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How I Live with Asperger’s: Tips from a 52-Year-Old Man on the Spectrum

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 ASD brothers and sisters out there,

Carlos

==> Living With Aspergers: Help for Couples
 
Comments:

•    Unknown …Hi Carlos, I am 53 years old, and want to thankyou for your tips and coping strategies. I concur with all but one, you may have guessed already that it is number 10. I would love to discuss/debate my most favourite of subjects with you. I understand if you are unable to do so though. When it comes to that particular subject it is like everything else in my life, subject to logic and reason, and evidence. I learn as I grow, and grow as I learn. I heard it said, "Life is for learning and learning is for Life." I believe it is my Autism that has caused me to be able to see the Truth amongst many lies. A good friend said "If you throw a straight stick in amongst a pile of twigs, it will be very easy to spot. (I don't normally do this by the way Carlos,) but I am intrigued by your being a man of mature years, Autistic, and 'Religious' Finally Carlos, did you know . . . . "Many say the etymology of religion lies with the Latin word religare which means “to tie, to bind.” This seems to be favoured on the assumption that it helps explain the power religion has. The Oxford English Dictionary points out, though, that the etymology of the word is doubtful." I think this is quite interesting for various different reasons, that I would explain in detail should we correspond in the future. Regards, Hendrow.
•    CyndiL PhillyGirl…Dear Carlos, My name is Cyndi. I was diagnosed with Aspergers and anxiety disorder with mild OCD when I was in my 4os. I feel that the diagnosis has been a revelation to me. I now know why my mother, siblings, and were atypical but burdoned with other maladies like addiction disorders.
•    Unknown… Dear Carlos, thank you for sharing this deep and thought provoking discussion. I have been learning more about the condition seeing that I work with so many people on the spectrum. Their brilliance and individually is extraordinary. A late diagnosis would certainly have been a great relief with so many things suddenly explained at last. kind regards and ongoing brilliance to you and your life.
•    UKRonnie …Thank you for the tips. Number 2 is especially useful for me, not only in not offending others but also not constantly being used to fix things for others, to the point that I don't sort my own stuff, which I find hard enough. Also number 7 is intriguing. I suppose it is about who to trust although I am happy to tell people to jog on if they try using my difficulties against me and start spouting ableist claptrap.
•    Jake … Wow! This helped me son much! I’m printing it out so I can memorize it. The social challenges have held me back so much! I’m a musician and people love my music. However, dealing with me is hard for people and I get shelved a lot because of it. Thank you for helping so many! I felt so alone and now I see I am not!
•    ADIV123 …this was very helpful thank you i am an 11 year old boy named Aditya Vij and i too have Autism.

Excerpt from the ASD Men's Group: Tips on Reciprocal Communication


More Resources:

==> Living With Aspergers: Help for Couples 

==> One-on-One Counseling for Struggling Individuals & Couples Affected by Asperger's and High-Functioning Autism  

==> Online Group Therapy for Couples and Individuals Affected by Autism Spectrum Disorder 

==> Online Group Therapy for NT Wives

==> Online Group Therapy for Men with ASD

ASD and The Marriage Problems That Are To Be Expected



More Resources:

==> Living With Aspergers: Help for Couples 

==> One-on-One Counseling for Struggling Individuals & Couples Affected by Asperger's and High-Functioning Autism  

==> Online Group Therapy for Couples and Individuals Affected by Autism Spectrum Disorder 

==> Online Group Therapy for NT Wives

==> Online Group Therapy for Men with ASD

 

Points to consider:


1.    Neurodiverse couples can use a visual system, such as a wipe off board to communicate their stress level at this time of day.
 

2.    Each person with ASD presents differently with his or her challenges.
 

3.    Encourage humor in your life together.
 

4.    Executive function deficits may be mistakenly attributed to lack of motivation, and/or behavior or personality problems.
 

5.    Executive function tasks include planning, organizing, prioritizing, time management, emotional regulation and impulse control.
 

6.    Eye contact may be difficult and sometimes facial expressions may not reflect an individual’s true feelings.
 

7.    Finding a path to a respectful, loving and fulfilling long lasting relationship is every committed couple’s desire.
 

8.    In a relationship where one individual is on the autism spectrum, there are likely many more opportunities for misunderstandings and frustration.
 

9.    Individuals on the autism spectrum are not sure how to connect with others.
 

10.    Individuals on the autism spectrum can have both an impaired and an enhanced time perceiving their own bodily functions.
 

11.    Inertia, both starting and stopping tasks, can be a challenge for people on the autism spectrum.
 

12.    Information processed by the senses can easily overstimulate an individual on the autism spectrum.
 

13.    It is a challenge for most couples to find a balance between their needs and expectations, and their partner’s needs and expectations.
 

14.    It is important that you both learn your personal ways of de-stressing and express these needs to each other.
 

15.    Just as in any relationship, individuals with ASD need partners who are understanding and respectful of their needs.
 

16.    Leisure time together can be an important bonding opportunity.
 

17.    Light touch may feel like pins yet actual pinpricks may not be felt at all.
 

18.    Many people with autism crave intimacy and love, but they don't know how to achieve it in a romantic relationship.
 

19.    NT partners are often relied upon to perform many executive function tasks within the relationship.
 

20.    People on the autism spectrum suffer from anxiety.
 

21.    People with ASD almost universally say it is difficult to process verbal information while maintaining eye contact.
 

22.    Persons on the autism spectrum often have trouble staying on topic and maintaining a conversation.
 

23.    Realize you might not understand your partner’s perspective.
 

24.    Remembering the positive characteristics of both you and your partner will enhance your self-esteem and help motivate you as you work through your relationship challenges.
 

25.    Senses may be overly sensitive (hypersensitive) and/or under sensitive (hyposensitive).
 

26.    Sensory issues can impact just about all aspects of life from the selection of clothes, foods, bedding and furnishings that are comfortable for both partners to what environments and activities may be enjoyable for both partners.
 

27.    Sensory issues very often affect individuals on the autism spectrum.
 

28.    Sitting side by side might work best for communication.
 

29.    Social cues are often missed or misread.
 

30.    Social events are often difficult for a person with ASD and you will likely be the one arranging the social events.
 

31.    Social skills are affected.
 

32.    Some couples find that texting, emails and/or information written out on paper, sticky notes, calendars or wipe-off boards is very advantageous.
 

33.    Some people with ASD are hypersensitive to various lighting.
 

34.    They can feel blind to everyday subtle social cues from their partner, which can cause conflict and hurt feelings.
 

35.    They may seem unaware of what is in plain sight and/or process words as “noise”.
 

36.    Transitioning from work to home may be stressful for your partner on the autism spectrum.
 

37.    Verbal communication is often processed more slowly and words interpreted literally.
 

38.    You and your partner likely have different ways of alleviating stress.
 

39.    You may need to give your partner with autism explicit information and practice on how to give hugs.
 

40.    Your partner likely has executive function deficits.
 

Introduction to Understanding “Spousal ASD”: Summary for Neurotypicals

Here's a good synopsis of what you can expect to witness in your spouse who has autism spectrum disorder (ASD):

Reasons for Rigidity in ASD—

  • the misunderstanding or misinterpretation of your feelings, thoughts, and actions
  • the violation of a rule or ritual (i.e., you, the NT, changing something from the way it is “supposed to be” … you violating a rule, and this is unacceptable to him)
  • anxiety about a current or upcoming event (no matter how trivial it might appear to you)
  • the need for immediate gratification of a need
  • lack of knowledge about how something with social/emotional components is done (by not knowing how the world works with regard to specific social situations and events, he will become anxious and try to reduce his anxiety, which often results in shutdowns or meltdowns)
  • sensory sensitivities
  • the need to avoid or escape from a non-preferred activity (often something difficult or undesirable) 
  • perfectionism
  • OCD tendencies
  • the need to control people for anxiety-reduction reasons
  • the need to engage in - or continue - a preferred activity (usually an obsessive action or fantasy)
  • transitioning from one activity to another (this is usually a problem because it may mean ending an activity before he is finished with it)


Black-and-White Thinking and Mind-blindness—

  • an obsessive-compulsive approach to life that results in the narrow range of interests and insistence on set routines
  • the inability to take your perspective (i.e., mind-blindness)
  • the lack of cognitive flexibility (i.e., black-and-white thinking)
  • there is always some distress, anxiety, or obsession manifested in every “inappropriate” behavior that you, the NT, may witness
  • cognitive difficulties that lead to inaccurate interpretations and understanding of the emotional world (how he interprets a situation determines how he will respond to it, but many times the interpretation of an event is not an accurate one)


Behavioral Manifestations of Anxiety—

  • wanting things to go his way, when he wants them to, no matter what you may want (he may argue, ignore you, refuse to yield, etc.)
  • tending to conserve energy and put forth the least effort he can, except with highly preferred activities
  • remaining in a fantasy world a good deal of the time
  • appearing unaware of events around him
  • reacting poorly to new events, transitions, or changes
  • preferring to do the same things over and over
  • lecturing or scolding you rather than having a reciprocal conversation
  • intensely disliking loud noises and crowds
  • insisting on having things and/or events occur in a certain way
  • having trouble socializing well with you, or avoiding you altogether (he prefers to be alone, because you do not do things exactly as he does)
  • having a narrow range of interests
  • becoming fixated on certain topics and/or routines
  • eating a narrow range of foods
  • demonstrating unusual worries
  • showing resistance to directions from you, the NT
  • creating his own set of rules for doing something
  • becoming easily overwhelmed
  • having difficulty calming down


Questions NTs Should Ask Themselves Regarding Their ASD Spouse’s Behavior—

To help you determine the reasons why your ASD spouse acts the way he does, you should ask yourself the following questions:


1.  Is he misunderstanding what is happening and assuming something that isn't true? (Misinterpretation)
 

2.  Is he expecting perfection in himself? (Black-and-white thinking)
 

3.  Is he blaming me for something that is beyond my control? (He feels that you must solve the problem for him even when it involves issues you have no control over.)
 

4.  Is he stuck on an idea and can't let it go? (He does not know how to let go and move on when there is a problem.)
 

5.  Is he exaggerating the importance of an event? There are no small events, everything that goes wrong is a catastrophe. (Black-and-white thinking)
 

6.  Has he made a rule that can't be followed? (He sees only one way to solve a problem. He can’t see alternatives.)
 

7.  Does he see only two choices to a situation rather than many options? (Black-and-white thinking)
 

8.  Does he need to be shown a better way to deal with a problem? (He does not understand the way the social world works.)
 

9.  Because a situation was one way the first time, does he feel it has to be that way always? (Being rule bound)


More Resources:

==> Living With Aspergers: Help for Couples 

==> One-on-One Counseling for Struggling Individuals & Couples Affected by Asperger's and High-Functioning Autism  

==> Online Group Therapy for Couples and Individuals Affected by Autism Spectrum Disorder 

==> Online Group Therapy for NT Wives

==> Online Group Therapy for Men with ASD

 

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