Blog for Individuals and Neurodiverse Couples Affected by ASD
Are you an adult with High-Functioning Autism or Asperger's? Are you in a relationship with someone on the autism spectrum? Are you struggling emotionally, socially, spiritually or otherwise? Then you've come to the right place. We are here to help you in any way we can. Kick off your shoes and stay awhile...
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 Mark Hutten, M.A. 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,
• 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.
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)
the need to avoid or escape from a non-preferred activity (often something difficult or undesirable)
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)
Discovering a spouse’s “special needs” is often a puzzling and agonizing process for neurotypical (NT) wives. It’s no surprise that your husband [with suspected ASD] often mystifies you.
As with all people on the autism spectrum, your husband has many skills – and deficits. Also, you may have great difficulty understanding how much of his behavior is the nature of the disorder, versus how much is just plain old insensitivity or lack of trying.
Due to the fact that being married to a “special needs” spouse can be so confusing at times, it’s easy for NTs to fall into the trap of feeling inadequate and discouraged (e.g., “My husband has so many unresolved problems, therefore, I must be a bad wife”). Most spouses in “typical” marriages do not realize how difficult it is to be the spouse of a person on the spectrum… until they become one of those spouses.
Since the symptoms of an autistic individual who is “high-functioning” can be so subtle, multiple, and difficult to pinpoint - it’s hard for an NT spouse to know whether things are normal or not. For example:
Are my expectations for my ASD spouse unreasonable?
What is the difference between a person who doesn’t understand emotions, and one who is narcissistic?
What are the indications of a person being off course in his ability to listen and follow directions?
What is the difference between a healthy, very active individual versus a hyperactive one with ASD?
What is the difference between the person who is a little clumsy and one who is having significant motor skills problems?
It will take some time for the NT to recognize and articulate concerns about such issues.
Even after a diagnosis, the NT spouse will face a multitude of feelings before she can grasp effectively with the glaring truth that her husband has a “developmental disorder.” The NT may even mourn over this new reality:
bargaining (e.g., thinking that seeing a typical marriage and family therapist will make the situation better)
blaming others for the difficult situation
dealing with the fear, anger and guilt of having a spouse who experiences many problems
denying there is a problem, as well as rationalizing why it’s not a problem
grieving for “what might have been”
perhaps eventually coming to acceptance regarding the spouse’s strengths and weaknesses, as well as trying to figure out an effective plan of action
One of the biggest challenges NT spouses may face is the big gap between what their ASD husband can do – and what he can’t do. Oftentimes, the ASD spouse is very smart, can reason well, knows a great deal about his favorite subject, yet can’t follow through with the NT’s simple requests.
You may be telling your autistic spouse to “try harder.” But in many cases, he is trying his heart out. These individuals often have to work 10 times harder than their typical peers, but are still labelled as uncaring, selfish, insensitive and narcissistic.
Another piece of the puzzle for the NT spouse lies in how difficult it can be to differentiate between a spouse who “can’t” do something versus one who “won’t” do something. For example:
• “How far should I ‘push’ my husband?” • “How much should I reduce my expectations?” • “How much ‘spousal control’ should I exert?”
In this uncertainty, the NT may even ask herself “what is wrong with me?” – instead of asking “what trials and tribulations is my husband having to face?” Shifting this focus can be beneficial for both spouses.
The partner with autism spectrum disorder may seem to be having behavior problems when, in fact, he is simply struggling to accomplish a social task. He may experience a meltdown or a shutdown when the social task is too demanding. When the ASD spouse says he hates something, it’s very difficult for the NT to know if he is being rude and disrespectful – or simply finds the task to difficult or impossible to engage in.
While a formal diagnosis can help, the task of sorting-out these problems on a day-to-day basis is quite a challenge. On a planning level, uncertainty can occur because friends and other family members may disagree not only on the diagnosis – but on the optimal coping strategies that “should be used” by the NT spouse.
This can be aggravating and stress-provoking for the NT who has to pull all the information together and decide what to do – right or wrong. In addition, she has to anticipate problems and sense when her husband is frustrated, tired, or about to explode. The NT has to trust her gut as to how long her spouse can last at a family get-together, be pleasant with visitors, or sit in a busy/noisy restaurant.
Neurotypical partners are continually trying to figure out what’s working, what’s not working, what causes her ASD partner’s aggravation, and what calms him down. The NT must:
come up with plans for dealing with his meltdowns and shutdowns
problem-solve to recognize her ASD spouse’s strengths, interests, and areas of difficulty
reflect on activities of each day
…and analyze everything!
All of this takes time and energy that is exhausting!
"Is it possible to learn my 'triggers' that may cause meltdowns, and is there a way to intervene before the meltdowns happen?"
People with ASD tend to “act out” their uncomfortable emotions. This is how they communicate their discomfort. The message of a meltdown is: “I’m frustrated and upset, and I don’t know what lead up to it - or what to do about it.”
If you are prone to the periodic meltdown, know that it is very possible to find a way to understand your frustrations – and change the inappropriate expression of them!
Here are some important tips that will help you recognize your “meltdown triggers” so you can prevent the meltdown from happening in the first place:
1. Transitional experiences: When you move from a “desired” activity to one that is NOT desired – especially when the transition is unexpected (e.g., from playing a computer game to running an unexpected errand for your spouse), it’s a prime opportunity for a meltdown. Many transitional experiences can erupt into meltdowns, because you probably don’t like change. You find the transition difficult. It may not be that you don’t want to run an errand for your spouse, rather it could be that you are protesting at having to “switch gears”!
So, when possible, give yourself time to adjust when change occurs. Of course, this is easier said than done when we live in a rush. But you do need more time than “neurotypicals” (e.g., in the morning, you may need to stay in his pajamas for a little while before getting dressed). Also, ask your spouse to “prepare” you for transitions as often as possible. For example, she could say, “I may need you to run an errand for me later today around 3 PM.”
2. Tiredness, hunger and sickness: When you are tired, hungry or sick, you are running on lower emotional resources to cope with normal expectations. This means that if tired or hungry or sick, where you would normally be happy to meet your spouse’s requests, you will likely be short-tempered. Thus, do what you can to deal with the primary issue – get some sleep, eat a meal, see the doctor etc. Try not to get hooked into power struggles when you are low on emotional resources.
3. Implement self-observation: When you are calm, ask your spouse to let you know what she observes regarding the connection between your triggers and your meltdowns. For example, she might say, “I’ve noticed that when you think something is unfair, you get upset and start yelling”). By using your spouse to help you to “connect the dots,” you are learning to identify your triggers. This technique should be part of a problem-solving discussion (that includes you and your spouse) for coming up with a plan for what you will do differently the next time you are in this dilemma.
4. Signaling: Signaling is a common behavior modification strategy for people on the autism spectrum. Choose one specific trigger to work on, and then come up with a phrase or hand signal that your spouse can use as an alert to you that the trigger is present. This allows your spouse to make you aware of the trigger subtly in social situations. Once she has alerted you, you will have the chance to self-correct.
5. Reliance on routine: People with ASD tend to rely heavily on routines to keep them comfortable and content. In fact, most are dependent on routines, because too much activity and change can overwhelm them. A change in routine is a major meltdown trigger that can easily set you off.
Thus, try sticking to daily routines as precisely as possible. If you do have to change the routine, make sure you are well-rested and content. If you notice you are starting to exhibit signs of a meltdown, try to find a quiet place to calm down.
6. Over-stimulation: Although many people on the spectrum enjoy going out to eat, going to malls, attending parties, etc. – it can get quite overwhelming for them to the point they start reacting to these unfamiliar surroundings and faces. Many will exhibit frustration simply because “the unfamiliar” gets to them, especially if there are a lot of foreign noises and smells. Thus, if the environment seems too “sensory-unfriendly,” you may simply want to “bail out” and return home for a time out.
7. Internal frustration: Some people with autism tend to be perfectionistic and obsessive. The inability to do something right after several attempts, or the lack of conversational skills to get your point across can get the “meltdown engine” revving.
Observations from your spouse is the best tool for identifying “low frustration-tolerance” in yourself. Ask your spouse to pay attention and be aware of the warning signs. She can keep her eyes and ears open, and can help you to look for patterns and connections.
8. Identifying physical symptoms: Often there are physical symptoms that go along with impending meltdowns. Your nervous system kicks into high gear when a trigger is present - and can cause several identifiable sensations (e.g., rapid heartbeat, flushed cheeks, rapid breathing, cold hands, muscle tension, etc.).
What do you feel in your body when the trigger you are experiencing is present? When you are aware of the warning signs your body gives you, it can serve as a natural cue to put the new plan you came up with during your problem-solving discussions into action.
9. Dealing with anger: Since “meltdown triggers” and “angry feelings” are directly related, having discussions with your spouse about anger (during those times when you are calm) can help you establish a foundation to build on when identifying your triggers. Ask yourself some important questions about emotions (e.g., what makes me angry, happy, sad, etc.).
The purpose of this is to learn how to identify various feelings, to learn what it means to feel angry, happy, sad, disappointed, etc. - but not to give you an excuse for “acting-out” behavior. This also helps you to communicate your feelings to your spouse clearly so that she is in the best position to help you cope in high-anxiety situations.