 |
 |
Proceedings Submission
ASA/ASSN
'Talking with Us' Conference 2005
Copyright © 2005 Roger N. Meyer
All Rights Reserved
INTRODUCTION
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:
- Child and adolescent psychotherapy
based on Freudian and Neo-Freudian models
- Non-directive, person-centered
psychotherapy based upon the work of Carl Rogers
- Gestalt Therapy based
upon techniques developed by Fritz Perls with Fritz Perls
- Several types of 'Reality
Therapy'
- Neurolinguistic Programming
- Reichian and Neo-Reichian
Therapy based on the work of Wilhelm Reich and Ida Rolff 'worked on' by
Ida Rolff)
- Structural Integration
Therapy (a milder form of body manipulation and postural exercises designed
to get to emotional awareness and mind-body integration
- Introductory sessions
with a Jungian therapist
- Family Therapy (with
Virginia Satir)
- Primal Scream Therapy
(the whole nine yards!)
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.
- It does not apply to chronically
behaviorally challenged, less able late-diagnosed mature adults with little
or no independent living experience.
- It most likely will not
work with mature adults with a history of foster care as children, residential
care, group home placements or frequent hospitalization.
- It does not pertain to
professionals whose entire practice is limited to differential diagnosis
who have no active clinical practice with more able ASD adults.
- It is unsuitable for already
diagnosed children, adolescents, and young adults in the awkward age
between their late teens and mid-twenties who live with their parents or
care givers.
- It is unsuitable for most
just-diagnosed young adults regardless of their degree of independence.
- It will not work for persons
who are pushed to diagnosis by other people's agendas who then deny or fight
their diagnoses.
- It is not a paradigm to
be applied rigidly or inflexibly on a one-size-fits-all-basis. It is not a technique or method-based paradigm.
- This paradigm is not based
upon classical behaviorism as that approach is practiced by practitioners
steeped in medical, mental health, 'autism industry' or rehabilitation service
system training.
- It is not proposed for
group work.
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.
- The younger a person is, the less adult
life experiences and fewer critical choices they've had to wrestle with.
- Mature adults' needs for personally satisfying answers about HFA/AS
are materially different than those of young persons. Unlike younger persons who are chronologically
closer to the late childhood and adolescent process of individuation, mature
adults accepting their new diagnosis usually have a well-developed notion
of who they are. They may be wrong,
but that's another issue.
- As they adjust their self-concept during to the immediate aftermath
of diagnosis, mature adults well into their lives don't seek therapy as
therapy has come to be known. They
also don't want to be 'fixed.' At
first, they seek persons who will just listen to them as they talk out initial
major insights about themselves. While they talk, they benefit from accurate
information about AS/HFA in order to make sense of their particular flavor
of it.
- Many young adults regardless of when they were diagnosed remain infantilized
and overprotected by their parents and care givers to the point where their
entry into the world of adult functions and responsibilities is actively
opposed by caregivers bent on making their adult children's' lives free
from the bumps and scrapes of the adult experience.
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.
- Many late-diagnosed adults long under parents' or care giver's roofs
don't have much of an independent life, nor do they easily develop ones
once they're forced out into the world.
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
- There are behaviors in such adults' lives as well as attitudes that
are difficult to deal with, whether in one-to-one counseling or group work.
*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
- There is a perverse aspect to self-reflection that puts many inner-oriented
individuals -- regardless of their actual family or independent living status
-- into a virtual state of suspended animation.
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:
- 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)
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.
A TWO-STAGE ADULT COUNSELING MODEL BASED ON ADULT EDUCATION
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.'
