When Life Becomes Complicated; Living With
Asperger’s Syndrome.
The photograph that sits on a shelf in his
little room in the assisted living community care facility is of a much younger
man. He sits alone on a huge rock
looking off at something in the distance.
He is/was my big (and only) brother. I’m the youngest of five children and nine
and a half years separate us.
As a little girl I watched him and
wondered about his ‘aloneness’. He had a
few close friends but no girlfriend (to my knowledge). Once he brought a girl home; Kathleen was her
name. It was to be a onetime only event.
(The closeness of an intimate relationship is not tolerable or fathomable for a
person with Aspergers.)
I felt sorry for him back then with four
sisters who hogged the airtime and were paired up to share bedrooms. He had a room of his own. During thunder and
lightning storms I would tip toe into his room, not only to give him some
company, but to listen to his stories of what caused thunder and
lightning. I thought he was brilliant.
He didn’t do well in school. He struggled through the grades. He was a loner even then so I expect he got
picked on and bullied a lot. One of my
sisters punched a boy out in grade school for teasing Walter. He was a pacifist so didn’t have the
instinct, desire, nor did he possess the social cues to defend himself.
My Mom told me stories of Walter as a
little boy. He was curious beyond
measure and active. Today they’d
probably label him as having ADHD. If
there was anything with gears, a motor or moving parts of any description he
had to take it apart to see how it worked. It was so surprise, when later as an
adult learner he became a brilliant mechanic.
He dropped out of school in junior high.
The social setting was too much for him.
My Dad operated a small mixed farm but
Walter wanted no part of that. I do
remember he had little time or patience for the farm animals. My father was disappointed in him for his
lack of interest and wasn’t shy about voicing it.
Walter’s passion for anything mechanical won over. He enrolled in a correspondence course for mechanics. He later went to a vocational school to earn his credentials. He was a proud man the night he graduated. We were all proud of him.
Socially, Walter was timid and reserved. He’d literally melt into the walls in large
gatherings. He eventually avoided them
entirely, coming up with reasons usually health related why he couldn’t attend.
I believed him as his anxiety level would ratchet up and he had to spend hours
in the bathroom with his ulcerative colitis (a condition that continued to
plague him) and which over time morphed into Crohn’s disease. At which point he
entered a Manor for palliative care. He remained there in his final days.
We didn’t understand him in our younger years or why he was
different. “We” …being our family and
others brave enough to inquire about his self-imposed seclusion from society.
It was many years later and Walter was already nearing his senior years when my
daughter, who during a University Master’s course in psychology determined what
Walter’s personality resembled. We were
discussing another relative and researching ‘Asperger’s Syndrome’. My shock in
the realization they could have been describing my brother was astounding. The
more I read, the more it became clear. Walter ‘got by’ and functioned somewhat
in his younger years, but fell through the cracks. They didn’t have a name for
it then. Without the Internet at my parent’s fingertips, research was
non-existent. A psychiatrist diagnosed him in the early years with schizophrenia - and Walter was medicated for same.
Walter could fix a diesel engine, but
couldn’t watch a movie without getting lost in the plot. He would rapidly lose
interest when everyday nuances escaped his understanding. So he watched cartoons or hockey and he listened to music on the radio (or on the music channel on the TV I gave him).
Walter traveled throughout Canada working
in the mines in Lab City, Sudbury and Flin Flon. He had no problem getting
these jobs. His problem was living alone ‘and away’ from the only support
network he knew; his parents.
When my Mom passed away, Walter was at her
bedside with the rest of the family. This was huge. It had a profound effect on
him. At the time he was living with her in the family home and I was never sure
whom was looking after whom. He returned to an empty house that night. And thus
began Walter’s downward spiral. He was in debt to his ears and it was glaringly
obvious he could no longer live in the home and take care of it or the
finances. It was a tough-love decision
to make but he had to move out. Before a month elapsed we moved him to a
senior’s apartment. Six years later,
living alone without the family support network, the isolation took its
toll. Walter was not functioning well
and once again the difficult decision was made to move him into an ‘assisted
living’ community. It worked well...until it didn't.
(It’s
in the later years when Asperger affected people eventually come apart. Life
becomes complicated and unpredictable and functioning in society becomes too
much for them to handle).
Walter was a kind and gentle soul. Only
under the influence of anti-depressant drugs or during detox of same did he
ever show signs of a completely different personality. Research notes that Aspergers symptoms and schizophrenia often overlap.
http://www.ncbi.nlm.nih.gov/pubmed/23065028
He had a fascination (more like an
obsession) for clocks. He owned dozens of all different shapes, sizes and
makes. If they weren’t perfectly synchronized, he’d take the offending culprit
apart and work his magic. He worked quietly and methodically, tinkering with
all the moving pieces. If said clock still didn’t work perfectly after such
surgical intervention, then it was discarded.
If Walter couldn’t fix it…then it couldn’t
be fixed!
He *stims. I noticed it only after
reading about it. I started taking note
of when he did this. His thumb, forefinger and middle finger work frantically
together like he was/is trying to rid his fingers of dirt. He ‘stims’ when he
is feeling insecure, nervous, upset or anxious.
His final days were ordinary and routine
filled. His only responsibility was to look after his own personal care. Everything else was provided. His small room gave
him comfort and privacy. Most times I found the door closed and he is sheltered
from prying eyes. It was his life and even if I can’t imagine existing like
that, I do understand it. Walter was finally happy and content in his little
insular world.
I once heard someone describe him as a
‘dreamer’. Maybe so. Maybe he did/does dream of a life that would be somewhat
normal in everyone’s eyes. His ‘normal’ however was to be alone, physically and
mentally.
He dreamed of winning the lottery and
buying a new car. The likelihood of either was far-fetched and I didn’t have
the heart to tell him that with either one comes responsibility.
I listened to his
dreams, smile and nod.
After 30 years give or take; trying my best during that time to give him the love and support he desperately needed, I find myself at a loss to describe how I felt when he passed away while I was out of the country. It was a mixture of loss, guilt, frustration and now I have to come to grips with moving on without those thoughts stealing my sleep. He would not want that. He was always so appreciative of everything I did for him – sometimes he wasn’t happy about situations I got him out of, but he was always happy to see me and told me he loved me on more than one occasion. For that I am grateful…grateful I was there for him when it mattered the most…to assist him in navigating life that was so confusing and scary for him. In the end I have to move on and accept the fact I wasn’t supposed to be with him in his final moments…I’m still not convinced.
Such is life.
Footnote:
Some signs and symptoms Walter presented
over the years (but not limited to):
- ·
Difficulty comprehending
implied meanings. (aspennj.org)
- ·
Preoccupied with only one
or few interests which he may be very knowledgeable about. (webmd.com).
- ·
Consuming interest in
arcane subjects (obsession with clocks).
- · Stimming*– self stimulation when the body is in sensory overload.
- ·
Difficulty reading or
interpreting social clues.
- ·
Sensitivity to
environment – loud noises, clothing and/or food textures and strong odors (i.e.
perfumed products).
Background:
Asperger’s syndrome: https://en.wikipedia.org/wiki/Asperger_syndrome
Named after the
Austrian pediatrician Hans Asperger in 1944 who studied and described children
in his practice who lacked nonverbal communication skills….
The exact cause of Aspergers is unknown…
The mainstay of management is behavorial
therapy focusing on specific deficits such as poor communication skills, obsessive or repetitive routines…
Globally Aspergers is estimated to affect
31 million people as of 2013.
