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Roger N. Meyer "...of a different mind "
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ASPERGER SYNDROME DIAGNOSIS

AND CHECKLIST FOR FINDING A GOOD ADULT COUNSELOR

Copyright © 2003/2005 Roger N. Meyer®

All Rights Reserved

 

 

[This material first appeared in an earlier version in Asperger Syndrome Employment Workbook, and in a 2003 presentation at a Celebrate Wellness conference co-sponsored by Oregon Health Sciences University.  It has been modified and updated for easier reading.]

 

I

The Diagnostic Process and its Aftermath

 

 

The following information applies generally to adults who discover that previous misdiagnoses or no diagnosis with a "lifelong feeling of being different" has led them to the point of their seeking the proper label.  For all adults, the diagnostic process, conducted by a competent, knowledgeable and sensitive professional or professional team, is a life-changing experience.  Whether one discovers autism, non-verbal learning disability, attention deficit disorder (inattentive or combined type), or any combination of other developmental or mental health conditions that finally seem to fit, the following description of the process seems to make sense for most individuals.

 

The Awakening

ü Knowing that you are different

ü Realizing that your past diagnoses don't quite fit or are plain wrong

ü Hearing about High Functioning Autism/Asperger Syndrome

ü Curiosity

ü Self-informative research (all sources)

ü Decision to seek a diagnosis ("To Be or Not to Be, That is the Question.")

 

 

INITIAL PHASE -- Getting the Label and the Immediate Aftermath (References are to Autism)

 

·    If you diagnose yourself thorough self-assessment and history (history information often provided by others, principally family), you will have determined that you meet the criteria found in any of the four principal diagnostic criteria sources for Asperger Syndrome:  Gillberg and Gillberg (1989); Szatmari, Bremner, and Nagy (1989); ICD-10 (1993); and DSM-IV (1994).  Because of the current controversy surrounding the validity of the DSM-IV criteria -- especially as they apply to speech development, speech delays and sensory issues as determinants of whether an adult is Asperger Syndrome or not -- this author has preference for the Gillberg and Gillberg criteria.  So do most clinical psychologists who maintain active adult practices.  They tend to be more artful in their diagnosis than many medically-trained professionals as well as other clinicians who remain in a medical clinic cultural setting.  The end stage for your self-diagnosis must involve acceptance by peers (similarly self-diagnosed or individuals formally diagnosed by qualified and competent professionals).  If you don't take this last step, "you aren't there yet."

 

·    If you personally seek a formal diagnosis from an outsider (which process requires your finding a knowledgeable diagnostician), your process should entail

 

*A diagnostic consultation, and on some occasions, verbal statement of your

  diagnosis by the clinician at the end of your first visit; and

 

*Your receiving a formal written diagnostic evaluation by the specialist, often

   including recommendations for medication, ruling out of other medical or

   psychological conditions and referral to personal support services for you in your

   community.  If the diagnostician fails to provide you with documentation of

   your diagnosis in the form suggested above, they may not have met minimal

   competency standards of their profession.

 

 

After you've completed the steps to getting a diagnosis, you can expect the following to occur:

 

 

·    Depression starts to set in (often not noticeable)

 

·    Interest in making a return visit to the professional who may have referred you to a diagnostic specialist for additional information on medications or medical and psychological counseling support available to you in your community

 

·    Your seeking support from post-diagnostic process experts (medical social workers working in perinatal, neonatal, and infant intensive care wards; social workers, vocational rehabilitation counselors and peer counselors working in oncology, HIV, Intensive Care Units, Traumatic Brain Injury emergency and stroke wards and hospices, all experienced in grieving, personal loss and recovery work)

 

·    Your depression may worsen -- sometimes in a way not noticeable to you, but obvious to others --necessitating professional mental health crisis intervention

 

·    Anger -- undifferentiated or targeted.  Generalized anger can render you moody or irritable.  Targeted anger is often directed towards your parents living or dead

 

·    Anxiety and guilt arises over things you believe you "should have known; should have done"

 

·    Your other pre-existing or new medical conditions may intensify, return or erupt as a reaction to your heightened stress and anxiety

 

·    You may experience delayed adverse responses following the "labeling" process, sometimes after six months, a year, or longer

 

·    You may may appear not to be affected by the "labeling" process, especially if your diagnosis occurs after a long period of searching for the right label

 

 

SECOND PHASE -- Sturm and Drang followed by Personal Acceptance

 

 

·    Self-disclosure through journals, self-talk, personal writing to others with no expectation that they do anything other than "listen", rumination and review of your personal history in your family, school, relationships, work, and where you are at this moment in your life

 

·    You become hypersensitive to labels given by others through questioning, correcting, challenging, and arriving at your own self-descriptive terms

 

·    A period of two or multiple "personalities" (non-psychiatric) where you still identifiy with your former self while tentatively testing new self-concepts -- As you unfold your new identity, you become involved in a simultaneous personal grieving process for the loss of your old self-concept

 

·    Laying to rest/laying aside of your old self-identity through formal or informal rituals

 

·    Continuing to mourn the loss of your old identity while struggling to "assess the damage" of having started to adopt a new one

 

 

THIRD PHASE -- The Healing Process Begins

 

 

·    "Nothing is Simple Anymore" -- Your mind is a-jumble

 

·    You seek support from "Those With"

§ Internet listservs, chat rooms, newsgroups

§ In-person support groups

 

·    You start to make non-comparative affirmations of about yourself, reflecting your newly found self-trust and self-respect

 

·    First disclosure to another person  (Your first "small circle" of people who know)

 

The dilemma of disclosure: [these items are listed in no special order]

§ asking others to help you disclose

§ whether to disclose

§ why disclose

§ who to choose first

§ what to say

§ how much to say

§ how to say it

§ when to disclose

§ negotiating for assurances of confidentiality

§ creating and practicing your new "disclosure script''

 

FOURTH PHASE -- Your circle widens by actively informing others

 

·    Response of the first person you disclosed to...(Expect anything and everything.  There are no rules governing how another person may respond.)

 

·    Your first-informed person's adjustment begins by...

§ Discarding their old view of you

§ Mourning the loss of that old view

§ Formulating their new, personal definition(s) of you

§ Accepting your new identity as you express it

 

·    The informed person's healing  (a process often different than yours)

 

·    You and your first-informed person begin a new relationship based on your new self-concept and their new knowledge of you

 

FIFTH PHASE -- Your mature stage of self-determination

 

·    You introduce yourself to other persons who already know you...

§ Through trial and error, you develop different introductory scripts for different "classifications" of persons

§ Doing this well depends on your finding safe persons with whom you can pre-test and rehearse your introductory scripts

§ You articulate clear rules for others about what they disclose about you  (don't  assume they "just know")

 

 

 

 

 

II

"Testing Testing…Is this Thing Working?"

The Adult Clinical Counseling Experience

A CHECKLIST for Choosing a Counselor for an Ongoing Relationship

 

 

Introduction

 

     The checklist found below is useful for persons seeking a counselor or who are already in a relationship with a counseling professional.  The counselor may or may not have an advanced degree.  Some of the best counselors don't have advanced degrees.  The list is of equal value whether the counselor/professional is paid or unpaid, whether paid by a third party (insurance of some kind) or directly from your own pocket.   Third party payment sources can include parents or subsidized family counseling in which you are seen separately from other family members.  Some of the check list questions below apply only for professionals whose scope of practice is limited to evaluation and diagnosis.

 

     This checklist assumes that the counselor understands and can apply effective approaches for cognitive behavioral therapy with modifications focusing on affective education appropriate for individuals with Asperger Syndrome.  If the counselor uses other approaches, they must be compatible with the objectives and techniques of cognitive behavioral therapy.  Furthermore, the counselor must agree to your conditions of applying a limited time to your work with each other (no open-ended arrangements!) and agree that your work together will focus on coming up with permanent means of resolving specific, concrete problems that you can apply on your own once counseling has come to an end.

 

     In other words, "no warm fuzzies."

 

     Many professionals with inadequate experience working with Asperger Syndrome adults use variations of a "how are we doing today?" scale to gauge the individual's general mood when they arrive or to assess progress throughout the counseling session.  Many of us  do not know how they we are  doing, nor are we accurate reporters of our emotional states before, during, or after counseling sessions.  That's one of the main reasons we seek counseling...to learn how to do this.  Because we are autistic, this hasn't come naturally to us.

 

     One prime purpose of seeking counseling should be for AS adults to get a better understanding of their emotions.  We all have them.  We all employ our emotions in solving real, concrete problems involving other people.  Many AS individuals seek counseling because we want to understand ourselves better, but, more importantly, we want others outside of the counseling relationship to understand us.  This type of understanding always involves emotions, or to use a clinical term, affect.

 

     The long-term test of effective work with us must be whether we are better able to deal with our emotions in the real world outside the counseling office as a consequence of our counseling.

 

     One important point to remember:  As an adult, you have the power to make choices about seeking treatment and determining for yourself whether a professional is helping you or not, whereas children often don't.  One choice you have available to you is to turn away from well meaning but  incompetent persons who often end up damaging you more during your time with them than if you had never met them. 

 

     Too many of us have had repeated experiences where this has happened.  Our disappointing past experiences with ineffective counselors often makes us cynical about the prospect of any further work with counselors. 

 

     You will have fewer such concerns about finding a counselor who works for you by working with you once you use the check list, below.

 

 

I

Competency

 

§ Is the counselor a good listener?

 

§ Does the counselor respect the opinions of other professionals not in his/her discipline?

 

§ How many AS adults has the counselor seen?

 

§ Can the counselor provide you with a clear, succinct description of AS?

 

§ Is the counselor licensed to diagnose?  If you are seeing a professional for a diagnosis, is the diagnosis subject to question by others?

(Know the difference between MD's and other clinicians' diagnoses)

 

§ Is the diagnostician known for seeing only the "diagnosis of the decade"?

Example:  "Sees ADD, OCD, PTSD, Learning Disabilities", in everyone consulting him/her

 

§ Is the diagnostician willing to show you a typical redacted evaluation?

 

§ What kind of a "street reputation" does the counselor/professional have?

 

§ Does the professional have an active, ongoing client/patient caseload?

 

§ How knowledgeable is the professional about medications commonly prescribed for adults with Autistic Spectrum Disorder (ASD)?

 

§ What weight does the counselor accord to diagnoses you feel are "off the mark?"

 

§ What means does the professional use for diagnosing AS?

Screening Instruments

Personal History

Family History

"Gut Instinct"

 

§ Is the professional willing to provide you with an unequivocal, written

      diagnosis?  Is the professional willing to testify or provide supporting

      documentation to others for forensic purposes?

 

 

II

Appearance Can Mean Everything

 

§ Is the office physical location welcoming?

 

*Is the office convenient to your mode of travel?

 

*Is the neighborhood of the office "sensory-friendly"?

 

*For a person who is easily disoriented, is the office easy to locate, and to

   find again?

 

*Is the environment upsetting?  Examples:  is the office located in a

   medical clinic, hospital, educational institution with bad associations for

   you?

 

*If there is a waiting room, how "private" is it?  If you are uncomfortable

   in the waiting room, does the counselor have another way of admitting

   you to his/her office?

 

 

§ The consulting/counseling area

 

*Is the room free of sensory distractions?  Can you or others be overheard

   or seen when you expect privacy?

 

*Is the room temperature comfortable for you?

 

*Is the lighting comfortable?

 

*Is the color scheme pleasing and is the room visually supportive or

   neutral?

 

*Is the room free of "work clutter" i.e. files, papers, piles of written

   materials?

 

*Is there a readable clock visible?

 

*Is the seating comfortable?

 

*Are you free to move around if you want to?

 

*Is there a clear, unencumbered path between where you sit and the door?

 

*Is the room truly private, or can others "knock and enter", call in or "buzz

   or notify" your counselor during your time?

 

§ About the counselor himself/herself

 

*Is the counselor a "friendly person"?

 

*Are you comfortable with the clothing the counselor wears?

 

*Does the counselor use or wear scents or deodorants that affect you?

 

*Do the counselor's gestures, posture, facial expression match his/her

   words or actions?

 

*Does the counselor remind you of someone who is or was troubling you?

   If this is the case, can you be upfront with this issue, right from the

  start?

 

*Does the counselor say things or use terms you don't understand?

 

 

III

"Soft Skills -- The Personal Factor

 

§ WHOSE JOB IS IT TO UNDERSTAND ASPERGER SYNDROME ?

 

*Are you spending most of your sessions formally educating your

   counselor about your condition?  (Bringing them articles, books, etc.)

 

*Do you have the sense that your counselor is "learning on your nickel"?

 

*A "friendly question":  Who is the student here?

            If your counselor bristles at this question, ask your counselor whether

he/she wants to learn "with you" rather than "from you."

 

§ A Matter of Style - WHO DO YOU TRUST?

 

*Trust Issues:  Trust your gut, your heart, and then your head, in that

   order.  Remember [PDQ Bach] Peter Schikele's statement:

"If it sounds good, it IS good."

 

*Does the counselor "lead", "follow" or "walk along side?"

   Examples:  "I'm the expert here";  "I'll wait until you tell me",

   "Let's take a walk together".

 

 

*Does the process bear the signs of a power struggle?  If it becomes

  that, either yours or the counselor's, question what is going on.

 

If you see counseling as a game where you "must win", you aren't ready for concrete-issues counseling.  That may be the your issue.  If it is, that issue must be the subject of your first "work contract" with a counselor.

 

If the counselor sees his/her role as that of controller of the process, some of this concern is legitimate.  If there is a power struggle going on, the counselor must seek supervision or advice on professional ethics from colleagues.  The counselor's work with you should not continue until this matter is resolved by the counselor to the counselor's and your mutual satisfaction.

 

You are not there to be abused or disrespected.  If you have either feeling, determine whether you feel safe talking about it with your counselor.  If you don't, this is NOT a counseling relationship.  It is something else.  It is your responsibility and no one else's to address this issue.  The one thing you can do is leave.  Before leaving, consider telling the counselor why you are terminating your relationship, and be as explicit as you can.

 

The hope is that if an abusive counselor hears this same issue from enough dissatisfied "customers," maybe he or she will change their approach.

 

*Does the counselor offer to work on concrete, practical, attitude and

   behavior issues?  (Cognitive Behavioral Approach)

 

§ A matter of respect [checking for negatives]

 

*Does the counselor want to have a view of you as a "whole person"?  Or

   does the counselor only want to work on "parts?"  If that is the case, ask

   the counselor how s/he intends to integrate them once you understand

   them better.

       (Remember that AS is a PDD, a pervasive developmental difference)

 

*Be mindful when some counselor offers to "fix" you.  You aren't

  "broken."

 

*Be mindful of some counselors' overuse ( for you) of WHY questions

 

*Be mindful of the pitfalls of "Talk Talk Talk" therapies

 

*Be mindful of one-technique-works-for-all people approaches

 

*Be mindful of counselors who state:  "If you would only do what I

  suggest…"

 

*Does the counselor let you interrupt him/her?

 

 

§ A matter of understanding

 

*Does the counselor ask you for your clear expectations about what your

  work with him/her will accomplish?

 

*Is the counselor clear about what he/she expects of you?

 

*Does the counselor "ask too much or too little of you?"

 

*Can the counselor accurately describe what kind of a thinker you are?

 

*Does the counselor ask you to explain how you "come to a given

   conclusion"?

 

*Does the counselor ask you to explain your meaning of a term?

 

*Is your counselor willing to initially use your meaning of a term?

 

*Does the counselor demonstrate that he/she understands "your logic" by

   coming up with the same answer you would arrive at for a problem?

 

*Does the counselor understand your sensory issues?

 

*Does the counselor give you enough time to respond?

 

*Does the counselor encourage you to use different means to express

   yourself?

Examples:  Art, Music, Dance, Movement, or other means

 

*Does the counselor respect your space? Do you feel crowded or sense

   the counselor maintains an inappropriate physical distance from you?

 

*If you are a "visual thinker," does the counselor understand your images

   metaphors, or examples?

 

*If you use mixed or different senses to experience an event, does the

   counselor understand synaesthesia?

 

*Does the counselor understand the difference between perserveration

   rumination, and "obsessive thinking"?

 

*Does the counselor understand your time reference when you describe

   your memories?  Does your counselor know that sometimes in the

   present that you are thinking as you did in the past?

 

*Does the counselor understand what kind of instruction, training, and

  directions you need in order to accomplish a task?

 

*Does the counselor really understand your fears?

 

*Does the counselor respect your special interests?

 

*Does the counselor help you "find your own words"?

 

*Does the counselor help you ask questions by showing you how to ask

   questions?

 

*Is the counselor open to using other places than his/her office to work

   with you?

      Example:  Some business managers work best not from their offices, but by "walking

       around."

 

*Can the counselor "agree to differ with you" in a way you feel

   comfortable?

 

*Is the counselor comfortable telling you what he/she can't do, won't do,

   or doesn't know?

 

*Is the counselor comfortable with your working with other persons

   during your counseling relationship with him/her?

 

§   Time to Go -- Moving On

 

                        *When you began your work, did you both agree on how and when your

                           counseling would come to an end?

 

                        *As your counseling progresses, have you developed clear, unambiguous,

                           testable ways of determining your permanent progress?

 

*Has the counselor told you that it is time to consider ending your time

   with him/her?

 

*How do you know it is time to end the relationship?  Have you asked the

   counselor?

 

*If you agree to termination, have all your expectations been met?  Could

   they all have been met? (It helps to be clear in your mind about this.)

 

*Upon leaving, do you have a clear idea of "what's next?"

 

*If you don't know exactly what the next step is, as a result of your

   relationship with the counselor are you more comfortable with some

   things not being clearly laid out for you?

 

Notice about Copyright

 

This entire article is copyright by Roger N. Meyer, protected by US and International Copyright Convention law.  The term All Rights Reserved in the article's title heading means just that.  This article is not to be republished, redistributed, or reproduced except for a single, personal copy to be used on a one-time basis by a single individual.  For any other use, express, written permission must be obtained from the author.  Absence of a response from the author is not to be construed as permission to use this article in any other way.

 

Author Contact Information

 

Roger N. Meyer

Email:  rogernmeyer@earthlink.net

Phone:  503-666-2776 (United States)

 

 

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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