Autism Acceptance Day

About ten years ago, my husband and I had traveled to Ohio for a wedding while leaving our son (who was one at the time) with his sister and her boyfriend at our home in Lansing.   It was a rare opportunity for some adult time, literally the first time since he was born, and we were excited for our weekend getaway.  After driving almost four hours to where the ceremony was to be held, we found the white church with a white picket fence on a dirt road in the middle of no where a la horror movie style. There were no hills or trees to run behind if a murderer was chasing you, it was all flat as far as you could see.  We found our seats on the bride's side and I anxiously waited to see my friends, two of which were bridesmaids, to walk down the aisle.  The music began and I turned to see the wedding party walking down the aisle.  There was a lot of purple.  There was a lot of eyeshadow.  I was not impressed. 

Normally in this situation you would not say anything.  But not me.  I was a rude, obnoxious, and conceited person and I had to ask why all the purple?  I told them how awful it looked.  I tried to convince them I was right and they were wrong.  I don't know how I had any friends.  Ever.  This was the single most embarrassing thing I've ever done and to this day I still don't know how I kept those friends. 

When I was diagnosed at 27 with Asperger's syndrome (a form of autism) and two years later found ASPPIRE, who helped me with the social coaching I badly needed, I understood what happened.  I was always too proud to admit that I had a problem but today I can admit that I struggle with theory of mind.  Theory of mind is the ability to attribute mental states — beliefs, intents, desires, pretending, knowledge, etc. — to oneself and others and to understand that others have beliefs, desires, intentions, and perspectives that are different from one's own.  Just knowing that, I have been able to have a new perspective and proactively stop myself from saying things that are rude and obnoxious...most of the time.  I did say I still struggle, after all. 

Now, I just want to take a moment and thank those who have helped me get this far in life.

First and foremost ASPPIRE.  For without them I wouldn't have the rest of this list.  It's truly AMAZING what knowledge can do to change your life.

My friends in Bay City, who put up with a lot of my crap for a very long time.  I was rude and selfish and you still stayed by my side.  I'm sure if I stayed on the path that I was on I would probably have lost you by now.  I probably would not have had the courage to do half of what I have done without you:  Especially you Stacey Bourcier, who I still talk to every day!

My church family at Holt Lutheran.  Especially Kerri Henry and Ilona Harns who were two of my first friends and encouraged me to attend church and join organizations like the LWML and the PTO.

My friends with autism and/or social anxiety I have met both through and outside of ASPPIRE on my own.  Way too many to name, and I don't want to out you on facebook if you don't want people knowing you have those problems. 

The school and staff at Holt Lutheran who have made parenting with autism so much easier for me.  I don't think without their support and constant communication I could as effectively support my children.  You are their mom for 40 hours a week. 

My own family who have slowly come around to accept who I am and why I do what I do.  It's not easy admitting to others who would call this invisible disorder an excuse or scapegoat. 

My friends who constantly support me to be a better self:  Stacey, Kady, and Erin.  You guys are the best!  You don't know what your friendships mean. 

Patience

I lived nineteen years with a person I never knew.  When I was sixteen (and he was 29) most of our interactions consisted of both of our eyes fixed on the green broken ceramic tiles of the floor as we would pass each other in the hall.  He would go in his room and shut the door and I would go through the adjoining kitchen with the same broken tiles and head out the door to school or work or wherever. 

One time I was playing across the street with a girl my age who was visiting her cousins who lived there which also happened to be one of Kevin's friends.  We were playing in the garage when he past us with about ten of his friends and didn't even look at me.  He was probably a senior in high school, I was in kindergarten.  He told my mom to tell me he wanted me to never go back there.

When I was about thirteen I was eating cereal at the kitchen table and he came in and stood by the window waiting for a ride.  I was startled when I randomly glanced up to find him staring at me with a sneer on his face.  I had been chewing with my mouth open.  I froze and stared back down at my cereal until he left.  The loud force of my cry as I burst into sudden tears sent my mom running into the kitchen.  For someone who didn't want to be a part of my life, for my entire life, that was too much to handle.

I still don't talk to my brother.  When I met his girlfriend at a family funeral I walked up to her and introduced myself.  You must be Kevin's girlfriend?  I'm his sister.  They had been dating three years.  I pointed to her finger, what's that?  An engagement ring.  I added her on facebook hoping to have some sort of insight into his life.  We remained friends there for about a year and a half...until I started coming out of the closet more about autism and other medical issues I'm trying to sort out.

I get the feeling that very few people in my family believe me.  Between my aunt blaming me for not taking care of my parents who live two hours away, and my uncle becoming angry because I complained that I could not identify and clean this obnoxious smell at my parents house (hello!  sensory processing disorder!) I give up on my family. I don't have the patience if they don't have the patience.  I'll just go on doing what I'm doing, trying to get to where I need to be.  It would be nice to have the support from them but I have my church family my mom's family and a handful from my dad's.

I did not ask for this.  I did not ask to be a failure.  I did not ask to live in a trailor that is falling apart and not work full time so that we could live in a decent house and have a decent life and help my parents by giving them money and helping them clean their apartment more.  I get absolutely no form of government assistance for this disability and I am TRYING to be a productive member of society.  I can't even pay my student loans back for a degree I barely use.  I am trying so hard.  If someone cannot understand that I have anxiety and sometimes cannot drive to Bay City or that I cannot handle certain sensory issues and it is interfering with me giving my parents what they need and deserve.  I am doing everything I can to change all this.  YOU don't know what this is like so stop judging me. 

A Little Goes a Long Way

All of the desks formed an arc around the room, facing a wooden lecturn in the center.  This room had only one exit, a door in the corner, that all the desks faced away from.  The walls were blank with no windows, other than those that separated the teacher's office from the room.  Each day for a month I sat in that desk, staring at the podium, feeling sick.  I observed the teacher each day leaning casually on the lecturn as he spoke to class.  He waved his hands animatedly as he spoke to us, telling us crazy and inappropriate stories as the smell of his blueberry candle permeated the room.  Eventually it would be me standing in that spot....this was speech class. 

I had never NEVER spoke in front of a class.  I never NEVER raised my hand to answer a question.  I always looked down, always occupied myself taking notes and trying not to be noticed.  I never made eye contact with the teacher, because they took that to mean that you wanted to answer a question.

I didn't know what I was going to do so I signed up for the latest slot I could.  As I watched the others go before me, I was in complete denial I was going to have to do this.  I considered transferring schools.  I could get up at 6 and get on a different bus and go somewhere, anywhere else.  Mother wasn't on board with this idea and I had to come up with something quickly.

A few days before my imminent demise, it was another student Sara's turn.  She stood behind the lecturn and began unpacking a bag placing things on a table next to the lecturn.  She took out ziplock bags of vegetables, a bottle of water and several bowls.  She took apart one of the bowls that had a strainer component, added the lettuce and water; and spun the device around with a crank.  She said the device was called a salad spinner.  My attention was entirely on that spinning object the entire time.  She was a genius.  She did a 'demonstrational speech' by making a salad and speaking as we watched her spin the lettuce dry.  I realized I could avoid all of that anxiety inducing eye contact simply by making them watch my hands as she was doing now.

A few days later, it was my turn.  I had to stand behind that old scuffed-up podium, with 20 sets of eyes upon me.   Before I could get more than a few words out, I nervously fumbled at the container to get it open and sent it flying across the room.  It hit the wall and fell to the floor.  The world stopped. 

From that day on, whenever I had to do any public speaking this memory immediately surfaced.   Each and every time.  I stuttered through everything I had to present with burning red cheeks trying to push the image away from my thoughts.

Yesterday I stood up and spoke about my life, autism, and treatments.  I didn't stutter once, my face was not warm and I forgot about the torturous high school speech class until I sat down to write this blog.

A little calming oil goes a long way.

Slave to the Meds

Every day was the same.  I was suffering socially, physically, mentally...and it was so overwhelming I didn't know where to begin dealing with it.  For four years I was only functional and out of bed about 7 hours a day, and had at most one or two good/normal days a month.  But...I was making eye contact.  And I was making friends!  I was able to keep calm and not let anger color my words that normally kept people away.  People weren't afraid of me and enjoyed being around me.  But as each Summer came, I could no longer sleep my life away.  Each Summer, I would try to go off the meds.  Each Summer I failed. 
I eventually picked up the Temple Grandin book 'The Way I See It' and read her chapters on autism treatments.  She eventually came to the conclusion that a duality of treatments involving traditional and alternative medicines seemed to give the best results. 
It's been a while since I've blogged.  I spent the year changing meds and discovering the potential of essential oils.  I'm doing better now, but I still have more goals to reach.  Full-time employment is up next, wish me luck.

I think you have Asperger's.

My sons were aged one and three when I started to realize something wasn't normal with me.  I was angry and nauseous almost all the time.  I tried to convince the doctor I was pregnant again (even though I had a tubal ligation during the same surgery for which I gave birth to my younger son and that was not possible).  Many tests and appointments later I had the names and phone numbers for psychologists I was never going to call.  I was too proud to call and to proud too acknowledge how intensely the anger suddenly flashed across me whenever my kids touched me.   I thought it was likely postpartum depression and would eventually pass.  As time went on, it took me longer and longer to calm down after each time I felt angry.  It was not getting better.  I decided to make the call when I had to start locking myself in a room to prevent them from touching me.  I told him why I was calling and my story detailing everything I was trying to ignore, and he replied, "I think you have Asperger's syndrome". 
Knowing you have something does not instantly make your life better, but it helps.  Sometime after my older son began attending preschool.  I was lost yet again trying to navigate the social demands of school and the parents of the other children.  I knew I needed more than just the medicine the psychologist gave me, I needed help knowing what to say to these people.  Through local resources, I found ASPPIRE and began taking social coaching classes in 2009 (about two years after I learned about my diagnosis).  After having not one friend and living in the same city for ten years, I made friends.  I wasn't the awkward woman standing in the hallway waiting to pickup my son while avoiding eye contact with everyone and staring at the wall.  I was able to make friends both inside and outside of my son's school.   I even joined a few different organizations to keep me socially busy so that I could continue to grow and succeed.
When I look back over my life, I realize how miserable and alone I was for many, many years.  If I had never found ASPPIRE I would still be in that dark place, struggling against myself.  Struggling just to function.  ASPPIRE taught me what to say, how to say it, how to deal with the anxieties I was too proud to admit I had, and so much more.  I have grown so much through the program I want to help others do the same.

The Art of Avoiding People

I got off the bus and walked down the sidewalk to the blonde-colored brick building where I attended Junior High.  Within the doors was the cafeteria where the students waited for the first bell that allowed them to go into the halls and to their lockers.  The floors were white formica squares, I stared at them as I walked past the rows of pale colored rectangular tables to the end of the cafeteria where my friends sat at the first of two round tables right inside the other set of doors leading to the halls.  When I was within a few feet of the table everyone stood up almost simultaneously, swung their backpacks on their shoulders and walked away.  I quickly lifted my gaze from the floor and looked around the room to see the rest of the students were still in their own worlds at the long tables behind me.  I stood there several moments watching them, then sat down at the table alone. 

Hillary, the tall girl with red hair and freckles, had decided this new game would be very entertaining.  She arranged for everyone to ignore me, all day long.  Her influence spread to every facet of school, including classes.  It luckily didn’t last long, but I remember how it felt to be so utterly alone.  That was the first time I considered killing myself.  That’s what bullying does.

Bullying doesn’t just end in junior high.  It follows you, and so do those thoughts you had in that junior high lunchroom as you watched your friends walk away.  Everything that matters to you can just get up and walk away at any moment, and sometimes you just relive it. 

Fast forward 20 years.

I walked through the doorway into the reception hall, greeted by dark wooden paneled walls and lights emanating from the corner of the dance floor.  The wedding party table is on the dance floor along the back wall.  That’s where Dave, my husband, will be seated.  It was his sister's wedding.  Long white tables lined the rest of the room, surrounding the dance floor.  I glance to my right and I can see Dave’s mom is seated at the first table closest door, surrounded by her family.  Her back is to me.  Her back was to me after the wedding too.  I also see there are no seats left at this table. 

I have a date, my friend from high school, someone to sit with.  She was invited shortly after the lastest fight erupted between my mother-in-law and I which I assumed would blow over as it always does where she pretends it never happened (and pretends she never told me she never wanted to see me again).  My friend and I both know she was invited because I wouldn’t be welcome sitting with a majority of the family.  She was nice enough to come anyway, maybe because she felt protective of me, or sorry for me.  Nonetheless I did not have to not have to walk into the lion's den alone.  Her and I move further into the room and pick seats near some of my father-in-law’s family who is also not seated at the family table.  They left around 7 PM.  My friend and I were on our own, no one to talk to but each other.  I knew others but they pretended to not know me, backs turned.

I could tell my friend was uncomfortable.  I was uncomfortable.  The entire family table chattered amongst themselves and we just watched them from two tables away.  Every time I came near or even looked toward my mother-in-law, she turned her back to me.  We left the room and moved seats several times.  We left the wedding twice.  When my husband’s wedding party duties were over, we joined him outside and stayed there. 

My kids eventually danced themselves into a coma, so we left.  When we got to her house I hysterically cried for a while.  I’ve never been so publicly embarrassed. 

Since the wedding in August, I constantly worried about how holidays would go.  I’ve avoided almost everyone simply because I have so much anxiety about socializing I can’t handle doing anything.  I’ve missed important things.  I missed seeing people on Thanksgiving, we stayed home doing nothing.  When I think of holidays I become very anxious worrying if I will be continue to be shunned or wondering if I will say the wrong thing. 

I feel so anxious thinking about Christmas you would think the day was so close upon me it might be tomorrow.  I hate feeling this way.

More Than You Think You Are

    So I have worked for a nonprofit business who provides social coaching to adults on the autism spectrum and/or have cognitive impairments.  Basically anyone socially awkward, like I used to be and I still am sometimes.  I actually took the class for three semesters; I'm the success story they use. 
    I love it.  I feel respected and appreciated...two things I have never felt working anywhere.  I push myself very hard too....I conduct social outings and host a Friday night social hour for everyone in the program.  During the summer I bump the social nights up to twice a week with a bowling league.  I feel like I have a lot of friends and have an impact on others' lives.  But I also hate it.  It's an obligation where if I'm not feeling up to socializing, I still have to do it.  Kind of like being a parent and all the obligations that go with it-moms don't get sick days and neither do social mentors.  Luckily I've been able to work through my anxiety and have never felt like a failure after the outings.  I'm not infallible though, and sometimes it hurts to realize that.
    One of the days this past week when I picked my kids up from school, some other parents were at the playground.  I haven't always felt respected in parent circles...not only because I'm autistic and sometimes awkward, but also because I am overweight.  Walking up to a group of skinny parents, one of which is a public figure who sometimes talks about fitness and diet, made me very nervous.  I've been avoiding a lot of contact with this particular group because I tend to receive a lot of unwarranted advice about my weight.  It seems people collate obesity with lack of intelligence.  Luckily, the rehearsed quippy lines gained some laughs and the conversation didn't last long enough to touch on any uncomfortable subjects because they had to leave. 
   Yesterday I saw one set of parents from the playground group at a birthday party which ended up running over by about an hour.  I was really hoping to execute an in and out maneuver at pick up but ended up waiting outside the party with them and my other son.  The last thing I wanted was to socialize with anyone, I was sooo not mentally prepared for it.  The father was the fitness guru I had been intimidated about and the mother was very social and very popular with the other parents at school.  I had been building some repertoire with the mother over the past year, volunteering at the kids' school where she also had been working for the five years we've gone there.  She talked me into playing glow golf as we waited.  I hate golf but she was very persuasive and charismatic and of course Eli wanted to do it as well.  The first ten minutes were incredibly awkward but by the end things were going a lot more smoothly.  I was able to engage in a lot of reciprocal conversation and even felt like we could all be friends.  I was shocked when she told me she thought I was outgoing.  I couldn't even remember what we were talking about or how that came up or what happened after that.  This person who I had been admiring for five years and even modeling a bit when socializing thought I was outgoing. 
   Put yourself out there.  No matter how awkward you feel.  Ten  minutes of torture may yield you no more awkwardness.  You might realize people aren't noticing what you think is as obvious as words written on your forehead.  When you think people regard you as 'less than' you will be surprised to know they think exactly the opposite.  You are 'more than' you think you are.