HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Coping With Adult Aspergers

Aspergers (high functioning autism) is a lifelong developmental disorder and mainly manifests in the inability to successfully relate emotionally to others during everyday interactions. There exists a lack of awareness in interpreting social cues; a skill that most of us take for granted. Given that inability, it can be extremely difficult for the family and friends of an Aspergers family member to cope with many of the behavior patterns typically exhibited.

As Aspergers is a relatively recently classified disorder, an adult's diagnosis with the disorder may occur after the diagnosis of a child or a grandchild. When this occurs, family members often then relate the behaviors of the newly-diagnosed youngster to that of the lifelong behavior patterns of a parent or spouse.

This "Ah-ha" phenomenon is often accompanied by relief on the part of family members, but with it comes grief when the realization hits home that there is little likelihood of gross changes in the Aspergers adult. For instance, the daughter whose son is diagnosed with Aspergers may then realize that her father had the same constellation of symptoms, and the reason for her father's apparent disconnectedness, coldness, and inability to empathize with her suddenly becomes crystal clear.

Coping with a family member with Aspergers can be frustrating and demoralizing, particularly with an Aspergers adult who is undiagnosed. There can be much suffering and misunderstanding by the youngster of a parent with Aspergers, and certainly psychological damage is likely. Once an effective diagnosis is made, at least there is some understanding for other family members as to why the Aspergers adult behaves the way that they do.

One of my clients had a mother-in-law who exhibited all the classic symptoms of Aspergers. Previous to the mother-in-law's diagnosis, this distressed client had suffered enormously at the hands of this woman, as had her husband and kids. She had called her "The Hologram." Her explanation was that "she looks like a normal human being, and she's smart and has a good job, but there's just nothing there." Hence the name she had dubbed her mother-in-law in order to cope with the stress that family get-togethers inevitably brought.

The term "hologram" was an unwittingly apt description of her mother-in-law. There was no intimacy, no understanding, no empathy, just a pragmatic approach to life that did not take into account the emotions of the people she dealt with. Nor was she able to adapt herself to the changing needs of different individuals or situations. The diagnosis of this woman's grandchild with Aspergers led to a realization by her own adult kids as to why their mother was the way she was. It answered a lot of questions, and gave these adult kids some closure regarding the childhood hurts they had experienced due to her inability to relate to them.

Dealing with a person with this condition can be extremely difficult at times, particularly when the person has yet to be diagnosed with the disorder. When diagnosis of the adult Aspergers occurs, it is often as a result of a child or grandchild being assessed with the disorder. It then becomes apparent to other family members that the undiagnosed adult they have struggled for so long to understand or relate to also has the disorder.

When an adult is diagnosed with Aspergers as a result of a youngster within the extended family being diagnosed, it can come as a "double whammy" to the family. This is particularly the case when a youngster and a spouse are diagnosed, since the remaining member of the family group is now in the position of dealing with two Aspergers in the one home.

Similarly, the diagnosis of a youngster may make the parent twig that mom or dad had the disorder too. This also causes intense personal suffering for the person concerned since finding out that one's parent has the disorder will open as many wounds as it will explain.

The problems in dealing with an adult with Aspergers can be numerous, and include:
  • A feeling of trepidation due to the effect of this constant vigilance
  • A sense of frustration that you cannot "get through" to this person
  • A sense of hopelessness that the person doesn't love you
  • Depression related to the knowledge that the individual won't get better
  • Difficulties accepting that the partner has the condition
  • Failure to understand why the person cannot relate to you in a "normal" manner
  • Feeling overly responsible for the person; feeling a need to constantly explain their inappropriate behaviors and comments to others
  • If the adult with Aspergers is a marriage partner, concerns over whether to stay in the relationship are at times overwhelming
  • Lack of emotional support from family and friends who do not understand the condition
  • Lack of intimacy in the relationship and a failure to have your own needs met

Aspergers makes for difficulties in understanding the emotions of others as well as interpreting subtle communication skills, as transmitted through eye contact, facial expressions, and body language. This often leads to the person with this disorder being labeled as rude, uncaring, cold, and unfeeling. While it is natural for those who interact with Aspergers to feel this way, it is unfair to the Aspergers adult. This is because Aspergers is a genetic, neurological condition which renders the individual mentally unable to readily understand and interpret the emotional states of others.

One of the problems associated with adult Aspergers is lack of accurate diagnosis. Because Aspergers is a disorder that has only been recognized and singled out from other autistic spectrum disorders in the last few decades, to date there has been little information about the behaviors of adults with the condition. As kids, these adults would have stood out among their peers as being "unusual," yet at the time there was no accurate diagnosis available. Hence there still remains many adults with Aspergers in the community who remain undiagnosed.

The other problem is that, even when diagnosis occurs, the Aspergers individual may refuse to go into family counseling or accept available assistance as they do not see that they have a problem. One of my client's who had a mother with the condition was relieved to finally discover the reason for his mother's emotional aloofness, yet was devastated when that same mother refused to go into family therapy because she simply said "I feel good, there's nothing wrong with me."

In this case, there was no denial involved on the part of the mother. She simply couldn't understand her son's pain, his feelings of rejection, or his desire for a real "mother-son" relationship. None of it made any "sense" to her. In addition, her interactions with the family and in-laws were fraught with difficulties. Eventually this man decided to limit interaction with his mother as it caused too much distress.

In other cases, the Aspergers individual, when told that their actions are hurtful or inappropriate, may be genuinely shocked. However, the behavior is likely to be repeated, unless there is some form of intervention, and the individual genuinely desires to change.

Many Aspergers adults can maintain ongoing relationships, however due to their neurological inability to effectively communicate on an emotional level, there are numerous difficulties. Even dating can prove to be a problem as the subtle "language of love" which operates during the courtship phase is often a mystery to the Aspergers individual. This can apply to even the most academically gifted individual.

Recent research into the sexual behaviors of Aspergers suffers indicates that they have similar sex drives as the general population, but seldom possess the social skills to deal with the high level of intimacy required of such a relationship. In fact, research suggests that the divorce rate for couples in which one partner has Aspergers is around 80%.

Letter from an Adult with Aspergers:

I am a 35 year old male with Aspergers. As I sit to write this I realize that I am trying to explain myself to myself, as much as I am trying to explain my thoughts and feelings to you the reader. I will try to keep on the track, not be indulgent, and make an attempt to explain "self" from the perspective of one who has Aspergers and to keep it as short and eloquent as I am able. Please bear with me as I realize that "self" is quite different between people and that Aspergers encompasses a very wide spectrum, no two cases being exactly the same. That being as it may.

I will now attempt to share with you, my feelings, in the hope that it may in turn help you to understand the feelings of another who may be close to you. Please understand that I am not trying to offer any solutions or to appear as to be offering either a positive or negative perspective here. I am simply trying to explain how I feel, how I have always felt and how another close to you may possibly be feeling.

Ever since I was a young kid, in fact, as far back as I can remember, I have felt myself to be totally alone, different and somehow unique. Not in an egotistical way but just unusual. As a kid I felt very strongly that I didn't belong here in this world.

By the age of five I had told myself many times that my "real" parents were in fact Time Travelers that had somehow lost me here. I felt so out of place in the world that I was certain it must be so. I remember commenting to my mom as a kid that I was really a time traveler, she thought it was cute and she and a friend had a giggle over morning tea. When I was six years old I realized and believed that no one ever really loves anyone else, not really and that no‐one ever really cared about anyone else, (well it made sense when I was six) I found out differently when I was 38, but always believed it until then. I was a very quiet and solitary kid and found it hard to make friends.

By adolescence I had realized that I was somewhat "emotionally retarded" and would at times respond poorly or inappropriately to a situation and regret but still fail to understand my actions upon later reflection.

My social skills were and still are, reasonably poor. I have never been able to like myself. I have never cared about my appearance, having long ago decided that I was ugly and unattractive anyway and that grooming and clothes would make no difference to the obvious. Even though I was able to marry a very beautiful woman who loved me deeply and many have assured me that this is not the case at all, inside I have always felt it to be the truth.

I find putting on nice clothes pretentious and embarrassing. I cannot remember any time in my life that I have ever felt truly happy and carefree. I have always felt that individuals regard me as strange or eccentric and as a result I live usually alone and have no genuinely close friends. I have not seen or spoken to any members of my immediate family since my mom's funeral seven and a half years ago but then, my sisters never did like me.

I have always been prone to mood swings. Ranging from severe depression, resulting in up to 3 to 4 days of uncontrollable crying and sobbing, to short bursts of Absolute and quite irrational anger. Not anger in a violent sense, I don't have a violent bone in my body, and have never broken anything, hurt myself or attacked anyone, but I can become very verbally aggressive if I am not aware, or made aware that my mood is changing. Yet at the same time, many consider me to be articulate and intelligent and often seek my advice on a wide range of topics, and I enjoy being able to help them. I think I have called "please help me" alone in the dark in tears at least a million times in my life.

I never knew I had Aspergers or indeed even knew of its existence until my child was diagnosed with Aspergers five years ago. He is now nine years old, living with my ex‐wife and (reasonably) well adjusted for a kid dealing with Aspergers.

As with many Aspergers kids, he is extremely intelligent, he could read at two years old and had read all his grade school required reading right up through all the grade 7 books by the time he was half way through grade 3, with excellent comprehension. He is capable of being at the top of any subject.

Totally the opposite of me ‐ he looks forward to school exams because he sees them as puzzles and thinks they're fun and better than lessons. But, by the same token, he gets teased at school because his peers perceive him to be "different" somehow. He can also alienate his friends through his actions, he can be silly, irrational, incredibly defiant and a big strain on his mom, much the same as I was I imagine.

His mom and I get along quite well and I am able to see him whenever I like. Though when she left, nearly eight years ago, it affected me so deeply that I have remained celibate ever since and I sincerely doubt that it will ever change. I still look at attractive women and wish I could talk with them, I am in fact human after all, but I feel too self conscious to even make eye contact and also find the whole idea of being touched by someone, even my ex‐wife, to be embarrassing and even quite scary now, which complicates things considerably, and the longer it takes, the worse it becomes. So now, at 35, thoughts of a companion don't often even enter into my head at all any more as I feel, what's the point?

When my child was diagnosed as having Aspergers, I was able to read some of the literature regarding his condition. Upon reading a couple of books it soon became apparent where the root source of my own problems lay and subsequent investigation proved these suspicions to be well founded. At first my reaction in regard to myself was one of relief at finally having some kind of tangible definition for what I had been feeling all these years.

The relief was soon replaced by mixed feelings of remorse, frustration and helplessness. For a while I felt "ripped off". I felt that 30 years of my life had been stolen from me and that, had I known about Aspergers from the beginning, my life could have been vastly different. Maybe I could have understood myself a little before now and maybe others could have too.

I can, at least, find solace in the fact that my child now has that support from childhood. I am a professional musician, in fact many of my peers consider me to be quite a talented one, though I do not particularly share their opinion and have always been my own worst critic.

I find music and other artistic pursuits to be easy and obvious. Computer skills were a breeze to pick up, requiring virtually no effort. Still playing rock 'n' roll at 35, I even rap a few Eminem numbers. I feel quite relaxed and comfortable performing on stage in front of hundreds or even thousands of individuals; doing some intricate drawing or figuring out some computer problem.

Yet I find it difficult to sit in a room with more than 3 or 4 other individuals, and even then, unless I know those 3 or 4 quite well, I feel tense and nervous. I find it hard to make eye contact with other individuals, even those I know well. Filling out a form or talking to a stranger can be fine or it can reduce me to tears. I find light conversation nearly impossible. Working with other individuals makes me feel self‐conscious and inadequate but I can excel working on my own at the same task. I've put on a brave face but Parties, Shopping, Supermarkets and Laundromats are a nightmare. Go figure.

When I try to explain my condition to individuals I feel like they either think I'm making up excuses for myself or look on me as a freak or as some kind of nut case. Sometimes I feel that by telling them I have Aspergers I'm alienating myself, but then, if I don't tell them I will probably mess up at some stage and they will think I'm strange anyway so I figure it’s better to tell them on the whole, especially if I intend to try and pursue any type of friendship.

But then at times I feel quite fine about myself, I feel like it's the rest of humanity that has the problem, not me. Sometimes I too, look on myself as a freak and a nut case. But then, I'm sure I'm not, because they always say that if your nuts you don't know it, and I'm sure I am, so I guess I'm not..... Make sense?

I don't know if I will ever come to terms with myself or with Aspergers. I try, but it gets very difficult on your own at times without the support of another. Just a shoulder or an ear or even a hug sometimes would do wonders. Plus I do believe that everyone needs to feel loved or needed in some way. I still cry every day and must go to some lengths to convince myself I am a worthwhile member of the human race so I can put on my mask and face the world each morning, just as I have always done.

But I think I'm getting better at it. And, in the end, ultimately I believe that I AM worthwhile. Though I seem to mess up so much that I sometimes wonder whether it’s worth leaving the house any more than is absolutely necessary, so I tend to stay home and be reclusive and may seem almost shy to some.

I know there is no cure for Aspergers, no drugs than can be prescribed, no diet or exercise routine that can be undertaken. I know that my life will always remain a struggle and that I will never be one who will be considered as being "Neurologically Typical". I will always be an "Aspie" and to me, being a person with Aspergers is in many ways to be alone in the world and I am so very tired of being alone. And I'm altogether tired of feeling alone and isolated, even in a crowd, but I go on, and I try to find something positive in each day, what other choice do I have?

I think that, all in all, Life is good, especially if you consider the options. But oh how I ache to my bones to be "normal" and just talk about the weather or something.

I hope this letter has helped or provided some insight to someone who has Aspergers or perhaps to someone who may be dealing with a loved one or friend who has Aspergers. I hope that by sharing my feelings you may in turn be helped to understand theirs.

I still believe I have goodness and can help some one's life. I still believe through it all that I am worth something.

Living With Aspergers: Help for Couples

11 comments:

Anonymous said...

Thanks for good stuff

Anonymous said...

Thank you so much for sharing so beautifully; I live with an aspie and he sounds much like you...and he gives of himself through music and the computer as well. A "kind heart" and a smile helps others and hopefully - even if you don't feel it - you can learn to "see" it in the reaction of others.

Anonymous said...

I'm a mother of a 37 yr old son who I have recently come to believe may have Aspergers. I feel the pain and hear it in him, and wonder how I might go about approaching him about Aspergers Syndrome and looking into getting help. I've read quite a bit online out of desperation to understand the disorder. I am so afraid of pushing him further into feelings of being different and alone. Would you be able to give me some guidance. Thank you for your letter which I found to be helpful and hopeful. BY

Anonymous said...

I am a 27 year old woman and believe I have Aspergers. Since being a child I have always had an extremely hard time socially. I hard a hard time making and keeping friends and to this day have no friends besides my husband who is my best friend.

I have battled with depression, anxiety and substance abuse. I was only ever comfortable in social settings if I was drinking.

I have always had a hard time being physically close to other people. I feel awkward, I feel like any attempt to have normal conversion is obviously forced and perceived as awkward. I always have a hard time reading people and cannot handle sarcasm. I can't read body language or facial expressions. My mind finds a way to twist the meaning of a smile. That sucks. Smiles are supposed to be universal. Compliments are hard for me to believe. I find them to be given out of pity or a joke to be laughed about by the parties present later.

When I am at work, my husbands family's get togethers, graduate school, or anywhere other than home, I am constantly obsessed with my hygiene. Wondering if my breath stinks, if I have BO, clothes smell bad, if someone can smell my feet through my shoes and socks. I shower for a very long time. I brush my teeth, don't smoke, always chew gum or breath mints... It plays in my head any time anyone gets near me.

I am sober, happily married, not on any kind of medication, and in graduate school for special education. I struggle with my battle everyday all day, but I have found peace and will not give up my fight. I am learning different methods of dealing with it, and have found comfort in putting a name to the symptoms. I needed that.

Vee said...

Thank you for sharing, the fact that you can do so is so good. I have been married for 27 years to someone who I now believe has aspergers - although for years I thought all the problems were my fault. Because he is disabled I also have to care for him 24/7. He is now quite old and bitterly resents the fact that he cannot do so many things and that he has to rely on me. Yet he attacks me verbally so often; and I find that my patience is far from inexhaustable and I am becoming like him - angry and frustrated. Now I fear he is showing signs of dementia too. He has always been one who has to be in charge and in control of any situation; and as he becomes less able to cope, and forgets things and makes mistakes he flies into rages. I try to remember it is not his fault, but that does not make things easier as I keep forgetting that I cannot be myself and natural, but have to watch everything I do and say. Sometimes all is well and I relax - and then I say something quite innocent and he is off again. My own health is suffering, but I cannot see a way to improve things.

Anthony said...

I read every word like the story was my own - and I don't even believe I have AS - my partner and counsellor want me tested. I don't have the social issues, don't experience anger, dont drink, smoke ... and have a three very close and dear friends - but I do find the way others view the world quite frustrating. I now know how difficult I must be to live with - or must have been - I now live on my own after 29 years and three lovely children. I wonder if I could have benefited from a little more self awareness of my own 'strangeness' when I was younger.
I don't need a name for my behaviours, but I do wish I had some strategies to help me clarify why the world appears how it does to me - and that is not wrong, just different.
I think if I could get people to acknowledge that difference is OK, life would be somewhat easier.
I love how people with AS have shared their own suffering, because it seems to me, most of the compassion is reserved for the spouses - not for those living through it themselves. I have compassion for my spouse ... but I wouldn't mind some in return ...

Anonymous said...

Thank u for the info my son is going to be twenty an has aspergers we found out when he was fourteen Im trying to learn all I can its very hard for us because I dont know much about this and im his step mom and have him only partime

Anonymous said...

Thank you so much. I especially appreciate the letter. Our 22 year old daughter has just recently been diagnosed with Asbergers after years of trying to figure out what was "wrong". It never occurred to us that this was the issue at any time during her childhood or teen years. Now it makes so much sense looking back.

WolfArvak said...

Thank You for this. I am glad I found this. Everything happens for a reason. Finding info about what I have been diagnosed with as an adult is hard because not many people can understand what is truly going on and why. We make mistakes we question this and that on a different frequency then most. Thanks for this. Edog

Spudatoes' Journey said...

Hi and thank you. I have a 27 year old son who may be on the spectrum. I feel so responsible as a mum as I feel it must have been my fault. I don't know how to help him. He is a singer and performer but blows all auditions I am sure as they don't see who he will be in the show. Auditions are like interviews and often it is hard to see the real person. When he does shows he is amazing as he is so focussed on perfection but he has to get there. I only can try to tell him what to do but I can't be there for him. I am spending my life totally stressed about him as he is so loved. A girl left him after a 5 year live-in relationship and I don't think he will ever move on from that too. I just want him to live his dream(even in a small way) but not knowing the industry he is in or how to find opportunities for him to perform I am so lost. I feel so depressed and lost as I can't help my son.

Lindsay said...

Your letter was very thought provoking, thank you for sharing it with us. My 50 year old brother was recently diagnosed with Aspergers although my mum and I have suspected for some time that he was in that spectrum. As a younger sister it is hard to watch him not embracing his life, but your letter has helped me to appreciate life through his eyes more. In the absence of a wife dies having a younger sister around help ? I hope so, anyway.
Lindsay

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