Autism and God

Occasionally I have posted on the topic of autism and religion. These have been very general thoughts about how the Church, the religious, and God (whichever may be yours) view autism and autistics.

Ginger Taylor, on the other hand, has written an in-depth discussion of autism from a Christian point of view in a series of posts she calls Autism in God's Economy. Originally posted last spring during Autism Awareness Month, she has re-posted them for the Christmas season.

Here's how Ginger describes the series:

Because so much is at stake, the autism discussion and debate grows louder and more fevered, often making it difficult for those involved to really take in various perspectives. Even when we do, they are all still flawed human perspectives. Even the best, brightest, wisest and most experienced of us do not have the whole story.

But God does.

So in “Autism in God’s Economy” over the next six days I will discuss a few things that the Bible tells us about God’s perspective on those with Autism and on the rest of us. This series is predicated on the deity of Christ and the inerrancy of Scripture, which may be controversial ideas to some of my regular visitors. If they are to you, I invite you to read on none the less, and take a look at what God of the Bible says. If you are a professing Christian, then this is an important series for you to read no matter how autism affects you.

The series includes, as Ginger mentions, six parts:

The Least of These - In God’s economy, the weak, the marginalized, the disenfranchised, the overlooked, the voiceless, the vulnerable, the sick, the oppressed, the grieving, the bullied, the exhausted, and those at the end of their rope are the ones who get into the VIP section. They are the ones who gain the attention and compassion of the God of the Universe.

Those with Autism - What Matthew 25 means to you whose autism has allowed you to be mistreated is profound. It means that not only does The God of the Universe see what happens to you, He stands behind you at all times taking careful note of all your interactions with others. He records who victimizes you, who ignores you and who works their butt off to get to know you give you what you need.

Parents of Autistic Children - Once you become the parent of a disabled child, you begin to see what that ‘blessing’ really means in concrete terms, because one of the first things that happens to you, in your early grief, is that you become grounded. All of the trivial distractions, the petty rivalries, the BS ego trips, the vain ambitions and the frivolities of life suddenly become very unimportant. The crap in your life starts to fall away and it is replaced by seriousness about things of true value.

Friends and Family - It is their innocence and vulnerability that God stands behinds and uses to judge those who come into their sphere of influence. It is precisely because they are so easy to dismiss and mistreat, that God watches closely to see which of us have extracted ourselves from our own self-centeredness and selfish ambitions to notice someone who is need and to bear their burden with them.

Those in Power over Those with Autism - If you have taken responsibility for any part of the life of someone with autism, or even if that responsibility has been thrust upon you, take this time to measure yourself. Have you lived up to the responsibilities that you have been given to the innocent and vulnerable lives that Jesus has chosen to represent Him for the purposes of His judgment in his absence?

For All of Us Who Have Failed in Our Duty - When those of us with autistic people in our lives take a hard, honest look at ourselves, we realize the question is not have we failed them, it is how often and how big have we failed them.

As fellow autism dad Wade Rankin says in his post about Ginger's series, "For anyone who has an interest in the spiritual side of this autism thing, or who may have questions about reconciling the notion of a benevolent God with the autism epidemic, it makes for good reading." Make sure you check out the comments discussion between Ginger and Jonathon for even more on the latter.

Autism book clubs on Shelfari.com

One of the various reasons I finally got around to posting my review of Portia Iverson's Strange Son was my signing up for an account at Shelfari.com, a social networking site to connect those who still engage in the fading activity of reading. As I was adding books to my shelf I wanted to add a review of at least one book, so I dusted off that review and posted it to Shelfari, as well as here (where it would, admittedly, reach a bit larger audience).

One of the other things that Shelfari provides is the ability to create groups, what seem to me to essentially be a virtual book club. I created one, Books by Autism Parents and Autistics, to provide a forum to discuss, well, books by autism parents and autistics. So far, the group is just me. I'd love to have some company. (hint hint ;-)

On a side note, I understand that there are several different sites for managing a book shelf and that converting from one to another is a bit of a pain. I actually went through this when switching from iRead within Facebook to Shelfari. (I wrote a bit about the myriad options, and headaches they cause (for me, at least) in Time out, please? last summer.) If you don't want to switch your entire shelf over to Shelfari, perhaps just come on over for the group discussion.

Hope to see you there.

A tale of two mothers

I wrote the early drafts of this review several months ago, when I first read the book Strange Son. For various reasons, I never completed the review. And for various other reasons, I finally have. So, here it is.
- - -- --- -----

Although I’m glad that I read Strange Son, I can’t say that I ‘liked’ or ‘enjoyed’ it. On starting the book, I gained an almost instant dislike for Iverson, or at least the Portia Iverson depicted in the book, that made it nearly impossible for me to read more than a few pages at a time.

More than just a personal dislike, I found her attitudes towards other people, especially autistics and most especially her own autistic son, repugnant. I almost gave up trying to get through it several times (my wife stopped at page 26, it angered her so much), but I did eventually make it to the end.

Iverson, co-founder of the Cure Autism Now (CAN) foundation, and her son, Dov, are one of the two mother/son pairs of the title. The other mother and son are Soma and Tito Mukhopadyay. Iverson first learns of Tito while attending a conference she had organized for CAN, as she describes in the opening of the book:

“There’s a boy I think you should know about,” Francesca Happe began, gesturing for me to sit down. “His name is Tito.” The renowned psychologist from England, whose specialty was autism, continued: “He’s eleven years old and he lives in India. He’s quite autistic, but he can read and write and he’s very intelligent.”

She smiled at me and paused before going on, as if to gauge my reaction.

“Tito is a wonderful poet as well,” she continued. “He’s even published a book, an autobiography with some of his poetry in it.”

“And he’s autistic?” I asked in disbelief, thinking I must have misunderstood.

“Yes, he is definitely autistic. ... There is only one Tito in this world, and no one else like him. He is his own disorder,” she replied with certainty.

I knew that no one had ever heard of such a severely autistic person being able to write and communicate independently. But wasn’t there even a remote chance that there could be others who looked and acted just like Tito but couldn’t communicate? At the very least, couldn’t Tito provide an extraordinary window into the most severe kind of autism?

The bulk of the book describes Iverson’s efforts to answer that question. The first step was to get the Mukhopadyay’s from India to the United States so that Iverson could have Tito studied by various medical, neurological, and behavioral experts. The book is replete with stories of Iverson taking the two around the country to be seen by various specialists, meeting with limited success at many. These little vignettes provide some interesting insight into what the medical profession apparently thinks (at least thought, since most of this happens from 1999 – 2003) about autism. And it is not pretty. “He can communicate? Then he’s not autistic” seems to have been a very common reaction, as was, “His mother must be somehow signalling him with what to type.”

Throughout the book, we (the reader) get to know Tito and his mother a bit.

In a nutshell, Soma changed her role as parent, from the ‘typical’ mother that acts as a guide for her child to dedicating herself to a mother working directly with her son to help him find his way in the world. She helped Tito understand the world around him, and helped him learn how to communicate – quite beautifully – through his writing.

Though the relationship becomes somewhat strained as time goes on, especially as Soma begins working more with other kids, the love between mother and son is evident and never in doubt, at least not in my mind. (Iverson’s depiction of how Soma treats Tito is reminiscent of how a person would treat a pet dog they were trying to tame; based on the rest of the book, I think this is probably more a reflection of Iverson’s attitudes towards autistics than it is an indictment against Soma.)

To me, Soma and Tito’s story was the most important of the book, the story that I really wanted to know more about. It was the story of a parent reaching out to her son, accepting him for who he was and working with that. Unfortunately, their story comes across as a sub-plot to the larger story of Iverson’s devotion to “finding treatment and a cure for autism.”

In many ways, Iverson’s description of her, and her husband’s, reaction during the period immediately preceding and following the autism diagnosis will be familiar to many parents of autistic children. Confusion (What is autism?). Guilt (What caused it? Could I have prevented it?). Despair (Can I cure it?). Embarrassment (I don’t want anyone to know. What will people think of me?) At this point, there are many paths a parent could follow. Soma followed one path with Tito; Iverson chose a very different path.

Where Soma changed her role as a parent and dedicated herself to Tito, Iverson essentially abandons her role as parent and dedicates herself, not to Dov, but to fixing Dov.

The events in the book take place in the late ‘90s and early ‘00s. Sadly, things probably haven’t changed much in the past few years. (I’ve hear that evidence of this can be found in Jenny McCarthy’s recent book about her autistic son, but I’ve not been able to get myself to read it.)

The starting gun

This is the last of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.

- - -- --- -----

One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70's and early 80's) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd ("Welcome to the Machine" was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point.

I've been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song "Time" is an excellent reflection of the fleeting nature of our time in this world. The second verse includes the following lyrics:

You are young and life is long and there is time to kill today
And then one day you find ten years have got behind you
No one told you when to run, you missed the starting gun.

These lyrics are quite literal, and it is not too difficult to catch the meaning. But I gained a bit more insight into these words, especially the last line, while watching a documentary of the making of the album (told 30 years after the fact).

In the documentary, Roger Waters talks about a teenage conversation with his mother and the realization that it was time for him to start living his own life, that the "starting gun" had fired. One of the most important jobs a parent has is preparing kids for life on their own (however you may define that), a life that they are in control of (to the extent that anyone is control of their own lives).

There is a somewhat well defined path that we typically, though not always, can follow with our normal (in the statistical sense) kids. And many of us have come up with our own ways of preparing our kids for what lies beyond childhood.

But how do we let our kids, especially our autistic kids, know that the starting gun has fired?

----- --- -- - -

Original comments:

1. Matt |

   I like the words of Crush (from Finding Nemo): “When they know, you’ll know. You know?”

   That doesn’t fit. It just points out how hard the question really is.

   Oct 10, 5:54 AM —

2. Casdok | motherofshrek.blogspot.com

   A hard question, but a good question.

   Oct 10, 8:40 AM —

3. Elissa | managingautism.com

   It’s a tough question!
   I think the best that we can do is to just allow them to be who they are. Life happens as it does and I guess I have always just thought that our kids will take their own journeys as they need to – as and when it is right for them.

   Oct 10, 9:18 AM —

4. Andy Morris | chanceforrosie.org.uk

   Hi there –
   My name is Andy Morris and I live in the UK. I have a severely autistic daughter called Rosie, age 6. My wife and I have been home educating Rosie for the past 2 years on a ABA based education plan. We also have a very well publicised and exciting fundraising campaign to raise the money we need for this.

   To achieve this, about a year ago my wife Kara and 4 other women formed a very tasteful burlesque-style dance show called ‘The Full Monty Girls’. They have since performed in our local town Stroud, London, Bristol and Brighton and have raised the bulk of the money we have needed for the programme – £17,000 per year.

   As I have said, the show is very tasteful and has inspired many people. The story of Rosie and the Full Monty Girls has been on Chennel 5 news twice, the ‘This Morning’ programme, in Cotswold life magazine, Closer magazine, First magazine, the Sun and the local papers on many occasions. A major USA news programme called ‘Inside Edition’ also did a piece on the show last year.

   We have now come up with a new and exciting initiative. A very tasteful calendar has been made by the Full Monty girls. For the monthly photos, an award winning photographer took some really tasteful and beautiful naked photos of the girls (covered up in the right places, of course!). The front of the calendar features a shot of 100 local volunteers forming the word ‘AUTISM’, naked in a field, taken from a helicopter – quite a feat of organization!

   The reason that I am emailing you about this to ask if you would be prepared to put a link on your website to Rosie’s website. She has a beautiful site, explaining everything that we are doing as well as some useful information on autism. We think that it will and has inspired parents with autistic children. More traffic would help us to sell our calendar and I would hope that the high profile nature of Rosie’s story would bring more traffic to yours, also. I have a PDF of the calendar I can send to you for you to look at and a small web optimised photo if you want to use it.

   Rosie’s website is : www.chanceforrosie.org.uk

   All the best, Andy.

   Oct 10, 2:24 PM —

5. Patrick

   I’m not sure that even when one thinks their spectrum kid is ready for the world that they truly are.

   I am one of the more independent living Asperger’s (more than 25 years of Job history) but still struggle with things that I beleive most would find easy, like managing the monthly finances, housekeeping and of course have little in the way of a useful social life.

   Of course the schools thought I would be ok, as I even completed advanced placement courses in Biology and English. (The equivalent of A levels?)

   Of course my parents thought I was ready because they had taught me how to cook and wash laundry, and for years had me doing the house/yard keeping tasks.

   But I never actually got a job all by myself.

   I work full time and haven’t the energy or motivation it takes to properly keep things up. But of course I deal with Major Depressive Disorder too, and other medical conditions like Sleep Apnea.

   I am not saying that it cannot be done, just that people don’t always turn out as well as they may Appear to be able.

   And Andy,
   While I hope your efforts for the stated purpose are indeed virtuous, the comment is off topic, and may be viewed by some as an appeal to pity, or a scam.

   What are you doing to help Others, besides your own interest?

   Oct 10, 5:28 PM — [ Edit | Delete | Spam

6. Club 166 | club166.blogspot.com

   In an age (in the U.S. at least) when a large proportion of kids come back home to live for a period of time after college, this question certainly applies to all kids.

   But for kids that, of necessity, have had a lot of interdependence with their parents, it is doubly hard to determine when and how to get them to fly “on their own”.

   For many of our kids the prospect of living without at least some supports may never occur. But that does not disturb me. As many others have pointed out, most all of us live with ‘support’ of many types from the community at large. It is just that our society has organized itself to provide support for the majority of the population, which does not include autistics (or many other disabilities).

   I see it as part of my job as a parent of a ‘special needs’ kid to actively advocate for proper supports for all with disabilities. That way, by the time my son is old enough supports will be in place, whether he needs to avail himself of those supports or not.

   Joe

   Oct 10, 8:50 PM —

7. Ms. Clark |

   I am glad that I didn’t have to live with my parent(s) when I became an adult (actually, I lived with my mom until I was 19, and ended up living with her again with my kids for a few weeks when I was in my twenties.) I am also thrilled that my ASD kid can live with me.

   I do understand the American (Western?) drive towards GETTING THE KIDS OUT OF THE HOUSE, but people have to understand that it’s a cultural practice, just like giving every kid their own bedroom is a cultural practice, it’s not handed down from on high as THE way to be an adult.

   There can be huge amounts of shame attached to adults living with their parents here and that is just wrong.

   Yes, parents can die and yes, there should be lots of support out there for people to live in their own homes and not have to go to an “institution” or “group home”. There may be some idea “group home” situations, but it’s my understanding that they act like mini-institutions in most cases.

   So… the “starting gun” of kids living on their own is a creation of a culture. It’s a notion that actually is kind of offensive to some people. I reject it as a mandate.

   Yes, if it’s possible for the kid to move out and the parent wants it and the kid wants it, fine. Other than that, gimme a break. It’s not necessary.

   Oct 10, 9:51 PM —

8. Ms. Clark |

   Oh, and I find the nudist calendar and the “Full Monty Girls” stupid, sort of pathetic actually… but then that’s just my opinion. And the request here for donations was off topic and smacked of “scam,” as noted above, even if it isn’t one.

   Oct 10, 9:53 PM —

9. Joseph |autismnaturalvariation.blogspot.com

   In Latin America, it’s fairly common for the kids to continue to live with their parents, even after they get married. Part of it is economics I’m sure.

   Oct 10, 9:54 PM —

10. Maddy | whittereronautism.com

    I think all parents want crystal balls. I don’t know which is more annoying, not being able to see into the future or being kicked with hindsight.

    I do know that our family is in an entirely different place than we were four years ago.

    All children grow in fits and starts, so it’s impossible to know the possibilities ahead.
    Best wishes

    Oct 11, 3:47 AM —

11. Ms. Clark

    Even if you can trace it to economics, living with parents is not automatically a sad situation, and that’s what the default assumption is. One can make the case that the really sad thing is the way families are dissolved so easily, and geographically separated so often, in the US.

    The fallout of all this emphasis on independence and separation of lives of family members is that it’s fairly likely for an old person here to die alone with kids who show no concern or very little concern for the parent housed in a convalescent home. The idea of “bringing mom and dad home” to live with the kids or for the kids to move back in with parents to care for parents is anathema to most Americans… not all, but most.

    Oct 11, 3:49 AM —

12. Maddy | whittereronautism.com

    p.s. I really like that terribly annoying rolling widget on the top left of the screen with the latest hub postings. Is that something we could or should put on our own blogs?

    Oct 11, 4:08 AM —

13. Leanne | mumkeepingsane.blogspot.com

    I think there’s a difference between having children at home who are contributing (in some way…I don’t necessarily mean financially) to the family and those who sit on the couch and eat their parents into debt while contributing nothing (except maybe whining).

    I would have no problem living with my children as adults as long as they don’t have a “you owe me” attitude or a sense of entitlement about it.

    Oct 11, 1:41 PM —

14. Marie |

    I like the idea of a duplex, aka “mother-in-law’s apartment.” Living together but each having own space, and being as mutually supportive as each desires.

    Who says a “starting gun” has to fire? “And then you find ten years have got behind you” seems to refer to a cultural construct (“by the time you are 18/ 25/ 35 years old, you should have accomplished X and Y and Z”). I wonder if it also suggests that one wasn’t paying attention to the days as they were happening—and so where did they go? and how did I get here? and why am I not there?—and maybe one ought to pay more attention to what’s happening as it’s happening.

    Oct 11, 4:13 PM —

15. Ian MacGregor |

    I let my emotins get the better of me, during my most recent posts. I apologize. I thoought people might be interested in some research being done on extracelluar proteins implicated in autism.

    http://www-ssrl.slac.stanford......utism.html

    Oct 11, 6:12 PM —

16. Andy Morris | chanceforrosie.org.uk

    Please don’t take my post as a scam. I actually misunderstood where my post was going. My email was in fact intended as a personal email to the owner of the site requesting a link somewhere here to Rosie’s website to help sell calendars for our fundraiser.

    I found a couple of the previous posts a touch cynical – there are some decent people left in the world, you know – just trying to do the best for their children. Check the website out if you feel cynical – we put most of our waking lives into our daughter’s progress and have virtually no time for ourselves.

    We have to raise such a huge amount of money every year for Rosie so we knew we had to come out with a eye catching fund raising idea and if that seems stupid to some people, then so be it! At least we know we’re doing everything we feel is right for our daughter.

    Oct 11, 9:31 PM —

17. Another Autism Mom | anotherautismmom.blogspot.com

    I love that song too, but to me it sounds more like a lament from someone in a midlife crisis because things didn’t turn out to be as exciting and happy as we’d hoped, probably due do wrong decisions or bad luck. Now that you clarified about the Roger Waters conversation with his Mom… Well, people become independent, move out, get a job and a family, and it still doesn’t mean they’ll be happy adults. I don’t know what our kids’ future will be like, but I hope that even if my child has to leave with me for the rest of my life, we can enjoy the situation as much as we can, and he’ll be a happy man having fun with his hobbies and other interests, maybe girlfriends or whatever. As far as I’m concerned the good side of this would be that I won’t be devasted that my son is moving away to a different state to go to college and I won’t ever see him except during holidays.

    Oct 11, 9:43 PM —

18. Another Autism Mom | anotherautismmom.blogspot.com

    I meant “live with me”, sorry.

    Oct 11, 9:43 PM —

19. Ian MacGregor

    For those of us with low-functioning children,the question is really concerns what happens to them once we can no longer take care of them. We have no idea of how muh progress they will make, but fear it won’t be enough to avoid being institutionalized, somethng that they might not mind at all. It is not the insitutionalization that we fear, but abuse of our children in these institutions.

    Oct 11, 10:20 PM —

20. Ms. Clark |

    This is a fear of those of us with “middle functioning” children, too.

    The thing to do is to advocate for people to see autistics as humans NOW, otherwise when you are gone the average Joe will see your daughter as a monster, and monsters don’t have feelings. It doesn’t matter what you do to them, and it doesn’t matter if they die.

    Acceptance is your best chance of giving your child the best chance. The demonization of autism might destroy MY kid after I’m gone if it doesn’t stop, and I’m not going to sit still for it now.

    Oct 12, 2:57 AM —

21. original cali biomed xprt |

    Thanks for that link Ian.

    Oct 12, 7:50 AM —

22. Brett |

    Thanks to everyone for your comments so far (and please, keep them coming). After reading the comments, I had to go back and read my original post to make sure of what I had said. It seems that most people interpreted my reference to the “starting gun” as “going out and living on your own.” While that may be one option for some, it’s not really what I meant.

    I agree with Ms. Clark in her assessment of children living at home. In fact, I’m already looking at adding on an apartment (a “mother-in-law space”, if you like) so that may son(s) can continue to live with us.

    I was really thinking more along the lines of the true spirit of the song: how do we let our kids know it is time to live for themselves so that when 10 years have gone by they don’t have any regrets? I don’t really care about what society at large thinks they should have accomplished, I want my kids to be able to look forward at what they want, and back on what they’ve had and done, and not be left wanting.

    Life “beyond childhood” encompasses so much more than just living on your own.

    Oct 12, 7:32 PM —

23. original cali biomed xprt |

    Just a side-note to Brett. The starting gun for me fired very near the HS you write of, however it was a little earlier than when you attended … ; ]

    Oct 12, 8:54 PM —

24. Patrick |

    My apologies if my response was one of those considered cynical Andy.

    A google search does indeed return many hits for the Girls and the Calendar stunt.

    Would you mind letting us kow what special education programme in USA you have selected? (As reported on http://www.stroudnewsandjourna....._rosie.php ?)

    Oct 12, 9:26 PM —

25. Tito Rajarshi Mukhopadhyay |

    I am planning in a long term way
    Till the moment of my last living day….
    ‘I would continue to live at home,
    Even when I am living my 60th birthday.’
    I discussed the plan (till here) with mother,
    She assured me that ‘Its okay.’
    .......
    This is not what I yet discussed
    But it islaid out thus till thus-
    Then as parting hours draw near
    And I would draw my last living year…
    I might go to a broad minded world,
    Who don’t mind applying Euthanasia I am told.
    I would smile a smiling death,
    And thank the doctor for my last end breath.

    – Tito Rajarshi Mukhopadhyay

    Oct 13, 3:46 PM —

26. Andy Morris | chanceforrosie.org.uk

    Hi Patrick

    Thanks for the post! The program is called the ‘Growing Minds’ program and the method is a combination of interactive and directional approaces – a bit like ABA with warmth, play and fun! There is a link to their website from Rosie’s site which is www.chanceforrosie.org.uk.

    All the best to you, Andy :)

    Oct 13, 10:26 PM —

27. Marie |

    [quote]how do we let our kids know it is time to live for themselves so that when 10 years have gone by they don’t have any regrets? I don’t really care about what society at large thinks they should have accomplished, I want my kids to be able to look forward at what they want, and back on what they’ve had and done, and not be left wanting.[/quote]
    Live that way right now. Talk about savings plans and what they’re for. Be open about family budgets and spending. Talk about plans—for tomorrow, for next week, for next year, what might be good to be doing in five years—and how to make them happen, or how to weigh this plan against that and make a choice (or do both?), what steps to take and how much time to estimate for accomplishing this or that goal (from learning to snap fingers or whistle to putting on a Thankgiving dinner to becoming a graphic designer or film editor).

    Starting gun started with the birth day, I think.

    I’m also thinking: When is it time to let your child know it’s time to start dressing himself? Or is that something that a parent even has to do? Maybe it’s something that a child just starts doing—some earlier, some later. Some might benefit from a suggestion like, “Hey, you can do this for yourself, if you like. Here’s how the buttons work, if you care to try it. [and later] Here are some community college courses that might interest you, if you’re serious about that filmography idea. And here’s how you can find out about more such classes for yourself.”

    I dunno. I might see it differently in a few years, but just now I’m thinking that, rather than looking for a certain signal that now it is the time to introduce the idea of independent living, it’s more like a natural progression from day one.

    Oct 14, 5:18 PM —

Autism is a Trait

This is the third of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.

- - -- --- -----

Driving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, "Autism is a trait, not a debilitation." Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.

Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.

There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).

He is on posters, pamphlets and television screens all around the St. Louis region as one of the many faces of the United Way fundraising campaign this season.

Most people probably recognize Tyrin Rencher as the smiling young man in a red apron standing in the kitchen at Pasta Fare in Fairview Heights beneath the slogan: "Autism is a trait, not a debilitation."

Rencher, 27, of East St. Louis, has autism. He was diagnosed with autism at 2 1/2 years old and was enrolled in the Illinois Center for Autism in Fairview Heights when he was 3. He still receives services through the organization and was selected as a spokesman for the United Way campaign this year and as a spokesman for the Illinois Center for Autism.

The article also gives a bit of bit of Tyrin's history and what he's up to today (besides being a "celebrity"):

He is currently a junior at the University of Missouri St. Louis, where he is working toward a degree in business administration.

When talking to Rencher, a person quickly learns that he's a man determined to fulfill his dreams, in spite of the autism, and he is an example of the slogan over his head on the United Way posters.

"A lot of the stuff I planned is coming true and I'm speechless that it is all happening," he said. "I want to open up a restaurant with my degree. Something small, like (Pasta Fare.)"

He is thankful the Illinois Center of Autism was around when he was diagnosed when he was a toddler.

"Without them, I would be lost," he said. "I really wouldn't be in a position to go to college right now."

He is learning to live on his own for the first time, something that he sometimes finds difficult.

"But I'm learning, it's tough, but I'm trying to adjust to living on my own," Rencher said. "One of the things my family has taught me is perseverance, and I do that every day."

I love to see "good news" stories about autism, and this is one of the "goodest" I've seen in a while: it shows an autistic adult making his way in the world, it shows that an autistic person's dreams and life aspirations are just like the rest of ours, and it shows an organization dedicated to helping people make their way in the world AS THEY ARE instead of trying to fundamentally change them.

----- --- -- - -

Original comments:

#

AB | aoskoli.blogspot.com

That’s amazing. A mainstream organization like the United Way gets it right. That is so enormously encouraging.

Oct 6, 11:43 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Christschool |

If anyone is able to find the link to the United Way Campaign with the slogan mentioned, please contact me as I would love to make a video of this. I tried the wayback machine with the broken link but that didn’t work.

Oct 7, 12:17 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Ms. Clark |

Christschool, I don’t know if this was what you had in mind.

http://www.stl.unitedway.org/tyrin.aspx

http://www.stl.unitedway.org/logos.aspx

Oct 7, 12:52 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Ha! I almost blogged about this myself when I saw it. It is indeed a good thing, and I’m going to drop the local United Way a note with my donation this year.

I had to read it twice over, I was so surprised. An autistic adult going to college and getting real world training and experience. What’s not to like about that?

The only link that I found about this on the United Way site was here. I’ve seen the video that goes with this story once on TV, but couldn’t find the video on their site.

Joe

Oct 7, 12:53 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Ah! While I was cutting and pasting (incorrectly) Camille posted the link that I was going to.

Joe

Oct 7, 12:55 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Found it! Here’s the video that I saw:

http://www.stl.unitedway.org/2.....0_240.aspx

Oct 7, 1:24 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Ms. Clark |

Thanks, Club 166!

Oct 7, 2:12 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

suzanne | blogger.com/profile/02732095611947394379

Thanks for sharing this.

Oct 7, 3:19 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Kristina | autismvox.com

Hope to read more stories like this and not to feel surprised!

Oct 7, 5:20 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Luai_lashire | luai-lashire.deviantart.com

I don’t mean to belittle the united way campaign or the article, both of which are very good- but I really, really wish they hadn’t said “in spite of his autism”. It’s the only part of the article that I don’t like, which, compared to the rest of the media, is amazing. Like the other people here, I sincerely hope that this keeps going on and that we see more of this kind of thing! :)

Oct 7, 2:08 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Joseph | autismnaturalvariation.blogspot.com

Hopefully things like “in spite of his autism” will get phased out eventually. It’s really no different to saying “in spite of being black” or something of the sort.

Oct 7, 2:44 PM — [ Edit | Delete | Unapprove | Approve | Spam
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jypsy | therunman.blogspot.com

cached version of the link http://64.233.167.104/search?q.....=firefox-a

Oct 7, 4:59 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Gonzo |

Good point, Joseph.

Oct 7, 5:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
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cz |

If the United Way site is down:

http://www.stl.unitedway.org/2.....0_240.aspx

You can also see the video on You Tube:

http://www.youtube.com/watch?v=6yaTd4jGu48

Tyrin is the second story in the video.

Oct 7, 7:46 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

VAB | aoskoli.blogspot.com

In the spirit of letting people know when they are doing something I appreciate, I wrote to the media coordinator and thanked her. She wrote right back. Here is our email conversation.

———To: Carrie Zukoski
Subject: Autism is a trait – not a debilitation

Hi,

As a father of a child with autism, I would just like to say how much I
appreciate your publicity, featured here:
http://www.stl.unitedway.org/tyrin.aspx

which I heard about here: http://leftbrainrightbrain.co.uk/?p=687

These days, it is increasingly common to hear autism described as a horror when, in fact, it is as your publicity says, a trait and, in many respects, a very fine one. People need to understand that. Thank you for getting the message out.
——-
Thank you so much for your note. That really means a lot to us. And Tyrin is a great guy – it’s been fun to work with him through this!

I appreciate you sharing the link to the blog too. I will definitely share this with my co-workers.

Carrie

Oct 7, 8:59 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Elissa managingautism.com

We definitely need more good news stories

Oct 8, 11:03 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Kate Kromann stl.unitedway.org/tyrin.aspx

Good morning! Thanks for mentioning Tyrin’s article here. Unfortunately, you seem to have caught us during our Web site upgrade this past weekend! Tyrin’s story is indeed online, at this address now:
http://www.stl.unitedway.org/tyrin.aspx

The video is on YouTube, linked on CZ’s post above, and to watch it from our Web site, click the Harley photo on the left side of the page.

I think your point about “in spite of his autism” is a great one, Luai. We certainly made an effort in our stories not include phrases like that. But of course, we can’t control what they print in the media :-)

Thanks for blogging about this! Do you mind if we link to your site?

Kate Kromann
E-Communications Director
United Way of Greater St. Louis

Oct 8, 12:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Brett

Kate,

Please feel free to link to my post about Tyrin.

While I can’t really speak for the site as a whole, I don’t think there would be any objection from the Left Brain / Right Brain team if you linked to the site from the United Way’s site.

Brett

Oct 9, 1:38 PM — [ Edit | Delete | Unapprove | Approve | Spam

What autism is not

This is the second of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.

- - -- --- -----

As I mentioned in my last post, I am currently reading Steven Pinker's latest, The Stuff of Thought, an interesting (so far) exploration of the role language plays in human nature. In preparing to make an argument at one point, he starts off by saying the following:

To truly understand what something is you must understand what it is not. (His emphasis.)

This, of course, got me thinking about what autism is not. (It seems I can't read a book, or what a movie or TV show without finding some sort of connection to my thoughts about autism!) Here's a quick list, I"m sure I'll come up with more:

What autism is not:

• Devastation
• Train Wreck
• End of the world
• Caused by mercury poisoning
• Purely environmental
• Purely genetic
• Caused by MMR (or any vaccine)
• A curse
• Punishment from God (whichever one may be yours)
• A disease that can be cured
• Easy to live with
• Easy to explain to friends and family
• Easy to explain to siblings of autistic child
• Easy to explain to the autistic child
• A reason to kill your child

I know there are more, many more, but this is what comes to mind tonight as I head off to bed. What do you think autism is not? (And please, if you disagree with one I've put here let me know.)

----- --- -- - -

Original comments:

1.

Tired and want to go to bed |

autism is not

...a reason to experiment on your child.

...a reason to reject all authority

...a reason to blanketly accept some alternative authority

Sep 25, 5:46 AM — [ Edit | Delete | Unapprove | Approve | Spam
2.

666sigma |

That’s a pretty good list except you have no proof (one way or the other) regarding vaccines. If you do, pass it along.

Sep 25, 12:05 PM — [ Edit | Delete | Unapprove | Approve | Spam
3.

notmercury |

666stigma: “That’s a pretty good list except you have no proof (one way or the other) regarding vaccines.”

What sort of proof do you require?

Sep 25, 3:13 PM — [ Edit | Delete | Unapprove | Approve | Spam
4.

jon Mitchell |

as an autistic person i must disagree that autism is not a curse or a devestation. It has made my life difficult. Are you autistic, brett? If not, how can you know it is not a curse or a devestation

Sep 25, 3:30 PM — [ Edit | Delete | Unapprove | Approve | Spam
5.

Steve D | onedadsopinion.blogspot.com

Jon – I don’t want to put words into Brett’s mouth, but I think he is saying that autism itself is not experienced in a profoundly negative way (ie. ‘curse’, ‘devasatation’) by all autistic people, and that the media’s careless overuse of these terms leads many people to only focus on its most negative aspects. This is counterproductive to a healthy view of autism by society.

Notice that Brett’s list also states that
Autism is not … ‘Easy to live with’. This is an acknowledgment, in my view, of the difficulties an autistic individual experiences as a result of their differences.

Sep 25, 4:12 PM — [ Edit | Delete | Unapprove | Approve | Spam
6.

Uncle dave |

Whoa! Good point Jon.
I guess like everything else, it was written from a parental or loved one perspective rather than as a personal perspective on being the one with Autism.

Why isn’t there more perspective broadcast from the person with autism’s perspective?
There are lots of very high functioning (forgive me) individuals with autism out there that can more than adequately represent thier perspective as Jon has.
Clinical and diagnostic discussions are one thing , but I have only seen one nationally televised journalistic piece on autism from the afflicted persons perspective. TV piece was about a white female who looked to be about early 20’s appeared to be living on her own (probably assisted care of some sort), who communicated through text on the computer (could type like there is no tomorrow). Obvioulsy very high functioning, but once again, affected in a manner that greatly influenced her ability to communicate in a typical auditory and expressive manner. She discussed her perspective on communications, stimulas and how she viewed other people and world around her.
Very interesting…

Sep 25, 4:27 PM — [ Edit | Delete | Unapprove | Approve | Spam
7.

bullet |

Autism is not:

An excuse to pathologise every single little difference whilst at the same time denying help when people really need it.
The entire basis of a person.
Something that is wholly negative.
Something that is wholly positive.
Something that ensures everybody on the spectrum will behave in the same way, or that the way they behave is governed by their perceived functioning levels in various areas.

Sep 25, 4:55 PM — [ Edit | Delete | Unapprove | Approve | Spam
8.

np |

Most physicians will give you their OPINION and pose it as science.

Sep 25, 5:18 PM — [ Edit | Delete | Unapprove | Approve | Spam
9.

Joseph | joseph449008@hotmail.com | autismnaturalvariation.blogspot.com | IP: 190.10.205.17

That’s a pretty good list except you have no proof (one way or the other) regarding vaccines. If you do, pass it along.

Would a phone survey that found autism to be more common among unvaccinated children than vaccinated ones be good enough? How about one that found unvaccinated girls to have a rate of autism 15 times higher than that found in prior phone surveys?

Sep 25, 5:50 PM — [ Edit | Delete | Unapprove | Approve | Spam
10.

Brett |

Jon,

You make some valid points, and no, I am not autistic but a parent of an autistic son. Uncle dave is correct that this was written primarily from a parent’s perspective.

I would be interested to hear from you, and other autistics, what you think autism is not.

Sep 25, 11:45 PM — [ Edit | Delete | Unapprove | Approve | Spam
11.

jon Mitchell | jonathans-stories.com
okay i will oblige:

Autism is not a different way of being or alternative life-style, a different culture, autism is not something to take joy in and be celebrated. It is not something that society can magically accommodate and just make it “all right”.

Sep 25, 11:56 PM — [ Edit | Delete | Unapprove | Approve | Spam
12.

Kev |

Autism is not ‘just’ one thing or another. I think Jon is right and I think Brett’s list is right too.

Uncle dave – if you head to The Autism Hub you will find several blogs that are run by autistic people.

Sep 26, 7:06 AM — [ Edit | Delete | Unapprove | Approve | Spam
13.

tracy |

please help i have 3 year old autistic son and all this confuses me on how to help him

Sep 26, 3:38 PM — [ Edit | Delete | Unapprove | Approve | Spam
14.

Joseph | autismnaturalvariation.blogspot.com
Autism is not something that, if it were possible to take it away, would make everything “all right”. Hi Jon :)

tracy: You’ll get a lot of advise from a lot of people, some valid, some that can only be described as total claptrap. From my research, the most important advise I can give you is to never, ever, under any circumstances, place your child in an institution or a group home. This in itself won’t guarantee a good outcome, but it will at least make a good or fair outcome possible if not likely.

Sep 26, 3:54 PM — [ Edit | Delete | Unapprove | Approve | Spam
15.

bullet |

Hello Tracey :). My son is four, so pretty close to your son. If you like I could say some of the things that we’ve been doing to help him. Would that be alright?

Sep 26, 5:07 PM — [ Edit | Delete | Unapprove | Approve | Spam
16.

Ettina | geocities.com/ettinashee
Life isn’t ‘all right’. (But what life is not is a whole other matter.)

> The entire basis of a person.

I’d agree and add that autism is also not a minor, pheripheral feature that is unimportant to who the person is.
In the book Lifting the While Veil, the author says that we are all individuals, we are all human, and in addition we belong to various categories defining varying degrees of our own identities.
Autism isn’t who I am, but who I am isn’t separate from autism. I am an autistic individual, as opposed to a neurotypical individual, etc.

Sep 27, 5:28 PM — [ Edit | Delete | Unapprove | Approve | Spam
17.

Ettina | geocities.com/ettinashee

My biggest advice for Tracey is – listen to your child. Even if he can’t talk, his behavior tells you things. Advice from others is only helpful inasmuch as it helps you better understand your child.

Sep 27, 5:30 PM — [ Edit | Delete | Unapprove | Approve | Spam
18.

bullet |

I’d agree and add that autism is also not a minor, pheripheral feature that is unimportant to who the person is.
“In the book Lifting the While Veil, the author says that we are all individuals, we are all human, and in addition we belong to various categories defining varying degrees of our own identities.
Autism isn’t who I am, but who I am isn’t separate from autism. I am an autistic individual, as opposed to a neurotypical individual, etc.”

I agree

Sep 27, 6:28 PM — [ Edit | Delete | Unapprove | Approve | Spam
19.

katia |

WHAT RIGHT DOES JENNY MCCARTHY HAVE TO GO AROUND AND SAY SHE HAS CURED HER SONS AUTISM
SHES SAYS IT HAS TO DO WITH DIET AND VACCINATIONS SHE’S NO DOCTOR …....

Sep 27, 11:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
20.

666sigma |

Joseph,

The GR study had obvious bias, but to draw your conclusion, you have to mix apples with oranges. Within their study, it showed autism was higher among the vaccinated.

It would be interesting to see a real study comparing the rates of autism (and other LD’s) among the vaccinated and the unvaccinated. GR study is flawed, but probably no more so than most of the so called “scientific” studies.

The CDC will avoid doing a study like this at all costs so I won’t be holding my breath waiting for one.

Sep 28, 9:41 AM — [ Edit | Delete | Unapprove | Approve | Spam
21.

Kev |

“Within their study, it showed autism was higher among the vaccinated.”

What study was this?

Sep 28, 10:51 AM — [ Edit | Delete | Unapprove | Approve | Spam
22.

Kev |

Oh wait Siggy – did you mean the GR phone poll? You – the self professed statistician – consider that a study do you?

The one that showed amongst older kids (as GR specified)

Ages 11-17, all kids:
Aspergers (unvaccinated): 1%
Aspergers (full vaccinated): 2%

Thats a difference of 1%.

PDD-NOS (unvaccinated): 1%
PDD-NOS (full vaccinated): 1%

autism (unvaccinated): 2%
autism (full vaccinated): 2%

ASD (unvaccinated): 3%
ASD (full vaccinated): 3%

Could you maybe lend your statistical expertise to explaining the statistical difference between 1% and 1%? Many thanks genius.

Sep 28, 11:01 AM — [ Edit | Delete | Unapprove | Approve | Spam
23.

Joseph | autismnaturalvariation.blogspot.com

Within their study, it showed autism was higher among the vaccinated.

Sigma, you obviously are unfamiliar with the results of the GR survey.

Sep 28, 12:20 PM — [ Edit | Delete | Unapprove | Approve | Spam

Autism and "I"

Not that long ago, Kev Leitch converted his Left Brain / Right Brain blog into a team blog. I had been considering shutting down 29 Marbles and stopping blogging, but decided to take Kev up on his offer. That way, I could continue to post very intermittently without feeling the pressure of trying to keep a site up on my own.

Unfortunately, Kev has since shut down the blog (as you will see if you click the link above to LB/RB). To maintain some continuity and a record of my posts, I've decided to republish them here. This is the first of four posts I published at LB/RB.

- - -- --- -----

Earlier this summer I read Douglas Hofstadter's new book, I Am a Strange Loop. As Hofstadter mentions early in the book, a more appropriate title would have been "I" is a Strange Loop; the book is about the nature of consciousness, that elusive concept of "I", and not an autobiographical work as the actual name of the book suggests.

Hofstadter's works have been among my favorites since I read his first book, Godel Escher Bach: An Eternal Golden Braid, in high school. The new book is, in fact, an updating of the ideas he first expressed in GEB. I have long hoped that he might address issues of the mind and consciousness in terms of atypical minds (such as autism), but aside from some passing discussion of those minds, I Am a Strange Loop does not provide any real insight into how the concept of "I" fits with autism.

On Monday, I was pleased to find a paper that specifically addresses the question of autism and "I", Self-Referential Cognition and Empathy in Autism, co-authored by Michael V. Lombardo, Jennifer L. Barnes, Sally J. Wheelwright, and Simon Baron-Cohen. From the paper's abstract:

Background. Individuals with autism spectrum conditions (ASC) have profound impairments in the interpersonal social domain, but it is unclear if individuals with ASC also have impairments in the intrapersonal self-referential domain. We aimed to evaluate across several well validated measures in both domains, whether both self-referential cognition and empathy are impaired in ASC and whether these two domains are related to each other.

Conclusions/Significance. We conclude that individuals with ASC have broad impairments in both self-referential cognition and empathy. These two domains are also intrinsically linked and support predictions made by simulation theory. Our results also highlight a specific dysfunction in ASC within cortical midlines structures of the brain such as the medial prefrontal cortex.

Instead of looking at autism as a syndrome of self-focus (the Kanner approach), the paper starts from the concept of "absent-self" put forth by Uta Frith in her book Autism: Explaining the Enigma. I had not heard of Frith before reading this paper, so I can't really comment on her ideas. But the paper itself seems to make sense. I'm still going through it, trying to understand all that they are studying and what their results mean. (I did learn a new word: alexithymia - difficulty identifying and describing one's own emotions.)

My first time through I Am a Strange Loop was to soak in the big concepts. I typically wait a few months before re-reading something like this so I can get into the details, but I think I'll start again sooner than that. (At the moment, I'm reading Steven Pinker's latest book The Stuff of Thought.) Now that I have a bit more information about autism and "I", I'll have a better context for processing what I read.

Another interesting note about the paper, it was originally published by the Public Library of Science under a Creative Commons license. The PLoS home page describes it as a "A new way of communicating peer-reviewed science and medicine", so I will assume the paper has been appropriately peer reviewed. But I think I will do a bit more checking just to be sure. (Of course, any insight from readers here would be greatly appreciated.)

Autism and the "complex social environment"

Mike Stanton's post Of mice and men and autistic fruit flies includes the following criticism of an autism related study using fruit flies:

But autistic fruit flies? Autism is a complex social disorder. Fruit flies are not complex social beings.

My first thought was, if autism is a "complex social disorder" it is only because we live in a complex social environment. In the comments, Amanda disagrees with Mike that autism is a social disorder at all, and I think I agree with her.

True, autism is measured against the "norms" of the complex social environment in which we live, but the "condition" of autism exists independently of those norms. If those norms didn't exist, or if our social environment was different, those who are autistic in our world would still be autistic in this alternate world.

Mike's commentary also includes a passage with which I wholeheartedly agree:

They showed diminished social interaction but improved cognitive performance compared to neurotypical mice. This is automatically seen as a deficit. But surely progress is driven by those individuals who turn their back on the herd and consider the external world?

Kristina Chew also has some thoughts on the studies, and Mike's post, in her post Can Animals Have Autism?

The so-called autism epidemic is just a conspiracy theory. Or is it?

In The lure of the conspiracy theory (subscription required, full article here), author Patrick Leman discusses some thoughts on the nature of conspiracy theories and why people believe them (or don't). I learned of the article from the blog Schneier on Security, in which Schneier excerpts some key points.

From the perspective of an autism parent, and my discussions with others on the subject, this paragraph jumped out at me the most (emphasis is mine):

To appreciate why this form of reasoning is seductive, consider the alternative: major events having minor or mundane causes -- for example, the assassination of a president by a single, possibly mentally unstable, gunman, or the death of a princess because of a drunk driver. This presents us with a rather chaotic and unpredictable relationship between cause and effect. Instability makes most of us uncomfortable; we prefer to imagine we live in a predictable, safe world, so in a strange way, some conspiracy theories offer us accounts of events that allow us to retain a sense of safety and predictability.

Though I hesitate to make the comparison to the need for religion, believing in a conspiracy theory model for something like autism seems to fulfill much the same need in people: the need for life, and what happens in it, to have a meaning, if not a purpose.

A couple of other interesting paragraphs:

Other research has examined how the way we search for and evaluate evidence affects our belief systems. Numerous studies have shown that in general, people give greater attention to information that fits with their existing beliefs, a tendency called “confirmation bias”. Reasoning about conspiracy theories follows this pattern, as shown by research I carried out with Marco Cinnirella at the Royal Holloway University of London, which we presented at the British Psychological Society conference in 2005.

The study, which again involved giving volunteers fictional accounts of an assassination attempt, showed that conspiracy believers found new information to be more plausible if it was consistent with their beliefs. Moreover, believers considered that ambiguous or neutral information fitted better with the conspiracy explanation, while non-believers felt it fitted better with the non-conspiracy account. The same piece of evidence can be used by different people to support very different accounts of events.

This fits with the observation that conspiracy theories often mutate over time in light of new or contradicting evidence. So, for instance, if some new information appears to undermine a conspiracy theory, either the plot is changed to make it consistent with the new information, or the theorists question the legitimacy of the new information. Theorists often argue that those who present such information are themselves embroiled in the conspiracy. In fact, because of my research, I have been accused of being secretly in the pay of various western intelligence services (I promise, I haven’t seen a penny).

It is important to remember that anti-theorists show a similar bias: they will seek out and evaluate evidence in a way that fits with the official or anti-conspiracy account. So conspiracy theorists are not necessarily more closed-minded than anti-theorists. Rather, the theorist and anti-theorist tend to pursue their own lines of thought and are often subject to cognitive biases that prevent their impartial examination of alternative evidence.

How then can we predict who will become believers and non-believers? My hunch is that a large part of the explanation lies in how individuals form aspects of their social identities such as ethnicity, socioeconomic status and political beliefs. The reasoning and psychological biases that create believers or their opposites are fostered by social origins. For conspiracy believer and non-believer alike, there is a kind of truth out there. It’s just a rather different truth that each seeks.

Reading through this, I've come to understand better one of the reasons that I don't post as much as I used to, or participate in various autism related forums more. Most people have already set their opinions, and are not likely to change them based on anything I, or anyone else, has to say. I'm sure that I am as guilty of this as other people, though I do believe that my opinions and beliefs in this area are somewhat flexible.

I only have to look back at the early days of this blog to see how my opinions have changed. When was the last time your views on autism, its causes, its nature, and its future changed?

For what it''s worth, Einstein was...

...not autistic, at least not in my mind. Alas, I do not have an answer of my own to offer to the question of "Does it matter?" If you were to press me, I would say that it doesn't matter if it matters to me, it depends on whether or not it matters to you.

We all have our own point of view, and the answer to this question is - yes - relative to that point of view. Several people commented to my post Was Einstein autistic? Does it matter?. I encourage you to read those to get an idea of the answer from some diverse points of view (parents, autists, anonymous anti-autistic fundamentalists).

Was Einstein aloof? Yes. Emotionally distant? He could be, but wasn't always. Obsessive? I'd say passionate.

In the comments to that previous post, Joseph questioned Einstein's view toward his mentally ill son, Eduard. Here's what Isaacson had to say:

Eduard was unable to keep his balance. He began cutting classes and staying in his room. As he grew more troubled, Einstein's care and affection for him seemed to increase. There was a painful sweetness in his letters to his troubled son as he engaged with his ideas about psychology....

"Tete [Eduard's nickname] really has a lot of myself in him, but with him it seems more pronounced," Einstein conceded to [his first wife] Maric. "He's an interesting fellow, but things won't be easy for him."

It is true that Einstein did not see Eduard much as he grew older, and spent more and more time in institutions. As Isaacson puts it, Einstein "simply walled [Eduard] out when the relationship became too painful."

Sounds pretty normal (god, I hate that word) to me.

- - -- --- -----

Has autistic intelligence been underestimated?

Has autistic intelligence been underestimated through the years? I think many of you know what my answer is going to be (YES! of course), but I actually have a scientific study that backs up that claim that I (and many others) have known all along.

I discovered the study, entitled The Level and Nature of Autistic Intelligence (available online through the journal Psychological Science, on the Autism pages of About.com in the article Once Again, the World Discovers That People with Autism are Bright but Different. There is also a discussion of the study on the Science Daily website.

The study was written by Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, and Laurent Mottron. Here's the abstract of the paper:

Autistics are presumed to be characterized by cognitive impairment, and their cognitive strengths (e.g., in Block Design performance) are frequently interpreted as low-level by-products of high-level deficits, not as direct manifestations of intelligence. Recent attempts to identify the neuroanatomical and neurofunctional signature of autism have been positioned on this universal, but untested, assumption. We therefore assessed a broad sample of 38 autistic children on the preeminent test of fluid intelligence, Raven's Progressive Matrices. Their scores were, on average, 30 percentile points, and in some cases more than 70 percentile points, higher than their scores on the Wechsler scales of intelligence. Typically developing control children showed no such discrepancy, and a similar contrast was observed when a sample of autistic adults was compared with a sample of nonautistic adults. We conclude that intelligence has been underestimated in autistics.

Unfortunately, you must be a member of the Association of Psychological Sciences to get the article from their website. Another option, the one I'm pursuing, is to get a copy from your local public library (or school library, if you are a student).

I should have it in a couple of weeks, I'll post more thoughts once I've actually read it.

Sun Tzu and the Art of the IEP`

As a young Army officer, I read Sun Tzu's Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu's demonstration of leadership ability using the Emperor's concubines as soldiers.)

The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:

Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.

Of course, this may need some translation* into more relevant wording. Such as:

Know the district administration and their stated goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.

When you are ignorant of what the district's goals or resources are, but know your rights and your child's needs, your chances of getting what you need in the IEP are 50/50.

If you are ignorant of both the district's goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.

Of course, this important piece of advice can just as easily be translated into the school district perspective, I'll leave that exercise to you.

Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their "enemy." As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.

What would happen if both sides heeded this advice and came in knowing themselves and the "enemy"? According to Sun Tzu, both should expect to win. But both sides can't "win", can they?

To that I answer a resounding, "Yes, of course both sides can win." Wouldn't that be a nice change?

* (If you are interested in some thoughts on translation within a language, check out my post Knowledge in Translation on my No Straight Lines blog.)
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Was Einstein autistic? Does it matter?

When I started reading Walter Isaacson's new biography of Albert Einstein, one of the first things I did was look in the index to see if autism or Asperger's was listed. No on both counts.

As I've read the book, I've found myself unconsciously evaluating the information presented through a diagnostic lens, trying to decide if he was indeed autistic. (See this Google search for a lot of discussion about the topic.)

I'll post my thoughts on the matter after I've finished the book and had the chance to digest it all, but in the meantime the following question came to mind:

Does it really matter if Einstein were autistic or not?

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Autism dads and IEPs

Last summer in the post "Men must attend IEP meetings", I quoted Charles Fox of the Special Education Law Blog on the important role men can (should) play in the IEP process. With the beginning of the school year and IEP season looming, I felt it appropriate to reprint Fox's quote:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that 'men must attend meetings.' [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.

What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.

This post was brought back to mind for me by the blog post Gender Bias and Autism Dads at About.com:Autism -

Have you ever been treated like a second-rate member of an IEP or school meeting? Of course, right? But how about a second-rate parent? Have you ever had to say, “Umm, I’m here too” or “Hey, I’m also the parent” when the faculty (in my case, all or predominately female) ignore you completely and speak to the other parent without acknowledging your existence. Or even worse, have you ever endured the cruel “Dad” jokes, when these so-called professionals assume the mother does all of the dirty work (cooking, cleaning, shopping, taking care of the child, therapies, researching, fighting school districts, etc.) while you escape to the normalcy of your 9-5?

Fortunately, I've never had to endure this. The IEP teams we've worked with over the years have all been true professionals, treating us as equals in the process. If anything, most were pleased to see a father taking such an interest. (Of course, it has helped that through the years I've had jobs that gave me the flexibility to attend.)

To be honest, I've had a more difficult time trying to be an involved father in the PTO's of my non-autistic son. I seem to be the only father that the mothers had ever seen express an interest in being part of the PTO. This made for some interesting, sometimes uncomfortable initial meetings as they tried to figure me out. (It took me a while in one group to get them to stop calling me Mr. Miller!) Eventually, I became just one of the gals (in a manner of speaking ;-) ).

I know that, statistically speaking, mothers tend to be the primary care givers and the ones who must work through the IEP process and all that it entails. I also know that divorce rates among parents of autistic children are high, again with mothers typically (not always) the ones who must take care of the autistic child. *

But I'm here to tell you - and I know a few guys out there who will back me up - that autism dads are here, and we care, and we'll let our IEP teams know that we're here and we care if they try to ignore or marginalize us.

* On the subject of autism divorce, check out First National Program Launched to Combat Divorce Rates in Autism Community in Medical News Today and the Family First page on the NAA site.
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Canaries in the coal mine

If you ask Dr. Bryan Jepson he will tell you why he thinks the "new" autism is different from the "old". As a medical doctor (now a Director of Medical Services) and parent of a young autistic son, Jepson has been doing some research lately and has come up with some (not always so) new ideas. Here are some excerpts from a story in the Deseret News (Utah) about Jepson and his new book Changing the Course of Autism: A Scientific Approach for Parents and Physicians:

Soon he was convinced that autism is a complex metabolic disease that has as much to do with the gut as it does with the brain.

It's an epidemic, he says, "and there's no such thing as a genetic epidemic."

At the same time, the "new autism" is less likely to show up within the first six months or year of a baby's life, and is much more likely to be "regressive," showing up at 18 months to 3 years to rob the child of previous skills — sometimes almost overnight, sometimes as a gradual decline.

There's a genetic susceptibility for autism. But something else has to explain the sudden rise in numbers — and it's not simply a matter of better diagnosis or a broader definition of what autism means, he says.

The answer appears to have something to do with the increased toxicity of the environment, he says, from food additives to vaccines and antibiotics. Children who are born with a genetic susceptibility for autism have trouble detoxifying, he says.

The increase in other chronic diseases such as asthma is evidence that autistic children may also be proof of what's to come, he says. "It's kind of like the canary in the coal mine." (my emphasis)

I know a lot of parents have turned to diet as a treatment for autism, but I don't know how many of them take it as far as Jepson does:

Calling autism a behavioral disorder, says Jepson, is like calling a tumor a headache. Instead, he says, autism is just one symptom of a disease process that affects the digestive, immune and neurological systems.

The majority of children with autism have gastrointestinal problems, sometimes causing severe pain. Their tantrums and head banging may be a manifestation of pain they can't articulate, Jepson says. If the gut disease is treated — with diet, nutritional supplements and medication — that behavior goes away.

The benefits of changing diet and the question of whether stomach issues are a cause of autism or simply a co-morbidity have been discussed ad nauseum over the past several years in the blogosphere, as well as other books addressing. The reviewers on Amazon seem to love it (7 reviewers, average rating of 5 stars), but I wonder if they really found it that good or if it was just something that justified an opinion they already had.

I'd be interested to know (without having to read it, my list is already too long), if this book brings anything truly new to the debate. (Aside, of course, from the obvious belief that autism is a symptom of something else and not a condition of its own.)