March 31, 2012

The very short life of a diagnosis

I came across this article The short life of a diagnosis by Dr. Simon Baron-Cohen.  How true that to cut Asperger's off as a diagnosis is a bit hasty.  But it appears as though that will be the case in the DSM-V

It seems bizarre that they'd be so short-sighted as to ignore that there are differences.  Just because definite answers haven't been found, as of yet between High Functioning autism and Asperger's syndrome.

March 30, 2012

A great book School Success for kids with Asperger's syndrome

Just reading (I have a stack of books I'm working through) School Success for kids with Asperger's Syndrome by Stephan M. Silverman, and Rich Weinfeld.  So far it's great.  Very detailed into how to determine if your child has Asperger's.  You essentially must get a professional to diagnose the child.  Simply saying "he's very intelligent but can't relate well to other kids" isn't enough, in other words.  They have a list of myths in the diagnosis of Asperger's syndrome.

These are, as yet, unproven

- all persons with AS can be identified by their stronger verbal than performance IQs.
- all persons with AS have above-average intelligence
- people with AS all want to communicate with others but don't know how
- people with AS don't want to communicate with others
- all "nerdy" people have a touch of AS
- AS and "high functioning" autism are one and the same
- autism is a perfect spectrum or continuity of symptom intensity and frequency
- a high number of autistic symptoms rules out functional capacity in persons with AS or other forms of autism
- persons with AS have higher adaptive abilities than persons with high-functioning autism

They go into why it is so important to get an early diagnosis.  AS is a unique way of seeing, interpreting, coping with and acting in the world.  Because it is hard-wired into the person, the diagnosis helps to direct parents and teachers to lifelong interventions appropriate to the condition.  Failure to identify these special needs may doom the child to being misunderstood, and classified wrongly as being openly defiant and misbehaving in class.  When it's not his/her fault at all.

Then they go on to say strategies:  work with the school and teacher to strengthen the child's assets.  If they can read off the charts and can't write, give them oral presentations to do, in other words.  Work towards the child's strengths always.  This gives the child an immense feeling of satisfaction and rewards good behaviours.  If they must do written work, frequent check-ins and modifying the work load is necessary.  A personal teachers-aid is highly suggested, as well.

I'll write more about it tomorrow, as I'm not done the book, as of yet.  But really worth reading, if your child has Asperger's syndrome.

The art of mothering is to teach the art of living to children. Elaine Heffner

March 29, 2012

Rise in Autism rate to 1 in 88 kids

So, yes, big news today in the Autism world Boston news report 1 in 88 kids has some form of ASD - Autism Spectrum Disorder. I think it's due to better diagnosis of it, personally. I don't believe in the vaccines causing autism link at all.  The one study that said that it did was proven to be falsified.

As far as the diet issues causing autism-like symptoms, yes, that has to be addressed.  But as far as causing this high rise?  I don't think it's all dietary caused.  Some theories/studies say that wheat or milk allergens can cause autism behaviors to the point of not talking, not communicating, at all.

Asperger's was only put in the DSM-IV in 1995.  From there, it took a few years for doctors to pick up on it as being a valid diagnosis.  Girls are harder to pinpoint than boys (less obvious symptoms).  So it's only been in the last 5 to 10 years basically that Asperger's in girls has become noticed. So, that's my feeling:  just better diagnosis of autism in general.

I should note that the DSM-IV is the standard text used in all mental health professional offices. http://allpsych.com/disorders/dsm.html Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV)

There will be a fifth edition coming out very soon, and Asperger's is said to be submerged within Autism, and just called "high functioning Autism", with no separate title accorded to it. This is the page dedicated to the proposed changes in the Fifth edition. http://en.wikipedia.org/wiki/DSM-5

March 28, 2012

My daughter has a very annoying habit

Dear Sarah has a very annoying habit.  That is common in Aspies.  That is to fiddle with or touch something incessantly until she either rips it apart or works a hole in it.  She's wrecked about 3 sweaters/hoodies in the last year.  By constantly picking at the stitching in the sleeve area and making a gaping hole.  Then the hole gets bigger and then she tears off the cuff.  So embarrassing and annoying!  I'm a very lousy sewer and can't fix the holes (too big).  Argh!

I don't have this incessant picking at things obsession.  My tic is more having a constant stream of words flowing from my brain.  A feeling of pressure that I have to get the words out somehow.  So typing them out on a blog is an excellent way of getting them out there.

Hope you have a nice day :)

Knowledge is the only instrument of production that is not subject to diminishing returns.  John Clarke

March 27, 2012

Reading "My Life with Aspergers"

I'm currently reading "My Life with Asperger's" and not enjoying it much. I mean it's nice to read another person's story, and interesting.  But the way that she's chopped up her little story?  Not enjoying that much. She starts out with detailing her trip from childhood and moving a lot to her diagnosis. Then goes back again to talk about the chronology of her jobs.  Then goes back to talk about sexual abuse here and there. Then talks about her schooling.  Then comes mention of her various brushes with the law along the years. Very very chopped up.

To make an analogy, it's as though there are onions (her symptoms), green peppers (her work) and red peppers (her sexual abuse), and throw in some purple cabbage in there (her schooling) and just mix them all up on the cutting board.  All jumbled one story within another.  Very very hard to keep track of where she is, what age she was.

 Frankly I think I could do a better job of it.  I'd lay it out chronologically, building to the age of 44 when I was diagnosed with AS. With the bipolar thrown in there.  I'd like have to self publish, and probably would lose interest in writing.  But anyhow, that's my opinion.

I have no idea if I could actually write a book. I should probably try to get something down.  I've done enough crazy crap in there to make it interesting to someone.  I do find my mind is a bit freer and I'm better able to get a flow of words out.

Have a great day all :)

 Anger is never without Reason, but seldom with a good One. Benjamin Franklin





March 26, 2012

Leonard Nimoy's birthday today

It's "Spock's" birthday day - really Leonard Nimoy. So if you're on Twitter send him a happy birthday message at #TheRealNimoy He's gotten lots so far.

Yeah, Spock like - Asperger's people are like that.  Fact driven folk who have little time for society's rules on delivery modes.  Also known as bluntness without the sugar coating of tact that society seems to demand, in order to be polite.

I'm much more fact based than most women I think. I don't tend to think of flowery compliments.  I'm blunt, honest, forth-right and say what I think/mean without much censoring. I try to be polite but I'm sure it doesn't come across as I'd like it to.  I've probably hurt some peoples feelings over it.  Oh well, that's water under the bridge, I guess.  Just have to try harder to be nice all the time.

How do any of you out there feel about Spock?  Do you feel he represent an Asperger syndrome person?

March 23, 2012

Freeing my mind

I like freeing my mind.  I'm taking slightly less of the Zeldox - only one 20 mg pill per day.  It's freed my mind considerably.  Yes, I've got more to say, as you can see on here, and on my google+.  Yes, it's annoyed some people.  But it feels good to talk via virtual paper.  Helps me get out some of the angst in there.

Something that I thought about and want to write about.  Social anxiety. I have it and don't acknowledge it. An invite to a coffee gathering and chat has caused me to alert the flight or fright complex. I'm just vocally expressing this now.  Coming to realize that it's normal in Asperger's people.  I feel slightly crazy that I'm afraid to go talk to some people at a friendly gathering.  But it means I have to suit up with my social suit on, and behave myself, carefully.  Not talk too much, too loudly, too many opinions. Staying at a normal level. It's work essentially. 

Social anxiety isn't fun to deal with. I like to think of myself as warm, open, lovely.  I try to be all of that.  But it's hard when deep deep down you're scared of being rejected again.  Laughed at, openly.  I know that won't happen but it's there,  The scars from that happening in high school.

I hope this helps me explain myself a bit better.

Stay happy and joyful.

Don't bother just to be better than your contemporaries or predecessors. Try to be better than yourself.  William Faulkner


March 22, 2012

A second view of learning disorders

This is a very interesting talk about a 2nd view on learning disorders.  Moving past the simple observation of behaviours and diagnosing on that basis alone.  But instead looking into the brain with EEG

TED talk

Well worth the watch.

Don't have much else to say today :)

March 21, 2012

Thinking about war

Just thinking about the war going on between the liberals and the bureaucracy.  How it's impossible to hold a peaceful demonstration now without the police being involved.  So sad.  Where did our freedom go? Taken away by laws meant to protect us.  In Canada, it's not as bad as the U.S.  We still have the right to assemble and protest peacefully, as set out by the Canadian Charter of Rights and Freedoms.

Getting rather off topic on this blog, sorry. As far as bipolar goes, I'm doing okay with it.  Stable, happy, good moods, not too much in the mood swing department.  Life is good :)

Where Asperger's is concerned, I'm reading up on it a lot on the web.  Always informing myself of the views of others.  I'm currently working my way through the articles on Wrongplanet.net

I'm sure I'll find something to post here that I've found of interest.

March 19, 2012

A new heroine

Okay, I'll admit it, I have a new heroine.  It's Mayim Bialik her website  She plays the part of Amy Farrah Fowler on "The Big Bang Theory."  Why do I admire her so?  Because she's so open about her choices of parenting.  Because she's written a new manual on how to do Attachment Parenting. Beyond the Sling  It's lovely to see a famous person talking about it.  As far as famous goes, I'd say that she qualifies.  Someone who's seen by millions of people.  I love that show by the way.  Love how Sheldon so personifies those of us that are "odd" meaning outside the boundaries of "normal".  He is great.  So glad to see his work being recognized with awards.

I really admire Mayim for her talking out on this subject of attachment parenting. To break down the barriers that it's not odd to want to carry your baby in a sling.  To be there, answer their crying with attention.  To sleep with your baby because it just feels right.  To answer the critics that says it's like sleeping with a butcher knife in bed with the baby.

For me, I loved sleeping with my babies.  Made breast feeding so easy.  When they needed it in the night, I'd just roll over and they'd feed and I'd drift back to sleep.  So simple, so natural.  I feel sorry for those that felt that it was necessary to wake up fully, go and pick up the crying child and sit in a rocking chair to feed them.  Staying awake long enough to finish the feeding.  Then standing there, waiting while the child fell asleep   No wonder they are sleep deprived.  I never felt sleep deprived.  Not trying to imply anyone is wrong here, just stating what I feel. The lady that I had for help with breast feeding said that she felt it was good to sleep to sleep with baby.  So, I took that on board and ran with it.  Did that, although I had a crib set up.  We never used the crib, hardly ever.  Sometimes I'd lay the baby in there to sleep, but rarely.  When Sarah was a toddler, we had a toddler bed set up in the same room.  She'd lie on it for naps.  But often we'd take naps together after a story or two.

What do you feel about attachment parenting out there?  How did you cope with babies?

It's been often said of me that I seem to understand animals better than most. Like how I seem to have an affinity with them.  I don't know if that's to do with autism or not.  Just seems natural to me to listen to the animal and heed its cry.  Like when the cat meows because she wants food.  I listen to her and feel her.  When we had a dog, I could tell when he wanted a walk,  And we went out and did it.  Felt good to answer the call of the animal.  Same with babies.  Felt good in my heart to listen to them crying and answering that cry with action.

So yeah, that's why I admire her.  Amazingly smart woman.  Good for her for speaking out on it all.

March 18, 2012

Is Aspergers and High functioning Autism really a disability?

Note:  AS = Aspergers Syndrome
HFA = High Functioning Autism

I've been reading this article by Dr. Simon Baron-Cohen, a noted researcher at Cambridge University.  I like how he breaks it down to looking at "normal" and "autistic" behaviours and contrasting them as being simply different ways of looking at things.

Like this part

 The list could be expanded but these 12 behavioural features are sufficient to illustrate that children with AS/HFA are different in ways that can be described in value-free terms: none imply any necessary disability. Rather, most of the above facts show the child as immersed in the world of things rather than people. This might be a basic way of defining the difference between a person with an autism spectrum condition and one without it . 

This is the article that mentions at the bottom about the likelihood that your father/grandfather was an engineer if you're AS/HFA.


A recent study of 1000 families found that fathers and grandfathers (patri- and matrilineal) of children with autism or AS were more than twice as likely to work in the field of engineering, compared to control groups . Indeed, 28.4% of children with autism or AS had at least one relative (father and/or grandfather) who was an engineer. Related evidence comes from a survey of students at Cambridge University, studying either sciences (physics, engineering, or maths) or humanities (English or French literature). When asked about family history of a range of psychiatric conditions (schizophrenia, anorexia, autism, Down Syndrome, language delay, or manic depression), the students in the science group showed a six-fold increase in the rate of autism in their families, and this was specific to autism.

My father is an engineer. He exhibits some of the signs of Asperger's Syndrome I believe.


As far as I am concerned: do I consider AS/HFA as a disability or simply a difference? I'd say it's both.  You have to explain your deficiencies to others.  You are not the same as the normal social public. But you aren't truly disabled.  You are simply different in your way of thinking.

What is your opinion out there in internet land?  Any thoughts/opinions that you care to share?

Ways that we learn

I've been reading a lot in the last day about ways that we learn.  All the senses help us learn things.  For me, I've always found that being able to touch something and manipulate it helped me.  When I said "can I see that?" it meant "can I touch that and feel it?"  My daughter seems to learn from doing that as well.  She's always picking the flowers and tearing them apart  Her way of learning how to see what the flower is made up of.

The university style of learning, where you sit in a lecture hall, and take notes and then go back to your room and learn them never worked for me.  For me, it was the reading of the textbook that helped.  And then coming up with my own way of explaining it to myself.

I think the best gift you can give a child is the want to read.  With reading they can learn so much.  Both on the computer and in books.  I read an article last night by a doctor of psychology that said why limit children's screen time on the computer?  They are reading that, just like a book.  You wouldn't think of taking a book out of a child's hands, saying that's enough reading for today, no more.  Computers are the childrens new books.  Full of information and learning.  You can't stop a person from learning.  The child feels when they've had enough I think.

It all comes around to this sense of the child being the boss of themselves I think.  A child-led centric. I have always been a firm advocate that the child knew what they wanted, better than I did.  I was an attachment parent from the get-go with both children.  Co-sleeping, breast feeding on demand, cloth diapers, never letting them cry it out philosophy.  Yes, we had little social life, but the child is what mattered.  When I did have to go out, the child came with me in a sling.

They've always known that I value their opinion.  Never have I been s strict mum.  On safety yes, I have been.  On bedtimes I try to be, for school's sake.  On eating, never.  I've read that you are in charge of preparing and presenting the food. They are the ones in charge of how much and what they eat.

Learning is a life long passion that we all have.  We all do it in different ways.  I just want my children to love learning. The computer seems to help that, in various ways.  Minecraft is a passion that my children both love to do.  I've been reading that it's actually considered to be one of the more educational games out there.

How do you learn?  Leave a comment if you like. I'd love to hear.

March 17, 2012

The power of teaching moments

Yes, the power of a teaching moment.  That moment when you can let someone know that yes you've got Asperger's and bipolar and they are willing to listen to what you have to say. They come at unexpected moments, and must be grasped.  They are painful, at times, but we must work through the pain and help others understand.  It is only when people begin to grasp what Asperger's is, and makes us do that we begin to break down the barriers.  The ones that writes me off as being "weird" or "odd" and not just differently wired.

Have you had teachable moments out there?  What are they?  I'd love to hear in comments examples of these.  Thanks. :)

March 10, 2012

An execellent video about revolutionizing school

There's a video out here by Sir Ken Robinson about how we have to revolutionize our schools.  How the fast food model and style of our schools isn't working any longer.  We need to think seismically in change.  "The tyranny of common sense - well it's been that way for a while, why does it need to change?"

Just like climate change is forcing us to think 50 or 100 years down the road, so we must think of our children's children.  What life will they face?

I know that school didn't work well for me.  I didn't fit neatly into the round peg of school. Some courses in high school piqued my interest and I got very high marks in them. Most were bare passes.  As the guidance counselor said after I did some tests, "You're a very brilliant girl Debbie, I'm sorry school isn't working out so well for you".  They adapted my schedule enough that I didn't feel the pressure of writing an exam in a gym with dozens of other children.  I was allowed to write them in a quiet room where I could think, quietly.

So much of what I know isn't from what I learned in school.  Yes, a lot of the bases were put there, but so many of the things I know are from reading.  From talking with people, in private, and in public.

We must dis-enthrall ourselves from the belief that our education system is okay for 20 years down the road.

Just like older people wear wristwatches because they've always done it.  Kids don't wear them.  They can find the time is so many other places.  They are digital age children.  We owe it to them to allow them to learn in different ways.

March 9, 2012

More thoughts on #KONY2012

Okay, haven't stopped obsessing over this yet.  I'll get there. Just a few more purges of thought and then I'm done with it. Enjoyed a few tweets back and forth with Xeni Jardin of Boingboing and got my name mentioned on the post about African reaction to #KONY2012 http://boingboing.net/2012/03/08/african-voices-respond-to-hype.html (ToriaURU) Sent her the link to the bio of the guy and the story about  the reaction of the young man featured in film. Never my intent to try to get name there, just trying to spread word, by Twitter.

So many voices now, so much said about this film. This video speaks so well of the issues.  So much more complex than film says it is.  The film is so simple in its narrative.  A bunch of good guys are going to get "one bad man".  Doesn't talk about all the other bad men in the zone.  Doesn't begin to scratch the surface of the issues.

I was aware of the problems of Africa because of my best friend's cousin.  David McGuffin, a journalist with CBC wrote a few articles about Africa. So I was aware of trouble already.  That is why that film didn't speak to me the way it spoke to others. It spoke to me of simplifying a very complex issue to a young child. As though we were children who were watching.

As this article so rightfully points out a $30 kit and a "feel good" attitude doesn't cut it. Yes, donate that same amount of money to one of the aid agencies that is doing rebuilding of communities in the zone. http://www.africaguide.com/charity.htm  Any one of those is worthy of a donation.

Simply put, this has been one of the most talked about films in history.  This is great.  But lets see some really good things come from it. Let's see commitment to long term change in a zone that so desperately needs it. We deserve to pay the people of Africa in respect for their actions to rebuild their torn apart countries. That much we owe them. Not in giving money to a questionable organization to fund a military that is corrupt to the core and create more violence.

Very good piece here that says so much more than I've said.  Really revealing and truthful.  Hahaha about "Justin Bieber's take on Central African politics" LOL....  Best line of the article IMHO.




March 8, 2012

So, yes, I've been on the #KONY2012 bandwagon the last day.  Spent too much time reading links and thinking about it.  That's an Aspergian trait that I have - this ability to focus in on, and obsess over a detail like this.  It really bugs me the way that that video http://vimeo.com/invisible/kony2012 started out.  I honestly haven't watched the whole thing.  I didn't need to, I could see where it was going.  It was about the movement to get to one man.  Joseph Kony.  A terrible despicable man.  But, the question remained in my mind, so we get him, and what now?  The region is a mess, simply put. To give you an idea of the mess that it is in I invite you to read this piece http://www.foreignaffairs.com/articles/136673/mareike-schomerus-tim-allen-and-koen-vlassenroot/obama-takes-on-the-lra?page=show 

It isn't as simple as going in and taking out one man.  I wish it was. Truly.  But the Ugandan government has had a terrible record itself of human rights abuses, including using child soldiers themselves to come to power.  Do we take out the government of Uganda as well?  If not, why not?  They are just as guilty.

To give you an idea of the idealism of the guys behind Invisible Children I link you to a profile of one of the members. http://pmc-mag.com/2011/02/jason-russell/ And I'll highlight the entry that bothers me.

3: Where are you from and where are you going?
I am from San Diego California with an upbringing in musical theater. I am going to help end the longest running war in Africa, get Joseph Kony arrested & redefine international justice. Then I am going to direct a Hollywood musical. Then I am going to study theology & literature in Oxford, England, and then move to New York to start “The Academy” – which will be a school where the best creative young minds in the world attend.

That bothers me a great deal.  What I see is a slackvist - somebody who thinks he's doing some good and then leaving the issue behind.  For what?  Hollywood of course.  Using this issue to gain fame and then leaving it behind.  Where is the real desire to effect change in a region that so desperately needs it?  Where is the desire to effect change on the government, which you want to empower with the money you receive?  This video raises questions and awareness, which is good.  But as far as this organization goes, there is no way in hell I will be donating any money to them.  That is your choice - go ahead and donate if you so wish.  But think long and hard before you do. There are many other organizations that are trying to effect real solid worthwhile change in the region.

 http://grassrootsgroup.org/ is one such organization.
Doctors without borders http://doctorswithoutborders.org/ is another.

Okay, /rant

March 6, 2012

Aspergirls book

Just read a fantastic book called Aspergirls by Rudy Simone.  I'd had the book for a while, just didn't get around to reading it until this morning while I took the girls to the dentists.  Finally, a book that really does explain all of that that I go through, and that both my daughters are going through.

I don't want to make this about my daughter - it's not her choice for me to air her life in public.  But I'll just say that she's constantly bullied, harassed and made to feel little at her school.  So we're changing things. She isn't going to that school any longer.  She was going to fail Grade 4 anyhow.  Because she can't produce the work that the teacher needs to see, in order to grade her.  She says she finds school boring, repetitive and meaningless.  She HATES school, with a passion.  Every day it was "Mummy I don't feel well".  Anyhow, that's stopped, for now.

I'll talk about me now.  It's my choice to speak publicly about my own life.  And I choose to do that, in order to help someone out there, in internet land, maybe understand themselves a wee bit better.

I was bullied a lot all through school. I've forgotten a lot of it but a dear friend who is a life-long friend reminded me of it when I spoke to her of my daughter.  "How you ever lived through I'll never know" was her comment to me.  I do recall feeling scared.  Being worried about telling anyone because I knew if I told they'd just come back at me harder because I'd told on them.  Bullies are smart and they know how to get to you, effectively.  I know, and remember that much.  I know I was always a loner in high school, never fitting in with any group. I finally found my niche with a gymnastics group in the gym at lunch time.  Have fond memories of that, actually.

I know that I'm different, and yes I celebrate it.  No, I don't have very many friends at all. I can count on the fingers of one hand those that I'd call on the phone to talk to, in a time of need, companionship.  I know I'm lucky I've got them there.  No, most of my friends are on the internet.  Some I know in real life and on internet. 

Why indeed do I feel more comfortable writing my thoughts down, on virtual paper and sharing it that way.  Because all the stress of interacting with other humans is removed.  I don't have to maintain the proper eye contact, nor seem too intense.  I'm free to be just me.  Opinionated, smart, intellectual and open and kind and forgiving and empathetic.  Yes, I'm all of those, plus quite a few other things. 

Anyhow, it's helped reading this book.   So, yes, I've got some more reading to do, to finish it, internalize it, process it, formulate some plan of action, and act on it.  But I'll get there.

March 5, 2012

This is an excellent story to explain invisible illnesses. I thought about just sharing it and saying the above. But no, I feel like saying more. I feel like making up my own analogy for manic depression which I have. The best I can come up with is this. You have a series of tickets in your hand. They have written on them various things like "write a book" "feel great" "buy a gadget" "drive to New York" "drink wine" "anger" "irritable" "darkness" "can't get the energy to get out of bed" "hopelessness" "scream out loud in anger"

 Now that you've got them you spend them without any reason or care. You don't know what you're buying when you cash one in. It could be anything that's written on those tickets. There is no reason or rhyme to what you feel (or spend). There is no limit either on the spending of them.


That's what manic depression, or as some say Bipolar disorder, is. I seem to have experienced mostly mania, in my reading of the disease. Yes, I had some dark bits, but never the feeling of deep, black, utter hopelessness that some describe.

It's so terribly sad that so many gifted people have been taken away from us because of manic depression. The inability of the medical profession to deal with it.

The meds I'm on, a mood stabilizer and an anti-psychotic stabilize my moods well, but it's like a sine curve that's flattened out. I notice the lack of depth there. But I'll take it over the above symptoms on the tickets.

 I'll end this entry with a quote from Kay Redfield Jamieson, a famous psychologist who also has manic depression

"...I have become fundamentally and deeply skeptical that anyone who does not have this disease can truly understand it. And, ultimately, it is probably unreasonable to expect the kind of acceptance of it that one so desperately desires. It is not an illness that lends itself to easy empathy. Once a restless or frayed mood has turned to anger, or violence, or psychosis, many find it very difficult to see it as "an illness", rather than as being willful, angry, irrational, or simply tiresome. What I experience as beyond my control, can instead seem to others as deliberate and frightening. It is, at these times, impossible for me to convey my desperation and pain; it is harder still, afterward, to recover from the damaging acts and dreadful words. These terrible black manias, with their agitated, ferocious, and savage sides, are understandably difficult for anyone to understand, and for me to explain them."

 But You don't look sick

 If you read this, leave a comment - I'd love to hear from somebody :)