Police knowingly leave a 13 year old girl in the home of a 23 year old man she met on Facebook against her parents wishes.

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My daughter ran away from home a few days ago.

Well technically that’s not quite true.

She actually ran away from school, they just didn’t realize it.

Apparently she’d made a “new friend” at school who’d told her that they “could have so much fun if they ditched school and ran away together. “I’ve done it before and it’s easy,” she’d told my daughter,  “and even if the police catch us they can’t do anything to us. I know because I’ve done it heaps of times before.”

So they ran away together from school.

This “new friend”, I  found out later was an older student with a very troubled past and had indeed run away from home several times before and  gotten away with it.

So after my daughter failed to return home form school I rang the school and asked the staff there if they had any idea who she was with that day or where she might be?

On further checking the staff then realized that my daughter had been absent from every class since 11am that day.

They also informed me that she had been seen in the company of an older girl whom I did not know, but they certainly did, and that the older girls reputation was not a particularly good one.

To their credit, the staff at the school, being aware that my daughter had only recently been diagnosed with Asperger’s Syndrome, fore went their usual protocols and phoned the parents of the other “older girl” only to discover that she too was missing.

They then spent the next 3 hours phoning as many parents as they could possibly think of whose children have been known to associate with this “older girl” to see if they knew anything or had any sightings of them.

All to no avail.

So I phoned the police for assistance.

At first I was fobbed off.

So the principal of my daughter’s school then rang the police as well to stress the urgency of my daughter’s situation to them.

Two police constables eventually came to my house at 8 o’clock that night, where I tried as calmly as I could to explain to them that my daughter had  just been diagnosed with Asperger’s Syndrome and that she was an extremely vulnerable child because she lacked the ability to sense when other people were lying to her and was therefore very trusting.

At that point one of the police constables responded to me by saying……

“Well doesn’t every young teenager lack the ability to do that?”

I did my best not to scream at him for being so bloody ignorant and after giving them a photo of my daughter (who unfortunately looks older than 13)  they left telling me they’d be in touch if they found her but that “this was a normal teenage thing and that she’d probably come home under her own steam the following day”.

Well running away  may have been normal behavior for the older girl but it certainly wasn’t “normal teenage behavior for my daughter”.

So after stressing and phoning the police every hour to see if they’d found her, I received a phone call at 1 am in the morning from a mother I’d never heard of before, but whose daughter also goes to the same school, telling me that she’d just had a message from a friend of a friend, who had said that the two girls were shacked up in the house of a 23-year-old man they’d met off Facebook.

How she knew this I still do not know, however, she gave me an address and I immediately rang the police and passed on the information.

The police told me that they’d had the same information and that they were on their way to the address in question but that it was a block of units and they did not know which unit the girls were said to be in.

They eventually located the right unit and found my daughter and her friend in the company of this man, and in their wisdom, they decided that  girls weren’t in any immediate danger.

So they asked the girls whether or not they’d like to be taken home  and because the girls told them that they didn’t want to go home as they were “having so much fun”,  according to them, there was nothing they could do but  to leave both girls there.

Especially since the 23-year-old man had already stated that he was happy to have the girls stay with him for the night.

Shocked that the police were choosing to leave my 13-year-old daughter in the company of a man who I’d expressly told them that I did not know, and whom she’d met via Facebook, I naturally demanded that they bring her home immediately as I most certainly did not give my permission for her to even be in the company of this man,  let alone give my permission for her to stay the night there.

The police then told me that there was absolutely nothing they could do and that my daughter had the right to choose to stay where ever she wanted.

“But she’s 13″ I yelled at them out raged by the whole situation.

Apparently as parents we have absolutely no rights what so ever in this country (Australia).

I am still ANGRY AS HELL at the lack of  action taken by the police in this situation.

Anything could have happened to my daughter during the course of that night.

She could have been drugged and raped or any number of things could have been done to her.

Bearing all of this in mind, by 9am the following morning I made sure that Child Protection had received 4 different requests from both myself, my daughter’s psychologist, the principal of her school and the social worker from her school, for an intervention order to be taken out against this man.

All of us had stressed to Children’s Protective Services that my daughter was an extremely vulnerable child and should be removed ASAP from the house of this 23-year-old stranger.

Guess what Children’s Protection Services did?

Nothing.

In the end I had to go out and find her myself.

And now I’m expected to have a meeting with Children’s Protection Services because I had the audacity to complain about their lack of action.

Oh and by the way, guess what the parents of the other girl did?

Nothing.

They were so used to their daughter running away and the fact that the police continually refused to do anything about it, that they didn’t even bother to phone the police at all.

They just let her go and because they’d either fallen into the habit, or been forced into this habit, of letting their own child run wild, my child was placed in danger.

Seriously, there is something very wrong with the laws in this country when a 13-year-old child is permitted by the police to remain in the home of a male who is a complete stranger against her parents wishes.

There’s also something very wrong with the system when  Children’s Protective Services fail to take action after 4 notifications of child endangerment, one after the other, within a very short space of time.

What on earth is the point of trying to raise awareness that violence and rape against women is wrong in the media if our local police forces and Children’s Protective Services are willing to sit on their bums and twiddle their thumbs while young girls are knowingly being left in dangerous situations?

Haven’t we all heard enough recently about how even people who appear to be as innocent as Rolf Harris can still potentially pose a threat to young girls?

What the hell is wrong with this country?

Sterilization whose decision is it? The fine line that parents of teenagers and young adults with severe cognitive disabilities must walk between honoring their childs human rights or committing ‘acts of violence’.

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A  new Senate inquiry into the sterilization of people with disabilities is reigniting a decades old debate within Australia.

One of the key questions this inquiry will be asking is whether or not anybody has the right to choose sterilization as a valid option for another person?

Especially if that other person doesn’t have the capacity to speak for themselves.

In one of my previous posts http://seventhvoice.wordpress.com/2012/05/21/the-techniques-of-bias/ I explored the ways in which the very distinct form of language used to frame and dictate the parameters considered valid within the sterilization debate, act as  gate keepers of thought, preventing even the most liberal or fair-minded of us from being able to make any clear distinctions as to just whom these laws should and should not apply too and how.

To which I stated:

Most of us agree that disability or not, there are certain human rights that are, or at the very least should be, considered mandatory for all human beings.” The Techniques of Bias.

I still stand by this statement however,  I would seek to question just when it is that the human rights that we consider to be indelible and at all times in the best interests of those involved, cross the line into becoming inhumane rights?

Parents of teenagers and young adults with severe cognitive disabilities, particularly those with girls/young women are facing what can only be described as a double-edged sword that is continually slicing away at them within this debate.

The example I gave in my previous post in ‘the-’techniques-of-bias, regarding a loving family who had requested sterilization for their severely cognitively disabled daughter, and had been knocked back three times by the Guardianship Board, find themselves once again in the firing line within this debate.

They are being held up and accused once again of trying to steal their daughters human rights away from her by requesting that she be sterilized.

Yet no matter how cold heartedly these parents are being portrayed by those who wish to abolish the ability of parents to request sterilization on behalf of their severely cognitively disabled children , I know that the idea of sterilizing their daughter for sterilization’s sake, is absolutely the last thing that these parents wish to engage in.

They don’t want to have to be a part of this fight.

They just want to do what is right for their daughter.

Far from seeking to remove their daughter’s human rights by applying to have her sterilized, they perceive themselves as trying to add to their daughters human rights by giving her the best opportunity of improving the quality of her every day life.

As parents, they want nothing but the best quality of life for their severely disabled, 6 foot tall and incredibly physically mobile 20-year-old daughter, who has a disintegrative developmental disorder similar to that of  severe autism.

Although 20 years of age, her cognitive acuity hovers somewhere around that of  a 2-year-old.

She is non-verbal and requires 24 hour constant care.

For this family, achieving the best quality of life for their daughter, means alleviating the stress and the trauma that she experiences every time she menstruates.

Fortunately, most of  us are not faced with having to help a 2-year-old in a twenty year old’s body who becomes so highly distressed during her periods that she regularly engages in acts of self harm whenever she menstruates.

For these parents however, such acts include their daughter trying to eat her own sanitary pads, smearing her menstrual blood all over her body, face and home,throwing herself at walls, bashing her head repeatedly against the toilet bowl at the sight of her own menstrual blood, and becoming so highly agitated and hysterical that medication is required to calm her down.

Speaking out publicly about their situation they state that “as parents they have tried several less invasive options to try and prevent their daughter from menstruating including two different forms of contraceptive pills, implants,  and  a menstrual management program, all with “disastrous results”.

Her mother states that “the moodiness caused by the contraceptive pills we’d tried only further exacerbated our daughters anguish….. we’ve had broken furniture, scars from where she’s scratched and bitten us, and my other daughter had a whole clump of hair pulled out of her head”.

“No one should have to feel as angry as my daughter does and put up with having those side effects from medications. I just can’t imagine putting her through this for another 30 or 40 years.”

“To me, that’s cruel”.

“That’s inhumane”.

“There is just no dignity in any of this for our daughter. She doesn’t understand what’s happening to her and (having her period)   is stopping her from being able to enjoy those things in life that she would usually be able to enjoy.”

Both parents therefore viewed sterilization as their last and only hope of enabling their daughter to retain both her dignity and her quality of life and stated that being “knocked back by the Guardianship Board for this procedure has left their entire family traumatized.”

“Unless you have lived in this situation you don’t really understand it”.

“I just think it’s wrong that people can vilify you, criticize you and judge you,  when they don’t really know what it’s about unless they have walked in your shoes”.

“Any decisions we make about our daughter are about making her already incredibly difficult life easier for her. It’s not about us. It has never been about us”.

This mother’s bravery in once again speaking up and asking that her own daughters human rights be considered on an individual and a ‘what’s best for the person concerned’  approach, indicates that there must be room made within any legislation regarding this issue, that addresses the very complex and complicated issue of cognitive disabilities.

Especially considering that many within the disability community and activist groups view the sterilization of people with disabilities as “an act of  violence amounting to both torture and a form of eugenics designed to do nothing more than improve the human race” (Frohmander 2013).

When spoken about in these terms, sterilization becomes seen as “an abuse of a man or a woman’s fundamental human rights” (Frohmander 2013).

Given the terrifying history of sterilizing all people with any form of disability that has in the past, held sway, I can well understand why many in the disability community are pushing for a ban on the sterilization of any person with a disability within this latest Senate inquiry.

However, I do questions, especially given the situations of the parents I’ve outlined above, whether or not, in all cases, a parent requesting sterilization for the betterment of their child’s life, must always be seen as being equal to either “abuse” or “committing an act of violence” against their child?

As it stands in Australia right now, it is possible for a third-party, either a Guardianship and Administration board, or the Family Law Court, to legally uphold a parents request to have their teenager or young adult sterilized.

Given that there is a mountain of legality involved in making such a request the decision to press forward with any request of this kind is not one that is made  lightly by the  parents of teenagers or young adults with any form of disability, let alone a severe cognitive disability in which the body, for all intents and purposes is seen to “function normally”.

Yet this is no longer an issue that revolves solely around the rights of those with physical disabilities or mild intellectual disabilities, who can speak for themselves and whom I thoroughly agree must have every right to make their own decisions about each and every aspect of both their bodies and their lives, but it is also an issue that must enable those so endowed with making any final decisions on behalf of those with severe cognitive disabilities, the capacity to treat each request for sterilization, from a person centred, best outcomes approach,that encompasses a greater understanding and awareness of the needs, and therefore a broader understanding of what it is that encompasses the human rights of every  individual that comes before them, regardless of the form that individuals disability takes.

I’m yet to be convinced that we should be seeking to treat this very serious issue as if it were a one size fits all dilemma capable of being fixed by a one size fits all piece of blanket legislation?

What do you think?

Differences between Aspergers and Autism -‘fruit salads’?


In one of my books, The Jumbled Jigsaw, I presented a range of conditions commonly collectively occurring in those with autism and Aspergers. I was asked about the differences between an Aspergers (AS) ‘fruit salad’ and an Autism ‘fruit salad’. As an autism consultant since 1996 and having worked with over 1000 people diagnosed on the autism spectrum there are areas that overlap, areas where similar can easily be mistaken for same, and areas that are commonly quite different. Some with AS can present far more autistically in childhood but function very successfully in adulthood. Some with Autism can have abilities and tendencies commonly found in Aspies and some will grow up to function far more successfully than they could in childhood but, nevertheless, when together with adults with Aspergers they each notice that the differences may commonly outweigh the similarities. Generally the more common differences are:

ASPERGERS
Originally called ‘Autistic Psychopathy‘(now outdated)
commonly not diagnosed until mid, even late childhood.
lesser degrees of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
dyspraxia
mood, anxiety, compulsive disorders commonly onset from late childhood/teens/early adulthood as a result of bullying, secondary to social skills problems, secondary to progressive self isolation and lack of interpersonal challenge/involvement/occupation.
scotopic sensitivity/light sensitivity more than simultagnosia
most have social emotional agnosia & around 30% have faceblindness but usually not due to simultagnosia
literal but not meaning deaf
social communication impairments, sometimes selective mutism secondary to Avoidant Personality Disorder (AvPD)
sensory hypersensitivities more than sensory perceptual disorders
higher IQ scores due to less impaired visual-verbal processing
tendency toward Obsessive Compulsive Personality Disorder (OCPD), Schizoid rather than Schizotypal Personality Disorder and commonly Dependent Personality Disorder to some level.
higher tendency to AvPD rather than Exposure Anxiety
Alexithymia is common
ADHD common co-occurance but may be less marked than in those with autism.

AUTISM
Once known as Childhood Psychosis (now outdated)
generally there is always some diagnosis before age 3 (those born before 1980 were still usually diagnosed before age 3, although commonly with now outdated terms like ‘psychotic children’, ‘disturbed’, ‘mentally retarded’, ‘brain damaged’.
higher degrees and severity of gut, immune, metabolic disorders, epilepsy and genetic anomalies impacting health systems
mood, anxiety, compulsive disorders commonly observed since infancy
commonly amazing balance but commonly hypotonia
simultagnosia/meaning blindness rather than just scotopic sensitivity
verbal agnosia/meaning deafness
verbal communication impairments (aphasia, oral dyspraxia, verbal agnosia and associated echolalia and commonly secondary Selective Mutism)
lower IQ scores associated with higher severity of LD/Dyslexia/agnosias
tendency toward OCD/Tourette’s, also higher rate of Schizotypal PD, DPD is common and tends to be more severe
higher tendency to Exposure Anxiety more than AvPD
higher tendency toward dissociative states (dissociation, derealisation, depersonalization)
poetry by those with autism as opposed to AS commonly indicates those with autism can have high levels of introspection, insight
ADHD extremely common co-occurrence

This post is from Donna Williams’ Blog

Congratulations on making it this far down the post.

Okay so now here’s my bit.

It’s question and answer time for you all once again because as we all know, inquiring minds simply always want to know more.

So apart from Donna’s list, what do you think are the key differences between Asperger’s Syndrome and Autism?

Do you think they’re aren’t any major differences at all?

Or do you think there are many?

Are you in favor of doing away with the term Asperger’s Syndrome and replacing it with  High Functioning Autism instead?

Do you think mixing the two, up until now, distinctly different ways of  understanding the needs of those on the Autism spectrum will help or hinder public awareness and understandings of Autism?

Would love to hear  your views on this.

Love is Love – A New Hook on an Old Book.

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“Ask yourself, what kind of person do you wanna be
And how many commandments are gonna rule how you think.

And do we really mean it, when we say he loves us all?
And do we really believe it when they say that we’re created equal?

Of course I do, I’m not a racist or an asshole,

Yet we can treat them less if their love is homosexual?

Well rules are rules and the bible’s pretty clear here.
Yeah we know, we get it, but we don’t live by procedure.

We decide what’s right by what’s right, not what’s written.
We evolve past our outdated norms and dispositions.
We don’t exclude people based on footnotes of exodus.

Like my friend Haley who loves both of her dads
You want to tell her their love is different?
You want to make that distinction?

You want to tell her that this beautiful and limitless thing that we call love.
Has rules and a proper way to do it,

And their love is less love because an old book don’t approve it?

I guess here’s how I see it,
You got a heartbeat like mine.”

Poetry Lyrics from Same Love

 

Fracturing the time, space, continuum while watching TV shows

Not to mention that you’ve  probably engaged in some form of invisible particle piracy.

And  you’ve quite likely  fractured the time, space, continuum by doing so.

TV is just not meant to watched this way.

Isn’t i it?

What would River say???????

Okay, Okay, I admit it,

I am TV show junkie.
I just can’t seem to help it.
Well actually, technically speaking, the above statement is entirely untrue,
I can help it,
I just don’t want too.
I love falling into a good TV show.
Especially when I find one I like and then discover that there’s like 5 more series of it that I haven’t seen yet.
Talk about feeling like you’ve won lotto!!!!!

Inertia and Autism – Why people with Autism often feel stalled in their tracks…… The difficulty in connecting intention with action.

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Inertia: From Theory to Praxis

 

Anna Sullivan

 


 

This article was the handout for a presentation at Autreat 2002. It is incomplete, due to the author’s inertia, but if a more complete version occurs it will replace this one.

 


 

 

The Why of this Article

 

One night, my freshman year in college, camped in somebody’s backyard in LA to attend a political protest, I realized there was a pattern to the various things I hadn’t done — mail a letter to collect an already-won thousand-dollar scholarship, make an orthodontist appointment after years of having the braces stuck uselessly on my teeth, do most of my homework in high school, brush my teeth before I was 17 anytime other than the day I was going to the dentist — and to the things I had done – an award-winning high school science fair project, a fair bit of reading, endless hours on the internet – and that this pattern had little to do with motivation, caring, internal desires, or even how much I enjoyed doing the activities in question, and quite a bit to do with how the activities were structured. This realization triggered a welcome shift in my thinking, and I set about studying how exactly I seemed to work in this respect, how I could structure my life so as to make this less of a problem, and what similar phenomena seemed to happen in others.

 

This article and presentation are an attempt to communicate what I’ve pieced together, geared partly at inertial people trying to figure out how to structure their lives in a way that works.

 

Wanting and Doing: A common-sense model and its limitations.

 

In high school, I passed many hours thinking about how I wanted to be doing my homework, being frustrated with myself for not doing my homework, making elaborate plans to try to get myself to homework… and still not starting my homework. When I’ve tried to describe how this worked to others, I’ve generally been met with disbelief. “If you didn’t do it,” they say, “You must not really have wanted to.” This idea seems to function partly as a belief about how people work, but also partly as a definition — what a person wants to do is almost defined as what they end up doing. The belief-structure underlying this — our society’s common-sense explanation for what a person does and does not end up doing — seems to go something like this:

 

A person is a chooser. They have an array of options laid out in front of them, and they take whichever one they most want — whichever option they care most about doing. What a person does is exactly the same as what that person cares most about doing.

 

I don’t know how well this model works for most people, but I know this model does not work for me, or for a number of other ACs. For the purpose of this paper, I’ll call anyone for whom this model is far from working “inertial”, and I’ll call the phenomena which make it difficult or impossible for them to connect intention and action “inertia”. I’m going to try to explore what factors effect inertia in various people, and how one might structure one’s life to make inertia less of a problem.

 

Assumed Skill Sets

 

To begin with, it might be useful to look at the skill sets a person would need to have, in order for what they did to be whatever they cared most about doing. A person would need, among other things, to:

 

  • Notice they can make a choice.
  • Notice what options are possible in their situation.
  • Figure out how they feel about the various options.
  • Bring “online” any skills which will be needed to carry out those steps (for example, if their choice requires standing up, they’ll need to bring “online” whatever motor skills are involved in standing up. If their choice involves writing an essay, they’ll have to bring “online” all the pieces of knowledge and manners of thought involved in essay-writing).
  • Begin — i.e., actually start moving, in response to thought.

 

Since a lot of ACs are missing various neuro-typical cognitive modules, and since if any of these steps fails to work in a given situation the person will be inertial in that situation, it is perhaps not surprising that a lot of ACs are inertial. Also, since removing various skills from that list will all result in a disconnect between intention and action, but will have rather different internal dynamics, it is perhaps not surprising that the details of how the person is inertial, and of what changes make sense to address that, vary widely from person to person.

 

For example:

 

  • Some people have trouble making arbitrary choices. They’ll move along fine until, say, they have to choose one of several roughly-equivalent ways of doing something, and then they’ll just stall, unable to pick one and move on.
    • For some people this applies to, it can help to always do things in the same way, so that they don’t have to make the decision each time.
  • Some people will be unable to break down a task into steps (either unable to break the task down ever, or unable to do it while standing up, say, or while figuring out how to implement the previous steps). They might know what they want to do, and maybe start moving to try to do it, but the steps will get jumbled or stalled and they won’t be able to figure out how to do it.
    • Memorizing a routine for doing something, and practicing it, can help. Also, it can help to have a written-out chart of the steps to do something. This difficulty is sometimes, I think, referred to as “apraxia”.
  • I tend not to notice my own emotions/desires without a careful conscious process of checking to see how I’m feeling (much like I often won’t notice visual stimuli unless I specifically “ask my eyes” what’s in front of me). I’ll therefore find myself doing all sorts of things I might not want to do (ordering food I intellectually believe I like, but which I actually don’t want to eat, for example), because I never noticed what I wanted in the first place. Also, even when I do notice, my perceptions of my own preferences often aren’t very “loud”, which may make it harder for me to manage to act on those preferences.
    • I’ve been making a habit of checking what I want to do, both in general and in certain situations (like ordering at restaurants), which has been great.
  • Some people are caught almost constantly in “thick daydreams” during certain periods of their life, and therefore have trouble noticing the outside stimuli which might otherwise prompt action, and are less likely to respond to those stimuli when they do notice. Those sorts of daydreams often have something like an emotional addictiveness or tendency-to-stay-put to them, so that trying to move out of them (as is, to some extent, required if one is to get up and do anything) can sound like jumping into a cold swimming pool.
    • I’ve heard more than one person say that breaking out of the “habit” of these sorts of daydreams was for them difficult but possible, and worthwhile. I would guess that simply deciding one wished to stop, and making a point of trying to go out and engage with things, would be a reasonable start.
  • Some people find it difficult or impossible to summon certain ways of thinking on demand. For example, some people have a lot of trouble getting into an “essay-writing mode” – they’ll get out the assignment, open up the word processor… and then sit there blank, unable to figure out how to begin. For another example, some people get easily caught in a given emotional state – frustration, say – and are unable to get out of it on their own.
    • The idea here is to get environmental stimuli, or processes you can go through, which will help summon the desired state. For essay-writing, it can help to have an example essay (the essay can be used as a model, but also the process of reading the essay can get one’s thoughts going in an essay-like way). It can also help to discuss the ideas you’re trying to write about with somebody, so that your mind will start to engage with the ideas, or to do a brainstorm or something around the essay-topic. For managing to get up, it can help me to make small motions first (so when I think about getting up and working on something, say, I’ll start by wiggling my hands and feet). For regulating their emotions, it helps some people to go through relaxation exercises, or to talk to someone about something else. Another trick for evoking certain ways of thinking is to have certain places which are devoted to certain activities. So I might do nothing other than study at my desk, and then if I’m at my desk there’s a lot of studying-associations there helping me to focus (and if I wanted to take a break and daydream or something, I’d get up and sit somewhere else while I did that, in order not to weaken the associations.)
  • I have trouble moving from “low-energy” states to “high-energy” states (so that it isn’t hard to move from cleaning my apartment to sitting down reading, if that is what I want to do, but moving from sitting down reading to cleaning my apartment is difficult. Also, if I’m trying to do something really-high-energy (like something important I’ve meant to do for months), I’ll often find myself doing a lot of moderately-high-energy tasks (cleaning my room, etc) instead.
    • When I want to do something high-energy, I do better when I start, not by trying the task itself (which is often hard even to think about), but by raising my energy level (wiggling my hands and feet, exercising, accomplishing some easily-completed task like putting my dirty clothes in the clothes hamper, etc.). Also, I would like to start each day by exercising, since I find that that makes me “higher energy” for the rest of the day, and to start my workday by doing something of real substance (rather than checking email or something) since that makes me “higher energy” for the rest of the workday.
  • I know someone who maybe could force himself to do certain things, but who finds that doing so disrupts his natural ability to think and feel. And so the person moves from impulse to impulse with little conscious intervention, and retains an impressive ability to think (and a less impressive (lack of) ability to get forms in on time, pass courses, etc.).
    • It might make sense for the person to structure his life so as to require as few on-purpose activities as possible (using online bill-paying services, choosing courses which require little homework, etc.) and to arrange for a lot of stimuli in his environment to prompt impulses to work on stuff he’ll long-term consider desirable (relevant books, people to converse with about topics he’d like to end up thinking about, etc.).
  • Lucy Blackman writes, in her excellent autobiography Lucy’s Story: Autism and Other Adventures, that she has trouble getting her thoughts into the stream which effects what she actually does, unless she’s had time to type it out before hand.

 

 

Some General Considerations

 

Because there is so much variation, the process of figuring out how one’s own inertia works, and how to organize one’s life in order to do more of what one wants to do, will necessarily be individual. Nevertheless, there are some general thoughts which may be of use:

 

There’s a neurological difference between on-purpose and automatic movement. In the Oliver Sacks movie Awakenings, Sacks and a doctor are looking at a woman with an unusual form of paralysis (who would not, for example, have been able to move to pick up a ball.) Someone throws a ball to her, and she reaches out and catches it. Oliver Sacks asks the doctor how she did that, and he says roughly “I guess she borrowed some will from the ball.”

 

In general, voluntary motor movement and automatic motor movement are controlled by different centers of the brain, and it is possible to be unable to do something on purpose but able to do something as part of a routine (for a common example, people often have trouble remembering someone’s name on purpose, but remember it just fine when it comes up naturally as part of a thought. Also, people will sometimes be able to play music or sports well when they don’t think about it, but will have trouble managing to do it right when they become conscious of what they’re doing.) In inertial people this difference can be larger than usual; often it can help to rely on automatic movements (through schedules, doing things in response to prompts, etc.) in places where other people would use voluntary movements.

 

Just because someone can do something sometimes doesn’t mean they can do that all the time, and just because things vary in ways which are hard to predict doesn’t mean the things are being done on purpose. Often people will be able to do things in some situations or some frames of mind, but not in others.

 

There are different senses in which a person can “know” things, in the sense that I might know intellectually how to do a task, but unless I’ve actually physically done it several times, I’ll find it hard to begin. Similarly, people might intellectually know the next step in a task but have a much easier time starting it if someone tells them, or might intellectually know what they’re trying to do but have a much easier time doing it if they write it down and carry it with them.

 

Facilitation can be great. A facilitator of a group is someone who tries to listen to what the group is trying to discuss or express, and to help that conversation emerge without imposing the facilitator’s own opinions on the process. It can sometimes be very helpful to have someone do that for their own individual attempts to do things – to have someone listen carefully and try to help whatever it is the person is trying to do come out, without imposing themself on the process. I think facilitated communication, when done well, is like this. Jim and I have been “study buddies” for the last few months, and borrowed will from one another and sometimes facilitated one another; this has been fruitful.

 

Inertia and “Taking Responsibility”: People sometimes hesitate to think of their own actions as caused by inertia, even when they fit the profile, because they are afraid that means “not taking responsibility”. From one angle, I think they are mistaken: an important part of taking responsibility for yourself is noticing how you work, so that you can avoid promising to do things you won’t be able to do, can set up situations to make yourself more likely to get certain things done, etc.

 

At the same time, it seems like one component of how most people “take responsibility” is that they believe they can control their own behavior. I think the way to blend this with the above paragraph is to notice what actions one can control, to continue to regard all one’s actions as one’s own responsibility, and to use the understanding provided by the concept “inertia” to figure out how to act well.

 

Figuring it out for Yourself

 

If you’re inertial, and you’re trying to figure out some ways of structuring things to make inertia less of a problem, here’s an outline of a possible way to proceed.

 

  1. Think about the tasks/activities you do easily, and those you find difficult or impossible (it might help to write a list out). Are there patterns? For example:
    • Are you better at doing things in one setting (home, work, school, a friend’s house, etc.) than in another? If so, what is different about that setting?
    • Are you better at tasks which need to happen at a particular time than at tasks which need to happen just whenever?
    • Are you more likely to do things when you’ve already said out loud or in writing that you’d like to do them (or that you plan to do them, or something)?
    • What effect does pressure have on your likelihood of completing a task?
    • What effect do various sorts of reminders from friends and others have on your likelihood of completing a task?
    • Are you more likely to do tasks you’ve already practiced several times?
    • Are there certain things you get stuck doing (playing a particular computer game, etc.) which make it harder for you to move on to what you want to do?
    • Do you have an easier time with certain tasks when you’re alone, or when you’re with people?
    • Are there particular people you have an easier time doing stuff around? Are there particular people it is difficult or impossible to do stuff around?
    • Is it easier when the people are busy doing stuff of their own, or when they’re in certain frames of mind?
    • Is it easier to get stuff done when your day has gone certain ways (say, when you’ve exercised, or when you’ve eaten breakfast, or have gotten enough sleep, or aren’t stressed, or already accomplished something that day, or scheduled enough break time, or…)?
    • Does it help if your environment is clutter-free?
    • Does it help if there is a cue for what you’re trying to do (like the textbook, if you’re trying to study, or the stamps and envelope if you’re trying to send mail)?
  2. Brainstorm some ideas for making some of the tasks/activities you care most about easier for you to do, possibly with help from a friend. Try them out for a week or so and see if they help. Then, brainstorm again.

 

 

Further Reading

 

Kalen Molton has a good, practically-oriented article on inertia posted on alt.support.autism. To find it, go to Google, and do a “Google Groups” search on “kalen autism inertia”.

 

Movement Differences and Diversity in Autism/Mental Retardation by Anne M. Donnellan and Martha R. Leary, gives a nice overview of a whole bunch of ways movement can be different in ACs, gives some beginnings of a new framework to conceptualize some of this in, and in particular emphasizes skills as being situational things which a person is able to call forth in a certain situation, in response to certain stimuli rather than absolutely. I found this book very helpful. The articles Movement Difference: A Closer Look at the Possibilities and Movement Differences Among Some People with Autism use this book as a reference.

 

Catatonia in autistic spectrum disorders“, by Lorna Wing and Amitta Shah (published in the British Journal of Psychiatry (2000) 176:357-362; available at http://bjp.rcpsych.org/cgi/content/full/176/4/357, is an interesting (although clinical-sounding) research article about catatonic autistic people (which kind of seems like an extreme form of inertia). One interesting point from the article is that it says that in a fair number of autistic people, catatonic symptoms appear or get much worse sometime in adolescence.

 

Lucy’s Story: Autism and Other Adventures, by Lucy Blackman, is not about inertia per se. However, since she is “low-functioning autistic” and has a lot of trouble linking intention to action, there’s a fair bit of good material on inertia in her book.

 

Punished by Rewards, by Alfie Kohn, is all about how extrinsic reinforcement (rewards – things like praise, candy, stickers, etc.) can destroy intrinsic motivaion. If that seems to be part of your inertia, it might be worth looking at (although it just talks about how that happens, not about what to do about it.)

 

Some relevant keywords (if you’re looking for inertia-related stuff on the internet):

 

  • executive function
  • executive dysfunction
  • inertia
  • “paralysis of will”
  • apraxia, dyspraxia
  • catatonia
  • “movement” in the same search as “autism” or something similar
  • facilitated communication (since this seems to work, on something of a “borrowed will” basis, and since the details have a fair bit to do with how inertia works and how one might manage to act anyway. I’d also recommend looking at anything written by a “low-functioning autistic” person, since a lot of the time the “low-functioning” seems to mean “very inertial”.)

 

Reblogged from Cassie Being Cassie:

“This film is dedicated to any child who has ever felt such darkness due to others’ hatred and misunderstanding.

Always know that love is meant to be within,

and you should never feel wrong or alone,

by being who you are….

Unique”.

Quote from the film makers of Love Is All You Need.

Equality people ...... isn't it time?

Please go to

http://artofstumbling.wordpress.com/2013/04/30/what-if-being-straight-was-frowned-upon-instead/

  to watch this amazing short film.

Bigotry 101

Reblogged from Living on the Spectrum: The Connor Chronicles:

In the autism world, there's a word that is brandished about quite regularly, as a means of shutting down conversation.  You've probably seen it.

Bigot

Before I go any further, let's be clear about the definition of that word (you know I love my definitions).

Definition of BIGOT

: a person who is obstinately or intolerantly devoted to his or her own opinions and prejudices; 

Read more… 991 more words

Bigotry 101...... Anyone involved within the Autism community needs to read this post and understand that disagreeing with another's point of view is not bigotry, it' not even close to being bigotry, it's simply a difference of opinion. Nothing more and nothing less. Honestly it makes me cringe sometimes to see those within the community attacking each other over such differences in perspectives. Especially when we are all trying to achieve the same things; equality, acceptance and understanding. So why is it that some within the Autism community seem so utterly unable to offer to others the very qualities they are demanding for themselves?

I know you will probably think I’m wrong but I’d rather see men marching against violence towards women than in celebration of past wars.

"North Hampton is a Domestic violence fre...

I’d rather see men marching,

Against violence towards women,

Than see them celebrating,

Openly,

Their male comrades,

Who’ve either fought,

Or fallen,

During our nations,

Past wars.

Every year on Anzac Day,

We are reminded,

To always show our respect,

For those who have gone before us,

Who have given their lives,

For out benefits,

But what about those who are still falling before us?

Whose lives aren’t being given willingly,

For some greater noble cause,

But instead are being stolen,

Within our own domestic war?

Isn’t it time we  see fit to dedicate,

The same amount of national space,

To the true survivors,

Of the on-going war,

Against domestic violence?

A war that remains,

Too silently,

Unacknowledged,

A war whose victims are too often,

Left defenseless,

By the very same governments,

Who foster,

Such National pride,

For its soldiers,

While it lets its women die.

Least we forget,

The many women who have fallen,

To the senseless acts,

Committed within domestic violence.