Asperger Syndrome Support Group
Asperger syndrome - also referred to as Asperger's syndrome, Asperger's, Aspergers or just AS - is one of five neurobiological pervasive developmental disorders (PDD), and is characterized by deficiencies in social and communication skills, normal to above normal intelligence, and standard language development.
I'm new - incredibly complex situation
If anyone is patient enough to read through all of this without wanting to jump in fix everything right away, I'll be impressed. Hopefully someone is.
I'm new to this daily strength thing. I tried it for a bit probably more than 5 years ago but got nowhere. I'm writing this now only to see if, on the off chance, there is someone out there who can be another friend and good listener. If someone DOES by some miracle have suggestions that might actually be applicable to my situation, great. I don't expect that to happen, but I'd always rather keep my expectations low and be pleasantly surprised than constantly hope for the best and thereby continue the 8+ year pattern of thousands of disappointments of which my wife and I have been the subject. I'm very nervous about even doing this at all for fear that no one will be patient enough to try to truly understand the insanely complex circumstances I'm in, so please bear with me.
Yes, I have aspergers. I was diagnosed with ADHD growing up but had a full evaluation done as an adult and the symptoms I had then AND now are MASSIVELY more indicative of Aspergers.
There are two critical factors that must be considered for anyone who wants to help or even just be a friend.
1. I am an extremely devout member of The Church of Jesus Christ of Latter-day Saints. Some people use the nickname "Mormons" to refer to us. My faith is the single most important factor of every choice I make in life and every part of who I am. I love my God and my Savior more than my wife and she wouldn't have married me if it were not so.
2. One part of me that is NOT typical of Aspergers is that, while many people with Autism/Aspergers avoid physical closeness or verbal responsiveness to others, I crave deep human connection like nothing else and my two to love languages are Physical Touch and Words of Affirmation (more about that here). While I do love people, the irony to this is that, like most Aspies, I often inadvertently say or do things that are viewed by others as excessively socially inappropriate. I have had great difficulty for most of my life making consistent eye contact with others in conversation and my looking away anywhere but their face actually means I am more engaged in the conversation. I analyze human speech like a computer analyzes a chess board so interpreting facial expressions is definitely not a strength for me.
With that in mind:
My wife and I met while I was serving as a full time missionary for my church in Canada. She couldn't stand me at first (imagine that! lol). But we had many deep, long conversations on the phone after I returned home to Colorado. We noticed how much we actually had in common and came to be deeply in love with each other. The difference between our "phone" dating and being in closer geographic proximity to each other was that instead of the initial typical "wow, she's beautiful" or "whoa, he's a cute guy" between us, we were in love with each others hearts and personality before the physical attraction was ever there.
Before long there were deep, mind blowing, eternally pivotal spiritual experiences we were having together, both apart and together when I went a few times back up to Canada to visit her. Things that would make people think we are completely "out to lunch" if we talked about them. To this day, I feel like even most of my family considers me the religious "zealot" of the family. There are things that God has shown us that are either too sacred to discuss with anyone who is not ready to hear it or simply contradict society's current "norms" so drastically that the response would from the average person would be immediate rejection or derision. However, in the usual occasion where we meet someone who is open-minded enough to talk about such things with curiosity or even gladness, such conversations are like a Balm of Gilead to us, especially to me.
My wife is more of a "speak when spoken to" type of person, while I, as noted, am the unsuccessful social butterfly.
She has more illnesses, medical conditions and complications from such than most people have heard about in their whole lifetime and she has lived the lives of 10 people in her less than 50 years of life. From abuse in every form imaginable from multiple women who failed dismally at being a mother to having her reputation tarnished and being stabbed in the back (probably one of the only bad things that hasn't happened to her) by friends to a multitude of other things that would have killed anyone else or driven them to suicide, she has weathered them all with a fortitude and faith that leaves me convinced that no one in this world has a heart like hers, and I don't consider myself biased in that respect.
I am in a situation where I am both her husband and her constant 24/7 caretaker. She wasn't always been like this but is now completely immobile, confined to her wheelchair and is unable to even move around our apartment without extreme difficulty. I am not even able to leave for more than a 3 hours without risking her pain or something worse to become out of control. This leaves both of us stuck here most of the day every day.
I do have my own interests that give me plenty to do at home when I'm not looking after her. I am a pianist of 20+ years, I've been playing guitar for almost 10 and write tons of music. I also have a blog and have published a few books. I love reading religious, philosophical or sci-fi books and one of my favorite past times is Superhero, Sci-Fi, Disaster and Dystopian movies, TV shows and books. I am a HUGE Spiderman fan. I LOVE games, especially MMO's or party games. However, in order to really get the true happiness I need from my hobbies, I need to be able to share them with people I love and since I'm so cut off from people by our circumstances I don't get that chance very often.
My wife is usually in so much pain that physical contact with her of any kind is slim to none by no fault of her own. I get a light gentle hug from her twice a day if I'm lucky. She motionally re-energizes better in alone time and is drained by too much social time. I'm the polar opposite. I feel every emotion I have seemingly 100 times stronger and longer than others around me, including her, so when I get excited about something and I need to express it it easily overwhelms her and when I'm sad or hurt or frustrated and she's in pain or, herself, overwhelmed at the same time, it almost always ends up bad for both of us.
A lot of my stress comes from the fact that she is hurting so bad all the time. One lady once asked "is she in any pain?" and I laughed and said something like, "You're asking the wrong question. The question is not 'is she in any pain?' The question is 'how much and what kind of pain is she in?'" She is literally hurting somewhere every single second of every day, but somehow still manages to stay decently pleasant in her demeanor unless I screw things up with my lack of understanding of "normal" social skills. Many of the social rules that society considers "normal", I see as either confusing or just flat out stupid and dishonest. An example is if someone were to say that "so-and-so just [does that thing] all the time every day". In my mind I'm thinking, unless that person is actually spending every last microsecond of every single day doing that thing without sleeping, eating, using the bathroom, etc, they are not doing that thing all the time every day. Now I have had it explained to me many times that people don't always say what they mean, and I don't have a problem with trivial idioms like "raining cats and dogs" or "I'm frozen solid", but when it comes to important social subject matter, I have great difficulty with things like "you always do that," or presumptive, mind-reading statements like "why are you angry with me?"
Another problem that arises is that I was raised in an environment where my father often said, half jokingly to us kids, "your mother is perfect" and "guys are scum". I don't know whether or not he had his own self esteem issues, but hearing that thousands of times growing up actually created in me an emotional bias against feminism, in both the political and more appropriate familial forms. In the LDS church, there is a scriptural document titled The Family: A Proclamation to the World which teaches that, while God did intend for the multitude of biologically and divinely engineered differences between men and women to exist, that each are meant, as husband and wife, to support each other in families in their individual roles as equal partners. So this skewed, sexist mentality my dad inadvertently tried to force down my throat actually created a desperate need in my heart for more social closeness with my male friends than I even got or get even today.
I'm a very outgoing (though not always successfully so) person and when I meet another person who can match and reciprocate my enthusiasm for things and people I love, I naturally gravitate towards them and become very friendly with them. The problem with this is that, in my current circumstances, the people with whom I often speak when I'm out running errands or when a friend visits us happens to be female and younger than me.
One thing I need to clarify right away with this in mind is that I have NEVER understood what constitutes flirting and why. I have asked so many people, 'in order for something to be considered flirting, does it not have to be based almost entirely on intent?' and the answer I always get is yes, it's about intent. So in my mind, if my intent is 100% to be friendly and happy, it makes no sense to me that complimenting someone a lot or choosing to be in closer physical proximity to them than others is "flirting" if, in my mind, I'm legitimately just trying to be friendly. Now, I understand that those kinds of behaviors are viewed by most as flirtatious by definition, but to me that's just an unbased, assumptive attempt at 'mind-reading' and an unfair judgement call. Heck, I don't even know how to let my wife know when I'm actually flirting with her and when I'm not without actually saying "I'm flirting with you."
So with this problem combined with the fact that girls who are younger than me are generally more reciprocative than any of the other friends I have, you can likely see where this causes problems. I do try, because I love my wife, to deliberately be more careful about how I portray my intentions to others, but it makes me so lonely and sad and desperate for meaningful human connection when I have to hold off expressing how I really feel about something.
Now, I have been told many times that if either one of us feels like the other is holding us back or that one or both of our needs aren't being met for reasons out of our control, which is largely the case with us, that that's not a healthy marriage and that if the situation can't be remedied in a reasonable time period that separation or divorce should be considered for the emotional and mental health of both of us. However, there are a few reasons that that's not possible.
1. We have both made sacred covenants with God in the LDS Temple where we were married. In the LDS church, temple marriages, or "sealings", cannot be broken just by signing a document or paying a fee. They are meant to be eternal and unbreakable. The only way for a temple sealing to be broken is a)if one or both spouses have broken their covenants and don't want to repent and repair the damaged they caused or b)if the case is brought before the highest authorities of the church and they approve the temple "divorce". Neither of these ideas is something either of us is willing to entertain because we value the covenants we made with each other and with God more than our own understanding of what He wants for us in our marriage.
2. Referring back to the mind-blowing spiritual experiences we've had together, God has made some very specific, unique, conditional promises that guarantee us blessings that few other people in this life could ever even imagine to be possible. They were offered to both of us as a couple and are conditional upon receiving those blessings as a couple, sealed in the temple. In addition to that, God caused a rather large number of more mind-blowing miracles to bring us together and make our temple sealing happen in the first place. To even entertain the thought of ending our marriage after the efforts He went to to put us together and after the promises He has made to us as a couple would be "spitting in God's face", if you will, in the most unimaginably worst way possible, basically proverbially stabbing Him in the back and making a mockery of Jesus' atonement.
3. It's not physically possible. I have spent enough time getting to know the nuances and details of her health care over the years of our marriage that no one else would ever be capable of making sure her medical needs are met properly. In this sham of a Canadian health care system, it takes us at least 5 or 6 visits every time she is introduced to a new doctor to convince them that they need to be, proverbially, taking their degrees, their textbooks and their years of experience and burning them because she has always been the anomaly with her health. Every time a doctor has the patience to actually take an in depth look at her health care, even the most experienced doctors are utterly flabberghasted at how she is even alive, let alone putting a smile on her face as often as she does. It would literally take years, as it has for me, for anyone to be able to even come as close as I have to meeting her medical needs. If we were, for some ungodly reason, ever to be forced into a divorce, she would die from health problems, malpractice or depression and suicide within weeks because no one would be able to familiarize themselves with her needs quickly enough to keep her happy and even as healthy as possible.
So here I am, bound by my covenants with God, tied in a situation with a woman I love more than life but whose needs would make a war veteran cry and throw in the towel within weeks. There are so many little details I haven't and/or shouldn't talk about on a public forum for the sake of privacy, (though I welcome questions, even if I can't answer them all) but her health has only been getting slowly and steadily worse over the years, we're always trading one problem for 5 more and I cannot let go of her because of how much I truly love her. Yet I've never felt more lonely than I do now in my entire life.
I want to make more guy friends who don't just do the "guy" thing by avoid meaningful conversations but, rather, reach out to each other to "have fun with the boys" and such, but no one around here seems to care about reaching out to me like that. Granted, all the guy "friends" I have have more structured full time jobs and kids and such keeping them busy with a greater number of obligations than me, but even in their freetime, I never see anything of them reaching out and whenever I try to reach out the most I get back, if they even respond to me within a few days, is something like "Oh, I'm sorry things are so rough for you, give our best to [your wife], you are both in our thoughts and prayers." I appreciate the sentiment behind that, but it's not enough. There are several friends my wife and I have who are women and a few of them with whom she is okay with me hugging and talking about personal things, but (and this obviously complicates things a lot) I'm trying to recover from a pornography/masturbation addiction and because of the hurt on her end from that, it makes things even more difficult for us and for me on a social level.
I am so lonely and deperate for more healthy human connection. No, facebook isn't good enough and actually was one of the things that fueled my addiction in the first place. I am on facebook because I need to be to stay in touch with friends and family who live far away, but I have been deliberately distancing myself from that for a number of reasons recently and need more meaningful connection with people outside of FB, Twitter, Pinterest, etc. I can't connect with my wife, physically or emotionally, in the ways we both wish we could and she has even encouraged me to find more friendships that have a more appropriate dynamic for a married man and I do want those kinds of friendships badly, but no one seems to want that kind of friendship with me.
Whether that's because of the philosophical, social or religious depth of the conversations I need to have or my social skills, I don't know when it's which of those two, but a social worker convinced me today to at least try reaching out for someone today, even if it's not on a specifically LDS forum. I have had trust issues with people who don't have an LDS perspective because they often get judgemental about my beliefs, morals and opinions or avoid me because they are too overwhelmed by expressiveness. I have a feeling that most of the time it's the former.
I'm giving this forum a chance because someone got lucky enough that they were able to convince me to try. Let's see what the response is here.
I know about aspergers as a very close family member manages with this different way in a Neurotypical world.
You are in need to find balance.
Hope you do so.
Let me start by saying that I do not have any solutions or answers to your situation, in fact, my being younger than you means I even have less experience upon which I can draw; however, if you are willing and able to look past my age and lack of experience I would enjoy conversing with you regarding our shared complications in the social and romantic aspects of life.
I hope you do not mind my relaying personal information: I was recently diagnosed as high functioning autistic and am still trying to understand how to best cope with my tendencies. I am not necessarily religious in an organized sense but am greatly spiritual and believe that learning from all religions can help me to better understand where I fit within the wide spectrum. I have personally lived a life containing daily and usually unbearable pain residing within my very core (high iron and calcium levels have degrading the cartilage in my joints to a point were nearly every bone in my body is constantly grinding against others). I am able to interact well with other people but generally feel as though I am deceiving them because I recognize that my true thoughts and feelings regarding a situation can not be expressed if I want to maintain friendships and others positive view of my actions. Growing up I had very few friends none of which I can consider to be especially close providing me with a constant urge to be 'better' in the eyes of others in an attempt to make and keep those close friends; however, all of my attempts in this regard have failed leading me to realize that so long as I am confident in myself, proud of who I am, and excited to better myself in ways I deem to be objective and not based upon the views of others; I am able to make it through each day feeling a little less lonely and lost while at the same time recognizing more-so the closeness of the relationships I currently have.
In regards to the concerns of your marriage: I have performed two wedding ceremonies and hold dear the union that is formed from such. I believe that our life partner is not one with whom everything will be easy and care-free but rather one with whom you struggle and fight on a daily basis but somehow at the end of the day still love, care about, and don't want to be without. I believe this to be the case because I am unable to see our existence as anything other than a learning experience and our life partner becomes our greatest teacher and student throughout our life, not by means of direct knowledge transference but through the indirect actions, beliefs, and motivations that person has the ability to influence without our true acknowledgement. This being said, our partnerships should be one of constructive conflict which yours is (otherwise you would not be motivated to continually improve things between the two of you). I do, however, recommend that you take the advice which I believe you have already considered which is to create a situation in which you and your wife get to spend a little more time apart from one another whether this be in the form of finding a caretaker to help with your wife throughout the day or even just finding different chaperoned activities which your wife can do without you (while under the supervision of someone whom you and she trust) but yet will not take away from the solitude that she enjoys (things like going to the library, a movie, museum, etc.). I recognize that I currently lack knowledge in regards to your religion and apologize if any of my recommendations or statements do not coincide with the responsibilities of the LDS (I do hope to learn more about these from you).
Now to digress, I am inclined to believe that you and your wife will be able to develop healthy and constructive habits, friendships, and interests so long as you maintain your faith, motivation, open mindedness, and recognition of self-ignorance (which from reading your post I do not foresee y'all having any problems).
I hope this helps and am available to further discuss any of the above or even to talk about completely different topics (do not hesitate to message me through DailyStrengths private message service).
Make it an excellent day,
Brandt Holmes
"We are born ignorantly confident and can only hope to become confidently ignorant by means of the meticulous journey that is life." - Clyde Wallace
I am not making light of your situation. Yes, I read your entire letter. I cannot tell you what to do, I try my best to "encourage" others on here to be their personal best. The internet has not been a safe way for me to make healthy friendships or even relationships. This is why I suggest you consider, in addition to search for friendship on here, to consider joining outside real life interest groups.
No, I'm not super comfortable with the thought. But if I stay quiet and just listen and participate in other helpful ways in such groups, I always fit in some how.
I encounter few of us with your ways of expression in the written word. I appreciate this, as this is one of my gifts as well, and that of music (the keyboard) and acrylic painting and yes, writing books (in past). I wish you nothing but the best, but please be careful on here. People use words cleverly and can hurt you on here. It is better to meet real people to form true friendships.
I have some physical health issues, not to the extent of your wives or the chronic pain she is in. But due to many years of working in the caregiver's field, my experiences give me a greater understanding.
Yes, isolation and burn out to heal people that need our help is a huge health issue for yourself if its caring for loved ones or as a job. You need to make friends yes, I understand your problem areas with making friends due to my husband's struggles. And inappropriate behavior and attachments to people that end up not being true friends. I see through them, logical thinking and not emotional thinking he is blinded. He thinks in terms of black and white thinking and is very self-centered. I am not referring to all Asperger as a whole. Also, in our predicament, he has 6 children, as I am sure you know, this gene manifest in offspring with different disabilities. Dyslexia, ADHD etc. Which his children all have been diagnosed. It's very difficult for me at family gatherings, in which their abrupted behaviors triggers my past abuses. I have been severely abused throughout my life, then to top it off have Dyslexia. So I was told I was stupid and would never amount to anything in life. I could no longer work as a caregiver, my new job required me to work every other Sunday, which interfered with CHurch, my husband nagged me to quit. So I am very lost right now on the road I am to travel for a job.
My husband and I both have a deep spiritual belief in God, which we take seriously, We are not moments, but I do understand the faith and some of your beliefs.
Have you thought about hiring a part-time caregiver to come in and care for your wife twice a week, allow yourself to get out of the house? It sounds like to me, you are burning yourself out with her care, this is not your fault. I understand you feel guilty for leaving her, but you need to take care of yourself or you will not be able to care for her.
I do understand affection, my husband is sexual but he controls when, how and many much. It leaves me in pain, angry and a painful reminded his Asperger's is in control of our lives. It takes to much energy to confront, just adds to my frustration level so my needs are not fulfilled.
God wants his children to be equally yoked, be as one, I am struggling with this issues. I want to be in one a cord as the bible talks, I want to feel that closeness to my husband, that great love. Not this frustration and anger. I love him with all my heart. I am sorry, I do not have all the answers, but I understand the problems Asperger's wholes for couples.
I am here if you need to talk, maybe you can help me understand where I am going wrong