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The Risks Associated with an “Asperger’s” Label

Many adults who have struggled for many years feel a sense of relief when they finally get a formal “diagnosis.” They may say something like, “It was such a weight off my shoulders to finally understand why I behaved the way he did. I thought it was a personality flaw, but now I see it was the disorder instead.”

Those who have had emotional problems and/or social difficulties since childhood find it comforting to one day discover, “Oh, I have Asperger’s! No wonder I haven’t been able to hold a job or find a girlfriend/boyfriend.”

Unfortunately (or fortunately, as the case may be), finding comfort in having a “disorder” comes with a price – a much larger price than most realize they have paid. For example:

1. Not all undesirable diagnostic traits can be helped with therapy.

There are some difficult cognitive and behavioral characteristics associated with Asperger’s (AS) and High-Functioning Autism (HFA) that come with the “autism-package” (e.g., insistence on routine, narrow range of interest, etc.). However, some “problems” associated with AS/HFA cannot be helped with therapy (e.g., social skills training for those who lack such skills, Cognitive-Behavior Therapy for those who suffer with anxiety, etc.). 

So, when you discover that you have this disorder, do not fall into the trap of saying something such as, “Well, now that I know what I’m dealing with, I can go get the proper therapy to fix it.” However, the good news is that many troublesome traits (e.g., meltdowns, anger control issues, depression, etc.) can indeed be ameliorated.

2. A self-fulfilling prophecy may manifest itself – either positively or negatively – when it comes to labels.

When you “buy in” to a label (e.g., AS or HFA), you begin to view yourself in a distinct light. You “reframe” your character such that your “diagnosis” becomes a part of who you are. The reframe, in and of itself, doesn’t come with any major complications. However, with the new reframe comes a unique way of “thinking” about yourself and others. This mental shift results in a unique way of “feeling” about yourself and others, which in turn results in a unique way of “behaving” and conducting your life. In other words, you begin to “live up to” your diagnosis, displaying more and more of the traits that are in alignment with the diagnostic criteria of your “disorder.” This is a self-fulfilling prophecy working toward “dis-ability” rather than ability.

Conversely, many adults on the spectrum who have sought counseling have been advised (by therapists who have experience with the disorder) to “reframe” AS/HFA in a positive light, thus setting-up a self-fulfilling prophecy that works toward “ability” rather than disability. Everyone on the spectrum has significant areas of strength (even if this has not been translatable into tangible success yet).

In reframing, AS/HFA is thought of as a “condition” full with possibilities, strengths, and challenges that are able to be addressed adequately. In this state of mind, you will tend to view yourself as “able” (and maybe even better off than the general population). With this mindset, you may very well “set the world on fire” with your area of expertise (e.g., engineering, computer programming, etc.).

3. Labels tend to help the person abandon a level of responsibility.

If you receive the label of AS/HFA, you can say to yourself and others, “See, this is why I can’t - or don’t - do certain things. It’s not my fault – it’s my disorder.” When others are in agreement that you are “not able,” you are free from meeting certain expectations from family, friends, co-workers, employers, etc. You can safely lower your standards, settling for the “comfort zone” that comes with the assistance (or over-assistance) of others.

There are hundreds of 25-year-old adult children, for example, with AS/HFA who are still living at home playing video games all day. Why? Their parents “bought into” the “disability reframe” years ago. As a result, the adult child behaves in accordance with his label, even though - WITH THERAPY – he could likely be employed, happily married, and living on his own home.

So, are labels bad?

Does all this mean we shouldn’t have any labels? No! Without labels, you wouldn’t be able to understand “clusters of traits” (i.e., a set of symptoms that defines a particular mental, emotional and behavioral state). However, it is important to “reframe” the label as an opportunity to exploit your strong points AND address the areas that present challenges. 

Thinking in terms of being “ability-based” rather than “disability-based” is empowering and helps the labeled person to be all that he/she can be rather than settling for a life of mediocrity.

As one adult with Asperger’s stated:

“I think it's only a ‘disability’ because the world is not well-matched for those of us on the spectrum. I can't think of any of my issues that couldn't be solved by simply being in a more autism-friendly world. I am high functioning in spite of my issues and am not "disabled" in any part of my life that matters to me. I can do what other people do, just with a bit more effort sometimes. But most NT’s can't do what I do, so I win. I think that Asperger’s is a ‘difference’, and what can be different can be beautiful.”

Living With Aspergers: Help for Couples

Should You Disclose Your Diagnosis to Others?

When you have been diagnosed with an autism spectrum disorder, you walk a fine line. Often times under certain circumstances, you are perfectly capable of behaving "typically." Other times, not so much. And it's not easy to predict when things will suddenly become stressful.

If you say something such as "I have a disorder called Asperger syndrome" to a co-worker or a neighbor, you may set yourself up to be treated differently (and perhaps unfairly). But if you don't tell, there's the possibility that a sensory issue or misunderstanding could lead to some real issues (e.g., being viewed as volatile of rude).

So, should you disclose to others that you have Asperger's (high-functioning autism)? If so, who should you tell, and how much information should you provide?

The answer is threefold:  
  1. There will be occasions when you should not disclose at all.
  2. There are other times when partial disclosure will suffice.
  3. There are times when full disclosure is needed.

Let's look at each of these in turn...

1. No disclosure: In cases where the information could be used against you (e.g., telling a co-worker), no disclosure is advised. Sometimes, the workplace can be cruel, and an employee on the autism spectrum is often a sitting duck for the office bullies. So, with the possible exception of the boss and/or supervisor, your co-workers are best left in the dark about your disorder (unless you have one that you can really trust).

Here's one exception to #1: In some cases, it may be appropriate to educate your fellow employees about autism spectrum disorders. If you decide to disclose to a group of people, be sure to do some planning and preparation. You may choose to make the presentation yourself, or if making a presentation like this is not a strong point for you, you may be able to get a therapist or an outside professional to talk to the group. In any event, it may be in your best interest if some of the people at your place of employment learned a few things about autism spectrum disorders.

2. Partial disclosure: In those cases where someone will be working with you in a group context rather than one-on-one (e.g., a karate coach), or the relationship will be temporary (e.g., 3-day training seminar), partial disclosure will usually suffice. For example, if you're taking karate lessons, you may do well most of the time. So, a partial disclosure could be: "I'm the type of person who really needs structure, so if you're going to make a change, it would help if you tell me before class. When things are unpredictable, I get anxious and may have an issue." In this way, you are giving the coach a "heads-up" about a potential problem without divulging your actual diagnosis.

3. Full disclosure: In those cases where someone will be working closely - and frequently - with you (e.g., professor, therapist), full disclosure would be necessary. Also, for those who will be having an ongoing relationship with you over the years (e.g., wife, in-laws), full disclosure is needed. In both of these scenarios, certain people will be having a lot of contact with you, so it is vital that they know as much as possible about the disorder and how it affects you particularly. In this way, they will know what to expect, and possibly how to help prevent issues before they arise.

Having said all of the above, the bottom line is this: The disclosure decision is up to you.  What's right for one person on the spectrum may not be right for another.

Living With Aspergers: Help for Couples


COMMENTS:

•    Anonymous said… After being on crutches once I decided that I prefer an invisible difference. I try to avoid places and people where my sensetivities may be triggered - mostly sound. Being retired helps. I have some physical limitations that I don't mind sharing - limited use of my hands due to nerve damage. That one keeps people from thinking ill of my when I don't volunteer/help out in some situations.
•    Anonymous said… definitely caught between a rock and a hard place kinda choice ... and yes, even people who knew you, like forever, look at you differently .... I really think the medical profession needs to stop looking at the autistic spectrum as a disorder. What if its the so-called neuro-typical people that have a "disorder"? To me, its like saying being female is a disorder because men have/did have all/most of the power.in defining what is "normal".
•    Anonymous said… I am in autism educator in a high school and I didn't tell anybody especially my employers until I was three years into the job. Because yes, it is natural to treat someone with a behavior disorder very differently then someone without.
•    Anonymous said… I am very self-conscious about my diagnosis, so I only tell people on a need-to-know basis. When it comes to dating, I wouldn`t disclose my condition on a first date, because I am afraid that it would scare him away, or he would make assumptions about me. I would wait a little while until he gets to know who I am as a person, then I would disclose if it is obvious to me that we have a future together and/or my condition is or could become an issue in our relationship.
•    Anonymous said… I told my co workers I have Aspergers and it helped them understand me better. It's helped so much. They now give me plenty of warning if things are going to be changed or if there's a disruption to the normal functioning of the office. They overlook it when I'm being awkward. I'm really pleased I told them. It doesn't embarrass me; it just helps others understand me.
•    Anonymous said… I was only diagnosed last year so I haven't been in too many situations where I've had to make this decision. I actually did disclose to a group of co workers because , at the time, I felt it was the best thing. I had taken something literally and people were kind of.. perplexed so I said that sometimes I take things literally or will answer rhetorical questions. And someone (who would later briefly be my supervisor) said "oh then it will be easy to play pranks on you!" and at that point I said " I have Asperger's and the way my brain is wired I take things literally". Honestly, I said it because I wanted to make them feel like a jerk (because she was being a jerk) but I also wanted other people to know and think twice in case anyone was thinking it but not saying it. I never disclosed to the managers I worked with and I'm thiking maybe I should have. I don't know. I was previously misdiagnosed with bipolar disorder and I have disclosed that to co workers and also to bosses on an individual basis with mixed results
•    Anonymous said… I'm afraid to tell others just because I'll be viewed as different. Honestly it doesn't make sense cuz I'm definitely already different with my short hair, Wing agender, my being antisocial. I guess I don't want to be viewed as stupid by closed minded nt's.
•    Anonymous said… People have such a misunderstanding of Asperger's and the autism spectrum, that I prefer to stay in the closet so to speak.
•    Anonymous said… Very good article

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