PROMOTING THE AUTISTIC VOICE

 
 

Today is Valentine’s Day, a perfect day for Aspies everywhere to give themselves the gift of loving acceptance. 

Today is the day to discover that autists are making waves, promoting our Autistic voices by demanding that research begin to focus on the positive instead of the negative features of autism.  It is a day to recognize those individuals and organizations who are working toward changing the way that research into autism is conducted.

They are people like Vivian Ly[i], whose slogan is Nothing About Us Without Us.

Ly says that Applied Behavioural Analysis can be compared to autistic masking behaviours.  Her position is that people with autism need to be accepted as they are, and not programmed to fit into more societally acceptable ‘normal’ slots.  She is also outraged by researchers and organizations that attempt to speak for autistics.  We have voices.  We can speak for ourselves, Ly states.

Another autist, Kieran Rose, has along with Amy Pearson published a paper on why autists camouflage their behavior, and how harmful to the psyche this can be.  Published in the academic journal, Autism in Adulthood, Kieran’s article on masking analysis is free to read at the URL given below[ii].  He also has a blog, The Autistic Advocate, if you’d like to check it out.

Michelle Dawson[iii] is an autistic person who has fought both legal and academic battles for the rights of autistic people.  In spite of never attending university as a student, she has presented to and influenced decisions in the Supreme Court of Canada, worked with autism research teams at the University of Montreal and is cited in a considerable number of academic papers.  She has also received the Ordre de Montreal as a result of her consistent voice in advocating for the rights of autistic people. 

Dawson describes autism as a neurological difference in development, one which determines how we process information.  This atypical brain-routing results in behaviours and thinking that is different from the ‘neurotypical’.  Dawson presents these differences as strengths rather than as a negative stereotype.[iv]

It may also be helpful to note that online communities for Autists by Autists have been springing up all over. In Ontario, Canada, A4A (Autists for Autists).  In Western Canada, Autists United, and the Autism CRC Co-operative Research Centre whose vision is to see autists empowered in their diverse strengths and interests.

So look on the bright side. The world’s perception of those of us on the spectrum is slowly changing.  Thanks to the persistent lobbying of our fellow autists in promoting the recognition of our unique neurological processes, we are beginning to embrace who we are and how we process the world. More and more people, including those who are positioned in such a way that they can influence societal changes in attitude, understand and accept our condition.

They are fighting for us to be accepted as we are.

 That, surely is cause for a tremendous Valentine’s Day celebration!


[i] https://vancouversun.com/news/local-news/autistic-people-march-for-and-against-walk-for-autism-in-richmond

[ii] A critical analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice.

[iii] https://ville.montreal.qc.ca/ordre/en/michelle-dawson

[iv] the autism crisis: science & ethics in the era of autism advocacy : What’s autism anyway?

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On Being a Writer with Autism

It’s a problem.  Not just having Asperger’s or, as the more politically and diagnostically correct phrasing goes, being on the spectrum.  But also not being diagnosed.

I know I am autistic.  My oldest daughter and two of my grandsons have been diagnosed as being on the Spectrum and we process information in a similar fashion — although often arriving at very different conclusions. The way we observe and process information is generally considered to be ‘unusual’.

Being different can bring a sense of isolation.  For me, as a child, it began at home. 

None of my family questioned the things I questioned, or perceived certain aspects of home and the society in which we lived, in the way I viewed and interpreted them.  It made both myself, and my family think of me as ‘other’.  I lived there, but I was different.  Wrong.  I didn’t fit in. And I found myself in a very similar situation in school. 

I honestly would not be able to tell you how I was different from the other kids.  That was a secret only they knew. 

Not knowing how I was different made it impossible to adjust my behaviour to conform.

I loved my mother, but in my opinion she lived a very dull, uninteresting life and I was determined to not grow up to live a similar one.  On reflection, my mother faced a great many challenges.  Raising a family and working outside of the home in the 1950’s and 1960’s when women were bombarded with media messages that their place was at home, could not have been easy for her. But I was too young and too involved with my own dilemmas to truly understand hers.

Then, when I was eleven, a neighbour began to notice me.  An adult, he was a close family friend.  My dad, my grandmother and my aunts all liked him.  As he was frequently in our house, he found me an easy target for his perversion.  Familiar with our household routines, he could easily determine when I would be home alone and thus vulnerable.

My autism contributed to my sense of helplessness in dealing with this neighbour’s twisted mind. 

The isolation I felt from my parents, the sense of being ‘wrong’ and not knowing how I was wrong.  The strict rule in our house that adults were always to be obeyed … I couldn’t sort out how I was supposed to alert others to this situation.

When I made tentative inroads into conversations about this problem, as with every other serious conversation I tried to have with adults, I was shut out. 

It was the 1950’s.  No one wanted to hear ‘that kind of thing’.

And, no-one knew about Autism, other than Hans Asperger in Germany and a few of his cohorts. We didn’t know about stimming, the social skills deficit or the neurology that would have unveiled my condition.  So I stood alone.

 I have been criticized for writing about this period in my life as I experienced it, rather than focusing more narrowly upon my autism. 

The social deficits were, and to some extent still are, real and pervasive. The sense of isolation, the astounding lack of connection to others.  Pleasure in solitude.  The foreign-ness of other people’s thought processes.

I cannot make up autistic traits.  I was different.  Socially awkward, and a loner.   That’s my truth.

And as an author who is autistic, the truth is the most powerful narrative I can offer you in a memoir. 

The sometimes horrifying, sometimes touching and sometimes humourous truths about what it was like to be socially challenged in the late fifties, early sixties, attempting to ward off a sexual predator while trying my best to figure out how to be normal in a world that seemed so completely foreign to me, is my story of growing up on the spectrum.

Unforgiving. The Memoir of an Asperger Teen is available on Kindle and in paperback through Amazon Books.  Read for yourself.  I told my truth.

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Writing on the Spectrum

Have you ever been bullied at school?  Teased in an unkind way?

Perhaps you tried to join in a conversation and the little knob of people you were addressing just kind of broke up and walked away. What does a person do with that?

For me, it became a memoir, a Kindle book called Unforgiving, Memoir of an Asperger’s Teen

I wrote about the incongruous juxtaposition of events in my teenaged life: the unpleasantness of being targeted by a child molester, dealing with an Asperger’s personality when no-one knew what that was, and getting the lead role in a National Film Board film.  Circumstances which in combination, isolated me from my family and my peers.  

My intention in writing this book was to illustrate how a series of events in a young teen’s life can create an overwhelming and pervasive sense of isolation from family and community.

Another Aspie, Tom Angleberger, has written an article on how Asperger’s powers his writing.  Angleberger is the author of a series of young adult books who uses unpleasant incidents from his school days as fodder for his plots.  Angleberger has published many books in which his knowledge of Star Wars along with embarrassing moments in his childhood create humorous adventures for his characters, always with positive conclusions.

Some of his titles include Darth Paper Strikes Back and Emperor Pickeltine Rides the Bus.  He combined his fascination with origami along with his love of writing to produce R2-D2’s Guide to Folding.  He currently has 52 books in print and nearly two hundred thousand reviews on Goodreads!

As for being autistic, Angleberger says the constant flow of words from his brain to his pen have helped him have a career he loves.

You can read more about this author at: https://origamiyoda.com/ or find his books on Amazon, or in bookstores.

That other autists like Kelly Brenner[i], a Seattle based naturalist who writes about urban nature, can become successful authors is not just a recent occurrence. A behavioral analysis site declares that historically, authors such as Emily Dickinson, Hans Christian Anderson and Lewis Carroll are thought to have been on the spectrum[ii].

 Interestingly, an American university research project published in July of 2020 indicated that autistic students out-performed their classmates in essay and project writing[iii]. The main issue for students with autism, the study findings suggest, is overcoming perfectionism.

Shauna Marie Henry[iv] writes to expose ‘the elephant in the room’.  She says having an Asperger’s viewpoint gives her stories a unique look at social conventions. 

For many of us, being an Aspie doesn’t smooth the pathway to a seamlessly successful social life.  At least not in our early lives.  But certain aspects of our condition, including our unique perceptions, our different ways of processing information, and our ability to find humour in the most socially disastrous circumstances, or even just to survive them, can be seen as positive attributes.  

For some, even fodder for a career we love. 


[i] https://www.theopennotebook.com/2018/10/09/writing-when-on-the-autism-spectrum/

[ii] https://www.appliedbehavioranalysisprograms.com/

[iii] Comparing the writing skills of autistic and nonautistic university students: A collaboration with autistic university students  Kristen Gillespie-LynchEmily HotezMatthew Zajic

[iv] https://writingcooperative.com/learning-to-write-with-aspergers-b1e0fe61b619

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YET: The Word that Turns I can’t into Future Possibilities!

The work that I love, creative writing, seems to have closed its door on me.  When someone very dear to me died, the joy and passion I once had for writing died, too.

 Being stuck is anxiety-producing for anyone, but especially us Aspies.  How can I reduce my anxiety?  I need to give myself attainable goals.   

So I have decided to blog once a week. But then I look back at my blogging history, and I feel anxious again. I can see that I don’t blog regularly.  Maybe I can’t.

When we self-talk in a negative way, we say things like, I don’t. I can’t.  I don’t know how to… or I’m not good at…

But we can convert these defeatist thoughts from the negative to the positive by the addition of a simple, single three-letter word: YET.

I’m not blogging once a week—Yet

Saying ‘yet’ interjects a positive possibility into our future. 

Saying ‘yet’ implies that we are not finished. 

We are not done.  We are not stuck in the muck of failure.  We are working, perhaps slowly, but nonetheless surely toward our goal.  The battle is not over.  The cause is not lost.

Not giving up is important to our self-esteem. 

It is a significant factor in our sense of self-efficacy, a term created by a renowned psychologist and Stanford professor of psychology named Albert Bandura.  Self-efficacy is our faith in our own ability to organize information, to make informed plans, and then successfully execute the steps required to manage “prospective situations”.

In other words, self-efficacy is our belief in our ability to strategize, to manage our behaviours and motivations. It is an awareness of our strengths and limitations when working toward goal achievement.

When we take a negative statement like, I’m not capable of… and change our thinking to say, I’m not capable of this yet, we imply that we are working toward achieving this goal. 

We are changing our mindset, and thus, we are changing the direction of our lives.

Our seemingly unattainable goal is no longer that daunting closed door of I can’t.   Instead it has become, I’m still working on that.

Give it a try.  Open up some of those doors you’ve recently closed on yourself.  Instead of I can’t.. or I don’t know how to…tell yourself,

I can’t do this yet…but I’m working on it!

This helpful tip came to me through an Autism BC sponsored webinar presented by Chelsea Jelic from POPARD[1]


[1] Provincial Outreach Program for Autism & Related Disorders, a BC Ministry of Education Resource for Teachers and Students.sive

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Asperger’s & Autism: Research Participants Needed.

Research is vital in assisting us in making our way through the world. New information helps us understand those processes that hinder us, and those that are helpful to us.  

One of the most challenging of these is the work environment. Lights can be too bright, office areas too open and noisy, and posted information can be confusing.

This month we have a chance to offer our input on a research project investigating the effect of the office environment upon the efficacy of those on the Spectrum.

Marc Burnard is a Florida U. doctoral candidate gathering information about changes we would like to see considered in office environments. 

Mark’s interest in this field comes from his personal life:

I have autistic friends and have come across many articles discussing the challenges that autistic people face in workplaces that are unaccommodating.”

There’s a push for neurodiversity initiatives in some workplaces, but a lack of research to facilitate them.

The goal of Mark’s study is to provide insights which may inform changes to workplace environmental design. 

He is a third-year doctoral student in the industrial-organizational psychology program at Florida International University.

His research interests span the stressor-strain process at work and neurodiversity.

He is seeking participants in Australia, Canada, the US, UK, Ireland and New Zealand, because Autism does not respect political or geographical boundaries.

Participants will receive an Amazon gift card for 15USd. To participate in this study, and for more information on the scope of this project see  https://www.mburnard.com/research.

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Reflecting Upon Our Social Interactions

Omigosh, was I really that unaware?

Recently we had lunch with some new friends. The hanging baskets cascaded their vivid blooms, the food and wine were perfect and the conversation flowed.

But the next day, reviewing one aspect of the conversation, I realized I had been guilty of that intense self-immersion we Aspies often experience.

At one point the conversation centred on an author I had recently met and whom my guest had recently heard interviewed on CBC Radio.  I waxed eloquent on my favourable estimation of this writer.  I elaborated on how we had come to know him and how respectful and talented we found him to be.

But not once did I ask our guest what impression he may have formed from hearing the author interviewed!!

Not only did I fail to learn more about our guest from his impressions, but I also lost the opportunity to later pass on feedback regarding the interview to our gifted friend.

And again it struck me that we all need to be aware of how we come across in social interactions with others.

Clearly social encounters present a learning platform for us.

Reviewing our most recent social encounters, reflecting upon how they went, upon both the positive and the negative, is a powerful exercise.

But it must be done without judgement, of ourselves or of others.

For me, a positive reflection of my interaction with others is simply an objective review of a conversation.  Where might I have been more thoughtful or encouraging of the other person?  Where might I have asked for clarification?

The key is to be kind to myself as I reflect.  To counsel myself as I would someone younger who has come to me for help.

When you reflect, love that you are learning, baby step by baby step, even as you make mistakes, perhaps even real blunders.  And then look for a way to move forward.

For instance, we have made plans to see these folks again, and when we do, you can be sure I will make a point of asking our friend about his impression of the interview.  He may not recall as much now, but I think he will be pleased that I remember our previous conversation and am interested in his point of view.

Everyone likes to have their thoughts, and especially their opinions acknowledged, and it is both polite and compassionate to be courteous to others when they address us.

My partner once received a card from a colleague who wrote, “You are the only person I have ever known who, when you ask me how I am, wait patiently for an answer.”

Whether it’s someone’s passing greeting in the hallway, or opening remark in the office lunchroom, or conversation over a meal, it is respectful to listen and to consider their words, rather than just thinking of what we want to say next.

Maybe sometimes we really just don’t care!

Here’s the thing: the first step in having others care about us, is caring about the collective others out there.

We must never stop attempting to make real, honest conversational forays. Yes, we are entitled to be selective in our conversational partners, but not exclusive.

Honest and frequent self-evaluation can help us to breeze through social encounters.

Try it!  A whole new world of social ease will present itself.

Margaret Jean

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Autism Syndrome Disorder: Being Prepared for Your Child’s Assessment

You may have noticed some indicators in your child’s behaviour suggesting they could be on the Autism Syndrome Spectrum.

You ask about having your child assessed, which is free through the BC Autism Assessment Network (BCAAN). You discover that if you put your child’s name on the wait list immediately, you will have to wait approximately sixteen months before your child is assessed.

Michele Shilvock, a behaviour analyst (BA) with a master’s degree in education advises that the sooner you can get your child on a wait list the better.

It is not only the advantages that can be provided once funding is in place, but also the range of funding which makes an early application desirable.

Government funding varies according to age, with the funding for children under six established at $22 000 per year. But for children over six the annual funding is only $6000.

Therefore, in order to get the greatest benefit from available services in anticipation of your child attending school, your preschool child needs to be in the system, awaiting assessment as early as possible.

As Shilvock pointed out in a recent online seminar sponsored by the BC Autism Society, You can always take yourself off the list if you find that you signed up in error.

The free assessment is a one-hour, one-time visit!

This is very different from a private, client paid assessment[i] which consists of several interviews with different professionals, at a total cost of between $1500 and $2500.

The positive aspect of the waiting period for the free assessment is that it can be a fruitful time for gathering information that will help ensure that your child is accurately and thoroughly assessed.

Shilvock is clear that you will need to clearly and concisely express and confirm your child’s behaviour in a very short period of time.

The brief glimpse that you provide of your child during the free assessment can be enhanced by videos of their behaviour under a variety of physical and emotional conditions, journals logging interactive activities or possibly exhibiting a lack of emotional control, stimming or unusual repetition in play or conversation.

If possible, enlist the help of others, such as daycare workers, preschool workers, coaches, or close relatives to record your child’s behaviours as well.

Above all, Shilvock says, be honest and realistic. Sugar coating your child’s behaviours at this crucial juncture could have devastating long-term consequences.

 

[i] Please see the resource page for B.C. professionals available for private assessment processes.

 

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Aspies & Social Relationships: Where Our Problem Lies in Interpreting Facial Expression: The Prefrontal Cortex.

As Aspies, we know we have difficulty reading facial expression in conversation.  But why?

This is a question that Arlin Cunic addresses in her article Are Asperger’s Disorder and Social Anxiety Disorder the Same*.

I was fascinated to learn that when we are in conversation with others, how anyone reads facial expressions is determined by the routing that occurs in our brains.

In the case of a person with Asperger’s, the brain sends the image for processing to the Prefrontal Cortex.  This is the area of the brain that deals with judgments and planning.

In the Prefrontal Cortex, logic rules.

However, conversations between two people in a relationship are often fraught with underlying emotion, an aspect of the exchange that is unrecognized in the Prefrontal Cortex.

So, how do neuro-typicals process facial expression?

In most people, the translation of facial expression occurs in a different area of the brain. The amygdala, Cunic states, is where emotion rules and this is the part of the brain to which conversational signals are transmitted and processed in non-Aspies .

And other people, when reading facial expressions, will have an automatic emotional response.

This does not happen in Aspie brains, where the emotional message is subjected instead to logical analysis.

This logic-based interpretation of emotional content is one reason why, then, some of us are hugely challenged in the area of building and maintaining relationships.

Take an instance where someone we love has a life-long dream of being an actress or an architect.  Or when a partner says they need more touching, a more physical expression of our love.

When they convey to us that they want to pursue that dream or they need us to be more emotionally connected to them, we are most likely to process this information objectively.

We may list the pros and cons, the factors in favour, and the factors that weigh against this possibility.

But we may not have the emotional comprehension, the emotional connection necessary to understand how important this issue is to our loved one.

We may even create ‘logical’ defenses or arguments, objective discussions clearly designed to show why it is not a good idea at this time to fulfil the other’s wishes.

This can be hurtful to our partners, as it illustrates a complete lack of understanding of and empathy with our partner’s emotional needs.

Most likely we will nevertheless continue to process the information logically, because the prefrontal cortex is uniquely wired to deal only with rational and logical considerations.

As a result, we may be unable to comprehend why anyone would even want to do something that to us seems frivolous and unnecessary.

We may angrily protest that our partner has heard nothing we have said.

In fact, the opposite is true.  We have not heard what they have said.

We may well be incapable of doing so, unless we stop and listen.  Unless we can accept that there is something in the message that we are not getting.  Unless we allow them to lead us to that understanding.

Perhaps the person who wants to try a different career already has a good paying job that they would put at risk.

Maybe life together is quite pleasantly predictably organized and pursuing the new occupation would be disruptive both to the current routine and your joint finances.

Logically, their dream makes no sense to us, and therefore we may deem it invalid.

We may not be able to recognize the emotion and passion that accompanies these and other conversations.  We may even deem the expression of their needs as inconsequential, a foolish request.

The relationship will probably end here, because we simply cannot ‘get’ the other person’s point of view.  We are attempting to successfully process with logic, a request or desire that requires an emotional interpretation, and emotional support.

Knowing that we may well fall short in emotional support of our partners can give us pause.  We can stop and reconsider what they are saying to us.

We may never fully understand or empathize with the emotion that accompanies their need, but I believe we can learn to recognize when these conversations are happening.

We can learn to express appropriate responses, and commit to behaviours that acknowledge another’s emotional needs.

Is it worth it?  Giving in, when logic argues against it?  Think about the relationship and what it means to you, how being together enriches your life.  Think it through, and then decide.

Yours truly,

Margaret Jean.

*To read Cunic’s article go to :  https://www.verywellmind.com/how-is-aspergers-related-to-social-anxiety-disorder-3024753

 

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Young Adult & Adult Aspies: Who Is In Charge of Your Life?

Margaret Jean

Who will navigate us successfully through life to success?  To achieve the goals we set for ourselves?

Dr. Phil as he is commonly known, says it has to be us.  Nobody else. And he has developed a set of what he calls “Life Laws” which he has used to help many of his clients find their way out of seemingly hopeless situations.

In his book, Life Strategies: Doing What Works, Doing What Matters, Dr. Phillip McGraw stresses that what is vital is “…understanding and controlling the cause-and-effect relationships of life; in other words, using your knowledge to make things happen the way you want them to.”

That we are responsible for learning the social strategies that will get us where we want to go, is probably, as Aspies, the last thing we want to hear.

But whether or not you are familiar with Dr. Phil’s non-nonsense TV Show style of therapy, I…

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Aspies: Building Upon Success

One day my older daughter came home from school, excited to show us that she had just learned how to do cartwheels. Beverly demonstrated this new ability several times, making it look easy.  Her younger sister, Suzanne, wanted to try doing cartwheels, too. But each time she tried she fell over sideways, and after a few attempts she stopped trying.

Watching from the kitchen window, I saw her disappointment.  Quickly drying my hands, I went out to her.

“I can’t do cartwheels,” she said, visibly upset.

“Oh, I’m sure you can!  It just takes practice.”

Bev told us how: “Try to picture where your body is when it’s in the air. Think about where you want your legs to be, and how you want to land.”  We all tried it together.

Sue and I landed in a crumpled heap.  Sue laughed at seeing her Mom try something  only kids usually do.

We kept at it.  Finally we both did cartwheels, keeping our legs straight and landing cleanly.  Bev congratulated us on our success.

Such a small moment in our lives. But what a powerful impact that learning experience had for me!

Weeks later I was offered the position of Director of a small museum and art gallery on an interim basis.  I had very little experience, having worked there only part time for a few months the previous year. I also had no office experience, let alone administrative experience. And new exhibits were coming into the gallery!  My first reaction was to refuse.

Then I remembered the cartwheel experience. Was everything really that simple? I wondered.

If so, then I could break the museum job down into a few basic steps. I needed to understand what was required of me, visualize how that could be done and then put those proceesses into effect.

In the six months that I was Interim Director I used every resource at hand.  My volunteers were women who had retired from various professional positions and one of them set up the office administration.  When she reviewed the system with me we fine tuned it together.

When I found an infestation in one of the permanent displays, I conferred with a UBC professor who advised me on how to deal with the current problem and prevent future similar issues.

Professionals from other galleries gave me advice on hanging, lighting and installing exhibits.

Did I celebrate this success?  I’m not sure, so probably not.  Yet that is what experts tell us to do.

A celebration is an acknowledgement that actively reinforces our understanding of our ability to achieve the goals we set for ourselves.

The rite of celebration ensures that we will be more confident, ready and even eager to accept the next challenge.

What are your recent successes?

Maybe it was something very simple like phoning to get the interest rate on your credit card reduced. Were you polite, positive, and interacting well with the agent on the phone?

Perhaps it was a successful coffee date with a friend.  Did you listen attentively and engage with their train of thought?

Or maybe it was something more difficult, like taking a test which required weeks of preparation, or completing a long-term project.  What steps did you take to help make success possible?

However simple or complex, when you do well, acknowledge your success!

We can tend to focus on what went wrong.  When you do so, learn from it!  What will you do differently next time?

As when doing cartwheels, looking at why you failed is important to the next success. Temporary failure is only a negative if you get stuck on blaming yourself.

Instead, think of what you could have done differently, and visualize it happening. Just like having floppy legs when doing cartwheels, acknowledge the problem, clearly imagine the adjustments you will make, and move on.

When we focus upon and acknowledge our achievements we help to ensure many more successes in the future!

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