Asperger's, This Crazy Life

A Secret Revealed

To my family and friends:

I have a secret. A BIG secret.

Something I’ve known about since January, and have only shared with Rhiannon (I had to talk to someone about it!). And it’s taken me months to be ready to spill it, and, honestly, days to write this post. Because I want to get this right, to say it right. And, because I’ve spent hours, days, weeks,  researching, taking tests online, and being absolutely sure. Which is hard when you have a migraine all the frelling time!

But it’s time to share. It’s changed my life, and  how I look at my life, especially my past.

And it’s been a tremendous relief.

It explains a lot. Helps me understand, and perhaps truly accept, who I am. And, helps me know what I need to work on to get along better with everyone.

And I hope it will help you understand who I am, and why I am the way I am. Not to excuse anything I’ve done, or anyone I’ve hurt, whether intentionally or not, but to explain. And most certainly, not to blame anyone for not figuring this out sooner – you couldn’t have since it wasn’t well known until recently, and I just happened across it by accident. (though, it’s been in the news a lot lately, and I have to wonder if maybe someone else did figure this out fairly recently… please let me know, if you did)

All my life, we’ve been pussy-footing around about me, how I’ve been “different” from everyone else; never fit in. Not in my family; certainly not at school; not now.

People have always called me “weird.”  “Eccentric”  or “quirky” if they were being kind.

But also things like “anti-social,”  “rude,” “cold,” “harsh,” and “unfeeling” or “uncaring.”  When that wasn’t intended, or the case,  at all.

I’ve always felt like everyone else knew something I didn’t. And they did.

Guess what?

I really am different, in a neurological way. My brain is different, it functions differently.

How sure am I? 100%. And the more I work on this post, the more sure I become, if that’s possible. Because there are lists of “symptoms” & “characteristics” as well as online tests, the same ones that are used by the MDs, and I score the same on all the tests, and have so very many of the “characteristics” I could be the poster child.

And I’m not the only one like this. Lots of other people are like this, have this “impairment”, this “difference”, and many have led wildly successful lives. Lots more, like me, have led lives of quiet isolation.

Yes, I’m getting to what this is called. But as soon as I tell you, you will likely want to deny it, because there’s a stigma involved. (no scrolling down!)

My brain is different because I have a genetically passed disorder, so it’s not my fault I have it. However, now that I know I do, I can work on the “side effects” it’s had on my life, like distancing me from family and friends, and generally pissing people off when I didn’t intend to.

See if this sounds familiar (I answer yes to all of these):

  • I find social situations confusing.
  • I find it hard to make small talk.
  • I am good at picking up details and facts.
  • I find it hard to work out what other people are thinking and feeling.
  • I can focus on certain things for very long periods.
  • People often say I was rude even when this was not intended.
  • I have unusually strong, narrow interests.
  • I do certain things in an inflexible, repetitive way.
  • I have always had difficulty making friends.

People with this difference tend to be:

  • Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, weather or snakes…these subjects may change erratically.
  • (or how about horses, American Indians, or crystals and stones, or ancient Egypt, or…)

  • Appearing not to understand, empathize with or be sensitive to others’ feelings
  • (boy have I heard that a lot! and the same was written into the psychologist’s report from the horrible custody hearing days)

  • Having a hard time “reading” other people or understanding humor
  • (how many times have I been told I clearly have NO sense of humor, except I do…but other people tend not to “get it.”)

  • Speaking in a voice that is monotonous, rigid, overly loud or unusually fast
  • (Yeah, I can still remember the first time someone told me I talk in a monotone. I had no idea I did. And I was married at the time.)

  • Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject
  • (sorry…)

  • Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures
  • (do you have any idea what a hard time I have making eye contact when speaking with someone? probably not…)

  • Moving clumsily, with poor coordination
  • (this explains why I was always, without fail, either the last or next to last person picked to be on whatever team was being chosen for in school, all the way thru from elementary thru high school.  Do you know how painful it is to be the last one chosen, over and over and over and over…)

  • Having an odd posture or a rigid gait
  • (I had to have physical therapy as a child, though partly that was because I have scoliosis. I still have to remind myself not to stand sway-backed. Will someone tell me if I have a rigid gait, cause I don’t know…)

From another site:

Children and adults with this syndrome have an intellectual capacity within the normal range, but have a distinct profile of abilities that has been apparent since early childhood. The profile of abilities includes the following characteristics:

  • A qualitative impairment in social interaction:
    • Failure to develop friendships that are appropriate to the child’s developmental level.
    • Impaired use of non-verbal behavior such as eye gaze, facial expression and body language to regulate a social interaction.
    • Lack of social and emotional reciprocity and empathy.
    • Impaired ability to identify social cues and conventions.
  • A qualitative impairment in subtle communication skills:
    • Fluent speech but difficulties with conversation skills and a tendency to be pedantic (Pedantic describes speech that is overly focused on the details of its topic.), have an unusual prosody (Prosody refers to the tonal and rhythmic aspects of speech) and to make a literal interpretation.
  • Restrictive Interests:
    • The development of special interests that is unusual in their intensity and focus.
    • Preference for routine and consistency.

The disorder can also include motor clumsiness and problems with handwriting and being hypersensitive to specific auditory and tactile experiences. There can also be problems with organizational and time management skills and explaining thoughts and ideas using speech.

The more I read, the more I correlate this to my life, and the more I read how others are just like me – for instance, other people with this are also often very sensitive to clothing, and the tightness or roughness of a material. They also tend to form a strong attachment to particular items of clothing, or color of clothing, and can want to wear the same thing every day… just like me.

Rocking is also common – whether rocking back and forth in a regular chair, swinging or rocking the legs, or a preference for a rocking chair… just like me, in my swinging chair on the deck, in my mom’s rocking chair, etc.

Another example is that those like me tend to have an innate knack with computers… something I’ve displayed from a very young age. Unfortunately, this has led to a problem… people with this tend to congregate in places like Silicon Valley, and then procreate, passing the genes involved down from both sides, leading to an epidemic of this as well as the other, more impaired, side of the Spectrum… the Autism Spectrum.  Because what I have is called Asperger’s Syndrome, or, alternately, HFA (High Functioning Autism).

It should be understood that Autism is a spectrum.  There are no nice little boxes that people are placed in.  Tony Attwood has said that if there were 100 oddities or idiosyncrasies that were defined, everyone would have 20 – 30 of them.  But 20 – 30 is “normal” (ie you are an NT – neurotypical).  Some people may have 35 or 40, and they are a little odd, but still normal.  People with Aspergers would have 60 – 70 of these idiosyncrasies.  That is the difference really, an extreme form of normal. (from In the Light)

Now I bet you don’t believe me. But you should. And before we discuss it, I want you to think about what you know about me, about my life, and do some reading. And the more you read, the more you will understand. I hope.

If you are my immediate family, I suggest you think about it a while, like, until this weekend. Which is why I’m telling you now – since Clay is coming. So we can talk about it in person. Talk it out. So I can answer your questions, cause I know you’re gonna have some.

This has rocked my world. Is still rocking my world. I’m still re-evaluating my life in view of this. The more I read of the traits of Asperger’s, the more I see that fit me… there are no words for what I feel at the moment. Or, there are, but I’m too impaired to come up with them at the moment! (smiling)

Now, you get to go read even more. There are many websites with Asperger’s info. You don’t have to read them all. Just look at a few, please, however much interests you. Here are the pages I find most useful – they will each open in their own window or tab:

At WebMD (excellent article that covers what appears at what age)

GRASP: Learn About AS

Straight Talk About Asperger’s (this one can be somewhat painful, if very enlightening, to read, to help you understand what I went through as a child/teen trying to fit in… and the bullying I experienced in school)

Asperger’s Syndrome Characteristics (a really really long list)

The Asperger FAQ at TEAAM

The Geek Syndrome at Wired (also includes a short (50 question) test)

And, for more info on the biggest of the tests I took online, you can go to my page here, and even download my results – it will tell you my answers to every question. This is only for those who really want to know…

Now, I’m gonna start work on my next post… about how I see this has impacted my life, impacts it every day, the coping mechanisms I developed as I grew up,  and what this all means to me.

4 thoughts on “A Secret Revealed”

  1. I do know a little about Aspergers. I do know you have had a hard time with relationships.
    Most of the people that know you tell me that you are the smartest person they have ever known. I have always had a tendency to agree with them. With just that alone it is hard to have a close relationship. It is hard to find a way to communicate all the feelings I have about all the experiences through out your life. If it is Aspergers, (from what I know about it) yours would be a fairly mild case. You have some really great qualities, that many people would love to have. Let me have a little time to think about it and learn more about it myself, then we can all talk. Love you dearly and am proud you are my daughter.

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    1. I love you, too.

      Actually, on the Asperger’s scale of things, I don”t have a mild case at all. I score extremely high for Asperger’s versus Neurotypical (N.T., aka a normal person). Take a look at the test on the second page I put up – it’s a 14 page report you can download and read in Adobe reader.
      https://wolfdreams.wordpress.com/my-health/aspergers-me/

      The thing of it is, there are many things I’ve never talked about with anyone, including you. I tried, but you couldn’t understand.

      It’s not at all about a matter of intelligence or a lack of it – many people with it have extremely high intelligence. It’s even rumored that Bill Gates has Asperger’s as he shows many of the signs.

      I’m working on another post where I’ll try to show how it affects me in everyday life. Both now, and in the past.

      Mom, I deeply, deeply appreciate your support and understanding. I was not at all sure how you would take this. Thank you.

      P.S. My phone is on, the ringer is on, and I have taken migraine meds, as well as Klonopin (kinda like xanax) as I was freaking out earlier. So if you want to talk, whenever you are ready, I’m here and ready too. I do think we should sit down together with Clay, Rhiannon, and hopefully Terra & Andrew and all discuss this in person. We’ll see what happens.

      Like

    2. Hmm…I have 2 nephews who are autistic. I read up on it a bit, since I knew nothing about autism. They have different degrees of it, so I can understand what you’re saying about Asperger. I’ll have to read about that now…

      I didn’t scroll down and cheat. Read what you had to say, and I don’t want to discount what you say until I do learn a little more, but with just about every point you made, I said “no, don’t see it”. Which means that I didn’t know you as well as I thought or I am the most unobservant person there is (which is entirely true!). Another option is that I am exactly like you, which is why we got along so great (or would we repel each other like magnets if we were alike?)

      thinking back on our relationship, the only time that really comes to mind that fits this is when you went MIA on me for so long. But I didn’t think too much about it because I’ve lost touch with so many people, many of those for reasons I don’t know. People have lives and they change and so on…

      I don’t like the idea that I didn’t really know you! But I stand by who we are…I’m your friend, you know me and my secrets better than anyone else, I will always be here to support and love you, even if we don’t talk or see each other for another 20 years! You know yourself best, and if your research tells you that you have Asperger’s, then I believe it, will learn about it, and find ways to continue to support you!

      Hugs to you and your family!

      Like

      1. Thank you, Kelly.

        Mostly, it’s because I didn’t talk about it, about what was going on inside. How uncomfortable I was all the time. How desperately unhappy.

        But high school was a really dark time for me, and I’m not at all who I was showing to the world at the time. Which is actually very common – trying desperately to fit in.

        On Straight Talk About Asperger’s
        http://www.paulcooijmans.com/asperger/straight_talk_about_asperger.html
        scroll to the part about “do they take everything literally” and read that section. It explains what I went through as a child. As a teen.

        Kelly, I don’t like to think about my high school years. You were one of the very few bright points of light in a very very dark time. You know how close I was to suicide, I think. Honestly, without you, I don’t think I’d be here. You were the only person who I felt really accepted me, other than Daphna (Traci), who was far away at the time.

        And for that, you have my undying gratitude, and love. Always.

        Like

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