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ASA/ASSN
International Conference 2005 'Talking with Us'
AS Parents and Other Family Members in Denial
Day 2, Morning Workshop I
Brisbane, Australia
Copyright © Roger N. Meyer
All Rights Reserved
Good
Morning. I hope that you've had a chance
to review my biography in the program guide.
Because this workshop is so short, I'm not going to draw things out
with a Power Point slide show. Because
my presentation touches some pretty raw areas in our community, I'd like to
try to get through it. If we don't
get to questions, please note that your handout has questions you can ask
of yourselves and each other after you leave this room.
Let
me start by aluding to two huge elephants in this room that no one wants to
discuss:
Autism in our families, and
autism in our organisations.
AS IN THE FAMILY
The first elephant in the room is AS in
the family.
After several years of developing social
security cases for my adult clients as though they existed in a vacuum, I
began to conduct full family histories as I did intakes with them. These histories demonstrate the effect of the
family's autism, rarely acknowledged, and often denied or hidden.
Why family history is
important
Adds to decision-maker understanding
Provides context for current and later work
with and by the individual
Takes skeletons out of the family closet
For my client's claim to be awarded, I ask
an analyst or administrative law judge to look at my client in the context
of their family in denial, a family often engaged in very dysfunctional behavior.
Since autism is a condition where the individual's response to others
is often determined by the social context, I ask decision makers to look at
the entire context, not just a behavioral snapshot of my client in the hearing
room or as of a certain date on their application.
I do not exaggerate the picture. I
let family members and third parties who know the person intimately do the
talking.
When decision makers open their eyes to the
everyday universe the client lives in, this bigger picture helps them overcome
stereotypical assumptions based only my clients' visible behavior.
By understanding the pervasive nature of autism in the individual over
the person's life-span, decision-makers aren't as inclined to think of my
less able clients as malingerers not trying hard enough to find gainful employment,
or as students in training or adult education who could make it if only they'd
concentrate and work a little harder. When
I present the whole autistic picture to decision-makers, program gate keepers
are less likely to impute a negative moral makeup to my clients.
FAMILY TREASURES/FAMILY SECRETS
AS individuals marry each other and NS persons
We have children
We run into our kids' diagnosticians unwilling to diagnose
us. WHY?
From what we've learned about Asperger Syndrome,
we know that our kids don't just fall off Asperger Syndrome greengrocer carts.
There's a family connection. Careful
looking finds it in our other children. It's
in close relatives, siblings, parents, grandparents.
When we view the family's history, we trace eccentric and misdiagnosed
mental health conditions back several generations, often on both sides of
the family.
Here's the clinker: We now recognize that with more and more kids
being diagnosed early and accurately with AS, that as their parents, we see
some of those features in our kids as our features when we were their
age.
We know that men and women who may both be
somewhere on the autistic spectrum are attracted to each other. We marry and we have Asperger Syndrome kids.
Conflict between Asperger Syndrome parents often revolves around the
differences of perspective of a more able partner and parent and the less
able partner and parent. In the Asperger Syndrome partners group I've
been co-facilitating for five years with my clinical social worker colleague,
our partners struggle with this all the time.
As a private case manager for persons with developmental challenge,
I experience this same split in parental competence as family members manage
their family's business.
Many professionals in the autism industry
are untrained to look at what's happening with our families.
OSTRICH HEADS IN THE SAND
It's ironic that the further back you go
in writings about autism and Aspereger Syndrome, the clearer is the writing
by medical professionals about both conditions.
I'm not saying 'correct,' but I am saying Leo Kanner and Hans Asperger
wrote well. How many of you know that
when Kanner wrote his 1943 article in English, that he was very explicit in
describing the family backgrounds of his young patients? He talked about parents, grandparents, and their
eccentric behaviors and highly specialised interests. His original journal article in Nervous Child,
a now-defunct journal, can be found in a slightly edited version on the ASPIRES
web site under Articles, with Kanner's original title: 'Autistic Disturbances
of Affective Contact.' It's a clear,
fast read.
The URL for Kanner's article is:
http://aspires-relationships.com/articles_autistic_disturbances_of_affective_contact.htm
Asperger wasn't so lucky. He couldn't study the parents of a much smaller
number of kids who were institutionalized in his special hospital clinc in
war-time
How did the medical community deal with Kanner's
first article when if first came out?
Two bad things happened. First, the 1940's were awash with Freudian psychodynamic
claptrap. Second, Bruno Bettleheim,
another medical fraud, produced 'his' unique and influential concept of the
cause of autism. Both of these influential
men corrupted two whole generations of physicians with myths and lies.
By the 1960's parents of autistic
kids had enough of medical arrogance. Their demands for answers produced a growing
industry of non-medical child development and educational professionals. Together, they forced medical practitioners
to look at the whole family, not just the child or adult patient.
Even today, the average medical professional
is reluctant to look beyond the individual patient and do a comprehensive
family history. We're lucky that other
professionals aren't so blinkered.
WHY ARE WE SO SQUEAMISH
Family stuff is private business
You know...that's private. It's family business. And yes, it is, but its
also OUR business, in the autistic community, to look for problems and treasure
where they're more likely to be found -- in the extended family. Professionals slice and dice persons into little
pieces, treating the medical patient, the counselling client, the benefits
recipient, the student with learning problems, but none of them feel comfortable
putting too intense a light on the family.
Even if there's interest, they often run
into a closed family, a family in denial, a family with very weak connections
in the community at large.
Autistic families close themselves off to
avoid outsider's reactions to their behaviorally challenged members. They wall off their own family members from
one another. There's also another dynamic
working to close the family. Other
family members can't handle the overwhelming complex social challenges of
real life 'out there.'
So, how do we get to enlightment, to understanding
of autism as a family condition? Why
do we keep looking in the wrong places?
Story of the lost wallet
I'm reminded of the person who lost his wallet
somewhere back on the unlit portion of the street. He's looking for it under a street lamp, not
even close to where he lost it. When
asked why he's looking for it here, rather than where he most likely dropped
it, his answer is, 'Because the light's better here.'
Ignorance is compounded when autism diagnostic
experts can't observe the autistic person in real life contexts.
The family home is just one of them.
The person's responses to real-life, real-time challenges out in the
community are other such contexts. At one time, doctors used to make house calls.
They were far more out and about in the community than they are today.
But now, our health care system has changed. Doctors' time is rationed. The see us only in their offices
and clinics. My question to
all such shut-ins of the medical establishment is:
'Is the light really better there?'
So we have to be real about AS not just in
our children, whether young or mature, but we also in our whole family. This is something that many of our long-established
national autism organisations haven't dealt well with at all.
It's the 'third rail' of 'don't go there' in many of our meetings together,
more the topic of whispered private conversations rather than open acknowledgment
in mixed company.
I say we must deal with it, and deal with
it openly. What's preventing our doing
that?
Denial
Fear of Change
As we all know, folks just don't like change.
Human discomfort with change isn't just an autistic phenomenon.
Plain folks dislike change too. In
fact, resistance to change is so strong in our cultures that there's a saying
that the only person who looks forward to being changed is a wet baby.
OUR 'OTHER FAMILY'
Now I'd like to turn to our
other family, our autism organisation family.
Autism in our organisations is the other 'third rail,' our 'don't
go there' elephant in the room
We have organisations over forty years old,
now a part of the autism industry, that insist on only representing less able
autistic persons and their families and providers. We have organisations such as this one, much
younger, that address the concerns of more able children and adults on the
autistic spectrum. As organisations,
we don't get along very well with one another.
Here's
what the public sees:
Feuding, animosity, fear and jealousy
'My kid's more special than yours'
We dislike change
We have our own control freaks big-time
Some of us more able folks occupy token positions
on boards and committees in the older national autism organisations.
While organizational old-timers reassure us we're not there for mere
window dressing, they haven't made headroom for our inclusion and shared power. Out of frustration, we've started our own separate
organisations.
As a student of organisations, I realise
another reason for our non-inclusion. People
long in power don't willingly relinquish it, but there's something more going
on in those organisations. There's
a barely concealed element of control-freak-ism in the way the organisations
are run in the
DO YOU SEE WHAT I SEE?
Let's look at the activities of our long-time
established and
our newer autistic spectrum organizations. Here's what autism and AS/HFA organizations
do. We both....
[READ THE LIST BELOW]
- have local activities for children and adults
- support camps and recreational experiences for
children, adults and families
- press for research programs, pilot programs, any
programs at all in some places
- lobby our state and national governments for categorical
assistance and money
- urge changes in public and private education to
include us and accommodate us
- have our poster children and our poster adults,
and our panels of persons with
- publish books, pamphlets, guides and curricula
- support special education teacher and provider
training in the universities
- have nationally and internationally known autism
experts on our advisory boards
- hold rallies, walkathons, benefits, and conferences
- have parent support goups and training programs
of all kinds
- have professionals, providers, and vendors for
whom autism is big business
- chase after the same money and limited resources
How would you characterize these these duplicated
activities? One thing comes to mind
when we I view both of these organizations:
PARALLEL PLAY
You've heard the term parallel play? What better example than this list of organisational
parallel play functions and activities? Is this not autism writ large, in both our houses?
Self-absorbed parallel play is the first
thing diagnosticians look for as an indication of autistic children's lack
of awareness of others. They look at
kids playing in a playground sandbox. They
observe them during recess and in-class during creative activities times. They see our kids in our own worlds, doing our
own things, oblivious to what's going on around us. That's what I mean when I state that our organisations,
all of them, act autistically. We're
all engaged in parallel play.
I suggest that the reason why this is so,
why we haven't come together under one roof, as one family, is because there's
a lot of denial going on in our organisations.
We have a lot of undiagnosed folks on the spectrum in charge of them,
at all levels.
Another reason, of course, is inertia.
Once organisations are set up, it's hard to change directions, and
it's hard for established organisations to become more inclusive.
And let's face the ultimate problem.
Once ensconced in power, individuals in power don't willingly shift
to make room for others or step down when their contributions ultimately turn
out to be more honorary than real.
THE POWER OF WORDS
Let's return to getting serious about what
stands in our way from joining hands, from healing breaches of understanding
in our own house, from bridging the divide between so-called lower functioning
and higher functioning autistic folks.
'Person With Autism'
Some of the reason why we remain so disconnected
from one another has to do with words themselves. Let's take the phrase 'person with autism.'
The phrase 'person with' also seems to have attached itself to High
Functioning Autism and Asperger Syndrome.
Think of this for a minute: How many sight impaired persons refer to themselves
as 'persons with blindness'? Do paraplegics
or quadraplegics refer to themselves as 'persons with paraplegia; with quadraplegia?'
How do persons in the hearing impaired community
refer to themselves? They certainly
don't refer to themselves as 'persons with deafness'? No. None
of these three groups' members commonly refer to themselves as 'persons with.'
So something's going on here.
Shame and Embarrassment
The phrase 'persons with' in our community
comes more from embarrassed parents whether they're on the spectrum or not,
and from others, not us. Some people
say that the term 'persons with' is politically correct. To that, I ask, 'correct for whom?' Whose politics are involved here? If you're embarrassed by a condition, what better
way to dance around it than to pad your discomfort with the 'A word' with
feel-good laundry softeners?
What better way to hide your shame than to
adopt a phrase given to you by others who are also embarrassed about their
condition as well as yours?
Mind you, I'm not ultra critical of autistic
folks who use this phrase, but if and when I get to know them better, I often
find that they aren't completely comfortable with being autistic.
Well, neither am I, but you won't find me
walking around muttering to myself that I'm uncomfortable with something I
can't really change. I expect others
who are uncomfortable with the word autism to flinch inwardly when
they use the phrase 'person with.' Or,
when they hear other's use it.
'Words can never Hurt Me'
OH YES THEY CAN!
Words do harm all the time.
It's that discomfort with the 'A' word I'd
like to see folks shed, and what better way than to come right out with it
and use the term neutrally, as Eugen Bleuler did, nearly a hundred years ago
in Zurich when he coined and first used the term autism. Bleuler recognized that autistic conduct and
autistic thinking involved a range of conduct and thinking. He did not apply the baggage of moral disapproval
when he used the term. Neither did
Leo Kanner and Hans Asperger. Incidentally, Asperger's use of the German term
'psychopathie' was not, I repeat, not the same, as that term's
meaning in English medical practice.
FALSE DICHOTOMIES
Low Functioning..........High Functioning
Our mutual separation from one another, our
denial of our obvious commonality along this spectrum, is very
costly to us in several ways.
HERE'S THE HARM
First high cost: We play into the hands of the autism industry.
Our organisations rely on industry vendors and providers to sponsor
our events and contribute to our coffers.
I can't say that we should stop, but we should be more sensitive to
the phenomenon of Greeks bearing gifts.
Marketing problems including false hope
By maintaining a false dichotomy between
low funtioning and high functioning rather than acknowledging autism as a
spectrum condition, we allow clever marketeers to sell questionable product
or techniques to our two markets. If
one of our markets rejects it, that's no big deal, because marketeers count
on our other market, whose customers may be either more gullible or desperate,
unwilling to bad-mouth something that didn't work for them but that just might
just work for others. I call this the
marketing of false hope.
Perpetuation of Ignorance and Stereotypical Myths
Maintaining the false dichotomy between low-functioning
and high-functioning perpetuates ignorance and stereotypical myths about autistic
children and adults. As new treatments,
educational approaches, medications, licensed techniques arrive on to the
market, their developers and adherents cling to them out of greed and desperation.
These new treatment approaches quickly become sacred
cows
Another high cost: By insisting on our low-functioning, high-functioning
dichotomy, we perpetuate ignorance among professionals who should know better.
They give lip-service to the notion of autism as a spectrum phenomenon;
but they provide actual assistance only to limited classes of us. They see our exceptional behavior, yet they
convince themselves that our conduct and thinking isn't 'typical' for their
type of patients or clients. They
dismiss us for not fitting into convenient boxes for high-functioning or low-functioning
people. This has devastating educational
implications for our children, and is equally worrisome when it comes to diagnosis
of adults.
False dichotomies breed lazy thinking.
Professionals are overworked. They
don't have time to stop and avail themselves of knowledge that doesn't quite
fit into their narrow scope of practise. While
greater specialisation does occur, there is also room for common-sense to
seep in.
Isolation of disciplines and individuals
Another high cost: Our low-functioning, high-functioning dichotomy
prevents the cross fertilization of knowledge between low and high providers,
between low and high parents, educators, and other community services for
our children, to say nothing of our adults.
Ignorance thrives in darkness. As one innovative person walks ahead turning
on the lights, three others follow to make sure those lights are extinquished
because of the threat that additional knowledge represents to their practises,
their increasingly limited view of the complete human beings they see in their
offices. We see power struggles between
various interests within the provider community, and within our organisations
built around petty squabbles about treatments, the cause of autism, and bitter
arguments about our children and our adults' very personhood, our capacity
for independence. They withhold supports
we need to learn to manage ourselves to maximise our potential for full adult
lives.
Throttling Development of Universal Knowledge
Another high cost: Thwarting universal knowledge. Dichotomising autism into low and high functioning
slows down the advance of knowledge. There's no question that it contributes to vicious
infighting within the research community and amidst so-called academic experts.
Like Attwood, professional advocates point to no real difference between
autism and Asperger Syndrome except the spelling, yet others not out in the
trenches with us who remain within the academy rail against clear thinking.
Instead they circle their wagons and their colleagues around their
own academic argot and arcane theoretical models.
What a waste of brainpower, some of which sounds a bit autistic to
me.
Rodney King and the O.J. Simpson Trial Riot
an allegory
Finally, the highest cost: I'd like to remind folks of the real impact
of the divide within our family. When
race riots broke out in
Rodney King, a black truck
driver pulled from his vehicle and beaten by a riotous crowd, asked, simply
'Why can't we all just get along?'
Indeed, why can't we?
'WHY CAN'T WE JUST GET ALONG?'
How can we heal this split within our family?
Unless we're willing to turn the spotlight
on ourselves to determine whether the differences between our so-called low-functioning
community and our high-functioning community are all that real, we will remain
divided. We will continue to devour
our young.
Healing the
To start to heal the wounds we constantly
scratch open by using the terms low-functioning and high-functioning, perhaps
we should look at other spectrum-spanning conditions labeled as disabilities
and see how they've managed to get their act together.
Learning from Others
In my submission for the proceedings to this
conference, I refer to a number of these conditions. Here's the list:
- Cerebral Palsy
- Early stage Multiple Sclerosis
- Diabetes
- Very early stage cancer with a near one hundred
percent prognosis of death
- Spinal cord injury
- Traumatic brain Injury
- Hearing and vision impairments
- Hanson's Disease (known as Leprosy)
I'll repeat
the two points I made in the proceedings submission. First, they are other complex, well-understood
conditions with hidden differences. This means that just as with autism, individuals
who share these other conditions also have lots of hidden challenges that
aren't obvious just by looking at them or hearing them. I also made the point that we can learn much
from how individuals with these conditions view the world and how they make
their way in it.
Make new friends; cease sparring with old enemies;
turn your back on provocation
In my proceedings submission, I alude to one thing that differentiates
us from these other spectrum conditions. That's our isolation from others and our fierce
pride in being lone wolves. I don't
suggest that this can be overcome easily.
But I think we can and should work on it.
Our solopcism
is what others are concerned about, and for our public persona, we should
care about it as well. Yes, there is
that element of I-centeredness that distinguishes us from others.
However, we all have to live in the real world, and if we want real
results, we have to stop singing the Frank Sinatra song of 'I did it my way.'
There are some things we can do like Frank Sinatra.
There are many things we can't.
I also believe
there's value in self-sacrifice. By
this I mean, doing something with or for others for their sake or just
for the Hell of it, and not only just for our sake. That, after all, is one of the defining characteristics
of adult friendship.
THE POLITICAL SENSE OF SELFLESS GOOD WORKS
Autistic book keeping
When you give and don't receive, do you always
lose?
Self-sacrifice's connection to adult friendship
Deep down,
many of us autistic folks believe that if we give something away to someone
else, that we are diminished by that act.
Our I-centeredness is at the core of why we
don't cooperate well with others. We
want an absolute tit for tat. We
give, we get back exactly the same as we've given. And, over these matters, we hold long, deep-seated
grudges. What isn't OK is an uncompromising
expectation on our part that for every 'give' there is a take.
In some exchanges, we aren't entitled to repayment in full.
The real world doesn't work like an accounting ledger.
Many of us
think instrumentally about our relationships with others. We use other people. That's OK, as long as we're aware of it, and
the other person is as well. Politicians
do this all the time, and although they're not held in high esteem, we still
find them useful creatures to have around.
They get things done.
With strangers
we may have an interest in befriending to move our interests ahead in the
real world, we shouldn't expect a tit for tat dynamic
in our relationships. Especially when
we're making our initial contacts and working on our first projects together.
SPITE
FENCES
Let's talk about the present state of affairs
within our autism community. We're
divided by spite fences. What do spite
fences do?
Send a negative message: Keep Out!
Divide People - You do your thing - I do mine
But it's more than that. They really say: Stay out of my business.
Negatively affect the whole neighborhood
They create a negative environment
way beyond their actual property boundaries.
People may not know exactly what led up to someone's building a spite
fence, but they know one when they see one.
Spite fences set a sour tone in their whole environment.
Create long-smoldering resentment
Let's
look at another kind of fence, and another reason for building the fence.
GOOD
NEIGHBOR FENCES
Good neighbor fences in the
Built upon an agreement between neighbors
The person building the fence will often
place the finished slats on the neighbor's side rather than his own. The fence does a number of things:
Secures each owner's property from intrusion
Sets safe limits for children and pets
It prevents children and pets from wandering
away by setting limits and boundaries on their behavior.
Symbolizes good will by putting a finished side on the
neighbor's side
Symbolizes the virtue of good neighborhood relationships
by starting with good communication
It symbolizes a cooperative effort and selfless
consideration of others by the builder.
It is a symbol of good citizenship
in that it pays heed to good community values of consideration of one's neighbors.
A lesson for children: why and how to build good fences
Good neighbor fences are wonderful lessons
for our children.
When asked why mommy or daddy is building
the fence, parents explain the reasons, but also demonstrate a real life lesson
of valuing a positive relationship with a stranger.
A second
lesson is that the child learns both the values and techniques involved
in how to construct a good neighbor fence - this is all the more easy because
all of the details of the construction are placed on the builder's side, not
the neighbor's side. The child then
has a graphic example, a permanent example of sharing as well as a 'how
to do' lesson.
We can learn
much from this example. While our self-interest
is obviously involved, the value of the lesson to our children in contacting
our neighbor, getting their agreement, and mutually benefitting both of us
can be taught during each step of the building process. If the child wishes to help,
so much the better.
A LESSON FOR THE WHOLE FAMILY
Consideration for others becomes a part of the family's
history
Working on a project of common benefit teaches
everyone an important life lesson through doing, not just 'saying'
or lecturing.
Building with one's hands creates a lymbic
memory building block for life
A project
of this kind, using multiple senses, builds understanding about complex tasks
through repetition of a hands-on experience.
It also may create a life-long skill set for a young person.
On balance,good work benefit
strangers more it may benefit ourselves
Building
a fence is not an accidental project. It
takes thought, planning and perhaps a change of attitude. It's a lesson about intent, self-interest,
and interest in the greater good for everyone.
Of course,
here I'm speaking metaphorically. The
'whole family' we're considering is the autism community, as a whole, despite
the fact of our being a divided camp. By
engaging in concrete, small acts in the outside community, such as
volunteering to help a neighbor, doing work on a Habitat for Humanity project,
participating in a fund-raising community activity for causes other than autism,
supporting a cause just because we think it's right, and that it taps into
our strong sense of justice, we strengthen
ourselves, we strengthen the community, and by our very extension of interest
and effort to others, we start to question the reasons for arbitrary divisions
within our own extended family.
I've learned
that in order to get a building project completed, it takes many trades, with
different tools, styles of learning, and techniques that I alone don't have.
I think we can first learn about some of these skills and pick up some
of these tools from those considerably different than ourselves. The first two letters of 'alliance' do
not have the same meaning to them as the first two letters of 'alone.' One person I know of whose whole professional
persona was wrapped up in
I Vont to be Alone
was Greta Garbo. These
five words from a 1932 film became her trademark. She had such an edge to her intense desire for
privacy and living a celibate life that even the movie studio she worked for
didn't have her telephone number. She
became a sorry, unhappy shadow figure as a result of the way the movie industry
capitalized upon her beauty and her sadness.
Building together always involves
clearing the deck
In building
alliances, all partners must have a healthy self-interest in first knocking
down walls in order to build ones that work better. Some of these partitions are in the exterior,
while others are outside walls. I have
yet to hear of two quite different groups working together in a reciprocal
manner so as to benefit each of them, without each of them having first undergone
a kind of mental clearing of clutter in their minds. I think we're capable of it, just as we should
know that others are as well.
HELPING OTHERS HELPS OURSELVES
In my town,
Habitat for Humanity is building community by building common wall structures,
condominiums. Strangers who've lived
hard lives as renters always subject to the control of others are coming together
to work on their own places and those of other Habitat owners.
They are building their community from scratch.
When Habitat
first started out, its volunteers worked on as many rehabilitation projects
as they did new structures. Of the
two kinds of work, remodeling -- rehabilitation -- is much harder. But they learned, and they learned together.
So can we.
+++++
With this concluding pronouncement that in
order to make alliances with other, we have some mental housecleaning to do,
I've just come to an end with my formal, stand-up routine.
Now, let's get into the 'workshop' portion
of this session. It's going to consist
of questions and discussion. If we
get to answers, that would be great, but lets see
how far we can push our thinking first.
________________________________________________________________
Questions for the audience:
Some of you may wish to know more about me,
things in addition to what's printed in your conference brochures. Chances are, as topics come up in this portion
of the time we have together, I'll be able to slip in some personal details.
At the end of this session, I'd like us all to leave asking more questions
of ourselves and others, rather than coming up with quick answers.
There are no easy answers to the quandry
that I've posed today. But I do think
there are questions we can and should continue to ask of ourselves and others
when we leave this room.
So, let's start the questions.
Before we begin, may I have a show of hands
from those of you who are
- Persons
on the autistic spectrum
·
parents of an autistic individual
·
siblings of an autistic person (brothers and
sisters, half brothers and sisters)
·
other family members - grandparents, aunt/uncle,
cousins
·
educational professionals in elementary and
secondary education
·
persons in the counseling professions
·
connected with non-profit community service
agencies
·
connected with non-educational government
programs
·
elected or appointed leaders in autism organization
·
Others....for the rest of us, please tell
us what you do or who you are
After folks have raised their hands, I'd
like to start our discussion by asking questions of autistic folks, followed
by their family members, and then others in the room. Once you've responded to the question, I'd like
you to address one another, and I'll help you in that process. It's my belier that this is where real learning
and understanding happens.
1. What are your thoughts about the way I describe
AS in the family? Are my statements
accurate?
2. Have you experienced others' denial of their
autism in your family? Show of hands
yes/no.
3. If you raised your hand to say 'Yes, there is
denial in my family,' how
has that affected your
relationships with extended family
members
schooling
acceptance in communnity
your ability to apply for or use
government services
relationships with counsellors
and others wishing to help you
4. What do you think about the labels low-functioning
or high-functioning, first as they apply to you, and then as they apply to
people you know?
5. How do these these labels keep us separated,
unable and unwilling to talk with each other?
We have hidden aspects
of our condition that others don't know much about. So do other
people.
6. What do you think about
making connections with others who aren't autistic to learn about how they've
worked to have people understand them better?
- Have any of you made these kinds of connections?
(If 'Yes,' could you tell us what you've done, or what you're now
doing?)
- What do the rest of you think about making connections
'outside our community' first and then following that type of connection
with others coming back to work on bridging differences within our own community?
Finally, I'm going to throw in a very weighty
question here, and it applies specifically to Australian history. I throw it out not to encourage discussion
here, today, but to get you to think more about barriers to understanding,
righting wrongs, and building community alliances.
7. What if, instead of working with other individuals
with a spectrum condition involving hidden characteristics, some folks here
were to actively join with others in the cause for full restoration of human
and political rights for this country's first inhabitants?
I know this is a hot potato to throw to you,
but I ask you to consider whether our non-recognition and disparate treatment
of individuals within our own autistic community bears a relationship toAustralia's
legacy of prejudice and stereotypical thinking about this country's first
inhabitants? I think there are lots
of intellectual connections to be made, but for the moment, I pose this question
to help us take swing our eyes away from gazing at our own navels within our
autism community for just a moment. We have a similar kind of racial blindness and
prejudice in the
I do want you to think outside of the box,
and in this case, outside of the disability box, into what kind of a community
you'd like to see for us, without our climbing on others' backs to get there.
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