seebert's blog

At least in the past year.  Susan Levy has written the best blog posting I've seen yet at:

http://www.autismsupportnetwork.com/news/community-and-autism-29300231

On both the trials and tribulations of attempting to form a community between autistic parents and autistics themselves.

97% of adult autistics need some form of governmental or family support; but 3% don't, and that 3% makes up the neurodiversity community.

Susan gained my respect in this article by mentioning that many of even those 3%, were low functioning prior to the age of 10 (and I personally know of at least two case studies that were low fundtioning prior to the age of 40, but are now using techonology to make movies!).

John Elder Robison has the best perspective on this that I've ever read:  The real difference between low functioning and high functioning isn't language, it's competence and ability to communicate that competence effectively regardless of language difficulties.  A small amount of competence, for neurotypicals, covers up a multitude of autistic sins.

I just canceled an account whose only post was talking about mechanical watch repair.

So I wanted to make my personal rule plain.  Due to the amount of spam on this site that I have to cancel daily, all posts MUST somehow relate to the purpose of the site.  You may advertise goods and services that the autistic or parents of autistics community might find useful, but fashion makes no sense to autistics and simply doesn't belong here.  That includes adverts about clothing, cosmetics, and hair products- post them here and I will cancel your account and delete all your posts.

However, here's one loophole for you.  If you ARE autistic, have an obsession, and can relate that obsession to your experience of being autistic, I don't care what you post.  I'm autistic myself and I understand that compulsion.

Posts that are in doubt, I will comment on and give you 24 hours to relate the conversation to autism.  Fail to respond in that 24 hour period, and you're gone.

I'm getting busy with other pursuits, so is the site owner.  But I don't want to see our spam filter busted with non-autism related posts.  So here's a method I'd like to try, but I need help from everybody who reads this site for autism news.

I have yet to try accessing this site from my phone, but one of my autistic obsessions is that I respond to e-mail quite quickly- less than a five minute turnaround when I am awake.  So I would appreciate it if you see a spam posting on this site, shoot me an e-mail at seebert42@gmail.com , with the URL of the potentially offending article.  I will examine it right away, and if the posting has nothing to do with autism (and they usually don't, that's the criteria I have been using on this site for moderation) I will take it down as soon as possible and cancel the account that posted it.

I am hoping that if I get better than my current 24-72 hour canceling of spam, that the people running the spambots will remove our site from their scritpts.  It is a faint hope indeed, but I don't know what else we can do.

Just ran across this neat blog:
http://carlysvoice.com/home/

Carly is now 14, I believe.  She did not communicate until she was 11, and only communicates by typing (one fingered typing at that).  But she shows what is likely hiding behind the silence of low functioning autism.

Before anybody comes up with any of the standards- Carly does NOT do fascilitated typing.  She types on her own, with nobody around her, and while her grammar is a bit strange (either that, or her Canadian Accent is coming through) she does write fluently.

It's old.  Many of the links are broken.  But this old joke site, written by autistics for autistics, taught me more about how my own mind works than anything else I have ever read.

http://isnt.autistics.org/

I don't think it has been updated since 2001, but everything in it is still relevant.  Too bad the online self-test isn't working anymore:  I used to score 10/10 "Normal autistic" on it.

Spam, Spam, Spam, Spam, Spam Eggs and Spam.  There is just something about my OCD that gets triggered when people spam a support blog like this one.  So if you've come here to check on your stupid advert for sunglasses or miracle creams or whatever, that's the reason your account has been disabled and your content deleted.

As an asside, Tony, ran into somethine weird doing this today- I was able to cancel a spammer's account just fine, but when I went to post this, I ended up logged out and had to log back in before I could create a blog posting.

Which seems to be a bit of a bug.

At any rate- The Archdiocese of Portland "Journey Together In Hope" camp is on again for this year at the end of August, beginning of September.  English and Spanish weekends are offered.  This is a family retreat with it's main purpose being to get people with developmental disabilities to communion and Mass at least once a year.  Non-Catholic family members who want to support a disabled person are welcome.  Contact Dorothy Coughlin for more info.

I was recently once again accused of giving false hope in this community, so I figured I'd explain myself a bit.

I am well aware that 97% of autistics end up institutionalized to some degree- either living on welfare, homeless, or in actual institutions.

I am also well aware of the problems that families face.

But I've also done some research into the other 3%, the success stories.  People like David Paravincini, who is blind and profoundly autistic:
http://www.bbc.co.uk/news/entertainment-arts-15086761

Or Donald Triplett, Kanner Case #1, who grew up in the 1940s and 1950s:

http://www.theatlantic.com/magazine/archive/2010/10/autismand8217s-first-child/8227/

Or famous people like Temple Gradin and John Elder Robison who have written books from their experiences.

Or these students, who may one day be famous painters:
http://artwithoutboundaries.net/ASDgallery.html

Not a single gene by any means, but apparently certain groups of genes can interact to cause autism.

Smart person readable article here: http://medicalxpress.com/news/2012-05-genetic-disrupted-autistic-brain.html

Really smart biochemical engineer white paper here:  http://www.plosgenetics.org/article/info:doi/10.1371/journal.pgen.1002556

What special needs parent dealing with wandering issues does not know this scenario?  A child breaks away from you in a crowd, and quick as a wink, hops some form of mass transit, to be whisked away who knows where.

http://blog.oregonlive.com/myoregon/2012/05/parents_of_kids_with_autism_ha.html  This article tells such a story and then provides links to several resources to help with this issue, from forms you can file ahead of time with the local police, to a rather local Police Data System (which really should be in any major city by now, check with your local police department).  Don't wait for your child to wander- you know this is a problem with autistics- plan ahead.

We've had a lot of cure postings lately, and I think it's wonderful that we're finding new coping skills and new biochemical methods for reducing the physical pain that is so often the hidden cause of autistic behavior.

But I thing a warning is in order.  It's an observation from outside- a high functioning autistic's view of neurotypical society.  And for full disclosure- I wasn't diagnosed until I was 30.

Asperger's, like other minor mental illnesses, is sometimes called an invisible disability.  We high functioning people seem so smart, at least in our narrow interests, that it's hard for the neurotypical to know right off that there's something off about us.  Oh, they'll get clues eventually - little things like the lack of eye contact during a conversation, a stimming behavior that is unnoticeable at first but eventually wears on the nerves, behavior that other people deem "inappropriate" with no clue to the autistic as to why it is inappropriate.  But in between, when there is no knowlege that the person you're talking to is disabled, is when bigotries against mental illness take hold.