Dear Random Internet Strangers:
Please stop telling me that I don't love my children. It's sort of judgmental, considering how you've never met me. And while you're at it, please stop telling me that I'm a bad parent. That's just a given.
April's been a harsh month. It felt like everybody with an internet connection decided to honor Autism Awareness/Acceptance/Ambivalence Month by gracing us with their opinions about how badly we're ruining our kids.
- Love me or hate me, this is my response to a comment that to me tipifys the worst aspects of the Autism Community. (seventhvoice.wordpress.com)
- Comment to a Post Written by a Friend (autismslove.wordpress.com)
- New Book Recently Published on Grief and Autism Spectrum Disorder (prweb.com)
- Civic Duty Honors Autism Awareness Month (prweb.com)
- How To Play With Children With Autism Spectrum Disorders (paramuspost.com)
- Children on autism spectrum crack the dojo code (irishtimes.com)
- Warning of Tragic Funding Consequences For Those With Autism/Asperger's Syndrome Under the DSM-V (seventhvoice.wordpress.com)
- Support for Parents of Children with Autism Book Giveaway (sweeptight.com)
My eldest son got an I-Pad today.
Well that ‘s a big YAY all in itself !
He’s been wanting one for ages and I’ve yet to join an Autism Parent support group where at least a half a dozen or more parents haven’t raved about how well their son/daughter has been doing with their lovely new little digital genies.
So we brought this miraculous object home and my middle son began setting it up for my eldest son to use.
He’d programmed his brother’s name into Siri‘s settings, unbeknownst to my eldest son.
So the first time my son said hello to Siri, she said hello back to him…. USING HIS NAME!!!!
Well his face lit up and he thought it was magic.
Perhaps those parents at the Autism support groups hadn’t been on drugs after all when they’d spoken with such passion about how Siri has worked wonders for their children.
Anyway…. fast forward a couple of hours and after asking Siri an endless string of illogical questions just to:
A) Hear her digitized female voice say his name over and over again.
B) Giggle at her pronouncement of “Sorry I do not understand”. A phrase which he hears regularly in real life and so is extremely familiar with.
C) Find out where the best place to hide a dead body would be in any given location….. Okay…. Okay…. now you can blame my middle son for that one.
He started it…
Oh and just in case you are wondering Siri recommends swamps as the best locations for the disposal of dead bodies in just about every known location.
I wonder if the good folks at Apple have anything to hide? If so, I suggest checking all swamps first and foremost.
Anyway given Siri’s affinity for swamps, my son soon grew tired of this game.
So he then asked her….. (well her female digitized voice)….. if she would marry him…..
To which Siri replied….
“It’s nice of you to ask….. but it’s not for me to decide”……..
Her response was followed by an instant look of rejection.
“Don’t worry, “my middle son told his older brother immediately… “It’s not up to Siri decide, it’s up to the Motherboard.”
He then looked at me and with a big smile on his face and said ……
“See it’s always up to the mother unit, even in the digital realm….. you simply can’t escape them”.
- Siri Remembers… For Two Whole Years (uberreview.com)
- Who Needs Siri When You Have A Brain? (fastcolabs.com)
- Siri creator says texting-while-driving study was flawed, Siri is safe (bgr.com)
- apples-siri-voice-clip-storage-policy-raises-privacy-concerns (eweek.com)
- OK, this is a worry. Apple keeps all the questions you’ve asked Siri for two years. (wellthisiswhatithink.wordpress.com)
- 5 Places to Look for Your Digital Footprint (mashable.com)
- Google Search vs. Siri: Voice search speed test (video) (reviews.cnet.com)
- Apple reveals how long Siri keeps your data (edition.cnn.com)
- Siri vs Google Now [Comic] (dottech.org)
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:
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
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.
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.
- Warning of Tragic Funding Consequences For Those With Autism/Asperger’s Syndrome Under the DSM-V (seventhvoice.wordpress.com)
- Changes To Autism Diagnosis: Benefits And Challenges Ahead (medicalnewstoday.com)
- The Difference Between Autism and Asperger’s Syndrome (thesensoryspectrumblog.com)
- Autism vs Asperger’s (mckinleymilestones.com)
- The Autism Spectrum (jewishpress.com)
I see your true colors,
Even when others don’t!
Love isn’t in your eyes baby girl,
It’s in your heart.
- To the New Mother of a Baby with Down syndrome (not-alone.org)
- Beautiful – Infinite (Lyrics by Nam Woohyun) (mandyxxdrgn.wordpress.com)
I received a comment to my post /parental-rights-and-autism-a-much-needed-reality-check/ a while back that I’ve left in my pending tray for quite some time.
I left it there mainly because I couldn’t understand the logic involved in the arguments the commenter applied.
Yet I did not want to dismiss it out of hand without first giving it due consideration.
In the post I’d previously written, I’d argued that no one should have the right to tell parents of children with Autism to either “shut up” or to treat them as if they had nothing what so ever of value to offer to the Autism community.
Within my article I openly acknowledged that adults with autism have every right to express their own views regarding the childhoods they had lived through first hand, and that due to this they did indeed have a large degree of expertise to offer as to what should count as appropriate ways of treating children with Autism.
To me, acknowledging the wisdom and advice that adults on the spectrum can provide to parents is an absolute must if we are ever truly to become a cohesive Autism Community.
Yet despite making several valid statements as to both why and how parents of Autistic children and Adults with Autism should work with each other instead of against each other, the comment I received form a person who neither identified themselves as either a parent or an Adult with Autism really bugged me.
So I decided to try and break it down to figure out why it bugged me.
This is how the response started;
“While I acknowledge that many parents have fought the good fight– and continue to do so– on behalf of their autistic children, it is also sadly true that many autistic children suffer a great deal at the hands of their parents. Some of that suffering is due to societal problems, and some of it is due to neurotypical parents misunderstanding or being unaware of their autistic child’s needs.”
Ummmm….. I’m sorry but I simply do not believe that children with Autism are suffering from having “misunderstanding” parents.
If anything parents of children with Autism are often later found to be somewhere on the Autism Spectrum themselves, so I’m not sure where all of these ideas about ‘misunderstanding neurotypical parents’ are actually coming from.
More importantly, neurotypical or not, I do not know one single Autism parent who has not worked their asses off firstly in seeking help for their child, and then secondly reading everything and anything they can get their hands on that might provide them with some kind of insight as to how to better help and understand their child.
So once again, where are all of these ‘misunderstanding neurotypical’ parents coming from and where’s the data to back such claims up?
Then the commenter does a backflip in acknowledging that there are several wonderful Autism parents out there and even takes the time to point out who they are.
But if you look closely at the following paragraph, you will find that those parents who have been singled out as praise worthy are parents that fit a certain kind of criteria.
“There are plenty of wonderful parents out there, like this one: http://emmashopebook.com/2013/04/04/what-i-wish-id-been-made-aware-of-when-my-daughter-was-diagnosed-with-autism/. I am deeply grateful to the parents who are willing to stand up to society for their children’s rights. I applaud parents who refuse to believe the experts who tell them that their child cannot learn, or that those children should be forced to endure things they find traumatic for the sake of looking normal (http://juststimming.wordpress.com/2011/10/05/quiet-hands/), or that the caregiver is always right (http://ballastexistenz.wordpress.com/2012/04/30/badd-caregiver-abuse-takes-many-forms/).”
So under these proviso’s, if you are a parent who listens too, seeks help from or agrees with experts on any level, then you are not doing your jobs right.
Ah no and here’s why.
There’s a big “but” involved in this line of logic that is far too often overlooked.
Basically if we, as parents, were to all ignore “the experts” then our children would never have been diagnosed in the first place because in theory, we should all have refused to agree with an “experts” diagnosis of our children as having Autism.
Seriously I am so tired of the constant catch 22 that some within the Autism Community continue to use against parents in this way.
This circular form of thinking places parents in a no win situation.
We’re either damned as fools if we do listen to “ experts” or damned as neglectful, harmful or abusive ‘neurotypicals’ who haven’t bothered to take the time to find out the facts, if we don’t.
A part from all of that, hidden within that paragraph is this message “I applaud parents who refuse to believe……. that the caregiver is always right” .
Now this meaning may not have been the commenters initial intent, but what if it was?
Why on earth should parents be told to promote the idea that they, as caregivers are not “always right”.
That they don’t always know what’s best for their children and that they don’t always dedicate themselves, everyday, to understanding and honoring their children’s human rights.
I’m sorry, but to me, this continuous misnomer that for Autism parents honoring their children’s rights comes somewhere way down the list of whatever mysterious parenting agenda, those of us who do not fit the perfect Autism parenting criteria, are supposed to have, simply just is not true.
If it were true there would simply be no Autism Community at all.
Who do you think started it?
Parents did. That’s who.
As I stated in my original post.
“In truth, the biggest contributing factor toward the significant rise in Autism awareness over the last 5 decades has not come from adults with high functioning autism, nor from any magnanimous sharing of Autism facts by professionals, rather it has come from the hard-fought efforts of parents of children with Autism to unite and share information with one another.”
In my article I outlined how one father Bernard Rimland single-handedly, took on the many prejudiced and erroneous assumptions surrounding the causes of Autism back in the 60’s and that in doing so, he advocated for an end to the barbaric treatments that children with Autism were being subjected to.
In fact, if it weren’t for the work of parents like Bernard Rimland , whose book Infantile Autism: The Syndrome and It’s Implications for a Neural Theory of Behavior marked a turning point in our present day understandings of Autism as a neurological disorder/processing difference, then many of the new wave of adults with high functioning autism who are now so clearly and eloquently speaking for themselves, may have instead endured years of pointless and often cruel psychotherapy and psychoanalysis.
So really, there is very little basis for the argument that in order to be a good Autism parent you must first admit that you don’t know everything about your child.
Despite these facts, the commenter then goes on to say.
“Unfortunately, there are a lot of parents out there I wish would shut up. These parents throw pity parties for themselves and tell the world about what a burden their child is (parents who are autism allies, on the other hand, talk about the difficulties they encounter in raising their kid, sure, but in a way that’s respectful, that won’t destroy that child’s self-esteem if/when they read those articles online later in life). Parents who need to shut up are the ones who derail conversations about the abuse and murder of autistic people (kids or adults) with arguments that it’s sometimes justified, or take those discussions invariably as unwarranted personal attacks on all autism parents. Or parents who refuse to believe their child is intelligent just because they don’t speak, even when they show that intelligence in many other ways.”
I’m sorry but I simply do not know any parents who have murdered their Autistic child. Nor do I know of any who would call such a heinous act justified.
Nor do I know of any who speak of their children as “burdens”.
The concept of the “burden of care” was invented by doctors and psychologists in an effort to try and pathologize parents of special needs children as being either emotionally unstable or possessing a depressive personality type.
In reality it was nothing short of being another attempt by the medical establishment of blaming special needs on parents.
It was not a term invented by parents, nor is a term used by parents.
In general I find that if a parent takes offence to a statement regarding the “lack of understanding displayed by parents of children with Autism,” it is usually warranted due to the manner in which some choose to express themselves.
Further to this, no parents that I know of refuses to believe in either the worth of the potential of their child.
I mean really, just think about it.
If it really were the case, that we as parents have given up on children, or are refusing to believe in their intelligence, then we’d all be putting our feet up, instead of madly scurrying to and fro to fit in speech, occupational and physio therapy sessions.
The care industry would fall into complete chaos and therapists everywhere would be out of their jobs. But oddly enough they’re not!!!!
The commenter then goes on to say;
“Yes, I worry about taking parental rights away from autism parents… but mostly because that would mean giving those rights to someone even worse.”
Really, according to you, who could be worse than some of us parents?
This comment is followed by the claim:
“I do wish parents were required to take some classes designed/taught by adults on the spectrum in order to better understand their children’s needs.”
Okay, hands up all of you parents out there who have ever gone to workshops, or attended events with speakers who are Adults with Autism?
Voluntarily. Without being told too.
Well I for one have attended many such workshops and events without being told too and I did so because I wanted to learn more about the experience of Autism in order to best help my child.
I can also tell you that every workshop and event I’ve been to has been filled with other parents who are all there for the very same reason.
They want to better understand their child.
As if that weren’t enough, the commenter then ends their response with the observation:
“I often find that people on the spectrum are treated best by people who have been taught the least about autism– because they don’t approach that individual with a mind full of misinformation, pity, and stigma.”
I’m sorry but hasn’t the commenter just spent their entire post stating that we need to better understand Autism?
How on earth can they then turn around and make the claim that placing anyone with Autism with someone who has an uninformed mind would be better than being surrounded by people who love and care for them and who are trying desperately to understand them?
You’ll have to excuse me but when it comes to this kind of argument, I’m completely lost.
How about you?
- Warning of Tragic Funding Consequences For Those With Autism/Asperger’s Syndrome Under the DSM-V (seventhvoice.wordpress.com)
- Searching For the Causes of Autism – If it’s not vaccines, what should we focus on? (babble.com)
- The Closing of Autism Awareness Month! This Will Capture Your Heart…Mothers Who Love Beyond Autism (everythinggirlslove.com)
- Bigotry 101 (seventhvoice.wordpress.com)
- Parental rights and Autism… A much needed reality check. (seventhvoice.wordpress.com)
- Dear Autism Community (gretchenleary.wordpress.com)
Inertia: From Theory to Praxis
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.
- 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.
- 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)?
- 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.
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
- “paralysis of will”
- apraxia, dyspraxia
- “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”.)