Monday 2 April 2012

Partners of Adult Undiagnosed Aspergers

April is autism awareness month. I have read that 1 in 88 children have been diagnosed as being on the autism spectrum (http://www.cdc.gov/ncbddd/autism/index.html). I was surprised that his figure is so high. When you think about it it’s not just 1 in 88 people that is affected by autism. It’s their mother, father, sisters, bothers, and grandparents.

I have also recently discovered that spouses can be affected by autism as well…..

….I am writing this post for one of my friend, whose husband (probably) has adult aspergers.

Autism hasn’t just sprung up out of the blue! Surely it has always been there? What of the now adults in their 40’s who displayed characteristics of aspergers as children, before these symptoms were widely recognized? Like Albert Einstein, Mozart perhaps?

My friend believes her husband falls into this category. She truly believes that her fiercely intelligent, loyal, socially challenged husband also has aspergers. She believes that over the years he has developed strategies hide or mask some of his traits or to help him cope with the world. These include the desperate need for down time, complete immersion in work and hobbies, heavy reliance on routine and the written word, being in a different room to the rest of the family and self-medicating with alcohol.

Before this couple had children, this system seemed to work. However, I suspect introducing the chaos, noise, responsibility and unpredictability of children into this equation greatly changed the outcome!

Parents of children with aspergers have to contend with a wide range of behaviors in their children. These behaviors could include extreme anxiousness in social situations, inflexibility, being easily upset by noise, light and over stimulation. Having children so caught up in a hobby or pursuit to the exclusion of other things. Fixating on things or having tantrums when things don’t go the child’s way.

Now image what it is like to live, not with a child like that, but an other adult. An adult who also has the responsibly of also rearing his own children.

My friend does realize how hard life must seem for her husband. She has done an awful lot of reading around the subject and has begun to understand some of the reasons for his behaviors. However, understanding why her husband has difficulty coping with the unstructured weekends does not help her cope with her children all on her own. Simply understanding ‘why’ does not help my friend or her children contend with her husbands erratic behavior.

My friends husband is insistent that he does not have aspergers . He refuses to even listen to my friend about this issue let alone see a doctor or a councilor.

So my friend has to contend with his autistic aspergers-like behaviors without the help of any services or therapies. I believe that sometimes she finds this situations desperately difficult and lonely.

I wonder if there are others out there who’s partners have characteristics of aspergers, but were undiagnosed as children. If 1 in 88 children are being diagnosed now, than there must be quite a number of adults dealing with this.

So, in this month of autism awareness, this post is for my friend and perhaps other spouses of adults with undiagnosed Aspergers. These people are not often mentioned, but their lives and the lives of their families are being hugely affected by autism as well.

Linking up with the sparkly Jess at Diary of a SAHM for #IBOT and hoping that some of her sparkle can rub off on me!!

25 comments:

  1. My family is of the head in the sand variety too. We're all quite sure at least 2 of my siblings are on the spectrum, but they've never seen anyone. That's the advantage of home schooling I guess! At least when they leave home and enter the big world there will be plenty of support available to them - should they ask for it.

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  2. Thank you for your comment :) I think these situations must be quite common. But I know from my friends experience how frustrating it can be to be married to one!

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  3. Autism/Aspergers isn't just 'children'.. these children grow up.. alot of people don't think about it as an adult thing.

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    1. Thanks Yvette, a good point. I think many from older generations have grown up without labels, but without help as well.

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  4. You're right... Asperger's is not a new phenomenon. But the children who have been diagnosed now have such an advantage compared to those adults of today who's "quirkiness" and difference was not recognised when they were children. Early intervention will make the futures of children diagnosed today that much brighter.

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    1. Thanks Misha, I completely agree. early intervention can make such a huge to children on the spectrum. It is so much better to have people aware of autism than have it hidden away.

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  5. I know a few adults who are definately on the spectrum but they dont want to get help.. I feel for your friend its hard when people wont admit they need support.

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    1. Thanks Sarah. There seems to be a stigma attached to adults getting help for things such as mental illness and autism. I so wish it were not the case.

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  6. we don't think about how it can be seen in adults and the adults that may suffer. Hopefully this awareness and knowledge can grow!

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    1. Thanks Tahlia! Perhaps if my friends husband was more aware of adult autism, he may be a little more accepting of some help....

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  7. Interestingly, a friend of mine who is in her 50's is now wondering if she has Asperger's ... it really does seem to fit. It wasn't something that was diagnosed when she was small.

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    1. Thanks for your comment! I'm not sure Aspergers was widely known about 50 years ago...I guess finding an answer, like aspergers later in life, could help a person understand themselves a little better.

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  8. To be honest I hadnt really thought about it, but you're right, it must be reasonably common.
    It must be so hard for your friend; the chaos of kids is hard enough when you're completely healthy, let alone with any other complications!

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    1. Thanks Jess...kids do seem to throw 'order' and 'quiet' out he window!!

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  9. Thanks for opening my eyes to this. Gosh, it would be so hard for your friend. I hope it gets better soon. Rachel x

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  10. My best friend and I are certain her husband is undiagnosed. We realized it after my son got his diagnosis and she was supporting me by helping do a lot of reading on the subject. It was a relief for her to be able to put things in context and potentially kept her from leaving. Unfortunately he refuses to acknowledge there are any issues and she continues to struggle with his behaviors and the additional burden of how those behaviors impact raising their very young daughter.

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    1. Thank you so much for leaving this comment :) It sounds like you really understand the situation my friend is in. I know it is hard for the person who is undiagnosed. It is hard for their partner and families as well!

      Tell your friend we are thinking of her and she is not alone!

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  11. My heart goes out to your friend as that must be so tough to know in your heart but her husband can't see it. I hope the situation improves and she and her hubby get the support they need. Xx

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  12. My heart goes out to your friend as that must be so tough to know in your heart but her husband can't see it. I hope the situation improves and she and her hubby get the support they need. Xx

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  13. Fairy wishes and butterfly kisses to your friend and her husband. I am sure there are many out there that are able to relate to such circumstances

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  14. I landed on your page today after my spouse overheard me talking on the phone about my concerns and the fact I have felt for years that he has Aspergers, but I couldn't ever find a way to tell him.

    Hours later he confronted me, angered that I even thought that, he spent all night awake..thinking, angered at me. By mid morning today, he thanked me. In a quest to prove me wrong, he did a bit of searching and was shocked reading page after page of exactly what he's living with, what his childhood was like. His thank you came with a flow of tears, and what seemed to come across as relief. As I type this, he is at his therapist office.

    As a wife, I wish I would have said something sooner or pushed harder.

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  15. There is hope there is help, but more importantly there is someone to talk to, lots of us actually. :-)

    http://www.facebook.com/groups/AspergatedWives/
    This is a group Aspergated Wives was created by women for women, any woman living with any partner that is affected by Asperger's, formally diagnosed or not. Our sister group on Yahoo http://health.groups.yahoo.com/group/AspergatedWives/ is a friendly group forum for members to chat safely and in private, if you need somewhere to share your story and connect with others going through the same experience, just drop in and say hi after joining we would love to see you there.

    This Aspergated Wives Facebook group is where you can come for information, links, connections to groups and support. Somewhere to help you make sense of and map out, your journey living alongside Asperger's. So whether you be an Aspergated Wife, partner, separated partner, ex-partner boyfriend girlfriend or what ever, if you are a female in a relationship with a person with Asperger's - this is your first stop. Please feel free to comment on the information offered here or to offer information that you have found helpful or useful. The members here are a wonderful resource of information help and support, so feel free to ask.

    AspergatedWives : Asperger Spouses
    health.groups.yahoo.com
    AspergatedWives: Asperger Spouses

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  16. this is created by women for any women living with any partner is affected .
    Call Girl Paris

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  17. I am a moderator on the above group in Janes comment. Jane is no longer a part of the group but we are still there. The Aspergatedwives Yahoo group is a wonderful crazy down to earth group of wives who commiserate...build up and support each other through the confusing frustrating and yes...sometimes sweet times being married to a man with AS. We are not associated with the Facebook group at this time.
    Tony Attwood...THE doctor of AS has said hes never knw a wife to be wrong in her "diagnoses" of her husband. It is all too common and the men who are older...30s and up were mostly never diagnosed and supported in social etiquette so we as wives take the brunt of that. Its also very well known that they are wonderful fabulous boyfriends who can change overnight after the wedding leaving the wives with a "What the hell just happened? Wheres my boyfriend??" feeling. There is a diagnosable mental condition the wives get many times called Cassandra Syndrome.
    We are not "anti" AS or autism. We know there are many layers to it and that most AS men have areas where they are genius level and contribute greatly to society...but in our group no one is turned away for being angry upset frustrated outraged and lost...because we all are at times. Encourage your friend to join...and anyone else who knows a woman in this situation. It really save my sanity and I was able to move through a much needed divorce with grace and am now becoming friends with my ex. Thanks so much for posting this!

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