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Roger N. Meyer "...of a different mind "
Puzzle Pieces Image

'Talking with us'
ASA 2005
Brisbane Conference
October 21, 2005

Workshop Session 10
October 24, 2005
Session Ten 1:50 -2:30 PM

BARRIERS - POLITICS, PRACTISE AND POLICY - WHERE DO WE GO FROM HERE?

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.

 

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...

  I'm sure autistic folks in this room and their family members have heard things like this:

'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..

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 US asked...

 

'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 US, a number of states passed laws prohibiting this practise by educators. Last year when our Congress re-wrote our special education law, it also forbade this odious practise. But since states are the only entities authorized to issue medical licenses, those states that haven't legislated this prohibition are now charged with a federal mandate to get on the bandwagon or lose federal s funds if they don't.

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...

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:

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?

 

Copyright Issues

 

This article is copyright, all rights reserved by the author, Roger N. Meyer.  It may be reproduced in single copy once for personal use, and in no more than ten copies total for educational purposes.  Fair Use is authorized for all purposes and under conditions established by US Statute and the International Copyright Convention, to which the United States is a signatory nation.  No person shall publish, distribute, copy, or by other means make this material available to others for purposes of personal gain or professional self-aggrandizement.  Individuals wishing permission to exercise other than fair use or limited distribution as outlined above must contact the author, in writing, and receive explicit written permission from the author prior to engaging in further use of this material.

 

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