks and promotes toys that “speak to autism, and helps children develop certain skills”:

http://www.nbc40.net/view_story.php?id=8762

Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

If Charlie’d had a younger sibling, would we have decided to participate in studies like this one at the University of Washington, as noted in the Seattle Post-Intelligencer:

Autism researchers at the University of Washington are seeking parents who will allow them to do brain scans of their infants.

………….

The UW scientists are looking for 84 six-month-old infants from California, Oregon, Washington, Montana, Idaho, Nevada and Alaska who have an older sibling who has been diagnosed with autism. They also need 34 infants with typically developing older brothers or sisters.

Each child will be scanned three times over two years.

Certainly I would have considered having a sibling of Charlie’s participate in such a study—-and then, after reading (wading) through so many studies, so much research, about or said to be related to autism over the years—-sometimes one wonders a bit about where it’s all going.

Some research from June: Are low birth weights and preterm births risk factors for autism? Does autism present diffrently in girls and women?

June was, too, the month that a certain female celebrity led, along with some others, a rally about “vaccine safety” in Washington, D.C.. Questions swirled about the extent to which said celebrity’s own child is recovered or not, or undiagnosed—-and perhaps this sort of discussion is beside the point, especially if you consider the notion of neurodiversity, according to which, just as we’ve come to understand that there’s diversity in terms of race, ethnicity, and gender, so we’re also starting to learn to think of diversity in terms of different ways of thinking, of different minds.

Autistic Self-Advocacy Network President Ari Ne’eman and I were interviewed for a Good Morning America segment on neurodiversity in early June—-a show which provoked quite a bit of discussion.

An autistic child was removed from an American Eagle flight in late June and, in July, a family with four children, one with autism and one with cerebral palsy, was told they were “too disruptive” to continue on a connecting flight from Phoenix to Seattle.

The NIMH put a study on chelation on hold, leading to considerations of whether the study should just be done to prove the efficacy, or lack thereof, of this alternative, and dangerous, treatment for autism. —–Another new diagnostic technique looked at whether one looks at the mouth or eyes of a person’s face. —- And findings about the rates of autism in Somali children in Minneapolis led to a lot of speculation and fears of some external “thing” causing such an increase. — Talk show host Micahel Savage launched a thousandfold of ire towards him for some, indeed, savage comments about autistic children and their parents.

Bringing the focus back to what we can do for autistic individuals in the here and now, it was reported that restraints are being used more and more in public schools

With the advent of summer, Jim and Charlie began another summer of bike rides, with Charlie more and more taking the lead and Jim devising newer, and longer courses. And July and the 4th of the month prompted more thoughts on the meaning of independence and also about why I don’t hold Charlie’s hand anymore (well, most of the time).

And please remember, with flowers and swings, Evan Kamida.

Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

February brought on winter doldrums and also a topic that came to dominate 2008, the presidential election, starting with a post on the candidates’ views on autism prior to Super Tuesday on February 5th.

There was more evidence refuting the vaccine-autism link—and specifically the MMR vaccine—from the Archives of Disease in Childhood. We need to get the word out about the evidence that there is no link, as it’s been reported that more parents are choosing not to vaccinate their children, because they fear that vaccines or something in vaccines might cause autism. And measles cases have been on the rise in 2008, with 5 cases reported in San Diego (and soon 11 cases) in mid-February.

In the UK, the National Autistic Society began another phase of its Think Differently about autism campaign, with a focus on autistic adults and the message “I Exist.” The need for this campaign was more than made apparent on hearing comments about autistic children as “retards” made by Adam Jasinski, a contestant on CBS’ Big Brother TV show.

After an article in Wired magazine featuring Amanda Baggs and Michelle Dawson, questions about autism as disease/disability/difference led to discussion (of a rather heated nature, at times).

And then, on February 28th, then-presidential-candidates Senator John McCain linked the rise in autism cases to mercury in vaccines…………………

That’s how autism is referred to in a  story in yesterday’s Philadelphia Examiner about “assembling your medical team” including osteopathic physicians. There’s mention of finding “relief from autism” via homeopathic methods, and autism is discussed as if it were a disease like cancer—which autism is indeed not.

And no, after 11-plus years raising my autistic son, no way do I feel that it’s been some “horror” I wish to run away from, or that I ever need “relief from autism.” Sure I do (as one new story today puts it) “worry about everything,” but, really, it’s all better with Charlie.

We do not, as I’ve noted from time to time, have a TV set—a fact which, when I happened to mention it to my students a while back, completely shocked them. “What do you do?” they sputtered. The class was my Elementary Latin class and it was one of those “teachable moments” when I could have launched into a discussion about “how did the Romans spend their free time” and “what about those giadiator fights.” It was the week before exams and we had so much to review and so I let the moment past, and got back to the fourth conjugation of verbs.

Apparently I’d made an impression on my students, as they brought up the not-having-a-tv business a couple of times (mostly, I suspect, to avoid having to think about that inevitable entity, the Final Exam). “I have to have TV,” one student commented. And another: “Dr. Chew, doesn’t your son want it?”

My answer further confounded things. Charlie, as I’ve noted before, is not a TV watcher or, for that matter, a video watched, or a player of video games, or a player of computer games, or a user of the computer in general. I guess it is a sort of a stereotype or autism myth, or possibly even an autism reality, that autistic children like all things electronic. (We know a boy who, in his earlier childhood, had a total fascination with electric cords and outlets: Oh yes, dangerous!) Charlie appears to be in the (very) (small) percentage of children to confute the stereotype.

Charlie usually tells me “I need a break” after a maximum five minutes at the computer and, in the good old days when we had a TV set and cable (because we actually do own a TV set, but have not bothered to get cable), Charlie mostly liked to watch videos. Not just any videos, of course, but about 4 or 5 certain ones of The Purple One, and a few select Wiggles ones too. An attempt to switch to DVDs was only partially successful, Charlie having an unshakeable preference for the larger rectangular objects with that visible strip of tape (Charlie having a longstanding preference also for cassette tapes, but that’s another story). By the time we cancelled Comcast, the only thing that was being watched on the TV was some ESPN by Jim and Charlie glancing occasionally on.

All of this is to say that I am indeed going to miss seeing Jenny McCarthy, in her capacity as Generation Rescue spokesperson, on Larry King Live tonight. Having, as you may also know, written kind of a lot about McCarthy and her stance about, or rather against, vaccines, I kind of have a feeling that I’ve some idea of what she’ll be saying. Courtesy of my email inbox, I’ve been sent a summary of the show:

…….hear the facts tomorrow night as Larry King asks the tough questions on:

* How to vaccinate while lowing [sic] the risk of children getting autism
* How to effectively treat and prevent autism, ADHD and other neurological disorders and chronic illness

In-ter-est-ing. Sounds like there’ll be some references to how a parent can change the schedule of vaccines (despite the fact that vaccines don’t cause autism). Also, sounds like Generation Rescue is extending its concerns/campaign/rescue operations beyond autism, to ADHD and “other neurological disorders and chronic illness.”

Though what if autism, ADHD, “other neurological disorders and chronic illness,” still exist even after vaccine schedules are changed? What’s to be done—change the schedule again? Admit that vaccines have been, and are becoming, a sort of sideshow in the larger discussion about autism, and a topic for TV talk shows and celebrity magazines—-something that distracts us from the really pressing, urgent questions and concerns regarding autistic children and adults, like how to create and maintain good schools with good services, trained aides and staff and therapists, jobs that draw on people’s talents and choices for housing, and much more?

Whatever gets talked about on Larry King Live tonight, I suspect it won’t be enough to convince me to call up Comcast so we can watch TV.