FINDING A GOOD DIAGNOSTICIAN AND A GOOD PERSONAL COUNSELOR

TWO ASPERGER ADULT SHOPPING GUIDES
FOR FINDING A GOOD DIAGNOSTICIAN AND A GOOD PERSONAL COUNSELOR

Roger N. Meyer
Copyright © 2005 and 2007
All Rights Reserved

[This article closely follows an ever-changing understanding of effective diagnosis and counseling for more able, late diagnosed adults. It is reproduced here from presentations I made during a brief lecture tour of Australia in October, 2005. This speech does not refer to the new paradigm for AS adult counseling I presented at the same forums as a contribution to their written proceedings. For AS individuals currently in counseling relationships and for those who do seek intensive, long term work with a therapist, the latter part of this article presents a common-sense approach to such work.]

Thank you for the introduction, and good morning.

I'm going to break two conventions that speakers usually follow. For this presentation, I'm not going to go into my life history or my recent history. For my biography, you can read about me in the conference guide. There will be ample time during our discussion together for me to talk about myself.

I'd like going to settle down to business immediately so that I can complete my speech and leave time for questions from the audience. My later presentations today will allow time during the presentation for a give and take with you as I go along, but I'd prefer to get through this first speech, which contains a lot of detailed material that will, I assure you, answer many of your questions.

A brief observation about these lists. I remain amazed that eleven years after Asperger Syndrome finally made it to being in the book that mature Asperger Syndrome adults haven't prepared checklists like these and shared them widely.

This morning I will present you with two adult consumer shopping guides. The first guide is for finding a good diagnostician. The other much longer guide will help you find a good adult personal counselor in the ideal world of unlimited personal resources and infinite personal time. Most of us don't have either, and that's the reason I've proposed a more "real world" quickie model based on a different set of counseling paradigms in the separate paper I've submitted to the proceedings to this conference.

Harsh as the real world is, it never hurts to dream of what could be, and in so doing, set high standards for ourselves and for others. Hence these two lists.

Those of you in this room with an officially conferred Aspeger Syndrome label can just sit back and review the list I've constructed for those who haven't yet obtained an official stamp reading "Aspeger Syndrome." You may know a few adults who are "one of us" although they haven't trod the path to a diagnostician's office.

The second consumer's shopping guide will help AS adults find good adult counselors who can work with them on issues that come up following diagnosis.

So let's begin with my two shopping lists.

SEEKING THE LABEL

DIAGNOSIS MEANS GETTING A LABEL

Diagnosticians can give us a label that we think fits us. If we want an evaluation that's extra. I will not be talking about evaluations, because we may need to go to different specialists expert in all of the areas where we are having adult daily living problems to get an accurate picture of our strengths and our challenges. Evaluations serve a different purpose. They provide information for us and information for others we ask for specific services or benefits. Shopping for these kinds of experts involves a different set of shopping skills and in the time alloted me, I won't be able to discuss that process now, but later today, we might get into evaluations, especially when we talk about their value to others who we've asked for assistance.

One critical point I'd like to make about diagnosing AS. It is an art, it is not yet a science.

There are diagnostic instruments proposed for children, and all kinds of scales that point towards a high likelihood that a person scoring high on them will be diagnosed with autistic spectrum disorder. However, there's only one instrument developed in the UK by Judith Gould and Lorna Wing, the DISCO, or Diagnostic Interview for Social and Commmunication Disorders that is a helpful diagnostic and counseling tool for Asperger Syndrome adults. Very few diagnosticians and virtually no counsellors have been trained in its use, which takes a trip to the Diagnostic Centre in London for one to be certified in administering it. However, it's safe to say that at this time, best diagnostic practice does not permit the use of only one tool as the clincher, no matter how good it is.

PART ONE

A CONSUMER SHOPPING GUIDE CHECK LIST FOR DIAGNOSTICIANS]

I'm going to take a presenter's liberty in keeping my pronouns simple here. I will be using simple reference to you, me, and we, even though there are folks in this audience who aren't on the autistic spectrum.

If all you seek is diagnosis, here is a thirteen-point consumer checklist to help you find the right professional. You should be able to can ask most of these questions of a diagnostician before they see you.

DIAGNOSTICIAN SHOPPING GUIDE

· A good "street reputation". In advance of seeing a professional, it is OK for you to check out the street reputation of that person. Street reputation is the reputation a person has in the community, not just among professionals. In all instances, no matter who you choose, that person must have experience successfully diagnosing adults of all ages with Asperger Syndrome. "Successful" for your purpose means that other AS adults say they are satisfied with their diagnosis after having visited this professional. To put it very crudely, you are buying a label. You aren't shopping for the label. Label shopping means you would be going from professional to professional until you like what you hear. Asperger Syndrome isn't a designer label and it certainly isn't anything people seek to be fashionable.

Ask what means the professional uses for diagnosing AS

Screening instruments

Personal history

Family history

'Gut instinct'

A custom checklist

Other tools

The diagnostician must have seen and diagnosed other mature adults with Asperger Syndrome. Ask how many persons, and how recently the last person was seen.

If you are in doubt about being Asperger Syndrome, use the precise words "rule out for Asperger Syndrome" These five words have a specific meaning to professionals who understand that you know of the highest standards expected of experts in the diagnosis business. If the person you've chosen does not "do" differential diagnosis, seek another diagnostician.

If you know quite a bit about AS, test the diagnostician's knowledge. Ask the diagnostician for a brief, succinct description of Asperger Syndrome. If you feel funny about the answer, trust that funny feeling and pass that person by.

Ask about their professional development as it applies to Asperger Syndrome. The diagnostician must have taken recent continuing professional education on autistic spectrum conditions from a knowledgeable, respected sources within our community of Asperger Syndrome experts.

Is the diagnostician a good listener? You've got to be careful here, because some very competent diagnosticians are rather cold fishes. Don't look for a perfect bedside manner, but you can sense whether or not someone is a careful and respectful listener. If you don't think they are, pass them by.

The best diagnostic practice with mature adults calls for two diagnostic interviews separted by several days, one in the morning, one in the afternoon. Even highly qualified diagnosticians want to satisfy their hunches, so they'll want to see you again just to determine whether you exhibit the same behavior a second time -- not to make more money but to be secure in their diagnosis. Two visits is the highest standard of practice. However, you shouldn't demand two visits if you feel comfortable with the results after a single session. Minimum acceptable time per session should be at least ninety minutes.

The diagnostician must see you eye-to-eye. This means no telephone interviews, no Internet consultation, and no medical records review without also seeing you in person.

Your diagnosis must be stated in writing. A verbal diagnosis is not acceptable. Remember, if it isn't in writing, other people can challenge your word, and they do that all the time, whether you've sought the formal label from a professional or are self-diagnosed but confirmed by your peers.

Your diagnosis must be unequivocal. You are paying good money for a definitive answer one way or the other, and the professional you see must be able to provide you with a firm diagnosis without a lot of hip swaying and "maybe this, maybe that; I'm unsure"' If they are unable or unwilling to provide you with an unequivocal answer, consider not paying them. They've failed to provide what you've come to them for. If they insist on payment for equivocating, consider reporting them to state medical association or a government licensing and examining board for unethical conduct. Also, consider putting word out on the street that they are unreliable, even flaky. Just report your experience. As as consumer, you have an absolute right to do so, as long as you do not use libelous or slanderous terms.

Does the diagnostician knows of AS adult resources in the community? This is not a "make or break" question, but if you encounter a person who knows of these resources and another person who doesn't, we can choose the person who offers us greater post-diagnosis value for our money.

Does the diagnostician have an active clincial practice with AS adults? Many do not. However, maintaining an active clinical practice keeps a professional's feet to the fire through interacting with us in a different context. Having a clinical practice is a "plus."

These thirteen points only refer to the person who will provide you with the label, not the label and a complete evaluation. Comphensive adult functional evaluations are conducted only by highly qualified neuropsychologists. Those professionsls use batteries of instruments and techniques to determine your strengths as well as your challenges. Such professionals are ordinarily consulted when others need to assess your eligibility for services, accommodations, or in order to assist you for training, education or for making serious decisions about career and lifestyle changes. Additional rules apply for choosing them.

A personal note is in order here.

Following my diagnosis by an MD, I chose to pay for a full adult functional neuropsychological evaluation out of my own pocket. I had come to an end of the road with my 26 year cabinetmaking career. I needed information that would be helpful to me in choosing a new direction. I did this even before I applied for vocational rehabilitation support. I was lucky in my choice of neuropsychologists. He proved willing to learn as much as he could about Asperger Syndrome in adults before he saw me for my first visit. I must say that he proved to be the exception among his colleagues, not the rule. Since so little was known about AS in adults at that time, I had to accept, on blind faith, that he would be competent.

He was.

PART TWO

A CONSUMER CHECKLIST FOR FINDING THE RIGHT PERSONAL COUNSELOR

Before I get into the longer consumer shopping guide for a personal adult counselor, let me state one note of extreme caution. If you have major physical health issues or genuine mental health issues whose symptoms can be relieved by medication or other means known to work for you, you absolutely must attend to them separately while you're seeing a personal counselor for support. Do not expect a good personal counselor to deal with these other issues, or to read your mind if you're bothered by them. Tell the counselor about those concerns, but use common sense and find separate experts who can help you manage those particular conditions.

Some of the items on the checklist below don't require a test run with a counselor. Others apply only once you've seen the counselor. You wouldn't buy a new car without test driving it, would you? The same considerations apply in how a counselor actually fits your expectations. Most important: You should not reject a counselor just because s/he doesn't satisfy all of your expectations. Some of them may be unrealistic and unattainable. Remember that as a person with AS, one thing you may see a counselor for is getting a real-life grip over your perfectionism and your distorted idea of who you are and what you're capable of doing and what, in your mind, other people should do.

Now lets get to our shopping list. Here we go.

PERSONAL COUNSELOR GUIDE - Competency, Experience and Dedication to Counseling

____What kind of a "street reputation" does the counselor have?

____Does the counselor respect the opinions of professionals from other disciplines?

____Is your counselor comfortable with your working with other persons during your counseling relationship with him/her?

____Is the counselor willing to discuss your issues with other professionals you are seeing? (This requires a written release from you. Are you willing to do this?)

____Does the counselor have a reputation for only seeing his/her specialty disability no matter what diagnoses people bring in? Beware of this kind of counselor.

____How much of the counselor's income is derived from private counseling? (This is a test of how serious the counselor is about private practice and keeping up to date.)

____How knowledgeable is the counselor about medications commonly prescribed for adults with Autistic Spectrum Disorder? How willing is the counselor to learn?

____How many AS adults has the counselor seen?

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

____Is the counselor a good listener?

____What weight does the counselor give to your past diagnoses you feel are "off the mark"? Do you think your counselor is filtering what you say through these rejected diagnoses?

____Would your counselor be willing to appear at your request at a disability entitlement hearing? How about submiting materials for vocational rehabilitation or adult education accommodations or for accommodations at work?

Environment Can Mean Everything

Here are tick list items that apply to place and location:

____Is the office's physical location welcoming? Is it in a "friendly place"?

____Is the office convenient to your mode of travel?

____Is the neighborhood of the office 'sensory-friendly'?

____If you are easily disoriented and have trouble finding places, is the office easy to locate and to find again?

____Is the type of setting comfortable for you? Is the office located in a medical clinic, hospital, or educational setting that calls up with bad past memories 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?

Let's look at the counselor's own working space

____Is the room free of sensory distractions? Can you or others be overheard or seen when you expect privacy?

____Is the room temperature comforable for you?

____Is the lighting comfortable?

____Is the color scheme pleasing? Is the room visually supportive or at least 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?

____During your time with the counselor, are you free to move around if you want to?

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

____How private is the counseling space? Can others knock and enter, or call in, or buzz and notify your counselor during your time?

____Is the counselor willing to meet and work with you in places other than the office?

The Personal Factor

Let's get personal. How about the counselor as a person?

Most of the following checklist items are based on the assumption that you've agreed to take a test ride with a counselor. As you go down this list of questions, they imply that you've spent a greater amount of time with your counselor. One thing to keep in mind when reviewing these questions: If they involve things the counselor should know about you, HOW have they learned these things? To put it squarely to you: How much do you expect your counselor to know what's in your mind without telling him/her?

____Is the counselor a"friendly person"?

____Are you comfortable with the clothing the counselor wears?

____Does the counselor demonstrate an unfavorable reaction to the clothes you wear?

____Does the counselor use annoying scents or have a disturbing odor?

____Is there a mis-match between the counselors gestures, posture, or facial expression and their words or actions?

____Does the counselor remind you of someone who is or was troubling you? If this is the case, can you be up front with this issue, right from the start?

____Does the counselor use terms you don't understand or that leave you confused?

____Does the counselor help you articulate your expectations of what you wish to accomplish with your visits?

____Are you clear about what your counselor expects of you? Remember, this is a two person deal!

____Is your counselor comfortable telling you what he/she can't do, won't do,or doesn't know?

____Initially, and as you proceed with your counselor, do you believe the counselor"asks too much or too little" of you?

Let's check this one out a bit. As Asperger persons, one thing we're known to do is attribute things to others we've had absolutely no way of checking out beforehand. One example of this is the thought: "This person expects me to do too much! I can't do this!" With this kind of thinking, we've already concluded that the other person knows, precisely what we're capable of, and we start blaming them for overestimating us. Another thing we do is expect others to do things, to read our minds when we expect more of someone situation than we're getting from them. Then we march off in a snit-fit, with our knickers in a knot!

The only way you and your counselor can get past this dilemma is if you bark up about what's going on. If you're holding onto something expecting someone to guess it out of you, you've got the wrong idea about counseling. It isn't a guessing game. It's hard work, for both of you.

____Does your counselor work on concrete, practical, everyday issues, or is your counselor a kind of touchy-feely, feel good person who really doesn't understand your world?

____Does the counselor understand your sensory issues?

____Does the counselor respect your space? Do you feel crowded or sense the counselor maintains an inappropriate physical distance from you?

____Does the counselor give you enough time to think and then respond?

____Does the counselor really understand your fears?

___Does the counselor respect your special interests?

____Does the counselor help you "find your own words"? Can you describe a process thecounselor could use to help you?

___Does your counselor help you ask questions by showing you how to ask them?

SIGNS OF TROUBLE -- When Bad Things Happen

____Have you come to counseling expecting to satisfy another person's expectations about what you'll get out of counseling? This is called"'the rhinoceros in the room.'" Even if somone else is paying for counseling, this is your time, not theirs!

____Whose agenda am I following? Someone else's or my own?

____We're all adults here so let's get very real about sexual intimacy between a client/patient and a counselor. It's an absolute NO-NO.

____Your progress in working on counseling issues isn't going to be linear, and you have no right to expect "steady progress." People get stuck in counseling all the time, which means they slip and slide about as they make progress but the one thing that's a bad thing is if you can't talk about it or act on your feeling stuck.

____Be mindful if you feel the counselor is trying to fix you. You aren't broken.

____Be mindful of counselors who ask too many WHY questions.

____Counseling is not going well when you repeatedly lose track of your counseling goals.

____Have you slipped into a "Talk Talk Talk" dynamic? Is it getting you anywhere? (Remember the goals you started out with.)

____Be mindful of one-technique-works-for-all people approaches. You aren't "all people."

____Be mindful of counselors who state: "If you would only do what I suggest…" You have not sought counseling to be badgered or belittled.

____Who's in charge here? This is a healthy question, but it also has a healthy answer.

If you see counseling as a game where you "must win", you aren't ready for concrete-issues counseling. Game-playing to win may be the your primary issue. If it is, set your need to mentally spar with others as your first counselling contract issue with your counselor. If you don't, you are setting both of you up to waste time with nothing, ZIP, NADA to show for it.

Here, we're entering into the field of big trouble in counseling:

____I feel abused and disrespected in this counseling relationship. I feel this way a lot!

____If you have either feeling, determine whether you feel safe talking about what's going on your counselor. If you don't, this is NOT a counseling relationship. It is something else.

____I feel unsafe to either talk or act.

____When in doubt in a situation like this, what does your gut tell you, followed by your heart, and then your intellect? Always, always trust your gut in a situation like this.

____If the counselor sees his/her role as that of controller of the process, some of your concern may be legitimate. Let's assume, however, that what has happened during your work with a counselor is that you've become involved in a power struggle. If there is a power struggle going on, the counselor must seek supervision or advice on professional ethics from colleagues. Even if your counselor doesn't do it, you must suspend your visits.

Two things have happened. Either there's no trust left in your relationship, or it was never there to begin with. It isn't your counselor's job to MAKE trust happen, but to help it happen.

_____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 severing your relationship, and be as explicit as you can. Why? First, even if you're mistaken, things have probably gone too far to be patched up. This happens. It's life. Second, by being explicit, you articulate what's gone wrong rather than just wandering around in an angry daze. We often learn more from what's gone wrong than when everything's going OK.

GETTING TO KNOW ME - The Dance

Advanced Checklist Questions That Apply in the Midst of the Counseling Relationship

Counseling is about you getting to know yourself. In order to do this efficiently, folks seek counseling to help them learn. Paid counseling isn't classwork, in the sense that you're the professor and the counselor is your student, so the first question you can and should ask is...

____Am I spending much of my session formally educating my counselor about Asperger Syndrome in general? (Bringing them articles, books, etc.)

Remember, a prime requirement of working with someone you pay to counsel you is that they must have knowledge of Asperger Syndrome. If you find yourself spoon-feeding them about AS in general and paying them at the same time, your counselor is unethical in accepting your money.

____A "friendly question": Who is the student here? Ask your counselor whether s/he wants to learn "with you" rather than "from you."

___What you're educating the counselor about is your particular flavor of AS, but your education of the counselor should have an immediate and personal payoff for yourself.

____Does your counselor "lead", "follow up after you"or "walk along side you?" Would you rather be dragged, pushed, or walk with someone at your own pace?____Can you comfortably interrupt your counselor?

____Does your counselor ask you to explain your meaning of a term that you both use in common?

____Is your counselor willing to initially use your meaning of a term to know you better?

____Does your counselor ask you to describe how you come to a given conclusion?

____If you are a visual thinker does the counselor understand your images metaphors, or examples?

____Does your counselor encourage you to use different means to express yourself? (art, music, story writing, dance, movement, play or other means)

____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."

____As your counselor gets to know you better, can he or she accurately describe what kind of a thinker you are?

____Does your counselor demonstrate understanding of your logic by trying to come up with the same answer for a concrete problem that you arrive at?

____If you use mixed or different senses to experience an event, does the counselor understand synaesthesia?

____How does your counselor know that in your mind you are back at a different time and place as you talk about an event that just happened or is happening now?

____Does your counselor understand how you learn and different learning techniques you use to accomplish certain concrete tasks?

____Are you willing to learn -- not just understand - how other people learn?

This is the difference between cramming your head with more factoids and learning how to put yourself in another person's place. This is not an impossible task, and that's what certain techniques, among them modified cognitive behavioral therapy, Social Thinking and Relationship Development Intervention accomplish with Asperger children. There's good reason to believe that modified appropriately for adults, some of these same techniques will work, but only if you're willing to be challenged and learn from your discomfort. While part of good counseling should help you with your general feelings of comfort and ease, good counseling should never leave you either smug about yourself or others, or just too self-satisfied.

Finally, since your counselor isn't you and entitled to his or her own view of things...

____Can you agree to disagree with your counselor in a way you both feel comfortable?

TIME TO MOVE ON

Time to Go - Concluding the Counseling Relationship

____When you began your work, did you both agree on how and when your counseling would come to an end?

____As your counseling has progressed, have you both developed clear, unambiguous testable ways of determining how permanent is your progress? Is what you've learned going to last long after you stop seeing one another?

____Has the counselor told you in advance how s/he would tell you that it's time to wrap things up?

____How do you know it is time to end the relationship? Have you asked the counselor in advance how to pose this question?

____When you agree to stop, 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?"

Careful here. This is a trick question.

____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?

If you are OK with being a bit uncomfortable about what the next moment brings, that's where good counseling should put you. Good counseling stretches your envelope. It provides you with more resilience and bounce to deal with life's unexpected events.

The best counseling is personal work that prepares you to successfuly deal with situations without always looking over your shoulder for answers. We teach our kids to do that...otherwise they'd never leave the house, and they certainly wouldn't be ready for "what comes next" after secondary school and schooling beyond that.

In our next session after tea, I'll be talking about another type of personal support, peer-led adult support groups. Support groups can provide additional perspective many of us need just to live our lives a bit more easily.

So, to conclude my formal remarks, shopping for a diagnosis, stepping back a bit, and then seeking personal counseling to work on real, concrete issues isn't rocket science. It's common sense. Since many of us are said to lack common sense, I've laid some of the basics out for you with these shopping lists. Both of these lists are works in progress, and can always stand more tweaking.