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'Talking with us'
ASA 2005
Workshop Session 10
Session Ten
BARRIERS - POLITICS, PRACTISE
AND POLICY -
Copyright © 2005 Roger N. Meyer
All Rights Reserved
Last session I focused on autism denial in the
family, our biological families and our organisational families. We talked about healing the rift in our own
autism community by making alliances with others.
I'd like this last session to end on a positive
note. I'll be suggesting that we can
make positive changes in institutions by intelligently challenging their barriers.
Before we begin, may we see a show of hands
of who's here? Incidentally, you can
hold your hand up more than once as I go down the 'who's here' list.
- Individuals
on the autistic spectrum
- Parents,
and or family members of autistic individuals
- Medical
doctors/persons with formal medical training
- Professionals
with Ph.D. degrees, or their equivalents
- Educators
(child and adult)
- Folks
from government entitlement or benefits programs
- Other
folks who see autistic individuals who come to them for consultation,
- Anyone
I missed? Please identify your interest
in autism.
POLICIES BASED ON OBSOLETE NOTIONS
No acknowledgment of autism as a spectrum condition
Many barriers to inclusion and understanding
autism as a spectrum condition are based on rules based on absolutes, on black
and white thinking with little acknowledment that autism is a spectrum condition.
Here are some of those rules:
*One is either autistic or not autistic
*Condition likely to remain static life long
*Base all policies on low expectations
*Follow DSM criteria; avoid common sense
*Set up separate autism programs
*Medical authority defines non-medical services
WHAT OTHERS SAY...
'Well you don't look autistic'
A typical situation
might be just the statement from someone, 'Well, you don't look
autistic!''
Is there a way
autistic folks are supposed to look?
Let's try another
one.
'You can't possibly be autistic because you
speak so well!'
How many of you have heard that one before?
The DSM-IV TR says, in error, that to be diagnosed as Asperger Syndrome
one must not have had any problems with speech as a child.
We know that isn't true. The
moment the DSM was published in 1994, this diagnostic critereon was widely
challenged by folks who'd been working with us for three decades.
Let's try a last
one:
'Well, you seem to understand me well, and folks who can
follow me this well, they aren't autistic.'
Let say you are enjoying a great day. We all have our up days and our down days. You're in a place with few sensory violations,
you're not drawn taught like a bow string, but you're autistic. What do you have to do to show this person that
you are autistic? Start drooling or
rocking or head banging or flapping your hands or spinning around in your
chair?
So, what accounts for these barriers, these
attitudes of the gate-keepers?
Let's look at system barriers that block
understanding and inclusion.
SYSTEM BARRIERS
The medical profession as our highest social caste
At the tip of the social pyramid in our advanced
western cultures is the medical profession. We chair our government advisory boards with
doctors. They hold pretigious positions
in our countries' medical schools and research institutes. We want MD's on our boards of directors. Legislators and policy-setters sit in awe as
doctors deliver authoritative testimony before their committees.
The medical profession has weight. Lots of it.
But let's look at the real world in which
we all live and the professionals who see us the most.
Those we see
most often aren't medical specialists but must bill using medical codes
If we consult specialists about autism concerns,
who do we see most of the time? We don't see medical professionals because health
care systems restrict our access to doctors. Also, we can't afford to see them. But we do see lots of folks with non-medical
degrees.
These next remarks apply to those of you here
who are non-medically trained autism service providers.
You generally know more about us because..
- We
see you more often than doctors, and we see you for longer consultations.
- Your
training and experience prompts you to perceive us as whole persons
in real life contexts, not as body parts in clinical settings or as
names in chart notes next to a list of prescription medications.
- You
talk with one another, across disciplines, far more often than medical
doctors talk with non-doctors.
Organisers of conferences try to arrange
professional development hours for you
when you attend. Our conferences
are also more affordable for you than your own conferences, and I daresay
that in some of our conferences you'll learn more useful information than
if you meet just with your own colleagues.
Unfortunately, medical associations don't
certify their members' attendance at our conferences as counting towards continuing
medical education.
With rare exceptions, medical
doctors don't attend our conferences unless we invite them as presenters or
if they come as parents or relatives of an autistic child or adult.
Official Government Policy,
Practise, and Institutional Procedures
I'll have more to say later about official
barriers when I describe just one institution that's well known to all of
us: Developmental Disabilities.
AN OPEN INVITATION TO SUPPORTIVE MD'S
If there are medical professionals who've
come to this conference just to learn on your own nickel, I thank you, and
I hope others will thank you as well. I
acknowlege the struggle you face with your own colleagues in deliberately
breaking social caste barriers to spend time with us groundlings.
Medical school curriculum general
education and specialization
Why has it taken the medical establishment,
not the few knowledgeable MD's we see, so long to 'get autism'?
Medicine, like education, changes its practises slowly.
Social forces beyond class barriers force
those changes.
Here's an example.
Until quite recently, medical schools didn't
offer classes in developmental pediatrics. What caused the change? Three hard-to-overlook social forces. We've recognized fetal alcohol syndrome,
crack babies, and babies and children neglected and abused by parents
and care givers. A groundswell,
initiated by public concern supported by
caring physicians shamed our medical schools to deal with reality and educate
medical students about the needs of infants and children with developmental
challenges.
Autism's become big news, news you can't
ignore, within the last decade. Prevalence
figures are climbing. It's only a matter
of time before accurate autism education will nudge its way into the first
years of medical education.
Which orientation
will medical schools choose? Cure/eradication
or accepting human neurological diversity?
Knowledgeable autism physicians can teach
their junior colleagues active listening skills and to respect human neurodiversity.
Supportive physicians can also demonstrate
good social skills by actively collaborating with the many other non-medical
professionals who routinely see us and who understand us.
I challenge doctors whose children are autistic
to step to the front line for this badly needed system change. Next in line should be physicians we respect
to start up competitive educational coursework and offer internships of their
own. Like lawyers, doctors are reputed
to be highly competitive and have large egos.
I urge respected physicians to challenge their colleagues like this,
directly. If any of you are here, you
know that you are the autism vanguard in your profession. Prove yourselves not to us, but to your colleagues.
Work from Within
If any of you here are medical doctors: it's
up to you to take your knowledge of the unwritten but strongly enforced rules
of etiquette in your own profession, and start to work on remodeling your
own house. Because your house is so
high on the hill, it's unlikely that consumer demand alone will drive needed
changes They must come from you.
With all respect, I think your biggest challenge
will lie in convincing your colleagues to consider autism as a spectrum-based
condition, a phenomenon contributing to our rich, neurodiverse human tapestry.
I realize that millienia of medical pedagogues have taught doctors
to 'cure.' What if other humanitarian social forces other
than medicine determine that we're not sick, not ill, just different?
Just as the old union organizing
ballad in the
'Which side are
you on?'
I ask this same question of the medical establishment.
Stop unlicensed practise of medicine by educators
There is one thing you can do immediately,
as individual doctors. For years, educators
have insisted that we medicate our children. This practise must stop.
In the
As practitioners, you can lobby for needed
change in the medical education of your colleagues, especially among generalists. As colleagues, you can educate your national
health authorities and your medical school faculties to cease using the word
'cure' and 'eradication.' Finally,
as individual professionals, you can initiate direct legal action against
educators practising medicine.
There's a second barrier to understanding.
Actually, its both a blessing and a barrier.
THE AUTISM INDUSTRY AND AUTISM PROVIDERS
The autism industry is
the product of two simultaneous developments.
The autism industry is big business. It's about 45 years old. It was created by parents' whose caregiving
concerns went unheeded by the medical establishment. They were openly castigated for having autistic
children, told to put their children away in institutions, and try again.
Wealthy parents arranged for home care, private
tutoring, and private schools. Other
parents, not so wealthy, haven't been so lucky.
For the majority of kids and adults with
difficult behaviors, 'home' was state mental institutions and away-from-home
residential settings. Or remaining
at home. We weren't allowed in public
school. There was no separate but equal
for us. There was no separate. There was nothing.
Development of the mental health community care
movement
The first movement supportive of the autism
industry was the movement for community care, the public policy substitute
for locking us away far away from home. But with that movement, here came the local
lockups, the closed wards in community mental health hospitals, community
day-care programs, and the personal lockup for the more ambulatory among us:
psychiatric medications. From the forties through the mid-nineties, most
of these medications were pretty bad.
For those of us who need them, present medications
are much better. Many of them do
enable us to have a high quality of life.
Special education industry also produced our autism
industry
The other force creating the autism industry
as we now know it was the civil rights movement in the US. That movement put pressure on the US Census
Bureau to ask just how many of us were barred from attending public schools.
With the Soviet Union's launch of Sputnik in 1957 our national government
got into the business of supplementing funding state public education during
the Eisenhower, Kennedy, Johnson and early Nixon years.
By 1975 we passed the first federal civil rights law mandating state
public education for disabled children. Social
pressure and federal funds flowing into our state special education education
systems also bankrolled university programs to train non-medical service providers.
By the late 1970's, non-medical professions serving disabled public
school students were well on their way to getting a piece of the autism industry
pie.
THERE ARE SUBSTANTIAL BARRIERS TO UNDERSTANDING US EVEN IN
AN INDUSTRY DESIGNED TO SUPPORT US
Medical establishment financial interference - doctors
playing hardball
Where does the money come to fuel the autism
industry? It doesn't only come from
our national departments of education. It
comes from health insurance, and from our private pockets. In the United States, most private medical insurance
doesn't directly cover treatment for disabilities, so non-medical professionals
play a label and price-tag game with our medical insurers. They must enter medical codes on their statements
to get paid for their work with us.
In the United States, even if our medical
insurance won't reimburse us for what we pay non-medical providers, our tax
system allows us to deduct the cost of our medical insurance premiums
plus paying non-medical providers. Congress
passed this tax deduction when it became apparent that the doctors' death
grip on the medical insurance industry was so strong that Congress did the
one thing it could do, arrange for tax relief.
To get paid, non-medical providers are forced to fraudulently
mischaracterise their services
What's the harm, or is there harm in playing
this type of game? I think there is
harm, and I think it's very real.
Forcing individuals in those disciplines
into what amounts to a fraudulent charade in order to be paid for beneficial
services is morally reprehensible. For
this reason, some non-medical professionals refuse to deal with insurance
payment schemes altogether. They accept
only private paying clients and patients.
Others from multiple disciplines set themselves up as clinics or institutes,
and let their office business managers handle billing, although such business
arrangements don't relieve them of their ethical dilemmas.
This is squirmy stuff. It's distasteful. There's something terribly wrong when the medical
establishment, unable to treat autism and unwilling to relinquish its tight
control over the insurance industry, threatens
the livelihood and integrity of those who work with us.
Special educators' unlicensed
practise of medicine
We've already covered unlicensed medical
practise by educators, but I highlight it here so we don't forget who we face
and how they can be dealt with by the medical establishment.
Like medicine, the educational system has
been a slow mover. Most breakthroughs
working with autistic students have come not from educators, but from
autism industry providers employed or contracted to the educational
system. But here's our main problem:
Special education bean counters playing God
Here's an example of the bean-counter mentality
in motion. As separate autism industry
professionals working in or for the schools, you test and evaluate our kids,
and you recommend X number of hours of your time for the kid's remediation,
training, rehabilitation and specialised skill work. The special education director who has none
of your training but who does have power of the purse, says, 'NO, the service you provide to this kid will
be no more than X minus a whole bunch. Take
it or leave it. Final decision.'
Does this dynamic, repeated time
after time, not affect your integrity? Many
non-medical autism professionals have a majority of their colleagues employed
by the schools.
TO NON-MEDICAL PROFESSIONALS I SAY...
Fight back against...
- Loss
of Your Professional Individual Integrity
- Your own tendency to take power to decide away from
us
Earlier, I urged doctors to work for change
within their own medical establishment to win better understanding and a place
for autism in medical education and continuing professional development.
I also dared more doctors to mix it up with just us plain folks.
I put the same challenge to those of you
in independent, private practice as autism industry providers. Many of your colleagues are stuck within an
educational system that suffocates their capacity to act according to best
practises in your respective professions.
Those of you beyond the clutches of both
systems, the insurance industry and the schools, must support one another,
and mutually support the integrity of your majority numbers not so fortunate
as you.
Expose inappropriate interference by naming the game
If ethical pressures you all are under is
revealed for what it does to your integrity and your independence, you'd win
understanding and support from the general public. If as professionals you don't start fighting
back for yourselves, don't first expect others to enter skirmishes on your
behalf.
You must name the games, and keep naming
them.
While Strengthening Yourselves, Seek Public Support
Where to start? For those of you in exclusively private practice,
seek quiet then the open public support of your clients and consumers.
Encourage your clients to make public appeals to less affluent parents
whose kids are served in the public schools by your colleagues..
Arrange private and then public meetings of your consumers. Doing so will get all autistic kids' parents
on the same page, not finger pointing at each other as the haves and the
have nots.
Stand your Ground and Take the High Road
Don't cave in to the pressures of your colleagues
who say, 'Well, everybody does this!' Your standards of practise all include noble
words regarding your responsibility to maximize each person's potential for
a high quality of adult life. Use them
to gently shame your colleagues into line.
At the worst, those of you in the autism
industry can push the possibility of our directing our own services and determining
our own destiny as independent adults further into the shadows.
At your best,
you can support us to find our own self-directed places in the sun.
With this said, let's move on a third huge
barrier to understanding the spectrum character of autism Government Programs and their Policies. Let's consider government Development Disability
programs as an example.
'DD' AS AN ILLNESS-BASED CONCEPT
My comments about DD services stem from our
American experience. To a large extent,
I believe they apply to similar services in other English-speaking countries.
Our DD programs are based on the mental health/mental
illness model. They are driven by outdated,
erroneous information about autism, limited by and black and white thinking,
riddled by arbitrary age cut offs and eligibility criteria based upon numerical
IQ test scores and subjectively scored adaptive behavior scales.
DD services, as we know them today, are the
product of four major historical forces:
Millenia of Institutionalisation
Old wine, old
bottles, new label
IQ Tests and their Legacy
Rise and Dominance of Classic Behavioral Psychology
Psychiatric Medications
Millenia of institutionalisation
We needn't go into the history of institutionalisation.
Let's take it as a given that such institutions stand for massive trauma,
abuse and inhumane treatment.
Old Wine, Old Bottles, New Label
Where did we get the term DD? Why do consider this an example of old wine
in old bottles with new labels?
DD, as a term didn't exist prior to historical
pressure in the US to de-institutionalise thousands of patients languishing
away in state hospitals. By the early
1960's few adherents of forced commitment could any longer defend such barbarous
treatment using old words, so they went on the hunt for some new ones.
As state hospitals first began to empty, among the first terms developed
was Developmental Disability. This happened to be about ten years following
the first issue of American Psychiatric Association's Diagnostic Statistic
Manual classifying mental illness.
Persons trained in classical Freudian psychodynamic
theory and Skinnerian behaviorism changed their uniforms from white smocks
to business suits and casual clothing.
Rise and Dominance of Behaviorism
Psychiatric Medications
In the sixties and seventies, doctors and
behaviorists knew nothing about autism.
They really didn't have to. There
were simple, mythic explanations of its cause widely promoted by psychodynamic
pedagogues and by Bruno Bettleheim, our American 'Doctor Fraud.' Negative behavioral programs and powerful drugs
kept us in check.
Our state mental hospitals are smaller but
they're still standing. They just have
fewer inmates. Now we have medicated
former inmates on our streets. When
budget belts are drawn tight, local DD agencies cut support staff, but find
ways to keep the pharmacies open. The
pharmaceutical industry makes sure of that.
Please rememember, I don't disparage
medication as such. As I've already
said, some of us need it, and we're grateful for the quality of life it brings
us.
ELIGIBILITY CRITERIA FOR DD SERVICES
How easy is it to become qualified for official
government DD programs?
Here are the criteria:
Autism IQ test scores at mentally retarded level or below.
(The system does not acknowledge score spread between verbal and performance
subtests.) AND
Diagnosis of a severe developmental disorder prior to
the age of 22 AND
Exceptions to score and age allowed only in cases of 'severely
impaired' low scores on subjective
measures of adaptive child or adult functioning
Just for clarification, mental retardation
means that one tests at seventy or lower on IQ tests, either verbal or non-verbal.
Let's look a little
closer at these American eligibility criteria, and let's take a little walk
into history.
We've got a dirty little story about IQ testing
Most developmental disability services, whether
for children or adults use IQ scores as their primary gatekeeping tool.
French psychologist Alfred Binet first developed
the concept of IQ in 1904. He was commissioned
by French Ministry of Education to find a 'scientific' way to separate more
difficult to educate children from other public school students.
They weren't to be denied education, but instead provided specialised
instruction. Along with a colleague, Binet believed that
intelligence was fixed, immutable, scientifically measureable, and hereditary.
Binet cautioned against the mis-use of his concept of IQ for anything
other than separating young public school children into two groups.
The Simone-Binet test was translated into English by H.H. Goddard,
an American private school administrator and psychologist.
Goddard ignored Binet's warning, as did two other American psychologists
Lewis M. Terman, and Carl M. Brigham.
All three American enthusiasts of IQ were
unabashed racists and advocates of eugenics.
With widespread adoption of the Stanford-Binet and other later IQ tests
by the early 1920's a full-blown alliance blossomed between psychiatry, psychology,
American isolationists and eugenics movement IQ tests were used to exclude immigrants from
the US from origins other than the Anglo-Saxon countries of Northern Europe.
Among IQ tests' other uses in the 1930's and early 1940's were identification
of individuals to be sent to Nazi extermination camps, people to be given
lobotomies, identifying subjects for involuntary medical experimentation in
all kinds of settings, and the forced sterilization of thousands of individuals
in mental institutions.
IQ tests were developed and refined when
nothing was known about autism.
As American state hospitals were slowly
being emptied, our federal Congress got into the act to relieve states of
the tremendous cost of establishing local community-based centres. Federal enabling legislation led to rule-making
headed by psychiatrists and psychologists from those same state hospitals.
The rules established uniform eligibility criteria for adult DD services
by 1972, before any knowledge of autism as a spectrum condition was widely
known.. A low IQ score was critical. You test high, the state says, 'goodbye.'
Over thirty years later,
those criteria remain unaltered, despite advances in knowledge about autism
as a developmental condition with spikes and valleys indicating extreme differences
in the effect of autism across various functions.
Diagnostic age barriers - 22 and lower
Because of the averaging of performance and
verbal measures of IQ, only individuals with a combined score close to or
within the mentally retarded range qualify for DD services, but only if
they're diagnosed with a developmental disorder before the age of 22.
There are lots of late bloomers among us,
yet as far as the DD system is concerned, we're expected to be like dried
straw flowers. Only so much bloom,
only so many petals, and then you suspend the flower from a wire in a dry
place and take it down after all the life has been dried out of it, and there
you have it! In the eye of others we
remain a dried flower advanced to a certain point in our maturity with no
probability of developing further.
We know that human development doesn't work
like that. When DD standards were set
in the early 1970s, almost nothing was known about brain development. We now know there are at least three periods
of rapid brain development, the last one coming just a bit earlier than that
cut-off age of 22.
Adaptive Behavioral Assessments
Adaptive behavioral assessments were developed
by some of the same people who brought us IQ Tests. Even with a diagnosis before 22 and a so-called
mentally retarded IQ, we also have to have extremely low adaptive behavioral
scores. These scales are all subjective
instruments. I've seen them used well.
I've seen them abused, especially by professionals dependent on a system
whose policies are based on budgetary restraints that all but say, 'exclude
everyone you can.
Incidentally, has anyone ever asked why some
spectrum disabilities with hidden characteristics don't have an official government
program age ceiling? Could you imagine
an age of diagnosis ceiling placed on deafness, traumatic brain injury, organic
brain disease, cerebral palsy, or blindness? What IS going on here?
I just thought I'd throw that question in
to stir your juices a little.
For adults over the age of 22, even though
we may tank on a well-administered adaptive behavior scale, we still
aren't eligible for services.
I know that with scarce resources, there
must be gate keepers, but shouldn't their keys open new locks, not ones approaching
thirty five years old?
JUST WHAT SERVICES DOES DD PROVIDE?
Not just starting a file
What kind of services do we get? Think 'medical model'
Personal care
attendants
Habilitation
and transit help
Respite care
for care givers
'Self-directed
services'
Crisis-driven
brief psychological counselling - talk talk talk that doesn't work
DD services are doled out to clients like
pills. Many of these services are identical
to temporary support for persons undergoing rehabilitation from a serious
medical illness or injury.
Just a word about 'self-directed services'.
In our country, they are defined as services purchased directly by
the individual. Most states have no money in their budgets for
self-directed services.
Classic behaviorism in confined settings
I can't think of anyone who would voluntarily
subject themselves to classic behaviorism. Based on negative reinforcement, systematic
violation of confidences and negative discipline, it is unsuitable and traumatic
for autistic individuals. It teaches
nothing.
That's the reason it remains an approach
favored by psychologists who impose their control over individuals in confinement
settings. In such places, you hear
staff mention their worry about 'elopement.'
Funny. I
always thought elopment referred to two young lovers who just take off and
get married. What a novel way to sanitize
a description of escape from our booby hatch.
Psychiatric Medications but not alternative medical services
When things get really dicey, some of us
self-commit or are confined to hospital settings. There, we are put on heavy doses of medication
and seen by classic behaviorists. I
have yet to see a more able autistic person benefit-long term from such ultra-control
measures. We may behave better once
released, but we do so out of fear of seeing the insides of such places if
we start to lose it again.
Of course there's another side to medications.
Many of us need them. Some of us can't have a high quality of life
without them. But there may be alternative
means to assuring a higher quality of life. The DD system, firmly committed
to Western or alopathic medicine, does not support alternatives like naturopathy,
oriental medicine or homeopathy.
HOW TO CHANGE DD ATTITUDES From Mental Illness to ACKNOWLEDGING SPECTRUM DIVERSITY?
OK, enough with
the negatives, and on to fixing this one system.
When you're dealing with even a broken system,
you have to understand its working rules as well rules that render it dysfunctional.
My first suggestion:
Round up all the rules and procedural guides governing
eligibility.
What better way to deal with a system than
to first begin with understanding its rules?
All of them.
These operational guidelines reflect standards
developed further up the policy chain.
Discover Broken Rules and Study the Reasons why they're Ignored or Violated
Rule breaking occurs all the time in complex
systems. Here are two examples:
- Non-uniform
compliance with the rules -- attributed to regional differences or differences
in working conditions from one place to the next
- Rules
broken deliberately by someone breaking them in our favor
With this second kind of non-uniformity,
we have the system both at its weakest and its finest. People within that system determine for
humane, common sense reasons, that a rule should be bent and broken in our
favor. Once we recognize the
reasons -- most of them good, by the way -- we should capitalize
upon and massage this kind of rule breaking very carefully. The fact that someone -- perhaps a lot of folks
-- are cutting us a break means they essentially disagree with those rules.
By their action, they they expose the system for its folly from
the inside.
And that's where we can start. This is where the system begins to take on a
human face. Rather than embarrassing
bureaucrats for their kindness, support them and their humane acts of
defiance very quietly and very carefully.
How to change the system?
Start simply, one centre at a time, and just with a small
group of people in that centre.
We have the information.
To change complex systems, you must think
big but take small first steps. That's what I've asked doctors to do. That's the challenge I proposed to our non-medically
trained professionals.
From our contact with these knowledgable
people, we have training materials at our finger tips. We don't have to re-invent the wheel or get
all hung up about the right way to educate receptive bureaucrats and friendly
low-level rule breakers.
We know the experts. Some of them are us.
If we conduct training at no charge locally, let's
have our training pay off!
Once we do the training, let's be patient
and let the impact of new information sink in. Because we provided the training,
we have an interest in seeing its outcome in attitudes first, and action after
a while. We've waited this long without
a plan. We can wait a little longer
once we've started along with a plan.
Every adult program based upon outdated knowledge
and arbitrary eligibility standards can be handled in a somewhat similar way.
Each program has its rules, and each program has its own internal rule
breakers with whom we can initiate a quiet alliance.
Today, we've just touched on starting change
locally, one centre at a time, one step at a time, slowly but deliberately
putting one foot in front of the other.
It can be done. That's how most of us learned to walk, right?
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