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Roger N. Meyer "...of a different mind "
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Proceedings Submission
ASA/ASSN 'Talking with Us' Conference 2005
Brisbane Australia October 20-22, 2005

Copyright © 2005 Roger N. Meyer
All Rights Reserved



     As a person finally diagnosed with the right label at the age of 55, I spent a total of twenty years on and off between age 10 and my early fifties in psychotherapy.  None, of it 'stuck.'  By the time I finally found a label that fit, I had gone through:

     One thing was common to all of these false starts.  At the same time I was involved with them," I was prescribed heavy dosages of medication to control depression and anxiety.  None of the medications worked.  Between bouts of failed therapy, I stopped taking all medication.  Because I couldn't stop my racing brain at bedtime, I self-medicated with high-octane alcohol during and only briefly following four 'crash and burn crises' in my life.  Thank God I never got into a cycle of chronic alcoholism.  I did try marijuana, which started off feeling good, but then too scary to continue because I couldn't control my hallucinations and fear of totally losing control.

     I must say that I've never been a person into chronic self-medication or substance abuse.

     For a late diagnosed adult, my experience is typical.  Where it may depart from other late-diagnosed adults' experience today is that I went to therapists with an idea that something was wrong, not merely different about me.  In settings from the age of ten to my early fifties, I adopted a competitive stance with them.  I was damned if I'd tell them anything important.  I let them work 'on me' but never 'with me.'  Often, the entire hour was spent in what I'd best describe as a 'slump down,' not a stare down.  I would often spend an entire session not saying a word, getting angrier and angrier with the therapist who wasn't reading my mind.  I didn't trust therapists.  I didn't trust myself.  I'd leave feeling lousy and furious at myself for not having gotten up from my seat and leaving the session, only to return the following week and go through the same thing again.  I did this with medical insurance money.  I did it just as much with money coming straight from my pocket.  Needless to say, no matter who paid, this was money wasted.

     Before introducing my two-stage model for counseling late-diagnosed, more able adults, let me be clear about what this paradigm is not.

Limitations of Mature Adult Counseling As We Know It

     Let's look at why counseling for AS adults really hasn't been developed.  There is a simple explanation for this condition.  There is no money, no insurance programs, and no viable service systems that support the diverse needs of the ever-growing number of adults identified with Asperger Syndrome.

     Counseling services are always given short shrift during times of lean budgets. We've not been able to sustain briefly funded, time-limited experimental programs even when they do demonstrate success.

     Anecdotal reports of success with therapeutic techniques originally developed for children, but modified for adults do exist.  Tony Attwood's modified cognitive behavioral therapy is one.  Elements of Steven Gutstein's Relationship Development Interventionä (RDI) and Michelle Garcia Winner's Social Thinkingä  techniques are also reported as successful with adults.  There are reports of successful use of adult-functional adaptations of Carol Grey's Social Storiesä. However, it must be noted that the originators of these approaches have not systematically evaluated their approaches with mature adults.  There's been no money to do so.

     I don't dismiss anecdotal reports of success.  I'm a firm believer in 'whatever works' for the individual.  However, here's my point:  more able late-diagnosed adults cannot access such counseling -- even if offered by professionals -- because of its cost.  For most adults, being "more able" rarely means more financially solvent.

     Most late diagnosed adults don't want therapy.  They want something else.  They often seek shelter during the aftermath of receiving a life-changing diagnosis.  As they understand more about themselves, they then seek concrete answers to concrete adult life problems.

     I propose that late-diagnosed, more able adults have very diverse needs because of their greater experience of adult life's challenges by the time of diagnosis, and the life-changing effect of late diagnosis.  Very few spectrum-sitting adults, hearing the 'A'  word for the first time, react with flat affective responses like, 'OK, whatever!' even if their new label confirms their differences from the non-spectrum population that they have known or suspected all along.

     Late adult diagnosis deeply impacts a mature person's self-concept.  The diagnosis stirs up issues relating to the individual's childhood, adolescence, and adult experiences.  Those issues are far more complex than those of children, adolescents, or young adults none of whom have the kind of wear on their soles caused by trudging down the path of mature adult roles, responsibilities and expectations.

     I suggest that depending on how far along the post-diagnostic path late-diagnosed adults are, their reconsideration of their entire personhood profoundly affects what kind of counseling they may seek.

Why this paradigm won't work for the average young adult

     Modified counseling models first developed for children anddolescents and young adults don't address the needs of mature adults with complex lives.  At least not at first.

     These young adults are often equivocal about learning more about themselves as persons with the 'A' label.  With such persons, the counselor is also taking on the family of the young adult, along with major attachment and separation issues.  Group work with young adults has been shown to be effective in helping them move along through acceptance of the diagnosis combined with greater curiosity about AS as a condition. Such issues are not ordinarily a mature adult's primary issues immediately following diagnosis.

     They often have a life bereft of mature adult friendships.  They often exhibit a kind of childlike wonder and perseveration about their past.  They ruminate about it.  They engage in excessive navel-gazing.  While there are elements of self-determination stemming from self-discovery about this process, eventually, like Columbus in the new world I come from, and the convict progenitors that many of you are descended from here in Australia, you have to get off the boat and step on dry land.  Many such adults haven't done that, and they aren't about to do that any time soon.

                                    *Global sense of guilt

                                    *Morbid fear of success

                                    *Cannot make decisions themselves; depend on others to make them

                                    *Intractable problems with intimacy and relationships outside the family

                                    *Inordinate dependency upon the approval of others

                                    *Unfathomable sense of entitlement

                                    *Characterize life as always unfair

                                    *Always beat themselves up over every little thing

                                    *Always fail to complete projects they start on their own

                                    *Cannot appreciate the moment or enjoy it for its own sake

                                    *Somaticize their condition into true eating disorders or self-injurious behavior                              

                                    *Defend abusive, neglectful, or criminal acts of parents and care-givers                                                   

     Like insects entombed in amber, every time one encounters them, they don't appear to have moved.  Many autistic individuals are 'in their head a lot.' The challenge for counselors working with these adults is to name the game:


That they dwell in their heads, not the real world.

     That's their prime real estate.  This is not a healthy state of being, and requires special skills for counselors to move such individuals beyond that cycle of rumination and circular thinking.  By having kept themselves in that real estate, just like children living behind the family home's fence, they need some real lessons in opening the gate, walking down the sidewalk, safely crossing the street, and learning not looking back just to make sure their house is still there.  If they keep doing that, they'll never turn the corner and get on with their lives.

     By in large, I am not addressing the counseling needs of such individuals.  They are generally so satisfied with themselves that their desire to experience a shift to their inner-oriented perspective is very weak, or, when put to the test, not there at all.

For Mature Adults, a Developmental Process Within Their Developmental Condition

     Late-diagnosed adults undergo a post-diagnostic experience that is a developmental process unique to each person but with characteristics similar to other adults identified with other hidden pervasive conditions that share the common feature of being spectrum conditions.

     There has been much research conducted with individuals whose conditions exist across a wide spectrum of functional ability.  Some research has studied the differential effects of an individual's acceptance of a life-changing diagnosis and questions regarding 'What's next?' that embrace the individual and other significant persons in that individual's life.

     A number of these other 'spectrum condition' disabilities come to mind:

     My point to this alignment of autism with other conditions that are spectrum conditions is twofold.  First, they are other complex, well-understood conditions with hidden differences.  We can learn much from how individuals with these conditions view the world and how they make their way in it.  Second, the mentally unhinging effect of diagnosis upon other adults with hidden conditions is quite similar.  There are folks who take to the diagnosis easily.  There are others who don't, but no matter their response, they know that some functions others enjoy will be limited with them.

     While there may be similar responses to late diagnosis or late-life onset in these other conditions, one thing isn't similar.

     Recall some of common descriptions of us as children and adults as....

living in our own world

space aliens

lone wolves

anthropologists on Mars

     For most of us, these are apt descriptions of our condition.  We often use them ourselves.  Notice, however, that these phrases do not suggest that we naturally thrive in a world including others.  We have to train hard to even 'pass' in that world.

     In my book, Asperger Syndrome Employment Workbook, I outline a process leading up to diagnosis and the aftermath of late-in-life diagnosis.  What I didn't do in 2001 and what other adult autistic spectrum writers still haven't done well to date is articulate individuals' responses during the immediate time period following diagnosis that could lead recently diagnosed adults to effective one-to-one personal counseling if we decide to seek it.

     One reason we don't seek it is we've been disappointed by our past counseling experiences.  Other reasons are just as obvious.  Personal counseling as it now is defined may be unaffordable.  Furthermore, what may be affordable still doesn't suit our needs well.


     This section is written to and for other late-diagnosed, mature adults.  Where the responsibilities of 'counselor' are identified, individuals in the counseling professions should consider those words addressed to them.

     My model is based on best practices in adult education.  It is based on respect for differences and empowering people.  It is a paradigm based upon counselor adherence to certain values expressed consistently in practice, not paid lip service to in their promotional literature.

     I believe that there are two stages of the counseling experience that may work for late-diagnosed Asperger Syndrome/HFA adults.  Before we get to the first stage, I must mention that there are two common features that counselors in both stages of this two-stage process must share.  The first is a nine-word phrase they should not have in their vocabulary OR their thinking, even if they don't express it:  That phrase is

'If you'd only try harder, you can do X ', whatever X is.

Those words are toxic.  We hear these words from others and from ourselves all the time.  Those are exactly the words we should never hear or think we're hearing from anyone we've asked to only listen and not give us advice, or go to for coaching and training.

     There is a second phrase that must always be a breath away from our questions to which our counselors have no answer, and that phrase consists of three words:

'I don't know.'

If a counselor cannot say these three words out loud and often, and mean them, we haven't found the right person to listen to us.

Stage One Personal Counseling

     When we finally receive a primary diagnosis of AS or HFA we all experience a post-labeling refractory period.  If and when we seek personal counseling during this initial period, what most of us need but don't find is a person highly skilled in active listening who must understand autism in adults.  There are extremely few traditionally trained professional counselors who do.

     It might come as a surprise you that there are more 'non-counselors' who can listen well than there are professionals.  A good listener might be one close friend or a relative who accepts us unconditionally.  These folks don't need to know all the terms and concepts used by so-called autism experts.  These non-professionals know us, and that's often enough to do the trick.  Highly experienced lay listeners might do well in this work.  Persons with good pastoral listening skills could do this work.

     The purpose of this counseling is not therapy.  We're not broken.  We may be traumatized, in shock, terribly confused...all of those things, but broken, no.  We are not looking for an interpreter.  At most, we need assistance translating our experiences just for ourselves.  We've come looking for someone to help us make sense of our diagnosis, mainly through a let-me-talk-it-out process.

     We know when we're through, when we are 'talked out.'  It may take us only a short time to do this, but we need the undivided attention of an honest and active listener to get us there.

     During this talking out process, our counselors might offer us hunches about what we're going through just so they can understand us better.  For this process to work best for us, it isn't necessary that counselors come to a perfect understanding.  After all, we've come to understand our diagnosis.  It's the counselor's job to assist us in doing that.

     As we talk, our counselors should validate our concerns and feelings.  Once we start to express them, things will start making sense to us.  Our counselors must provide us with an empathetic ear, offer few if any suggestions, and have the self-control to not get into immediate problem solving with us.  The reason why our counselors shouldn't do that now is that if we don't have a good understanding of ourselves, how could we solve problems requiring a more certain level of self-knowledge?  Many of us want easier answers.  Surprise!  At this stage, there are no easy answers.  Just simple questions.  By learning how to ask simple questions, the answers will come in time.  Not right away.

     If we have trouble finding words to express ourselves, our counselors have a duty to help us find our own words without suggesting words to us.  At the conclusion of this work, we should experience a slight sense of tension and positive anticipation about 'what's next.'

     Our counselors should also be aware of other co-existing conditions that, from time to time, may overwhelm us.  Remember, we've come to this counselor to talk, not seek treatment for other conditions.  For physical issues, we should be seeing traditional or homeopathic medical experts.  If we have severe mental health conditions, such as serious depression, anxiety, or problems with sleeping, we should seek assistance from mental health professionals who also understand adult autism.  If they deny or question our diagnosis, we ask to see someone else willing to learn about autism from us and from materials widely available to them.

     This counseling should be short-term, but intense work.  Protracting it would only delay getting on with our lives.  As mature adults, we should know that our lives can't always be perfect, but our lives are always going to be too short. 


Stage Two Personal Counseling -- Skill-Building and Training/Coaching

     Assuming we have a reasonably complex, mature adult life, let's say we've come to some kind of peace with our diagnosis.  We're way past the hand-wringing stage, or the 'Yippee, now I know!' stage.  We know that it's time for us to start making some personal changes.  In addition to other kinds of support available to us, we're likely to want a different kind of one-to-one helping experience.  This type of counseling can also be short-term.  It's also likely that we may seek several counselors who have different kinds of skills we need to learn.

     Now we've got concrete problems related to our day-to-day living situation.  We have particular kinds of trouble at work, or specific problems with our family members, in handling our tempers, in being assertive, dealing with our sensory challenges, asking for help at all or in the right way, learning how to reduce our stress, or in finding the right words for specific situations that always throw us for a loop.

     We now recognize that we have ineffective, inefficient or non-existent problem-solving skills.  We also recognize that we need to unlearn habits that don't work well or at all, and formally learn things we can't grasp intuitively.  We know this to be true for AS children.  It's just as true for us.  Finally, we can learn to let go of feeling bad about things we can't do.  There are always other people.  There are always other ways to handle these matters.

     To start out, we need to feel sure enough of ourselves with a coach, a trainer, a person with special abilities to teach klutzes like us how to appear graceful when inside we still feel like rubber-legged fools or ocean mines with horns that even the slightest bump would cause an explosion or a melt down.  Group work with others can come later, but right now we need to feel safe with just one person.

     For this work, we and those who help us should be free to experiment.  For our trainers and ourselves, we are entering uncharted territory.  We should be cautious about folks who rigidly adhere to dogma, special mumbo-jumbo, or insist that we follow the routines of a one-size-fits-all model.  There are two good rules to remember about that type of training.  First rule:  if it still feels stupid after we've learned it, it probably is too stupid to be of lasting value to us.  Second rule:  it's perfectly OK to walk away from a bad trainer or an incompetent coach.

     This work involves healthy self-talk through the steps of learning real skills.  We should leave these settings with a useful set of survival tools.  Work should take on the terms of a contract focused on real learning, final testing of skills in real-life settings, and outcomes generalizable to related situations initially and other situations over time.

     Group work can, but need not follow.  The model here is an educational one a skill-acquisition and training paradigm.  For different issues, we may seek different 'personal education' specialists expert in those issues willing to teach the person based upon our unique learning style.


A Final Word About 'Who'

     According to reports of the few AS individuals who write and talk about counseling following diagnosis, with rare exceptions, they report that persons trained in classical psychotherapeutic techniques of all kinds are of little use, and often do harm.  They report that mental health professionals have too much to unlearn and 'un-think.'  Such counselors also rank their work as more important than the work of coaches, an individual's friends, trainers, or educators, speech language pathologists skilled with semantic-pragmatic issues, occupational therapists highly experienced with out-of-scale sensory conditions, and adult leisure, fitness and recreation trainers.  They report that these counselors are unwilling to engage them in non-office, real-life, walk-around settings to test the outcome of their mutual work together.  Finally, they report that mental health system professionals often protract the relationship with a lengthy termination not for their benefit, but for the professionals' reassurances that it's OK to say goodbye.

     One last note:  After reading a draft of this paper, a counselor I know who spent years in a traditional mental health setting said that more and more she's feeling like an educator and less like a therapist.  Asked how similarly trained colleagues react when she says this to them, she reports, 'They don't get it.  They really don't get it.'


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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