Confronting Anxiety

Anxiety permeates the autist’s life.  Regular things that are very easy and relaxed for other people are full of anguish for people with ASD.  I spend hours considering how to bring up something I’m concerned or upset about.  If I anticipate that someone may be upset with me I spend hours considering how I could respond and all the variables that could change their response and how I should respond to each of those potential responses.  I worry about upsetting people.  I stress over how to deal with complicated social situations.  But I also stress about how to deal with simple social situations.  Before I book an appointment with someone, I research all possible angles.  I want to make sure the person I see is the person I want to see for a long time as meeting a new person is very stressful.  I also have to build up to starting new things.  When I wanted to take yoga, I spent 6 months looking at the studio’s website and two weeks planning on going to a class only to come up with some excuse (I didn’t have the right change, I forgot my mat, I didn’t have the right pants, etc).  Eventually, CountryBoy had to drive me to yoga and drop me off.  He knew I wanted to go but needed someone to push me a bit. When I’m seeing someone for a service (physio, yoga, etc) I get anxious about if they think I’m weird.  I prefer not to talk and they usually want to chit chat and often want feedback.  I scurry around the edges.

Anxiety is my response to uncertainty.  Social situations are so challenging for me that I try to plan for them.  The uncertainty one confronts when dealing with others leads to anxiety.  My anxiety is overwhelming.  I get severe chest pain when my anxiety gets high.  I am more prone to meltdowns.  I have difficulty coping with life.  I am able to hold it all together ‘out in the world.’ In 31 years I’ve never had a public meltdown.  However, once I’m home and the door is closed the building anxiety needs an outlet.  Sometimes that is sleep.  Sometimes I cry.  Sometimes I melt into a puddle on the ground and rock.

So, one would think that acknowledging anxiety and working on strategies to deal with it would make it better.  That isn’t necessarily the case.  When I started seeing my naturopath, we discussed that my concerns were two-fold: exhaustion and anxiety.  We started me on a licorice supplement to try to rebalance my adrenal glands so my energy would rebound and put me on a wheat-free and dairy-free diet.  I certainly don’t follow the plan perfectly and I’m still working on a balanced diet, but without a doubt this approach has increased my energy.

No longer am I coming home from work and falling asleep within an hour for the night.  However, something peculiar happened as my energy improved.  My anxiety got WORSE.  In retrospect, this isn’t such a surprise.  My body was responding to stress by avoiding the anxiety.  Sleeping let me evade this emotion for quite some time. When I nourished myself properly and was able to sleep on a more balanced schedule the result was that my body had enough hours, after I’d “come down” from my super focused work state to experience the anxiety.  Moreover, as I started to track the anxiety I realized that many things that should have decreased my anxiety were actually leading to the high points on my anxiety scale during the course of a day.  For example, while attending Yin Yoga or a “Relax and Renew” class, I would often feel my anxiety was at a 9 out of 10.  Why?  Because during yoga I was present enough to feel the built up tension.

So contrary to what I had hoped, providing myself with proper therapy (physical and mental) was actually leading to higher rather than lower perceived anxiety.  It wasn’t that my anxiety was higher, but that I was actually processing it rather than avoiding it.  So for day-to-day living it FELT like I was experiencing more anxiety while doing all these supposed good things.

So where do I go from here? Well I have decided to avoid any events, social outings, discussions, etc that don’t promote healing and that I don’t have to do in order to do my job.  I have made time in my day for some alone time.  And I am redoubling my efforts at therapy.  I am attending yoga several times a week, focusing on relaxing yoga.  I am exploring meditation.  I am finding time for tea every day.  Rebalancing my anxiety level is going to take some time.  Confronting that anxiety, looking it in the face and not running away is a necessary step along the way.

How to Cope - Strategies that Help

According to the stats, I’m a minority in the ASD community.  According to the stats, approximately 85% of the Asperger’s population does not have a full-time job.  Now, in my view those stats are probably a bit inflated as some people with ASD who are working don’t know they have ASD.  But even so, working at all as a person with Asperger’s is not that common.

I do find work stressful.  I tend to think in black and white.  I have to work hard to set that aside.  I find chit chat a bit challenging.  So on days where my anxiety is high I sometimes choose to opt out of lunch with colleagues. I get over-stimulated from sensory overload.  So sometimes when I come home from work I decrease my sensory exposure as much as possible.

But I do manage pretty well.  I am good at my job.  I have good reviews at work.  I care about the people I work with and I go to work everyday and contribute my best work.  I am particular so the quality of my work is good.  I work long hours when needed.  I believe in always doing my best work.  My reviews of job performance at work have always been good.

That said the health costs of work are higher for me than they are for a NT peer.  It takes me longer to get ready for meetings.  I worry more about being prepared and saying the right thing.  I worry about if I’m reading situations correctly and how my peers see me.  I tend to obsess about the details. I want to make sure I’ve done everything in my job description as well as I can.  These, combined with the sensory challenges leads to increased anxiety.

Initially, I thought my amount of anxiety was normal.  Many of my NT peers have anxiety that is more obvious (inability to sleep, panic attacks, etc).  Anxiety is common in the workplace.  But I realized that because I couldn’t let worries go when I got home that I was BECOMING my job.  I realized that no matter how well I did at work at some point it needed to be part of rather than my entire life.

So, I started looking at options for getting support.  Here are a few things that have worked for me:

1 – Exercise – I love to run in the woods.  This summer I hurt myself, so I’ve been cross country skiing instead.  Getting active really helps.  Doing it by myself gives me breathing space.  Doing it in the outdoors provides some peace and serenity.

2 – Yoga – I am focusing almost exclusively on relaxing yoga (Yin) rather than the more powerful forms of yoga because I know my balance is all out of whack.  I found a yoga studio that is close to home, small, has a great space and really great instructors.

3 – Physiotherapy and Massage Therapy – My body definitely feels my anxiety.  My neck takes the brunt of it, so using physiotherapy to strengthen my neck and back while massage to relax it has helped.  I worked hard to find practitioners I’m comfortable with working on me.  We don’t really talk very much during the sessions.

4 – Naturopathic Doctor – This lady is an angel.  She is knowledgeable, science driven and curious.  I am trying a wheat-free and gluten-free diet.  I’m trying different supplements.  We chat every few weeks about my progress.  It is helping.

5 – Psychologist – This is the expensive item on my list.  At 180$ an hour it is a bit painful to pay the bill but it is worth it.  I considered a psychiatrist as they are covered by the government but finding one to take me on when I am functioning well and can afford to pay someone would be a challenge. In addition, I am truly not interested in taking drugs so it would be hard to find a psychiatrist who is open to working with someone who starts by refusing medication.  More to come on finding a psychologist in the next post…. 

Wishing I was Normal

Within the Autism community there is a lot of discussion around what it means to have ASD.  Is it a disability or a difference?  People say it is about being different not less.  I agree with the latter statement but I’m not afraid to say that despite all the things that I do find easier because of ASD, that given the choice I would choose “Neurotypical” any day.

I cannot count the number of times in my life I have wished that I was normal.  I grew up in a small town.  I loved to discuss academic topics.  Most of my classmates did not.  However, most of my classmates also didn’t graduate from high school, let alone college or university.  So I figured that this difference was merely a result of my environment not some fundamental difference between me and the rest of the world.

By in large, I was okay with being different in high school.  My mother often seemed very relieved that I didn’t care what other people thought as it led me to make responsible decisions.  I never did drugs.  I didn’t drink until I was legally allowed to.  I showed little interest in partying or getting into trouble.

But even then, from time to time I did wish I was normal.  Often when I was dealing with the challenges of interacting with my peers or on the verge of a meltdown I would think to myself, “Why can’t I just be normal?  Why can’t I just want to fall for some local guy, get married and have kids?  Why do I want to go to university, change the world, etc.?” Life would have been so much easier if I were more normal.

In university, where I thought it would get better, it actually got worse.  The university I attended was full of students obsessed with spending time with other people.  The idea that someone might enjoy sitting alone was incomprehensible to most of my peers.  And so I caved to peer pressure and spent my time trying to do things with other people, rather unsuccessfully I might add.  But in this case, when I was alone I wasn’t content, as I had been in high school.  In fact, I was actually pretty unhappy, maybe even depressed.  “Why?” I would moan to myself “can I not be normal?”

When I graduated, I was very nervous about applying for jobs, more so that seemed reasonable given the job market.  I was worried I would never get a job.  I obsessed about the interview process. I practiced my interview questions endlessly.  I knew I could come across as a bit quirky and I hoped it wouldn’t show. 

It wasn’t that I really thought about being normal in terms of applying for jobs but deep down I just knew.  Every so often in my life the difference would be apparent and I’d wish I was normal and then dismiss the thought. Deep down, from a very young age I knew that I was different.  I went to great lengths to hide this difference from myself and others.  I often thought that if people really knew what I was like that they would think much less of me. I also felt that at some point I would be found out.  As a result, I always assumed things were impermanent: relationships, friendships, jobs (and therefore access to money).

I always have, and still do to some degree, keep a distance between others and myself because I figure eventually they will come to see me as “different” and they will discard me.  I also am obsessive about saving money. Even though I know I am very good at my job and work as well with my colleagues as my Neurotypical peers, I worry that some day I might get laid off and might have difficulty getting another job in a tough job market because I do come across as different and while I know it is different, not less, future employers don’t always think like that.

So while I understand why people say they like who they are and wouldn’t change the ASD if given a choice and while I don’t support research into “cures” I do still often wish I was normal.  If society was better at accepting diversity all would be well.  But since it isn’t, I am often the one bearing the brunt of society’s assumption that I should be like everyone else.  I’m not the person who is going to change the way the world looks at Autism and I doubt that will happen this century, so as unpopular as the statement is, I’m going to continue to wish I was normal.

Dealing with "The Improvement Society" Part Two

This is somewhat repetitive but I'm still hashing this topic out....

As I read literature on Autism, I frequently come across something like the following: if you have ASD and don’t have a lot of friends and think you are happy, think again.  You are in denial.  You don’t really enjoy spending time alone.  You just don’t have any other choice. If you work on your social skills and get better at them, you’ll want to have more friends and more social interactions.

This perspective has driven me crazy for quite some time.  I have family, a partner and a few friends.  I work with people all day.  When I come home I am happy to spend time alone thank you very much.  By the time I get home after work, I actually crave a bit more alone time than the average person. That means that if I’m going to socialize at work, with my partner and with my family I don’t actually have a whole lot of time for a big social group.  I know what I need. I don’t need your condescension.

I call this group (be them NTs or people with ASD who believe in cures and/or becoming as NT as possible) the “Improvement Society.”  Of course we all want to improve but how much should we improve? I figure that probably 80% of my time, I am working hard to meld into the NT society.  Is it really my responsibility to work on melding in the 20% of the time that I make others a bit uncomfortable because I interact differently than they do?  From my perspective, I am the one making all the changes.  NTs aren’t changing.  They aren’t making an attempt to accept a neuro-diverse world so in my humble opinion the challenges they have with me are actually challenges they have with their limited view of what acceptable behavior actually is.

Now I’m not saying that I should just ignore all social rules and act however I want whenever I want.  All I’m suggesting to the Improvement Society is that people with ASD are constantly working to fit in to a social system than doesn’t accept them so to ask them to change more seems unreasonable.  Moreover, to suggest that if they aren’t trying to make friends or improve their social skills that they are really in denial seems totally unreasonable.  I think people on the spectrum are pretty aware of their situations and spend quite a bit of time thinking about it.

I’m constantly asking myself, how much do I have to bend?  No one else is trying to accept me as I am so how much change is reasonable before I’m actually breaking myself to please others. I guess my position is that I am always working on this stuff and when it feels like too much bending, it probably is and I therefore, usually try to remove myself from those situations when possible.

That said a prominent researcher on social skills has introduced a valuable idea into this discussion. She says often people with ASD say they don’t care about what others think while also asking for increased medication for anxiety.  So while they may not intellectually care, their bodies seem to care. I’m not on meds but I do experience anxiety that can be pretty severe at times.  So I agree that failing in social situations can lead to pretty severe anxiety.  However, I don’t think that this means that people on the spectrum need to be told to make more friends.  The situations that typically cause me anxiety aren’t interactions with a small group of friends but are more casual interactions with people I don’t know as well.  So I agree with Garcia that we need to work on social skills to support ourselves in ways that make anxiety manageable.  But I don’t agree with the Improvement Society’s obsession with helping people on the spectrum make friends.

The Testing Process - Part One

So over the last few days, I was evaluated to determine if I was on the spectrum or not. This process started about a month ago when the waivers, consent forms and pre-questionnaires showed up in my inbox.  I assured my Doctor that this paperwork would be filled out in no time but I found myself putting it off.  Although I had planned to fill it out when on holiday, every time I sat down to do it I found an excuse not to start.  It was quite overwhelming paperwork. I also had to get my mother to fill out part of it and that was a bit tough.  My mother is having a hard time accepting that there might be something "wrong" with me, even though she's had to deal with the consequences of that "wrongness" for years. Eventually, after a number of false starts both myself and my mother filled out the paperwork that was required.

Next, came the phone call with my Doctor's PhD fellow. I was pretty nervous about this 'first impression.'  I don't enjoy talking on the phone and I really had no idea what to expect. When she did call, all went well.  She asked me about the paperwork, told me about more paperwork and told me how my 2 days at the clinic would proceed.  She then asked me to tell her why I wanted to be evaluated.  I explained that I had learned about ASD a year ago.  At the time, I hadn't wanted to believe it, but the more I learned the more it seemed the the 'label' explained a great deal about me.  I explained that I had spent a great deal of time debating seeking a diagnosis.  I told her that ultimately what it came down to was control of information.  I didn't necessarily want to broadcast this but I wanted the decision to share or not share this part of myself to be my decision.  Without a diagnosis I really couldn't share it with anyone because it would lack credibility.  I also explained that even without a diagnosis simply learning about ASD had changed my life.  It explained so much about how I interacted with the world that even if I never got a diagnosis that this knowledge made my life better.  Then she asked me why I thought I was on the spectrum.  I really didn't know where to start but once I did I blathered on for about half an hour. In retrospect, I think she wanted off the phone but I felt compelled to tell her everything because I was worried about her previous question.  Was she skeptical?  Was she one of these doctors who assumed everyone who questioned if they were on the spectrum was just making it up? I had never considered seeking any type of diagnosis before this.  I also hadn't sought out this diagnosis, it found me.

Nonetheless, when I got off the phone I started to worry I was going to walk into an office of a "specialist" who had already decided I was "fine."  So after some debate (regarding if asking this question was worth the risk that I might annoy the person who was going to do the testing) I decided to email and ask them if they had much experience with adult women who seemed pretty "normal."  I explained that I didn't want to offend but I'd read so much about psychologists doing experiments to make sure people couldn't 'fake' diagnoses that I was worried they wouldn't believe me.  The Doctor was very gracious.  Only after the testing was done did I realize that these two ladies had extensive experience with adult women and that I needn't have worried.

A few days later, two more tests appeared in the mail.  The EQ test and the AQ test.  These tests were simple to fill out but nonetheless I wasn't sure I liked them.  The EQ test was to test empathy.  One question asked if I'd be upset being late to meet up with a friend.  To me that was a dumb question.  Which part of the question was important to the examiner?  Were they testing to see if being late would upset me?  Or were the testing to see if I considered my friend's point of view?  Given that it was an empathy test, I assumed the latter.  But that wasn't what I first thought of when I saw the question.  See being late drives me crazy, but only because it messes with my routine.  If I am late I might very well have a meltdown. In that moment, what the person who is waiting for me is thinking or feeling doesn't even register on my radar.  Perhaps to a Neuro-Typical that seems awful.  But I don't think it is awful just different.  I realize we aren't supposed to keep people waiting so I make the effort to be on time.  However, if I am late the thing that sends me into a panic isn't the social expectation. Its the failure to follow my plan or keep to my routine.  So needless to say I spent quite a bit of time after I'd answered all the questions considering how good my doctor was based on the quality of questions she'd included in this questionnaire.

Once these were all done it was time to climb into the car and make the drive to the city where testing was to be done.  I like to drive but hate to get lost and am not a fan of traffic.  Overall, the drive was okay but the last hour was very stressful.  I tried to make a bit of a vacation of the trip.  I camped in a really nice campground one night on the way there.  I had planned on camping near my doctor's office but when I got there, the campground was very scary looking so I checked into a hotel.  By the time I arrived at the hotel, I was totally worn out, so I paid the crazy rate they were asking and went to my room.  I was dressed very cozily (and therefore totally inappropriately for this upscale hotel) but I didn't care.  Every time I went by the circulation desk the woman at the desk tried to say hello but I really didn't care at this point how strange I appeared so I put my sunglasses on and did my best to just get my clothes, books, electronics and food to my room.  Once there, I promptly lay in bed, played on the Internet and prepared for the next morning of testing....

Dealing with the "Improvement Society"

How much should I have to blend to fit in? This is a question I've been pondering over the last few weeks.  I love my job but recently I have been so worn out by the time I have arrived home that, as I mentioned in my last blog, I have had to adjust my schedule to make sure I don't burn out.

I realize that a big part of the reason I'm so tired is because I am more aware of my differences. I also am aware that others are not aware of my differences.  They don't understand when I don't get their jokes its because my brain is different.  They don't know that when I seem uninterested with small talk that it is because I am exhausted from trying to 'be normal.'

And with this awareness comes more goal setting.  I will take time to attend lunchons with my colleagues.  I will make a point to chat by the water cooler.  I will pay attention that I don't jump into a conversation at the wrong time and upset my supervisor.  All of this adds up and wears me down. All of this feels like a great deal of extra work.  All of this involves a great deal of guessing and second guessing.  Did I understand that conversation correctly?  Did I upset that person?  Should I ask them?  Should I leave it?

There is plenty to read on this topic.  Lots of Aspies and psychologists have written abut how we should all change to 'fit in' and 'be successful' in the workplace.  Part of me appreciates these books and part of me is a bit angry about all of this.  I appreciate that all Aspies need to do some work to fit into the workplace.  I know I've been doing this my entire life.  Without resources I developed a lot of very effective coping mechanisms so I would "seem" normal.  However it also makes me mad because I feel that our work places could be a bit more accepting of differences. 

I feel like I am required to make accommodations in both directions: for me and for others.  In other words, when I'm interacting with others I have to adjust my behavior to fit into their world but they don't have to adjust their world to fit into mine.  Obviously, the fact that few people IRL know my diagnosis is part of this but based on what I've been reading about disclosure it seems unlikely that would change even if I shared this information. Which leads me to the question...

How far to change is acceptable?  How far is too far?   How much of myself do I have to hide?  I have always had strong coping mechanisms.  I am in the minority among adults with AS.  I have meaningful, full-time employment.  So I have to have been doing a few things right.  Yet when I read books about AS and employment I see tons of things that I am supposed to change.  This "improvement society" I get.  Without a willingness to 'fit in' many Aspies will never find solid employment.

Yet I still wonder how far is too far? To do my job well enough to get good reviews from my boss requires that I implement my traditional learned coping mechanisms.  But to really completely 'fit in' requires that I take these lessons about small talk and eye contact and social communication to another level.  And this is the point where I really start to wonder.  Perhaps with practice this stuff will feel easier but I can't imagine it will feel any less fake with time.  Is the Autistic personality really so horrific that it needs to be hid?  Isn't it reasonable to expect neurotypicals to accept some neurodiversity?  Is it really going to hurt anyone if I don't make eye contact and I don't engage in as much small talk as others?

I don't think so.  So, while I continue to try to 'improve myself' I can't help but feel that I'm really just holding up this horrific argument that says that the Aspie me isn't good enough for society.  I feel that I'm supporting the argument that says I have to be normal.  And I feel I'm supporting a perspective that suggests that the rest of the world holds no responsibility in accepting neurodiversity.

Anxiety, Sleep and AS

Aspies are well established as having sleep issues.  My sleep issues have been numerous.   Until I learned about ASD, I didn't think I had sleep issues.  When others would point out that my sleep patters were strange, I'd ignore them.

When I started my adult working life, I would often come home from work and fall asleep immediately.  I'd sleep until the alarm went off the next morning.  After this went on for awhile, even the extra sleep wasn't enough to keep me healthy and I'd get sick. My co-workers thought I was crazy.  They sometimes had a nap after work but they couldn't sleep 15 hours in a row.

Prior to working, I'd never gotten sick while busy. In university, I'd be healthy all semester.  As soon as we went on holidays I'd get sick.  I slept a lot at university!

While young, I had the opposite problem.  In Grade 1, I regularly stayed up until 2 am and nothing my parents could do helped me fall asleep earlier.  Moreover, the next morning I was absolutely fine at school.

Through all of these sleep patterns,  I would wake myself up from holding my breath, breath strange and display other sleep disorder traits.

What I've realized recently is there is a reason for all of this.  When I don't self-soothe at work, spend a great deal of time trying to be social with colleagues and deal with sensory overload my body gets worn out.  By the time I get home I am so tired.  The energy it takes to get through my work day is the energy it takes others to get through their entire day.  When I do this day in and day out, eventually my body can't keep up and I get sick.

So I'm trying to be more conscientious about how I treat my body.  I'm choosing to only work extra hours in the second half of the week.  I'm trying to include more down time during the week.  I'm trying to balance CountryGuy's desire to do things (and mine for that matter) with my need for downtime on the weekend.  I'm trying to stay organized with my clothes ready the night before and a healthy lunch packed.  I'm trying to not expect perfection at home.  And I'm trying to include exercise in my week although this week that has been entirely unsuccessful.  I know that when I'm tired I don't have the energy to exercise but that if I do not exercise I will get more tired.  I'm trying not to be too upset that I haven't found the exercise balance yet.

Honestly, I'm not sure how to meet all my obligations without wanting to sleep all the time but my awareness of what is going on is helping. Now that I understand what is going on, I can work on trying to balance better.