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How I Live with Asperger’s: Tips from a 52-Year-Old Aspie

My name is Carlos and I’m 52 years old. I was diagnosed with Asperger’s back in 1997 at the age of 32. Through many years of painful trial-and-error, I learned a few things that have helped me cope with my disorder. I tried to be proactive from the very beginning of my Asperger’s journey –  learning about the disorder, being honest with myself regarding my challenges, and finding the areas where I had strengths so I could become even stronger in those areas. I also give presentations in some schools here in my community to educate children about autism spectrum disorders.

I was asked to share my coping tips with the readers of this blog. So, here goes…

Below are THE TOP 10 most important things I do – or have done – that have helped me to lead a relatively ‘normal’ life. I trust that you will find something here that will help you, too.

How to live with Asperger’s:

1. When I first learned that I was on the autism spectrum, I consulted a psychiatrist, Dr. Wright, to learn more about Asperger’s. He developed a treatment plan to assist me with daily living skills, and he helped me to develop a few crucial social skills. For example, how to converse with people in different social situations, how to engage in small talk, how to show an interest in the other person’s area of interest instead of droning on about my favorite topic, just to name a few.

2. I learned that when someone is talking about a problem in their life, they are not necessarily asking me how to solve it (even if I have the answer). As an alternative to offering solutions, I simply ask them how they feel about the issue or what they have already tried – or are considering trying – to solve the problem. This lets them know I do have empathy, and respect their ability to solve their own difficulties.

3. I try to talk “with” people rather than "talking at" them. I used to go on and on about one topic until the listener simply excused himself/herself. I think a good ratio in a one-on-one conversation is to talk about 30% of the time and listen about 70% of the time. I try not to talk for more than a few minutes at a time, and I let the other person set the pace of the conversation.

4. Since I don't always pick up nonverbal cues about other people's feelings, I simply ask if they are interested or have time to listen before I launch into an elaborate conversation on my favorite topic.

5. I’ve learned the importance of maintaining eye contact, but without staring. The best way I achieve this is to look at the person’s right eye briefly, and then shift to their left eye. This is followed by a few seconds of no eye contact.

6. I’m a member of several clubs that feature activities of interest to me (I’m a big civil war history buff).

7. I don’t discuss sensitive topics. For example, if someone wants to know about my disorder, I keep my explanations rather short and sweet without revealing the areas I struggle in. I’ve discovered that some people will use the information against you. If you self-disclose too much regarding the deficits associated with the disorder, some people may feel they have license to correct or berate you.

8. I’ve learned to pay attention to the “anxiety-triggers” that often launch me into a meltdown. For example, bright lights, crowded stores, loud sounds, unexpected changes in routine, just to name a few. I avoid – or at least minimize – these situations.

9. In addition to knowing my triggers, I also have learned to pay attention to the behaviors I exhibit when I am in the process of “flipping-out” (sometimes I start to pace, talk more rapidly or less coherently, fidget, or rock back and forth). When these signs appear, I try to find a quiet spot, breathe regularly and deeply, relax, and focus on pleasant thoughts. This usually prevents – or at least minimizes – my meltdowns.

10. I’ve saved the best for last: Prayer and a strong Faith. Honestly, I don’t know how people who don’t have God in their life cope in this crazy-ass world we live in today. The world is going to hell in a hand basket as far as I’m concerned. Country music singer Billy Currington said it best: "God is great, beer is good, and people are crazy."

Peace to all my Aspie brothers and sisters out there,

Carlos


==> Living With Aspergers: Help for Couples

The 3 Anger Styles of Adults with Asperger’s

“I never know what to expect from my Asperger's partner. Sometimes she's as cool as a cucumber. Other times, she’s the devil incarnate. Her anger button is either full tilt boogie – or virtually non-existent. It’s one hell of an ‘on-again off-again’ emotional rollercoaster ride at times (she either launches into a rage, or is totally silent - and even somewhat submissive/apologetic).”

Many adults with Asperger’s have reported anger-control problems. They may become hostile, or may withdraw into themselves and become very quiet, silently stubborn, and depressed. Others fall somewhere in the middle of these two extremes.

The anger styles for these individuals tend to fall into three main categories: aggressive, passive, and passive-aggressive.

Anger Turned to Aggression—

The “aggressors” are easy to recognize. They can be hostile and antagonistic. Common signs of anger-control problems for “Aspies” that are aggressors include:
  • Destroys property
  • Frequently vocalizes anger
  • Furious temper
  • Loud voice and yelling
  • Blames others for the relationship difficulties
  • Makes threats
  • Verbally abusive
  • Often demeans or swears directly to others
  • Excessive complaining
  • Uncontrollable fits of rage 
  • Meltdowns

The aggressors create an unsafe situation for themselves, for others, or for property around them. If spouses or partners are the focus of physical aggression, the problem is extremely crucial to address.

Anger Turned to Passivity—

The passive individual can also be fairly simple to recognize. They are somewhat submissive. They do not argue or fight back when confronted – rather, they “shutdown.” This person’s traits may coincide with the diagnosis of depression. Some of the warning signs below are taken from the diagnosis for depression, and others are additional common signs of shutdowns:
  • Deals with difficult emotions by “cutting” them off
  • Isolates when upset
  • May be extremely passive to the point of getting “walked on” by others
  • Has difficulty expressing emotions
  • Holds anger in, then “blows up” suddenly
  • May be seen as a “loner”
  • May blame self unnecessarily
  • May have few friends
  • May simply “go along” with whatever - even when it is a poor decision
  • Often has an upset stomach, muscle aches, backaches, headaches, or other physical symptoms from “holding it in”
  • Appears depressed
  • Seems to have very little emotion
  • Appears withdrawn

Passive individuals are in danger of destroying themselves emotionally from within. They have no emotional release valve. When they blow up, they can become violent, which can result in harm to themselves, others, or property. Internalized anger is as destructive to the passive person as aggression is to the aggressor.

Anger Silently Planning Revenge—

Perhaps the most difficult to detect, passive-aggressive individuals engage in an anger style that appears calm on the surface, but is fuming, scheming, and plotting underneath. They give the appearance of a passive person, and do not directly confront the anger as an aggressor would do. They are docile and appear to accept what is said, but then will ignore what is said to do their own thing. They can be devious, and oftentimes go unnoticed by others.

Unlike the aggressors, they lack the courage to be direct, and instead perfect the skills to be sneaky. They seem to know where the “back door” to revenge is – and use it often. The list of passive traits also applies to them, but here are a few additional traits to look for with passive-aggressive Aspies:
  • Inconsistency between what is said and what is done
  • May be very good at blaming others
  • May not admit mistakes
  • Often gets caught in a lie
  • Sneaky behaviors
  • Tries to avoid direct conflict while creating problems in other areas
  • Tends to sabotage

People with Asperger’s who try to manage their anger through the passive-aggressive style are as potentially dangerous to others and themselves as the other styles. Spouses and partners tend to underestimate this anger style, because the danger does not seem to be as bad as the aggressive style.

Lastly, it is not uncommon for some adults on the autism spectrum to vacillate between two - or even all three - of the anger styles depending on the situation.

Living With Aspergers: Help for Couples

Shutdowns in Spouses/Partners with Asperger’s

“How do I communicate with a husband (has Asperger syndrome) who won’t talk? He tells me whatever I want to hear so that I’ll stop talking as soon as possible. If I bring up a topic that he finds stressful, he immediately stonewalls me. It’s impossible to get him to talk about his emotions. It’s like talking to a brick wall. If I really push it and go after him, sometimes he’ll respond and we’ll finally address something. But it’s like I have to freak out to get him to open up and discuss the issue at hand. It’s so maddening. I don’t want to be a ‘bitch’ - but I feel that it’s the only way to get him to engage.”

What you’re referring to here is a “shutdown” (the opposite of a meltdown). You mentioned that this happens when you are trying to discuss a matter that your husband finds stressful. When he withdraws from the interaction, this may be more of a coping mechanism he uses to deal with stress rather than his lack of interest in what you are trying to convey.

When a listener withdraws from an interaction by shutting down, it is usually a sign that he or she is becoming anxious. Oftentimes, people with Asperger’s emotionally or physically withdraw because they’re psychologically or physiologically overwhelmed. They are trying to avoid conflict – or escape from conflict – in order to calm themselves. For example, your husband may refuse to discuss certain topics or feelings, struggling to endure the approaching anxiety. He may turn away, stop making eye contact, cross his arms, or leave the room. As a result, you may label this behavior as rude, insensitive, and uncaring.

People on the autism spectrum shut down for numerous reasons. Shutdowns can result from extreme events (e.g., losing a job, marital conflict, etc.), but they can also have very small triggers, which simply remind the “Aspie” of a larger pain (e.g., a small incident at work can provoke some long-term insecurities and cause a retreat).

A shutdown will move some form of emotional pain to the center of the Aspie’s focus, and he may start contemplating "what if" and "if only" scenarios. These thoughts are always counter-productive, because we can't change the past, and they usually only make the Aspie feel entrapped by events.

Not surprisingly, shutdowns can be damaging to relationships. The person who shuts down is no longer participating in open communication, problem-solving, or bonding with his spouse/partner. Rather than contributing to the well-being of the relationship, shutdowns stifle conflict resolution. The recipient of the shutdown feels invalidated, ignored, and misunderstood. When your husband shuts down, you may feel so unimportant that you don’t even deserve a response.

So, what can be done about shutdowns?

Advice for your Asperger’s husband:

•    When you feel like shutting down, take several deep breaths and communicate what you need to stay productive. If you need some reassurance or a timeout, ask for that. Talk to your wife ahead of time about the best way to communicate with you.

•    Find other ways to soothe yourself rather than shutting down. It’s your responsibility to calm yourself so you’re able to respond — not react. Even if she wants to, your wife may not be able to soothe you, fix your emotions, or make things better. YOU must do your own emotional work (e.g., being honest and clear with yourself and your wife about what feelings are arising). Self-soothing is a very individual thing. Consider the activities that are genuinely calming for you.

•    Recognize when you’re shutting down. Tune in to what’s going on internally. For example, pay attention to your bodily sensations, which are connected to your emotions (e.g., a lump in the throat could mean sadness, a burning in the chest could mean anger, a fluttering in the stomach may mean anxiety, etc.). Tuning in helps you figure out what you need and prevents you from doing or saying something that may damage the relationship with your wife.

Advice for you, the wife:

•    When you notice that your Asperger’s husband is beginning to shut down, you can choose to lovingly detach and not perpetuate an unhealthy dynamic. If you keep trying to get your husband to engage with you when he doesn’t want to, you convey that you’ll tolerate this kind of behavior. Thus, there’s no motivation on his part to change. By removing yourself from the situation, your husband is left with no one to focus on but himself.

•    A shutdown is not about you. This is the way your husband has learned to manage his uncomfortable emotions. Trying to get him to “open up” will only lead to resentment on both sides. To think that you have the power to make your husband behave in a particular manner if you simply “freak out” is dangerous. It will lead to you taking on more responsibility than is yours in the relationship, which will leave you feeling stressed-out, angry, and resentful.

•    It's generally helpful to talk in a soothing voice during a shutdown. Just make sure that you're careful what you say - and keep things positive. The only thing to remember when soothing your Aspie during a shutdown is that you're still dealing with someone on the autism spectrum. Don't try to force eye contact, and don't touch your husband without either being invited to do so - or being cautious to see the reaction first.

•    When the two of you are calm, talk to your husband about the best way to communicate with him when he’s shutting down. Is there a way for you to talk to him when he’s starting to withdraw from the conversation? Discuss this with him, and do some trial-and-error attempts to see what works and what doesn’t.

Sometimes, no matter how kind and gentle you are with your Asperger’s husband, he will still shut down or avoid engaging in a “stressful” conversation. It may also be the case that your husband is engaging in old, entrenched ways of coping with anxiety that existed long before you came along. If either of these things are happening, it would be prudent to get the advice of a good marriage counselor or relationship coach who can help you untangle the impact of past relationship patterns, and concentrate on how to relate in an advantageous way going forward.

Living With Aspergers: Help for Couples

Does Your New Boyfriend Have Asperger’s?

You’ve met this guy that seems a bit quirky. The idea that he may have Asperger’s has entered your mind (because you did a bit of research online, and he appears to have many of the traits of the disorder). So, how might you know whether or not your new boyfriend has Asperger’s? 

Well…

If he seems cut off from his feelings…

If he seems to focus only on reasoning and intellect...

If he comes off as self-centered or insensitive...

If he seems to have difficulty reading body language and facial expressions...

If he has trouble picking up the rules of conversation...

If he rarely looks you in the eyes...

If he has difficulty participating in general conversations, including ‘small talk’...

If he has difficulty comprehending or communicating his feelings...

If he has trouble distinguishing feelings from thoughts...

If he asks very few questions about you and you get the sense he's not listening when you do talk about your life...

If he appears cold or unresponsive to your text messages...

If he has difficulty seeing and understanding your point of view...

If he has difficulty empathizing with you or understanding your emotions...

If he isn't interested in creating a bond with you – and is more interested in having fun and leaving the mushy stuff out of it...

If he only seems to liven up when there's a possibility of sex on the table...

If he’s not genuinely emotionally invested in what goes on in your life...

If he always seems too busy to spend time with you...

If he has an intense interest in one or two narrow topics, bordering on obsession (e.g., stamp collecting, song lyrics, computer games, collecting and organizing facts, etc.)…

If he seems very smart, yet has little “social intelligence”…

If he never wants to discuss "where is this relationship going" questions...

If he appears to focus on his own personal interests, without seeing your needs and wishes...

If he seems to “need” to spend A LOT of time alone...

If he appears to have quite a few sensory sensitivities (e.g., sounds, smells, bright lights, the sensation of clothing against his skin, etc.)...

If he tends to become stressed when his routines are altered...

If he appears very detail-oriented, often missing the overall picture (applying the same level of detail to every situation whether appropriate or not)...

If your gut is telling you this guy isn't in it for the right reasons...

… then he might have Asperger’s.


==> Living With Aspergers: Help for Couples

Why Some Asperger's Men Fall Out of Love - Seemingly Overnight

"Out of the clear blue, my boyfriend with Aspergers stated he's not in love with me anymore, but doesn't want to break up. We haven't gone on a date for several weeks. He stopped being intimate with me last week. And now ...well, I don't know what to think. Is this common for men with Aspergers? He swears he hasn't found another woman, and I believe him because he's not the type to cheat like that. (Plus I've peeked on his cell phone and FB page and see nothing suspicious.) How can someone just fall out of love like that - seemingly overnight. ~  Hurt and confused!"

I wouldn't say "falling out of love overnight" is common for these men, but it does happen. As a counselor who has worked with many couples affected by Asperger's, what I see most often has to do with the fact that most men on the high functioning end of autism are very "task-oriented." The scenario often plays out something like this:

In the beginning, a new girlfriend is the "Aspie's" new task. He works on getting her to like him, to go on dates, to have sex, and so on. Also, in the beginning, he may try very hard to appear "typical" (i.e., tries to avoid exhibiting any traits that may reveal his disorder). Once he feels that he has "won her over," he begins to feel more comfortable around her. And it is during this time that he lets his guard down and begins to exhibit some symptoms of the disorder that his girlfriend picks up on (although she may simply view his behavior as "odd"). 

Once he has achieved his objectives -- mission accomplished! In other words, he has completed the task of getting her to be with him. Unfortunately, due to (a) mind-blindness issues and (b) problems with empathy, the Aspie does not understand that the "relationship task" is never-ending. As most of us know, couples need to work on the relationship throughout its entirety, providing ongoing nurturing, love and support.

This doesn't make sense to some men with Asperger's. They think they have officially "arrived" and that there is no need to continue to "work" on the relationship. Think of it like this: 

You live in California and drive to a vacation destination in New York. That's a long hard drive! Once you arrive at your hotel in New York, you wouldn't continue to drive in circles in the parking lot, because you have already arrived at your destination. As odd as it sounds, this is analogous to romantic relationships in the Asperger's mind (e.g., "I'm here - the work is done").

Another issue that results from "mind-blindness" and "lack of empathy" (two traits of the disorder) has to do with the Asperger's partner confusing love with obsession. I've talked to many men on the spectrum who thought that they were in love, only to find out that it was just an obsession or a "special interest" in the romantic phase of the relationship (i.e., the first three months or so when everything is noncommittal, fun, and interesting). 

Once the romantic phase is over with, the real work begins. For example, he has to have conversations about things that may not be so "fun" (e.g., has to listen to your past troubles, trials, and tribulations; listens to you sharing your past, which is what most people do in order to build trust and a bond). He may have to go with you to family gatherings (socializing is NOT a strong point of people with Asperger's). He has to work on conflict resolution (another skill that is typically lacking). He has to deal with the anxiety that goes with moving to the next level of the relationship, such as a proposal and marriage. Now, in the mind of some Asperger's men, the relationship is getting too messy and complicated. Thus, they rethink their commitment level.

This may or may not be the case in your situation, but I can tell you from experience, the scenario described above is very typical of the Asperger's man that - as you say - seemingly falls out of love over night.

Living With Aspergers: Help for Couples