Personal Stories, Autism, OCD

Autism and the woven tapestry

Jackie, who blogs at Autisms love, is a disability advocate and was diagnosed as autistic 7 years ago. Jackie's wish is that one day, people won't think about stats and a long list of traits when they hear about autism. Instead, they will think about people in their community. For me, you don't get a better definition of Neurodiversity than that.

This is her story.

Tell me a bit about yourself and your life

Life came with a host of unanswered questions and a staunch acceptance of my uniqueness both that which is obvious as well as what’s not.

I’m a survivor of severe mental, physical, emotional and sexual abuse. I only saw the severity of it once therapy began. I had few points of comparison other than tv, which is not a true comparison. It’s not so much that I thought everyone had the same experience. I didn’t give much thought to the experience of others on much of anything except the occasional questioning of the process or a referenced lack of interest for what most thought to be of common occurrence (typical).

Having a strong connection to my spiritual beliefs, logic and an unusual ability to reason at an early age were the catalysts for my survival. I had the good fortune to realise what was happening to me was not my fault. I was seven (7) when I came to this conclusion. Some consider it as baffling that I was able to come to such a conclusion at an early age. To me, it was completely logical.

Later I would find the study of human behaviour as a favourite pastime. I was intrigued by the level of emotion in general communications when I thought fact should have been the lead. And if a conversation were to be fact-driven, I could almost predict a level of misinterpretation to be rendered due to the listener's inability to comprehend what I am saying as opposed to what they are thinking.  

Its no wonder the level of miscommunication with all of the nuances, variables, variations of variables, inclinations, intonations, exaggerations, predictors, inhibitors, along with poor word selection (not meaning what they say or saying what they mean) which seemingly goes vastly unrecognised.

I struggled with the concept of regularly being misunderstood when I took the time to consider my words and spoke with purpose and direction

I struggled with the concept of regularly being misunderstood when I took the time to consider my words and spoke with purpose and direction, to which the insult of getting disjointed responses was the usual outcome.

When were you diagnosed as autistic?

I was diagnosed with Asperger’s Disorder at the age of 46, almost seven years ago.

What impact did your diagnosis have on you?

My diagnosis helped to clarify a few things such as my uniqueness, in particular, my thought process. It also explained the unique relationship I have with my son who is also on the autism spectrum. People often noted that I have an uncanny ability to understand my son in ways not commonly seen with other autism parents/families.

Are you employed?

I am currently self-employed. Before becoming self-employed, I worked at the School of Nursing at one of the local universities. I started off as an Administrative Assistant which I enjoyed immensely.

The work itself was fun and challenging, but the work conditions were what I found most favourable. There were several of us. Work assignments were centrally located. We would have the ability to select as much or as little work depending on the demand and time required for each assignment. I enjoyed taking work assignments and completing them at a level beyond expectation.

After having my son, I needed to work flexible hours primarily from home. That’s when I started working on research projects, human subjects research. Like with any job, I always love to start from scratch meaning I love to start at the very bottom and work my way up, systematically addressing multi-level processes in the workplace. Most of all, I got to put into practice my favorite pastime, the study of human behavior, not just the behavior of others but my own as an emerging adult more independent than ever and a new mom.

Work was the one part of my life that embodied the most positive times of my life. It was the closest experience I had to freedom while my parents were alive.

What I tend to flourish in or what I’m most accustomed to is a structured situation that offers the flexibility I need to develop a process allowing my ability to shine

I enjoy being an entrepreneur. I get the chance to do all of the things I love which are writing, many other forms of art, and generally being wildly creative in most everything I do. I also have the opportunity to advocate for people having disabilities which takes up much of my time. Admittedly, it is much more difficult to be an entrepreneur/advocate because I determine the structure which I’m not always good at doing.

What I tend to flourish in or what I’m most accustomed to is a structured situation that offers the flexibility I need to develop a process allowing my ability to shine. I haven’t quite figured out how to do that for myself yet. It’s a constant work in progress.

What is work like?

Work is exciting, taxing, challenging, growth stimulating, exhausting, and necessary. The most challenging aspect of what I do is speaking in public. It’s one thing to do a thing once because I feel I can do almost anything well once. When it becomes a thing that I have to do on a regular basis, then my mind starts reeling as I try to develop the process it takes for me to do well through anticipatory struggles better known as anxiety.

Often with advocacy are many occasions for social events which are challenging for me because I have social phobias. I’ve also struggled with agoraphobia, PTSD, and OCD. There are times when I cannot leave my home. I’ve only just recently started talking about these things.

So far I’ve met some truly awesome people who are helpful and supportive even if they don’t fully understand. On the flipside, there is a stigma that I have to face. Not only do I have to deal with the stigma of being open about my Asperger’s, but also the stigma of being open about mental illness. So now I am working to raise awareness of what it is to have a mental health condition and mental illness.

Ultimately, I would like to see more cross training/education for mental health professionals in all genres of mental health conditions especially the co-morbidity of intellectual disability, autism, and mental illness.  I would also like to see the acknowledgment, training/education of co-morbidity existing between TBI (Traumatic Brain Injury) and mental illness.

Do you use any strategies to help you in the work place?

Yes. First of all, I pray a lot about everything, and then I work on my issues by developing a process.

To develop a process, I go over all the steps and begin working on getting better with each step. Right now I’m working on public speaking skills. I have to determine what steps I need to complete the task well. Once I determine all the step needed, I go to work.

Sometimes I can develop a process quickly, and other times it takes time, so I have to learn to be patient with myself through the entire process. It has been very difficult for me so far, but I’m determined to succeed.

Does your boss/colleagues know you are autistic?

In the past no, because I did not know that I was autistic at the time. Now they know. There are times I regret sharing my diagnosis, but for the most part, it has been good.

How supportive are they of you?

The people who are supportive are very supportive. They can tell when my anxiety is up and it helps me so much when they ask if I’m okay. They try to help me as much as they can. I most appreciate it when they ask me questions because that lets me now they genuinely want to learn.

What should employers consider with autistic employees ?

Listen to us, learn what we can do and what we need to be productive members of the workforce and our communities. Understand that we want to achieve our goals and dreams, and be a positive part of the bigger picture too.

What do you want for a Neurodiverse world?

I think the autism community has a great deal to offer if the world is willing to listen.

I’d love to live in a world where common and unique traits of autism are part of the woven tapestry of communication and socialisation. I’d like to be part of a world that listens to people on the autism spectrum no matter our language without bias.

I’d love to live in a world where common and unique traits of autism are part of the woven tapestry of communication and socialisation

It would be refreshing to speak with someone about what it’s like to be on the spectrum without dealing with comparisons and speculations.

Hopefully, one day when people hear about autism, they won’t think about statistics or some long list of traits, they’ll think about friends, family, lovers, neighbours, doctors, teachers, first responders, lawyers, politicians, people who are part of their community just like everyone else.

One day…

If you are Neurodivergent (autistic, dyslexic, dyspraxic, bipolar, Tourettes, OCD, ADHD, ADD, or other) and are interested in becoming a contributor to Me.Decoded then please get in touch.

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About Jackie Pilgrim

Jackie(advocate, public speaker, entrepreneur) founded Autism’s Love: The Pilgrimage, loves being a mom & bringing creativity into life, especially mental wellness. #ActuallyAutistic #SurvivorofLife