Q & A: Why did my husband agreed to go for the diagnosis of Asperger’s then disagreed with that diagnosis and refused to go in therapy?

He can’t go into therapy unless he first acknowledges that he’s autistic. Then he must admit that he needs help dealing with it. Only THEN can he actually go into therapy for it.

When I was diagnosed I had just turned 50. I had suspected it for several months prior to making it official. Even so, there is just no way to prepare for a doctor looking you in the eye and saying “You’re autistic.” Even though I had fought to find this doctor, then put myself and my family members though rigorous tests, even though all my oddball symptoms pointed to only one logical conclusion, I broke down in the doctor’s office. I thought I was crying from relief. I finally knew what was going on! The answers I’d searched for – a quest 2 decades long! But no, not really. The moment the quest to finally get diagnosed was over, that was the moment the quest for acceptance began.

For some reason I can’t quite comprehend I was able to handle my Bipolar diagnosis more or less in stride. After all, Princess Leia was Bipolar. If she could handle this, I could. Psychotic? Actually that one was no surprise at all. Neither was Borderline, once I got my mind around what a dumb name it was. But this? THIS? Just as Deborah noted earlier, this was beyond what I could handle. One simple reason – autism = brain damage. Retardation. Pills won’t help. Therapy won’t cure. I keep imagining a misshapen human brain lurching about in my skull, a foul, steaming thing full of odd colors and writhing shapes.

Yeah, I have one of THOSE imaginations. I tend to go to dark places.

I know, logically, none of that is true. I know autism can be a gift. I know I walk with giants of science and art. I know my quicksilver brain and massive creative streak, my ability to write as well as reason all stem from autism. But I also see the ruin of my life behind me, the opportunities I couldn’t take advantage of because I had NO idea why I did what I did. For the longest time I didn’t know anything was wrong with me at all.

I’m glad I finally know the truth. No matter what, knowing is better than wondering. I’ll always opt for the red pill. But had you told me two years ago that I’d still be struggling to accept this diagnosis today I would have laughed. It’s not the first one I’ve received that changed my entire life. But it’s by far the hardest.

It could be that your husband is going through a similar struggle. If so, be patient with him. The autistic mind is wired differently to begin with. We’re not adept at going down rabbit holes unless we make them ourselves.


The life changing diagnosis, part 1

Where were you when Kennedy was shot?  The death of Elvis?  John Lennon?  Princess Diana? How about Michael Jackson?  Whitney Houston?

Events like this shake a society by bringing it face-face with its own mortality.  It doesn’t always happen on a personal level.  When it does it’s usually good material for an After School Special, a Movie of the Week, or a “very special episode of…”.  Lucky me, I’ve never won the lottery, but I’ve had the life changing  conversation with my doctor twice.  For those of you who have never had that conversation, I’ll try to describe what the first one was like.

I had just turned 30 when I moved to New Orleans.  I got a job as a tour guide.  I used to walk miles every day.   I lost weight, I was in great shape. Then my back started to twinge.  Just a little at first, now and again.  And my left leg kind of hurt.  No big deal, just walk it off, right?

I walked and I walked and I walked and it got steadily worse.  After a few months I couldn’t sit, stand or lay without pain. Nothing I did made it better, and nearly everything I did made it worse. I had no health insurance, no access to a doctor, and no Web MD.  I carried on until I collapsed.

I vaguely remember standing in line at the ER of Charity Hospital, but I don’t remember how I got there.  By then the pain was so bad I was having trouble seeing, or even breathing. The flaming pain started somewhere at my hip and radiated down until it defined every second of every day.  Eventually, I fainted.  I don’t remember hitting the floor, but I do remember two bands of steel suddenly wrapping around me.  I was told later that one of New Orleans’ Finest saw me go down and got me to a wheelchair.  I don’t know who you are, kind stranger, but from the bottom of my heart I thank you.

I worked my way through the Charity system, which could best be described as “hurry up and wait”.  I was immediately scheduled for an MRI, but the first available was over a month away.  I waited.  I didn’t have a car, or a cell phone.  The MRI department was in the hospital basement, and I remember nearly dragging myself down a long, very cold hallway, only to be told they had tried to call me – my appointment was cancelled.

I burst into tears.  They gave me the MRI anyway.

That’s when things got surreal.

I believe it was the next day – I got a call from a neurosurgeon.  He’d seen the results and we needed to talk.  NOW.  Could I come in that day?  No?  How about tomorrow morning?

When I had answered his call I had picked up a normal phone.  When I put it down it seemed to weigh as much as a bowling ball.

The next morning I wasn’t directed to the hospital clinics, but to a floor of private offices. The surgeon walked in with a colleague, and the two of them were very serious.  I was immediately put through a series of simple tests.  Push, pull, stand, sit, can I stand on my toes?  I could do all that.  But when they asked me if I could stand on my heels… I could not.  I didn’t know that – how often do you stand on your heels?  I couldn’t do it.

Then my world changed.

When they said “degenerative disc disease” I didn’t know what it meant, though it sounded dreadful.  “Ruptured disc” got the idea across with more clarity.  There were two of them in my lower spine.  One was inoperable.  The other needed immediate surgery.  In addition, I suffered from a rare birth defect.  Normally it wouldn’t matter – unless I needed spinal surgery.  In this case if the surgery went wrong I had a good chance of ending up a paraplegic.  It could even kill me.  Without the surgery the pain would only get worse, and I was already crippled from it.

How did next week work for me?  They left the room to let me think it over.

Most people, when talking to strangers, try to be friendly.  I was smiling and nodding throughout the conversation.  After they left I realized I was still smiling, as though they had been talking to someone else, saying something else.  Subconsciously I was waiting for someone to pop out from a hidden door and say “just kidding”.  When I stopped smiling everything just seemed to… freeze.

It was as though I could hear the air, or the colors in the carpet.  I remember the fabric of the chair was burgundy, and slightly rough.  The carpet was made of tight little wine colored loops.  The frame of the window was black and the glass had tiny bubbles in it.  The people on the street below were walking in the sunlight, the cars were driving by like everything was normal, and fine.  Oddly, it was as though I was seeing a chair, a window, a carpet, even sunlight for the first time.

In retrospect I’m sure they’d seen a similar reaction before.  The surgeons left me enough time to get a grip, but not enough time to panic.  The surgery was scheduled for the following week.  I thanked them, and left.

I don’t remember getting home.  As I didn’t own a car then I took the streetcar everywhere.  Not easy with ruptured discs.  But I don’t remember it, or calling my parents, or telling my housemates what was going on.  My memories are all strangely specific, like the light and shadows forming cracks on the sidewalks, or the sound of people talking, but not their words.

My emotions were locked in a crazed merry-go-round loop.  I could be dead in a week, or paralyzed.  There was no getting out of this, it would never get better.  My choices were stop where I was or go through this nightmare of hospitals, surgeons and recovery, knowing that it was the first surgery, not the last.  My traitor back had become a dangerous hurtful thing I could not escape.

I had no choice, which was confusing.  Surely there had to be options.  Where was the guy who would pop up and say “just kidding!  Here’s a prescription – pop this pill for a week and you’ll be fine”?  I kept waiting for that guy.  In truth, a little part of me is still waiting for him.

Of course, I lived through it.  Or, more accurately, I survived.  I didn’t know it at the time, but the person I had been, the one who took things like good health and long life without pain, died that day.

The second time I had that conversation, it was even worse.  But that’s for another post.