Watch Me Disappear

Near the end of the consultation with the specialist who diagnosed me with Asperger's and ADHD, he remarked that autistic people often have "fringe" interests.  I replied, with some enthusiasm, that I have always had a love for horror and true crime, whether it be literature, films, comics, or games.  "Oh yes," he remarked, looking through his notes.  "Autistic people often have a fascination with violence."

I was struck dumb.  My love of horror was something I'd always felt integral to my personality, part of what made me uniquely me...and in less than ten words, this doctor had reduced it to a symptom.

One of the biggest conflicts about disability is whether or not our disabilities define us.  Many people will say flat out that they are more than their disability, that they are a person who is disabled, not a disabled person.  They are not defined by that disability.  But at the same time, when one's disability is literally in the way one's brain functions, not due to some accident or injury but due to a natural difference in the way it is structured, can one be anything but defined by it?

In many circles and in the excellent book Neurotribes it is argued that autism is not a "disability" in the classic sense of the term, but rather a variation on the natural structure and function of the human brain.  That the issue is not that we have anything wrong with us, but that society and culture are set up for the neurotypical majority.  We should not say "people with autism" the same way we would say "people with coronovirus", but rather "autistic people", for the simple reason that autism is not a disorder to be corrected or a disease to be cured - it is part of who we are.

It could be argued, I think, that the same is true of ADHD.  People with ADHD, I have found, tend to communicate and comprehend each other in a way that we simply cannot do with neurotypical people.  Oddly, the most apt comparison I have found is in the form of my dog.  

My dog is a greyhound, a breed that is among a particular subset of dogs known as "sighthounds".  In contrast to most other dog breeds which hunt and navigate primarily by scent, sighthounds, as their name implies, hunt and navigate by sight.  As a result, their behaviour and body language is slightly different than that of most other dogs, to the point that other dogs may avoid them or respond to them with aggression.  Sighthounds seem to travel among other dogs with a vague air of befuddlement and wounded confusion, unable to understand why interactions go wrong so often.  But when two or more sighthounds meet, there is an almost palpable air of relief and delight. Finally, they seem to say, someone who speaks my language!  Someone whose brain works like mine!  

And that is how I have felt when meeting others with ADHD.  We easily fall into conversation with each other.  The natural tension I feel when interacting with other people falls away.  There's an ease in our body language and a natural warmth in our speech.  Finally, someone who speaks my language!  Someone whose brain works like mine!

But that brings me back to my fundamental question.  

The more I read about autism and ADHD, the more I see myself in the descriptions and the anecdotes.  Yes, I have done that.  Yes, I feel that way.  Yes, that happened to me.  And the more I find the parts of my life, the characteristics that I thought made me myself, are instead fairly common to autistic people and those with ADHD.  I have never had a particularly strong sense of self, and realising this is on the one hand a relief ("Oh, thank God, I'm not the only one,") and leaves me with a frightening feeling of being unmoored.  If all of these things are simply part of my disabilities/disorders, then what can I definitively call part of me?  Are these character traits, or are they symptoms?

I suppose that in coming to accept that I am an autistic person, I am a woman with ADHD, I may come to accept all of this, whether they be unique traits or symptoms, as part of the grand tapestry that is myself.  Perhaps it's my own inherent resistance to seeing myself as disabled that makes me even use the word "symptoms" to describe these traits.  Somehow, I need to come to terms with the fact that these characteristics can both be something that is true of many autistic people and people with ADHD and part of who I uniquely am.

But it's not easy.  Sometimes it feels like the more I find out about my disabilities, the more I disappear.

You're looking for an angel, and I'm sorry I can't fly

 

Oh, fuck you.

Coming to terms with having a disability is not an easy feat.  Especially when you have been told your entire life that you are capable of something.  And then, to be bombarded with the idea that your disability shouldn't affect you or your life is not only invalidating your experience, but also just downright infuriating.  

"Can't" was always a bit of a dirty word in my schools and home, and it still seems to be taboo in a lot of circles.  Just like the image above says, there was no such thing as "can't", just "won't".  Of course you can pay attention in class, you just won't.  Of course you can keep all these details in mind, you just won't.  Of course you can stop daydreaming and focus, you just won't.  Do you have any idea how harmful hearing these words is to a child with ADHD?  I grew up convinced, utterly convinced that I was a lazy, worthless slob.  That the only reason I failed at anything was because I let myself fail.  I nearly drove myself into several nervous breakdowns throughout university, trying to force myself to focus on subjects I couldn't stand, and yet I kept being told I wasn't trying.  I remember thinking that my idea of "trying" must be somehow distorted.  I felt like I was working myself into exhaustion, but I was still failing.  And everyone around me said that I was failing because I wasn't trying.  Clearly I just didn't know what trying was.

Teaching myself the word "can't" has been one of the biggest challenges I've faced throughout this process, and it is still something I struggle with.  But it's a fact.  I have ADHD.  I can't direct my focus.  I can't make myself pay attention.  I can teach myself techniques to help with that, I can use tools and medication to help slow my brain down or improve my memory, but I can't use my brain and concentration the way neurotypical people do.  And no amount of "positive attitudes" or "I wills" is going to change that.  

I can't do it.

And just saying those words has become so scary to me, in no small part because of of platitudes like those in the images above.  Because to so many people, saying "I can't" is a personal failing.  It means a lack of conviction, of morality.  It means laziness.  Weakness.

I can't do it.

I can't.

I can't.

That is not something to be ashamed of.

If I keep saying it to myself, maybe one day it will stick.

So what do we do with our lives?

 I guess one of the hardest things about all of this is that I don't know what all this means for my future.

I'm going to be forty years old in three months.  Most women my age have a career, savings, a list of accomplishments.  What do I have?  

The last serious job I had was almost twelve years ago.  Everything else was temporary, or I was fired, frequently because my ADHD made shit unmanageable.  What savings I had were spent in the resulting periods of unemployment and depression.  I've sold a few short stories, managed a web page, but otherwise I have very little to my name.  And it's getting to the point in my life that it's getting harder for me to achieve or obtain those things.  Even if I got a perfect amazing career now, will I have enough time to save money for our retirement?  It's entirely possible my husband will never be able to work again.  Can I support us both, in that case?  

We are primarily living off benefits and the goodwill of our families.  This is not the vision that I had of my adulthood independence.  

I'm not sure that I'm capable of working a full time job anymore.  And the jobs that I seem to be capable of doing are so simple and low-end that they pay very little.  I have so little tolerance for any sort of pressure...even the jobs that I trained for seem terrifying to me now.  

I don't know what I want anymore.  And maybe that's a good thing, because I don't know that I'm capable of getting it.

A man walks down the street, he says, "Why am I short of attention, got a short little span of attention,"

 

I've rarely seen a better representation of what ADHD feels like on a day to day basis, especially for kids.

I want to reiterate that we know something is wrong with us, even if we haven't been diagnosed.  We know we have trouble paying attention, and that is frequently a source of extreme anxiety for us.  Especially when we repeatedly receive negative reinforcement for failing to pay attention.  For a neurotypical person, this might result in them learning to pay attention (though negative reinforcement as a whole is not the best way to teach anyone anything), but for us it's like smacking a paraplegic for "refusing" to walk; we can't fucking do it.

What is does result in is the development of defense mechanisms.

I have learned, for example, to have just enough of my attention devoted to whoever is talking at me to pick up some superficial words/terms and the very general gist.  That way, when whoever it is snaps, "You're not listening!  What did I just say?!"  I can reply, "You said (reference) (key word) (vague implication)," and thus avoid punishment.  Whoever it is returns to lecturing me, and I drift back into the ether.

If I happened to be focused on something when whoever it was started speaking to me, I was expected to put down whatever I was doing and listen.  This is almost impossible for people with ADHD.  We cannot regulate our attention.  I might set aside whatever I was doing, but my mind would still be on it.  And saying that I needed to finish whatever it was was unacceptable.  I was insulting the person who wanted to talk to me, implying that what I was doing was more important than they were.  Punishment again.  

These are the lessons drummed into me by childhood.  It was dangerous to let on that I wasn't listening.  It got me in trouble, it got me punished.  I was terrified of letting on that I wasn't paying attention.  But all those punishments, all that fear, didn't teach me to listen, they just taught me to hide.  I have a smiling, attentive mask rigidly moulded to my face, and I don't dare remove it.

The problem is, when you want to actually come to terms with ADHD and learn how to manage it, one of the first things you have to do is dismantle those defenses.  And that is one of the most difficult things you can imagine.

It is no longer dangerous for me to say that I was not paying attention, or that I didn't hear what someone was saying.  In fact, one of the most common phrases I hear from my husband is, "Just tell me."  But my defenses are sunk deep in bedrock, trenches dug and lined with concrete.  Nine out of ten times I don't think before I say, "Of course I was listening," or "I'm not doing anything, I can listen."  It just comes out.  And when I am called out for not listening, I respond with the same reflexive regurgitations that I did when I was a child.  I still get scared when I realise that I've lost the thread of a conversation, or when my defenses are recognised for what they are.

These are some of the hardest words I have ever learned to say:

"I'm sorry, I phased out.  Could you repeat what you were saying?"

"I'm focused on something right now.  Give me a minute?"

"No, that's not true, I wasn't listening.  I'm having trouble today."

The reflex is still there.  Maybe some day it won't be.  But for now all I can do is try to say these phrases, or something like them, in the aftermath. Chip away at the concrete, day by day.  Someday it will crumble.

I'm not crazy, I'm just a little unwell.

 I am well aware that something is wrong with me.

I remember thinking that  one of the worst things I could imagine was to have a traumatic brain injury to the point of losing a large amount of one's cognitive ability, but not one's memory.  Because then you would be aware that things used to be different, that you used to be able to think more clearly and function more easily than you did, that you used to be able to enjoy different activities and more perform more complex tasks.  You used to be able to take care of yourself.  And now you cannot.  And maybe you can remember and comprehend why, or maybe you cannot.  And that, to me, seemed like hell.  

(I don't know why I specifically linked this idea with a mental disability/brain injury.  Looking at this paragraph now it's clear to me that all of these things apply to physical disabilities as well.  I've just always had a particular horror of losing my cognitive function.)

And yet, this is the situation in which I find myself living.

When I was a student I kept a balance.  I went to school full time, I juggled all of my projects and papers, I worked twenty hours a week.  It was a heavy load, but I managed it (likely in no small part due to the fact that I was living at home, and my mother handled all of the cooking, cleaning, and laundry).  When I moved out in my early twenties, I managed.  I had a full time job, I had a chore routine, the apartment was clean.  

I recognise that in part this is because I was living alone in a five room apartment with a single cat.  Even then, my cleaning regime was hardly extensive.  I managed to fuck up my "easy to clean" glass stovetop pretty fast.

The more complicated my life grew, the more function I lost.  My now-husband moved in.  We acquired (many) more pets.  I changed jobs multiple times.  I had a severely traumatic experience and had to adjust to life on SSRIs.  We moved twice, once to a different country.  My mental and physical health, and that of my husband, plummeted.  I stopped cleaning, I stopped writing...and I didn't just stop doing these things, I stopped being able to do them.  I used to painstakingly oil my wooden furniture once a week, and now the thought of cleaning out our garage sends me into crying fits.

This is not uncommon for people with ADHD, and it particularly seems to be a trend with women.  We function, and we function, and we function, until we can't.  Our lives hit a particular level of complexity, and our brains, already stretched to their limits, break down.  And then our lives implode.  We're left standing in the wreckage, picking up the pieces of our shattered lives as best we can.  And sometimes there's just no fixing them.

I used to be able to do this.

I used to be able to keep my house clean and organised.

I used to be able to work full time.  

I used to be able to write thousands of words a day.

And I know that I used to be able to do these things.

I have been living my own personal hell, and not realising it.

And perhaps even worse than that is some people's assumption that I don't realise this, that I don't realise my life is a shambles and I need to do better. The assumption that the fact that I haven't done these things means I don't know they have to be done.

Your house is a mess.

I know.

You haven't written anything original in two years.

I know.

You're forty years old and you don't have a career.

I know.

If you don't write things down you'll forget them.

I know.

You used to be be able to do this.

I know. I know. I know.

I have also only just realised that most of the above statements have never been said to me by anyone but my own mind.  So...am I fighting my own assumptions, then?  God knows.

Welcome to your life. There's no turning back.

 It's such a strange thing realising that you aren't normal.

So much of my school life was spent either being praised or lectured.  Praised because the subjects I enjoyed - English, history, anything to do with animals - came to me so easily, while I would struggle with (assuming I didn't just outright fail them) any subject that didn't catch my interest.  One semester in CEGEP I received 90s in English, archaeology and classics...and a 27 in math.  I spent so many hours sitting at my desk, or at the kitchen table being told that I was an intelligent child, I could do these things, I just wasn't trying hard enough.

My report cards would be consistently full of comments like "doesn't apply herself" or "often makes careless errors" or "inattentive in class".  My teachers echoed my parents' words; I could do all of this.  I was just deciding not to.

So I would decide to do it.  I would sit down in class, my pencils sharpened, my notebook open, determined that I was going to change.  This time I would pay attention.  This time I would take copious notes.  This time I would pay attention.

And the next thing I knew, the bell was ringing, class was finished, I hadn't taken a single note, and I had no recollection of the time passing.  

I thought that everyone dealt with this.  I thought every kid, every student in my class had the same issue.  But for some reason, everyone but me could overcome them.  But everyone didn't have the same issue.  Everyone didn't have to overcome this obstacle.  I thought I was trying to get over the same hurdle everyone else had sailed over, only to find out the problem wasn't the hurdle, it was that my legs were tied.  

And being told constantly that I was intelligent, I was gifted, I was extraordinary...that was one of the things that kept me from seeing just how disabled I was.

Maybe it's not about realising that I'm not normal.  Maybe it's about realising that I'm just not extraordinary.  I'm not sure which is worse.

One pill makes you larger and one pill makes you small...

 When you're diagnosed with ADHD, one of the first words you'll come across is "medication".  

Back when I was a kid, there was a lot of talk of kids being "over-diagnosed" with ADHD and thus "over-medicated".  Your typical rambunctious boy, it was argued, would these days be slapped with the label of ADHD and doped into submission, rather than simply accepting him for who he is and teaching him vital life skills.  Both "South Park" and "The Simpsons" had episodes about this exact issue.  There was a big question about whether or not ADHD even existed, and if it did, whether or not it should be medicated.

Nowadays it's a general consensus that ADHD does indeed exist, and medication can make a huge difference to our lives, increasing focus, improving memory, and reducing impulsivity.  But it's still controversial.  The go-to drugs given to most people suffering from ADHD are stimulants, and those stimulants are very closely related to street drugs such as "speed" or methamphetamine.  And there is enormous potential for abuse.  

When I was diagnosed, like most people, my psychiatrist's first port of call was methylphenidate, more commonly called Ritalin.  It was...odd.  I remember saying that my brain felt like an over-excited horse being forcibly held to a walk.  Looking back, I suppose it was the first time I had any real tangible indication of how differently my brain worked, that almost physical sensation of my mind being slowed down.  

The Ritalin worked for me for a few weeks, but shortly thereafter I felt it was losing its effectiveness.  Since then I've been told my doctor should have been slowly titrating my dose up.  It's possible he did, honestly, and I don't remember it.  My memory, like that of many ADHD people, is unreliable.  It's possible as well that I was simply growing accustomed to the drug and noticing its effects less, but having done some research I've found that Ritalin is at its most potent therapeutically in the short term.  Whatever the case, I was taken off the Ritalin and placed on a different stimulant: lisdexamfetamine, sometimes sold under the name Elvanse or Vyvanse.  That is where my nightmare started.

At the lowest dose, I could feel the benefits, but they weren't strong enough to make much differense in my life.  Gradually my dose was raised to the maximum of 70 mg.  

And I began to go mad.

Stimulants have an odd effect on the ADHD mind and body.  First of all, they markedly increase focus, attention span, and working memory.  And I did see all of these benefits upon taking Elvanse.  But what I also felt was extreme anxiety, exhaustion, irritability, and a constant sense of...is terror too strong a word?  I don't think that it is.  As a stimulant, Elvanse gives you a massive jolt of energy shortly upon taking it.  Paired with my natural anxiety and lack of tolerance for any sort of pressure, however, that energy did not translate into motivation or ability to do more...it became fear.

In addition, one of the things doctors won't tell you is that most people with ADHD find stimulants have what is called a paradoxical effect; they do the opposite of what they should.  In other words, stimulants make you sleepy.  But they still have the same physical effects that they would on neurotypical people.  By mid-morning I would be desperate for a nap, but going back to bed resulted in nothing more than me staring at the ceiling listening to my heart thunder in my chest.

I stopped eating.  One of the most common side effects is a loss of appetite (which is why it is so commonly used to treat binge eating disorder), so I expected that I wouldn't be hungry during the day.  I did not expect to find even the thought of food actively repulsive until the pills wore off.  I lost over 40 pounds.  This was a very good thing in the long run for me (I was obese, verging on morbidly so), but it likely was not the healthiest way I could have accomplished it.  There was a constant sense of panic, nibbling at me like a rat gnawing the numb extremities of a leper.  The slightest thing could set me off.  I nearly ran out into the snow naked because my husband and I had an argument.  The thought of cooking dinner made me burst into tears, even though all I had to do was grill some sausages.  The sword of Damocles dangled over me on a fraying thread.  Life had become fear.  And yet I was also afraid to stop taking the medication, because I didn't want to disappoint my husband and family.  My ADHD made life infinitely harder for them, and while this situation wasn't ideal, my symptoms were still mitigated.  

I lived like this for over a year.

I finally broke in the car, when we were driving home.  I'd been skipping doses (one of the few plus sides of stimulants; most people don't have withdrawal symptoms) in a desperate effort to keep myself sane, and yes, hiding the fact from my husband, which still shames me deeply today.  But on this day, I broke.  I started crying, saying I couldn't stand how these pills made me feel, I felt like I was losing my mind.  And bless my good man and his good good heart, he held me and said we would get me help.

This is the part of the story that really makes me angry, because this is where the system fails so many people like me.  I was able to stop taking the Elvanse immediately (remember, no withdrawal), but this left me back at square one; ADHD and unmedicated.  We contacted the specialist hospital where I'd seen the psychiatrist who prescribed the Elvanse, but their waiting list was astronomical.  For a simple medication review I was looking at waiting for up to six months.  So my choice was half a year unmedicated or half a year going crazy.  This is what happens when your public health care system is catastrophically underfunded.

I was one of the lucky ones.  I had a very kind mother-in-law who agreed to pay the 500 (!?) pound fee to get me to see a private psychiatrist, a specialist in adult ADHD.  And I was lucky in another way; the first drug he prescribed, atomoxetine (Strattera), a non-stimulant medication known for being particularly successful for people who had both ADHD and autism (ie: me), proved to be the right medication for me. 

But not right away.

Atomoxetine is a wonderful drug.  It works as both an ADHD medication and a mild anti-depressant, which meant I could ditch the Duloxetine that wasn't working particularly well for me anymore.  It's non-stimulant, so no anxiety or heart palpitations.  It has no potential for abuse.  It raises the dopamine levels in my brain, making me happier and calmer.  It increases my focus and attention span without making me crazy.  I could even drink while taking it.

It also takes eight weeks to start working properly.

The psychiatrist warned me it would take this long.  He also warned me the side effects would be hard to deal with while my body adjusted, especially since I was also coming off of anti-depressants.  I mentally prepared myself.  But nothing really could prepare me for the eight weeks of utter hell that followed.  

The most common side effects of atomoxetine are all different words for "tired" (lethargy, somnolence, fatigue).  Others include depression and mood swings.  For eight weeks I sat on the couch, or I lay in my bed, and I slept and I cried.  I wondered why I was torturing myself.  I wondered why all the medications that were meant to make me feel better kept making me feel worse.  I wondered if I would ever have energy again.  I wondered if I would ever get my life back.

Eight weeks passed.  The side effects eased.  Another way in which I was fortunate; I was able to endure those side effects for those eight horrific weeks, and they did ease.  And I felt better.  So much better.  My mind was clear...not as clear as it had been on the Elvanse, mind, but that all-consuming, crushing terror was gone, and that, for me, was a more than fair exchange. 

I wonder what would have happened to me if I had been medicated as a child.  Would I have coped better?  Would I have found it made my struggles any easier?  Would my life now be better, or even different?

I wonder what would have happened had I decided not to take any medication at all, and just stayed on my anti-depressants.  Would I ever have reached the somewhat stable, even place I am now?

Do I really want to know the answers to those questions?  Does it matter?  

The Beginning

 So.

Where do I begin this?

I was always aware of the possibility that I might be autistic, at least from the time I learned what autism was.  I was awkward, with my peers, always bonding more quickly and tightly with my teachers.  But with other children I found it impossible to master or judge social norms.  My interests were eccentric, esoteric, and frequently morbid.  I seemed to lack the instinct that told other children and adults what actions or words were or were not appropriate.  It was all something of a puzzle to me.  So when I reached my late teens at the very end of the 20th century and autism was becoming the de rigeur childhood disorder, it struck something of a chord with me.  I even told my friends that, had I been born twenty years later, I would like have been labelled autistic.  

But ADHD?

Ah, that was a different animal altogether.  ADHD meant the little boy in the classroom who couldn't sit still, the noisy and disruptive child, the one who couldn't even focus long enough to read a single sentence.  That was a label that seemed to fit my loud, gregarious, outgoing brother far better than it did myself.  I was a voracious reader, able to finish an entire novel within a day.  I could lose myself for hours in projects that interested me.  I was effortlessly got good grades in most subjects in school.  If anything, those around me said that I was too quiet, focused as I was on my books or my writing.  I remember sitting for half an hour at a zoo, waiting for a turtle to move off a rock.  Of course I was a dreamy kid.  I would make careless mistakes in my school assignments, sometimes to the point that I'd get a failing grade.  I would sail through subjects I was interested in, but struggled with those I disliked.  But that was just because I didn't apply myself.  I'd rather daydream through the class than listen to the teacher.  But ADHD?  Ludicrous.

The early 2010s were a bad time for us, both my husband and myself.  I went through a very traumatic event that sent me into a severe depressive episode, and I was eventually put on anti-depressants.  I lost several jobs.  I had a severe health scare and was hospitalised for about a week.  We moved from Canada to the UK.  My husband's health, mental and physical, began to decline.  And I was finding it increasingly difficult to function.

I was forgetting things.  My vocabulary, always expansive, was declining.  The car door would be left open after we came home, the keys dangling.  I would lose items I had been using less than a minute before.  Knowledge that it seemed I'd had near to all my life all but vanished from my brain.  I would lose my train of thought mid-conversations, forget promises minutes after making them.  There was a brief period where I considered some form of very early onset dementia.  My mind, my cognition, my knowledge...it was crumbling, the pieces scattering, dissolving like sugar in water, like pollen in a breeze.  I was losing myself.

It was my husband who said it.  "I think you should be tested for ADHD."

Really?  Me?

Even at the time, I found the idea rather laughable.  Even then, I knew ADHD was a lifelong disorder, and all of this had only happened in the past few years.

Right?

We were fortunate.  There was a temporary clinic doing consults in our town, featuring psychiatrists who specialised in both ADHD and autism.  My husband secured an appointment for me, and I received what seemed like reams of forms and questionnaires to fill out.  And I remember the growing sense of disquiet I felt as I read through them:

How often do you have trouble wrapping up the final details of a project, once the challenging parts have been done?

How often do you have problems remembering appointments or obligations?

When you’re in a conversation, how often do you find yourself finishing the sentences of the people you are talking to, before they can finish them themselves?

When you have a task that requires a lot of thought, how often do you avoid or delay getting started?

How often do you have difficulty unwinding and relaxing when you have time to yourself?

The interview was more of the same.  Pieces of my life, issues I had always dealt with.  This is normal, it happens to everyone, I just have to push through.

And here I was, being told that it does not happen to everyone.

A childhood survey was sent to my mother.  Her responses were yet more confirmations.  I had been the stereotypical "Little Professor" so beloved of Hans Asperger.  I would throw tantrums if a single stuffed animal was missing from my crib, and would count them every night.  I flapped my hands to show excitement or eagerness.  I would much rather sit and discuss science and books with adults than I would run and play with other kids.  I would become fixated on projects or subjects and it was impossible to tear me away from them.  It all came together.

And so, at the age of thirty-five, I found myself diagnosed with both autism and ADHD.  

This blog is my attempt to process that.