Ah-ha! Moment: The Diagnosis

March 29, 2009 at 6:15 pm (Asperger's Syndrome)

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Sketches by Walter Logeman

I was in our sitting room grading papers, listening to a weekend news show on the radio with my “underbrain,” when the show’s host introduced an interview with Bram Cohen, the computer genius. She started describing Cohen’s brilliance, his writing computer code at age five, his invention of BitTorrent at 26. And then his characteristics as a person with Asperger’s Syndrome: problems understanding social interactions, no natural understanding of body language and facial expressions, lack of empathy and instinctive social skills.

I stopped writing.

The host continued her description. The upside of Asperger’s? Cohen’s ability to be engrossed in computer code for days and never miss social interaction. The ability to see abstractions in his head that don’t yet exist. The downside? People told him it was strange to talk to him so he had to train himself to look people in the eye.

Suddenly, everything inside my head went silent. The camera zoomed in on my shocked face. My jaw dropped. The little lightbulb zinged on.

At this point, Andy and I had just passed our 20th anniversary of meeting back in the Dining Hall kitchen at Amherst College where I had gotten my Bachelor’s degree. Andy had just graduated from nearby UMass Amherst with three degrees and was delivering fruits and vegetables to the five colleges in the area while starting his own farm. We had quite quickly married and moved to Central New York to start a dairy farm, which had grown to a successful operation. We had been married for over 18 years, had three boys all in or moving quickly toward adolescence. I had established a respected teaching career. We had a new swimming pool and fairly new vehicles.

We had also, by dint of isolation and lots of hard work, forged a strong marriage, an incredible friendship, and a healthy sex life. But we had certainly had many moments when I was not sure I could handle some of his idiosyncrasies. And we both knew they went beyond idiosyncrasies: some of his behavior was downright bizarre, though I loved him like mad.

But this … Asperger’s Syndrome? The characteristics sounded way too familiar.

The radio host was done with the interview and had moved on to another story. I grabbed my laptop and Googled “Asperger’s Syndrome.” Pedantic speech. Involvement with “special interests” to the point of obsession. Honesty in situations where it is inappropriate. Mechanical movements.

I zoomed to another site.

How had I not run into this? How could I have worked in education for nearly twenty years and not have figured this out? How could I know so much about autism and Temple Grandin and sat through at least five student presentations about pervasive developmental disorders and not have figured out that this was what explained my husband?

For the next week I was obsessed. I websurfed until my fingers blistered. I scoured the library. I sent e-mails to anyone I knew who also knew Andy. I took self- assessments on his behalf. I got Tony Atwood’s book, considered the Bible of Asperger’s, and stickied every tenth page. I knew beyond a shadow of a doubt that this was it, the unnamable but oh-so-obvious “thing” that wound through our lives. I simply could not believe that so many seemingly random traits could be explained by one cause.

It was like when my sister went to hear the results of her allergy skin prick tests. The doctor said to her, “So, you are allergic to honeydew melon?” She hesitated because her allergy to honeydew was kind of strange. He added, “but only during June?”

This is when a medical degree seems worth eight years of schooling. “YES! YES!” she said. “How did you know that?!”

Apparently when June grass pollinates, it affects honeydew melon and eating it can cause allergies when every other month of the year it doesn’t. The doctor went from being just a doctor to being the Great and Powerful Oz.

Over the years I had looked at Adult Attention Deficit Hyperactivity Disorder, but that didn’t seem quite right, Obsessive Compulsive Disorder, but that didn’t seem quite right, that Andy was sometimes just a huge jerk, but that didn’t seem quite right. And then this. This seemed to be so right it was uncanny. How could so many of his bizarre traits actually be explained by one thing?

Unaware of unwritten social rules of adult recreation. Check.

Unaware of offending others. Check

Needs frequent reassurance that things are OK. Check.

Indifference to normal peer pressure or fashion. Check.

Vocalizes strong disapproval of benign acts. Check.

Has difficulty accepting criticism. Check.

The more I researched, the more amazed I was.

Explosive rage. Oh, yeah.

Unusually loud. Often.

Misses cues that he is boring others. Mmm hmm.

Avoids eye contact. Now that I think about it.

Encyclopedic knowledge of certain topics. To the point of annoyance.

Trouble following directions. Frequently.

Trouble multi-tasking. Most definitely.

Exceptional long-term memory. Yep.

Intense reaction to change. Yep.

High interest in quality work. Yep.

Self-stimulatory behavior. He calls it “mumming”.

Work area arranged just so. Oh, yeah.

Trouble in elementary school. I’ve heard the stories.

Small mole above left shoulder blade. Just kidding.

Really, I was stunned. What little I had heard about Asperger’s Syndrome I had linked to autism, assuming it involved significant problems with both verbal communication and normal functioning. I would never have connected it to someone really intelligent who was able to run a half-million-dollar-a-year dairy operation.

I got the “Aspie” wife books and joined an Aspie spouse forum. I listened to every segment I could find on NPR. I ignored my job and my children. I went to my counselor. Asperger’s became my own “special interest,” and I knew, beyond a shadow of a doubt, that this was it. I was 99.9% sure. Enough to convict a person of homicide.

Two weeks of this went by. Andy was of course noticing. One of the chief traits of Asperger’s Syndrome is inability to NOT notice every single detail. The books, the stories printed off the internet. I had decided to go with the oblique approach: I left things lying around. Maybe he read them while I was at work. Maybe he ignored it all. I had spent enough years with him, diagnosed or undiagnosed, to know the right way to approach this.

The next Sunday was Andy’s day off: our hired man was covering for him in the barn on our dairy farm. I asked my beloved if he wanted to go out for breakfast, and he lit up like a little kid.

“Yeah. That would be great!”

We left Eldest son fast asleep, Middle and Youngest playing a video game. We hopped into the Jeep, Andy driving and me with a pile of books and papers on my lap, and headed the ten miles into town.

I knew it was better to plunge right in and get him warmed up to the topic. “So. I’ve been reading a little about something called Asperger’s Syndrome.”

“Yeah. I’ve noticed.”

We looked at the new buds on the trees, the little ridges of dirty snow left here and there in the hedgerows.

“Do you think that’s what I’ve got?” he asked.

“I don’t know. Maybe. I’m pretty sure it’s what your dad’s got.”

“Hmm.”

Talking to Andy sometimes is like luring a calf back to its hutch. You have to pique its curiosity, jiggle the twine, do the wiggly fingers. Don’t look at it directly. I sat quietly and looked out the window. I waited.

“So, what is it, exactly?” Andy asked.

“Well, it’s considered a form of autism – very high-functioning – actually one of the traits is above average intelligence and sometimes genius in certain areas.”

“Hmm.”

We drove by the MacDonald farm.

“Amy MacDonald is really awesome,” I said. “She has been so great about letting my student Emily shadow her.”

“Oh, yeah?”

I had the pile of papers in my lap. Andy gave them a sideways glance.

“Is that information about Ass-Burner syndrome?” He nodded his head at my pile.

I snorted a laugh. “Yep.”

“Did you want to talk about that over breakfast?”

“We could.”

We were heading out of the countryside and down a rather steep road known as West Hill into Norwich, the small city where I teach.

“OK,” Andy said.

We were down the hill now and heading along Main Street.

“Carmen’s?” he asked. Our favorite diner.

“Yeah, that’s fine.” He turned left at the light onto the rather deserted North Broad Street, which constitutes the six blocks of downtown.

We parked. Went into the small diner. Sat down. Accepted two mugs of coffee.

“So,” he said, “tell me more about this Aspen-burger thing,” and he gave me his charming, heart-melting grin.

So here’s the scene. Over breakfast at Carmen’s I launch in, favoring the scientific approach which I know will appeal to Andy’s medical mind-set. With his dad a retired pathologist and his mom a retired RN and Andy himself having switched college majors from pre-med to agricultural biochemistry, I know this is the right way to go.

I say, “Well, from what I’ve read, which isn’t that much, it appears to be a neurological difference in certain people. They think Einstein might have had it, either Asperger’s or high-functioning autism.”

“What kind of neurological difference?”

“They are not completely sure. There’s a bunch of different theories out there, but they think it’s a difference in the part of the brain called the … I’m not sure how you say it … the amygdala?”

“Oh, right, near the hippocampus, part of the limbic system.”

“Yeah! So it’s related to autism.” This is repetition on my part, but the first pitch was while he was driving and I do know enough to restate important information when there are minimal distractions.

“Really!” he says. (I have always loved the way Andy says “Really,” not as a question, but as an interjection.) “Like Temple Grandin?”

“Well, she actually has high-functioning autism not Asperger’s. She didn’t speak until she was seven. Neither did Einstein.”

“Wow. That’s intense.”

The waitress arrives. “Can I take your order, folks?” Andy orders the Western omelet with wheat toast and home fries (as always) and I order two eggs over easy with wheat toast and corned beef hash (as always). She leaves.

“That’s one of the big differences between autism and Asperger’s. With Asperger’s there is actually above normal linguistic ability. They sometimes call it Little Professor Syndrome because children who have it talk like adults.”

“Really!”

“Aspergians, as they’re called, are incredibly gifted in some areas – way above the norm. Like, you know how you try to talk to Brian Newton about how you make farm investment decisions and he just cannot get it? He probably really cannot get it. You have that unbelievable ability to see patterns and relationships and see them all at the same time.”

“Then what’s the problem side?” (I bite my tongue here to prevent sarcasm.)

“Well, a neurological system that can get overloaded and explode in rage.” I give him a knowing smile and bat my eyelashes.

“Mmmm hmmm,” he grins back.

“And problems with social interaction – though it’s sometimes hard to identify that in adults because they have taught themselves how to do the social things that they see others do. Remember you told me that in tenth grade you actually studied how popular guys interacted with girls, copied that, and then you were a girl magnet?”

“Well, yeah, but don’t all teenagers do that? Doesn’t every adolescent feel kind of socially awkward?”

“Sure, but for us so-called Neuro-Typical people – NTs – we have an instinctive ability to see social cues and read facial expressions. We can just do it, almost like a reflex, but those with Asperger’s have to cognitively process the steps. One little boy said it’s like most people use Windows to do the social stuff but he has to use DOS.”

“Hmmm.”

“And also there can be sensory issues, like certain sounds or light can be almost painful.”

“Hmmm. I would say that’s true of me.”

“You know how you always have to wear your sunglasses whenever you’re outside? I guess that’s pretty typical of ‘Aspies’.” I give this term the ironic pronunciation and the double-hooked fingers to put it in quotation marks.

“That’s what they call them?” Andy smirks.

“Well, yeah, they call themselves that.”

“I don’t like that.”

“OK, sorry.”

“I don’t find that funny. Aspies.”

“OK, I won’t say it.”

“It sounds demeaning.”

“OK! Sorry!”

“I have been labeled so many things over the years, I really don’t want some humiliating nickname like Aspie!” People at the next table look our way.

“OK, OK!” I say putting my hand on his. “Sorry.”

“So….” I continue in a soft voice, “us non-gifted ‘neuro-typical’ people have an instinctive ability to read other people’s social cues, where those with Asperger’s —“

“Could we just call it Tazberger?” He is referring to my sometime nickname for him: the Tasmanian Devil.

I smile. “Sure. Whatever. Those with Tazberger have to cognitively process social cues and cognitively choose the correct response, which is what makes socializing so exhausting.”

“Hmm,” Andy pauses and drinks some coffee. “That actually sounds pretty familiar, kind of uncomfortably familiar.”

I drink some coffee too. I decide to pause and let this all sink in a little.

“What’s that book?”

“It’s by a psychologist named Tony Attwood. He seems to be the current guru on As- Tazberger Syndrome.”

Andy slides the book over to his own side and starts glancing through it. I head off to the Ladies’ Room to let him digest some of this, taking my time on the way back to glance at the newspaper and read the notices on the bulletin board. When I come back Andy is engrossed in the chapter on sensory overload. As I sit back down, he looks up.

“I do experience this,” he says pointing to the page. “I would not wear a tie when I was a kid. I felt just like I was choking. I remember my dad practically wrestling me to the ground to get a tie on me for church and then I would take it off in the car. Ties didn’t bother my brother at all. And certain noises? They are really painful. And the sunglasses thing. I guess that really is a common trait with Asperger’s.” In five minutes he has already scanned the book and understands the condition in its entirety.

He closes the book and looks me right in the eye. “Thank you,” he says. “Thank you for finding this and figuring this out. I know you have put a lot of time into this. That was very loving of you.”

So, that’s where we began. It all went much better than I had anticipated. On the drive home we decided to make an appointment with a counselor to get his take.

Now, many months later, we bandy about the symptoms like new members of the family. For example:

Andy: “Sorry, just my Asperger’s kicking in.”

Me: “Hey, you, you’re tazzing again.”

Andy: “Oops, was that too pedantic?”

Me: “That’s OK, you were just overstimmed.”

Andy: “Excuse me, I must go pursue my special interest.”

Me: “You’re being boring. Please stop talking about Dipsy Divers.”

Andy: “Aspie to NT! Aspie to NT! Come in, NT!”

What I so love about Andy is how willing he was to hear this, to study it, and to accept it. Eventually I am sure, he will be able to if not control then at least manage it. That’s the way he is and one of the really wonderful sides of Asperger’s.

Don’t get me wrong. I confess to many days of being really angry and bitter since I made my “diagnosis.” I periodically realize all over again that 1) Andy will always have Asperger’s, 2) I will always have to deal with his Asperger’s, and a 3) it is going to be hard work to learn new techniques for managing Asperger’s. Sigh. More hard work, after twenty years of struggle and endless labor establishing a farm.

I went to my own counselor during one of these fits of pique, and she just kept saying, “Focus on the positives. Remember all the good sides.” One of the really great things about my counselor is that she is a Christian, so she knew that part of my distress came from my desire to handle this in a spiritually appropriate way. I know she will always try to help me reframe despair as a challenge to my spiritual growth.

In the months since the diagnosis, I have spent countless hours not only reading the scientific literature about Asperger’s Syndrome but also grappling with the spiritual aspects of marriage to a man living with this condition. Certainly the heartaches and frustration Asperger’s symptoms cause have been enough to make me throw up my hands any number of times and just consider escape. Doubly hard has been trying to be a good person through all this. How do you show love to your espoused when so often he is hurling hurt your way? And what if he can’t even help it? What if the behaviors of rage and rudeness are physiologically beyond his control? What would Jesus do? Hard to tell, he was never married to an Aspie.

I do know that my spirituality has proved absolutely essential in sustaining me. Only a spiritual compass could remind me that suffering and difficulty are part of the human package. Furthermore, if I am honest about it, living with Asperger’s has challenged my spiritual responses and brought to the surface parts of me that were hiding from the awful light of God’s truth. Making a commitment to the Divine unfortunately means giving God permission to burn out of you all that is not like Him. And let me tell you, there have been some infernos called for here in my damaged persona.

Part of what has kept me trying is Andy – the wonderful sides of him. Another thing that has kept me working at it is our three children. And a third is the gift I was given of a desire to try and “be holy as He is holy”. And I say “gift” because this desire doesn’t seem to come from me. My corporeal self often wants to be lazy and snarly and selfish and alone. But some other thing within me is pulling me toward a better self.

And this has been what has allowed me to keep on.

Why was I given the challenge of an Aspergian husband? Partly, I think, as a gift to me: no other teachers – by which I mean both my husband and Asperger’s Syndrome itself – could have taught me more about the spiritual gunk that stands in my way. But partly, I hope, I was given as a gift to Andy, that I can be a way to help him know himself and know that he is loved exactly as he was created. Even when it’s hard. Even when it hurts.

Holiness is hard work. And Asperger’s in the house makes it even more so. Looking back over the past twenty years, I can now see the unique challenges it has posed. I can also see how I have both failed and sometimes succeeded in handling them like an elegant spirit. I do know that it was God who knit Andy together in a purposeful way in his mother’s womb. I do trust that God gave him as a gift to me. And I do believe that the “diagnosis” has given me one more lens through which to see this world’s varied creations with divine sight.

I would LOVE to know you’ve been here. PLEASE leave a comment.

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17 Comments

  1. john elder robison said,

    This is a good story. But one thing jumps out t me. For the first 90%, you describe yourself as happily married, and on a voyage of discovery. Then, in the final paragraphs, it’s a struggle to keep going and religion enters the scene.

    Why is that?

  2. thegirlfromtheghetto said,

    Hi Maureen-

    I enjoyed reading your story so much! Very interesting. If you remember, my stepson and hubby are both Aspies. I would love to know the titles of some of those coping books. I’ve read quite a few books on the topic (Including Look Me In the Eye & I love that John commented here) but none that help me cope.

    My issue is that as time goes on my hubby gets worse. He’s “faking” so much at work by the time he gets home he just can’t deal with me and my illness. So when I was diagnosed with a possible terminal disease about five weeks ago I had to tell him “Can we talk about it?” and remind him that I’m a little freaked out. Three weeks later. Sigh. Oh, I need help with them both ….

  3. Maureen said,

    Hi G from G! Hey, we’re going to meet next week! Yahoo.
    I did remember that you are also living in the NT-AS world. I can see how your husband would be exhausted from “acting normal” all day and have little energy for emoting once home. BUT I also know how that can feel as the NT needing that from your partner. I have been reading about the Cassandra Affective, which you probably know about, which is the effect on the NT spouse in the absence of the kind of emotional give-and-take we NTs need. It is likened to Seasonal Affective Disorder.
    I didn’t even realize I had the symptoms until we realized about the AS. In one of the books we got (The Asperger Couple’s Workbook by Maxine Aston) it recommends some things we NTs should do: participate in an online support group (blogging?), join an exercise club, etc. It also has a list of things for the AS partner to do.
    My husband is a farmer, so he does not have to put on a social self for work. (You can be rude to cows and they don’t really care.) But the stress of the farm added to his AS stress tires him by day’s end, too.
    That is especially hard in your case, with your health issues. I am hoping you have others close by – family, friends – who can offer you the emotional feedback you need?

  4. Linda said,

    MO- what is NT?

    This is so interesting. I think I told you that one of Emma’s friends is an Aspie and some of the things you mention here reflect what she has told me over the years about him. Especially the linguistics. He is so brilliant with languages. I think he is actually taking every language this year as a senior.

    You are a wonderful writer. And this is going to sound weird but after reading this I just want to give Andy a hug. Which I know he would not like. So, I will just have to give you a hug next week in Durham!

  5. Maureen said,

    Linda –
    Oh! It’s so nice to see my Haven blog friends here!
    NT stands for Neuro-Typical, i.e. us boring-non-Aspies. My son Tristan thought it stood for Non-Taz, which I guess is also true.
    Andy is a very huggable Aspie, actually. He does not manifest the touch sensitivity thing. But, since he will be home on the farm, you can hug me instead.
    I’m getting REALLY excited!

  6. Maureen said,

    John – Thanks for commenting! I appreciate your thoughts, and I think it reflects my actual experiences – maybe because I am a woman and influenced by constant hormonal changes, maybe because I am an NT and my emotions come into play so often. I DO seem to experience my marriage this way. Some days I am just fascinated with Andy and love him beyond all people. Other days some of his characteristics are maddening for me. The very things that attracted me to him can also drive me mad. I am wondering if other nypical spouses ride the same roller-coaster of emotion or if I’m just emotionally volatile?

  7. thegirlfromtheghetto said,

    You know, not really. Some of my friends are going though alot right now, one just had a surprise Down Syndrome baby; Another has a child who just stole her car and crashed it while drunk and she’s 14; Another is a busy college professor who lectures all over the world; and the rest are just busy living over an hour away or out of state and rains kids. Even on of my oldest friends is in Iraq. No one has time for me and my problems and that is exactly why I blog. To find others to survive. I am a dumb dumb and don’t know what NT stands for.

    Thanks for listing some info, I have been busy being stressed and off line for about four days now. Haven just wrote a new post so go read it!!

  8. Maureen said,

    Amy – I know what you mean. When I really stop and think about it, I realize my life is really good compared to a lot of other lives. I am so darn excited to meet you and everyone else!

  9. thegirlfromtheghetto said,

    Me too. I can’t beleive Geroge is not coming. Actually, I was called to go to Mayo tomorrow and I was all “Hell no, I’m not missing Blog Baby Fest 2009.”

  10. Maureen said,

    I just wrote to George and offered to pick him up. He is just not allowed to NOT come.

  11. andrea said,

    Really great Maureen. I love the affection you are able to maintain in the midst of being brutally honest. It is not brutal at all it is more like “affectionately frank.” You and Andy are amazing mirrors for each other and the mutuality is refreshing. You are not playing the caretaker wife but co-heir to the kingdom which I love. Again, it is a lesson to me as I need to find ways as Reid matures to broach his own diagnosis with him–lovingly, helpfully, humbly and positively. Maybe a trip to Carmen’s diner is in order! I’ll be praying for your tact, grace, and intuitive ways over time.

  12. Ahha Moment | Personal Development For Success/Blog said,

    […] Ah-ha! Moment: The Diagnosis « Loving the Tasmanian Devil […]

  13. Todd von Kampen said,

    Maureen, I just read this entry after my wife of 21 years, Joan, found it. She’s in the same position you are. Only after our 9-year-old son, Benjamin, was diagnosed with AS 1 1/2 years ago did I figure out that I, too, have been an Aspie all these years — I’m 45 — without knowing it. (Not anyone’s fault, since AS became known in America after I grew up.) No two Aspies are exactly alike, but I do indeed share many traits with your Andy. I spent 25 years in newspapers, which utilized my obsessions for history, government, music and assorted trivia — and taught me enough about social skills to mostly get by. Now, after I was “retired” from my paper in March, I’m a liturgy and youth director at a Catholic parish in Omaha — something I couldn’t have managed when I started out to work with youth in the ’80s. Maureen, I’m quite convinced that God gave you to your husband — just as He gave Joan to me out of sheer grace. I thank God for her every day. I pray Andy does the same for you. And I agree with other posts: You are indeed a fine writer. Best of luck with your manuscripts!

  14. Sharon Wilkes said,

    I think I’ve just had and Ah-ha moment!!! I was seeing my counseler today and I was telling her somethings my husband said when she said that sounds like a comment from a Aspergers sufferer! So I came home found you 1st so I’m just learning about this! What a shock, I to have a terminal illness, and he worries about how much house work I’ve done. 22 yrs in this marriage so I guess I have to find a way of broaching the subject with him! Lov to u all

  15. Sharon Wilkes said,

    Maureen, I would love to join your blog. Any thing I can learn us most greatly appreciated.

  16. Emily said,

    Such an amazing and moving story! God has been faithful and will continue to show Himself faithful to you and your wonderful family!

  17. SeattleReader said,

    I just wanted to say that your writing is wonderful and I’m really pleased to have found your blog. My first Aspie friend was a coworker who looked at his shoes when I talked to him about anything other than his special interests. I began reading about Asperger’s about five years ago and now tend to notice certain spectrum traits as I navigate Seattle’s tech industry – and more recently the online dating scene. As an NT for whom the light has gone on, I sometimes find myself wanting to ask whether a guy has Asperger’s or not. I really appreciate your relationship posts and your insights into your husband’s thinking and ways of doing things. Thank you.

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