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.

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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?

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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.

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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.

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Original comments:

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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
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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
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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
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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
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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
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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
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Ms. Clark |

Thanks, Club 166!

Oct 7, 2:12 AM — [ Edit | Delete | Unapprove | Approve | Spam
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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
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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
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Elissa managingautism.com

We definitely need more good news stories

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

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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.)

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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.)