Saturday, June 20, 2009

Asperger's in the Family Tree

Well, I must warn others not to make the mistake I made as a new-to-Asperger's parent. Don't let the in-laws think that you think this comes from their side of the family.

Yikes.

I tried to be careful. I tried to very sensitively ask if some of the symptoms I'm reading about are seen (by anyone else besides me) in members of the extended family. What I got was not "Wow. Yeah! That explains a lot of the struggle I've had over the years with so-and-so." There was no "So that's why no one in the family has ever been close!"

Nope.

The reaction was anger. There was no grasp of the value of understanding family members better. There was no embracing of the goal to communicate with others better through this knowledge. It was "No! They don't have Asperger's Syndrome! They just have a lack of communication with others. That's very hurtful that you would suggest that. You should just accept how they are without analyzing them."

So, once again I feel like like I am going insane. I feel like an alien for wanting to communicate better, for wanting to be close, for wanting understanding in relationships with my in-laws.

I guess it was helpful in one way. It makes me believe that even more members of the family than I had thought have at least a shadow of Asperger's. I will continue my quest to learn how to communicate effectively and well with adults who have AS as I am finding that I know more aspies than I realized!

5 comments:

  1. Aspergers is a genetic thing and if one person has it then it stands to reason that you'll find it further up your family tree.

    Knowing this and saying this however are two entirely separate things. It's usually fine to talk to your own family like this but it's not a good idea to say it to your in-laws. Best to leave that bit up to your partner.

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  2. My family is difficult in this same way (I'm the Aspie in our marriage). On our way to family events my husband will advise me to "stick to the weather and your health" (as conversational subjects). He is quoting Professor Higgins advice to Eliza Doolittle when he takes her to her first public outing--the races at Ascot (My Fair Lady). I rely on my husband's humor to bolster my courage this way (like whistling in the graveyard). Since many of my family members have Aspie traits, we are often insensitive to each other (empathy issues). This trait combined with rigidity and black and white thinking has led to some serious betrayals/misunderstandings. Whenever family members take sides it seems to be along these original fault lines which have become a hotbed for superficial conflicts. No one in the family talks about what the real fight is about. My children tell me that their cousins paint me as someone trying to straddle the chasm and pretend it's not there, but what it feels like to me is dancing while somebody shoots at my feet. Anyway, you can bet that you will not get at the real reason for the tensions within your husbands family, but it would be wise to consider it hallowed ground. I have introduced literature about Autism Spectrum Disorders into my family and admitted that I am afflicted, but so far I am like the lone voice in the wilderness. Mind you, they don't look at me like I have two heads as they did initially (I suppose that's a kind of progress). My husband calls ASD the "elephant in the living room" in my family.

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  3. Thanks for sharing this. It encourages me and I believe you are right that I need to "not go there" in conversation with them.

    Funny that you mention "My Fair Lady". Prof. Henry Higgins is so "extreme male brain" that we laugh hysterically at everything he says. It's refreshing to see the humor in the sometimes painful misunderstandings surrounding male and female differences.

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  4. My daughter is learning about genetic disorders in Biology class and they just learned about the symptoms of Fragile X Syndrome. It is connected to Autism Spectrim Disorder. Have you ever heard of anyone being tested for Fragile X in conjunction to ASD or Asperger's syndrome?

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  5. My husband's family has a cluster of autistic traits in his family: My husband's father is a classic Aspergers male - technician, routine-driven, unemotional, etc. The maternal side of my husband's family has always been a puzzle. They all demostrate autistic traits, but "kinda." Same with my husband. They all seem to be a bit "simple" but not enough to set off alarms; they've all worked, several have attended college and had careers. They are more personable and expressive than typical of autism, don't cling to routines, and lack any hobbies or interests.

    Years ago my husband was diagnosed with Aspergers Syndrome. Yet there are some things about him that are "off" but not in an Aspergers way. He is flexible and adaptive, but not creative; he is passionate and affectionate, but painfully shy; he enjoys socializing and new experiences but it doesn't occur to him to seek them out - I have to provide them for him. In my worst moments of frustration I've thought he seems more retarded than autistic.

    He also has some unusual physical traits which are not specifically autistic: very wide forehead and large cranium with a very narrow chin and crowded teeth; hairless shins and small paddle-shaped feet; "collapsed" chest at the sternum; very short fingers for his height with broad fingertips. I felt in my gut that he must have a genetic or developmental problem. (Bear in mind that most people would not notice these things and neither did I until the marriage revealed itself to be something terribly confusing that demanded an explanation, and I started noticing details.)

    Recently I fimally overcame my heistation to investigate the physical abnormalities and discovered: FRAGILE X SYNDROME. This explains my husband perfectly. He seems to be a mild case, because outside of intimate relationships he appears and functions as normal (just a little geeky and shy).

    When my husband was first diagnosed with AS, I talked to his family about it. Their reaction was bizarre. They treated it as something very "interesting" - for him. They made no effort to learn about Aspergers. They drew a complete blank when I suggested that it ran in the family, and were a little defensive. The fact is, they like my husband the way he is: he's been very malleable and meek all his life. It never occured to them that he might be lonely, feel lost or unfulfilled, suffer anxiety, etc. They also apparantly refused to consider that the problems that other affected family members have had - divorces, mental breakdowns, social problems - may not be unique and unforeseen problems that arose from nowhere. Nor did they seem to care that any children in the family would have problems.

    I am certain that my husband is primarily a Fragile X case with Aspergers traits, and this supports my suspicions about heredity. The family is very clannish to the outside observer, but not at all warm or loving from my 20 years of observation. The family is a strong source of identity for its members. I avoid them as much as possible because I think that they do not really care about my husband. He has reached the same conclusion now that he has experienced truly loving relationships here in our home. We have an excellent marriage by any standard, and especially so compared to many similar marriages between an NT spouse and a disabled partner - and we derive our strength, joy, and identity from our "own" family.

    The more I understand my husband the more satisfied I am with the relationship. Maybe it's just me, but I work to know myself and my world so that I can succeed in reaching my goals for a fulfilling life. Understanding Fragile X has helped me tremendously.

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