Tuesday April 15 was "D-Day" for me. It was the day I had been waiting for. For seven painful, confusing and often depressing years I had been searching for answers to explain my constant fatigue, irritability and pain. Knowing what I know now, I see that I had been waiting for this day my whole life.
The answer that would explain my entire life came on April 15, 2014. I had been searching for a diagnosis for the past 6 years that would tell me what all the previous doctors did not. I had been suffering from a variety of what I thought were new symptoms. It turns out that they were symptoms I had had my whole life but they became more pronounced over the recent years due to overwhelming stress in my life. My husband and I had experienced a host of stressful situations in a short time including the birth of our son, severe illnesses of parents, separation of loved ones, loss of a job and more.
My diagnosis came from one of the most respected and credentialed Doctors in his field. I had sought him out after I had stumbled upon a list of symptoms and characteristics that fit like a glove a few months prior, and in a short time, had some appointments scheduled with him. He confirmed what I had begun to suspect: I have Asperger's Syndrome.
Asperger's Syndrome or High Functioning Autism... I know, right? "There is NO way I have Autism." was my first thought when I stumbled upon the list of characteristic and traits a few months ago. But after a few days of research I was sure that I was being described to a tee on those lengthy pages. My family and a few very close friends also confirmed that in light of the symptoms and characteristics, Aspergers seemed likely.
People on the Autism Spectrum display common characteristics including lack of understanding in social situations, sensory issues and intense focus on a few areas of special interest to name just a few. These three areas explain my whole life. There is not one day that I have lived that doesn't include one of these three (and sometimes all) of these characteristics.
When I received my official diagnosis from the Doctor on April 15, it wasn't as if I was shocked to find out
that I wasn't like other people - I had certainly known that about
myself my whole life. Rather, it was a huge relief to find out why I am not like other people, and it brings me to tears realizing that it isn't because I am a failure or a freak.
What is Asperger's Syndrome? Aspergers is a Neurological disorder that
is characterized by higher than average intellectual ability coupled
with impaired social skills and restrictive, repetitive patterns of
interest and activities. That's the dictionary definition. So what does it look like in my life?
Aspergers is also appropriately known as "Other Planet/Other World
Syndrome". This explains how it feels to live as an "Aspie". There is a constant feeling of being alienated and out of place in ones surroundings, amongst friends, family and the world.
Autism is a very wide spectrum, so it can look very different for each person. The saying is true: "If you have seen one person with Autism, you have seen one person with Autism." That being said, there are some characteristics that are common amongst us. One of them is Social Impairment.
We on the Spectrum never got the memo about social interaction. When everyone else was instinctively picking up on social cues when they were 5, we missed them entirely. Interactions that come naturally to others don't come naturally
to me. I may
look like I am functioning fine socially to you, but I have had 35+
years of practicing my "performance". During a social exchange I practice an invisible repertoire in my mind to keep up appearances. I realized the need for this repertoire as my innate lack of social understanding resulted in feelings of exclusion and alienation at an early age. This feeling never goes away for very long and so I find that following the repertoire while in the midst of an interaction helps me to be accepted. Maintaining proper eye contact, nodding to show understanding, appropriate facial expressions, trying to figure out when to talk, when not to talk and most importantly, remembering to breathe, are all things that I am intent on during a conversation with you. When I go to fill the car with gas or to the grocery
I am very much aware of all of my actions, the expression on my face,
my mind is racing with a million things, making sure I am doing what I have seen to be appropriate because the pain of exclusion threatens me. The amount of energy expended during social outings causes me to come
away exhausted and sometimes needing days of recovery time. Even some non-social events are exhausting due to sensory overload. At 41 I think I have my "performance" down and probably seem pretty normal during most interactions.
That being said, I still make mistakes. And
if you know me well, I sometimes let my guard down around you. My husband knows me well. I feel more secure with him and I don't hide all my quirks when I am at home. I thought
a funny name for this blog would be
"Looks-Normal-But-Ask-My-Husband-What-A-Freak-I-Am!" Seriously though, I can't even begin to say enough about what a kind, patient man I am blessed to be married to. I am so thankful for him.
You may wonder why I hadn't thought to seek out help for these social anxieties before. The answer to that is I had never realized that what I was experiencing wasn't normal. The awkwardness and feelings of loneliness and exclusion were all I had ever known. From the time I was old enough to have social encounters this has been my experience. When I was a toddler I often overheard my Mother tell people that I was "shy". I knew that I preferred to play alone rather than with other kids and that other people made me feel uncomfortable. When I was older the labels "introvert" and "sensitive" and "insecure" or "low self-esteem" were put on me by counsellors and as I got older I believed that what I felt was due to scars from things in my past or personality traits. You see I have always thought that other people experienced life much the same way that I do. I had no idea that I was different from someone who was "shy" or an "introvert" or "sensitive".
Another aspect of High-Functioning Autism is Sensory Processing Disorder. SPD is a condition that exists when sensory signals don't get translated appropriately in the brain. It can be a sort of neurological
"traffic jam" that prevents certain parts of the brain from receiving
the information needed to interpret sensory information correctly. This can look very different for people on the spectrum. For example, there are Sensory Seekers and their opposite; Sensory Avoiders. Sensory Avoiders like myself receive an overload of sensory information which causes overstimulation. For myself, this overstimuation occurs in the areas of sight, sound, smell and touch. I find that the more stress in my life, the worse my symptoms of SPD will be. I am sensitive to loud noises (motorbikes and the new Dyson hand-dryers in public bathrooms are the worst), long exposure to artificial lighting, chemical scents including perfume and air fresheners, and unexpected touch, especially from a stranger and close proximity to strangers to name just a few. When I am overstimulated I feel like I need to escape the circumstances immediately. This isn't always possible or socially acceptable, and so often I am forced to remain in the situation. For me this results in irritability and sometimes exhaustion depending on the situation.
A third aspect people on the Autism Spectrum have in common is areas of special interest. People on the spectrum become obsessed with particular topics. You may have heard about kids who know every kind of dinosaur and how to spell the names backwards. They are happy to go on talking for hours and hours at a time about them. Yes, I can relate to this as well. For me it isn't dinosaurs though. Although that would seem to be kind of endearing wouldn't it? A 41 year old obsessed with dinosaurs? No, my interests are socially acceptable which has caused me to be able to blend in with others around me. The difference with me is that I want to talk about these topics for hours and hours. And then I want to talk about them tomorrow. And the next day. You get the picture. I enjoy reading about them for hours and hours and hours and hours. I love researching these interests and as a result I have amassed a great deal of knowledge on certain subjects. In the past some of these interests have been Theology, birds, healthy diets, Naturopathic medicine and treatments and my newest obsession (that is most appropriate) is Autism Spectrum Disorder. It is hard to describe the kind of satisfaction Aspies get from having knowledge of and being engaged in a conversation about our particular area of interest. It is a feeling of excitement and inclusion. I suppose it makes us feel like we fit in and have a purpose. Which can satisfy the exclusion we feel often to the very depths of our souls - for a brief moment or two.
I don't know the words to speak strongly enough about the intense loneliness and despair that living with Aspergers presents. There seems to be a myth that people with Aspergers are socially unaware and they have no idea how they come across to others. They just go through life having no clue how different they seem and it doesn't bother them. In my experience this isn't true. I did a survey on one of the Aspergers sites I belong to and 98 percent of people with Aspergers that I polled said they have never felt like they belonged or fit in. About 89 percent of them said that this exclusion grieved them deeply. I know that because social interaction feels so foreign to us we have a very difficult time reaching out to friends and/or family and struggle to keep friendships going. I have over 200 friends on Facebook and there is not one person (other than my husband) that I have regular friendly interaction with on a weekly basis. Not even every 2 weeks. I find myself craving social interaction immensely but I am socially isolated. I know that I was created for fellowship with others and I grieve this deeply. Even though this blog is titled "People are my Kryptonite" I still feel an insatiable need to be connected with people - which makes me think that this is an impossible dichotomy. I am just at the beginning of my journey armed with this new knowledge about myself and so I have yet to understand how this will all work. But I am pretty sure it begins somehow with community.
on April 15 has given me a new found purpose and it feels hopeful. I
feel passionate about educating myself and others as to what it feels
like to live on the Spectrum. I am
not a failure or a freak even though I feel like one. I am a successful person with Aspergers. I
have hopes and dreams and aspirations that haven't been realized and I am
more self-aware than I ever have been. This self-awareness is the first
step in being able to re-frame and rebuild my life around who I really
am. It does not provide an excuse for me but rather increases
opportunities for growth. By focusing on my areas of strength instead of
being paralyzed by my weaknesses I hope to achieve a measure of success
and fulfillment. But now I won't be measuring these things according to the world.
* If you would like to have me come and do a workshop or seminar on Aspergers, Special Diets for Special Needs, Sensory Processing Disorder or Executive Function Disability at
your work/school/church etc. please contact me through my Facebook page: Confessions of an Autistic Mom