Tag Archives: autism

Autism and Family Dynamics

Growing up in a family divided into two camps was very difficult for her.

My daughter Suzanne, our dear friend, Mary Anne

I’m a tax preparer. Some would say an apt profession for a person on the autism spectrum.  Working alone, dealing with numbers and calculations, facts and figures.  A skill that requires tremendous concentration and an ability to survey the financial landscape; see the complexities that lie within it.

My daughter, Sue, owns the firm.  She has been keeping books and doing taxes since her late teens. Some of the customers have been loyal to her for more than thirty years.

She is a great boss.  Firm but kind.  She is not autistic.  She has millions of friends (or so it seems) and is very social.

Growing up in a family divided into two camps (autistic and not), was very difficult for her. 

For all of us.  We each have our scars.  My emotional immaturity did not help.  I was very young when I birthed my three children. That’s the reality, not an excuse.

I was very young…

I ‘m wearing the dark shirt. My cousin is with me and my children.

As an aging autist, I look back on my early years, my children’s formative years, and I wince.  However much I loved them, and I did love them unequivocally, I know my child rearing was not any where near ideal.

I didn’t know how to play, how to have fun, how to make sure they had the emotional and physical supports that they needed. 

All I could do was love them in my own way.  Certainly not nearly enough to give them a solid start in life.

And yet, today, all three children have their own homes, are gainfully employed, have friends and family close to them.

I am on good terms with all of my children.  When we talk, it is with respect and love.

I speak with my employer/daughter every day, and the love she has for me comes through clearly, even if those conversations are mostly business.

We all survived.  We are well.  And I am so grateful, because I know I do not deserve this beautiful outcome. 

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Navigating Relationships: Insights from Autism and Philosophy

Growing up on the autism spectrum, I never understood power in personal relationships.  I naively assumed that as adults, people would just naturally treat each other with respect and acceptance. 

People would want what was best for themselves and for the other person.

And in the workplace that would translate to balancing out the needs of the client, with the efficiency and profitability of the firm, while developing processes which would enable workers to do the best possible job with efficiency, pride and productivity.  For a fair wage.

Once I found myself in the ‘real’ world, I had no idea how to navigate the stresses and anxieties of very different personalities malfunctioning together in the work place.

I once complained to my sister that in the personal relationship I was then immersed in, I was the only powerless person.  I was sobbing.  Her response was straightforward:  You have the power, Marg.  You just don’t use it.

The truth? I didn’t know how.

I’ve learned to hold my own since then.  And recently I’ve found two books that clearly speak to this issue. It’s a relief to find authors who clarify the critical aspects of successfully managing stressful interpersonal relationships. 

Because we all find ourselves in situations that require working with or being with other people. 

Situations like Life.

Ichiro Kishimi and Fumitake Koga, two Japanese authors, explore the emotional fallout that can result from coming into contact with ‘the real world’. In their book, The Courage to be Disliked they discuss the calming effects of accepting and embracing who you are.

This book does not even mention autism spectrum disorder. 

Instead, the authors talk about our response to people and situations, and how we can find contentment regardless of what others may think about who we are and what we choose to do.

The format Koga and Kishimi chose for the book is loosely based on Plato’s dialogues.  That is, it’s a plain-language conversation between a philosopher and a young man, revealing the philosophical or Adlerian keys to being true to yourself.

I enjoyed the back and forth discussion; the young man constantly challenging the concepts and ideas put forth by the philosopher.

The discussions  explore the acknowledgement that others are not always going to be aligned with your personality and goals.  In short, they examine how a person can best move forward regardless of the opinions and/or criticisms of others.

Kishimi and Koga discuss our concern about what others might think—and note that this is different from caring about others—and how that emotional involvement with what others think about us, can hinder progress toward being our best self.

It’s a clear philosophical foundation for living your life freed from the inhibiting power of what other people think.

Along the same lines, but much more in the vein of a self-help revelation is The Let Them Theory by Mel Robbins. 

Robbins covers topics from achieving your goals to making, maintaining and letting go of friendships.  Her premise is simple: Do people shun you?  Let them. Do others criticize you?  Let them.  Do they do things you would never do?  Let them.  Let go of critical judgements, critical of yourself and of others.

The letting go is only the first step.  Robbins is clear that two steps are needed for this theory to work in an emotionally healthy way. The second step is, after acknowledging the issue that makes you think, “Let them”, you will then go on to explore self-validation in a way that is satisfying to you.

Her delivery, far from being philosophical, is very personal and direct. 

As spectrum riders, we can mourn our social/political/employment situation, or lack thereof, to our heart’s content. But at some point, we have to pick up our tents and move into the real world.  And hopefully?  Make a difference, however small.

Yours truly,

Margaret Jean.

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Navigating the Autism Spectrum: Resources for Families and Individuals

An internet search reveals many resources, based on expertise and experience, for both spectrum dwellers and their families. I’ve found a number of researchers, doctors, psychiatrists who focus on autism, as well as parents and siblings of people with autism who have spoken or written about their experiences. And perhaps most of all, I appreciate the people who live their lives publicly riding the spectrum.

Where did my help come from?  Like many others, my help came from my family.  But not my parents. When I was growing up no information was available about children born on the high-functioning end of the spectrum. I was erratically school smart. And socially a constant and predictable embarrassment.

I talked too loud.  I talked too much.  I talked about weird things—like poetry or plays or Shakespeare. I failed Maths and Science but my essay on MacBeth (13 pages) was put in the reference section of the school library. 

My parents found me an embarrassingly unmanageable conundrum. It was my daughter who first understood the role autism played in our lives.

Fortunately, today there are many resources available to families and autists alike.

There are parents who write books sharing their insights, like Ellen Notbohm, author of Ten Things Every Child with Autism Wishes You Knew.

Researchers like Chloe Silverman, author of Understanding Autism, Parents, Doctors, and the History of a Disorder, trace the significant influence of parental advocacy in adjustments to treatment approaches.

And people on the spectrum like Temple Grandin who have boldly lived as they were born to live—unabashedly honest and talented, and faced the world with their truths.

We can read John Elder Robison’s advice in Be Different, or learn about his experiences with transcranial magnetic stimulation in Switched On.  

We can listen to Ted Talks by Temple Grandin about the positive aspects of the autistic brain, or hear Kate Kahle and Ethan Lisi relate that autism is a difference, not a disorder.

We can read shared stories by women about their relationships, parenting, and navigating the workplace in  Spectrum Women, or watch a variety of filmic portrayals of non-neurotypical life on TV.

These shared experiences open the possibility for self-acceptance and personal growth. It’s a feast. An intellectual and experiential banquet. And we are all invited.

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Positive Aspects of Life on the Spectrum: Sheila’s Story.

In this blog series, I am presenting lives that express the ways in which not being Neuro Typical is a career asset.  Thinking outside the box is normal for people on the autism spectrum. In certain circumstances this attribute of our condition can be beneficial. 

To continue Sheila’s story, begun in the previous blog, I will first relate some background information, along with some early practices she implemented. These temporary solutions to her son, Seamus’ social and learning problems ultimately led to her ability to explore unique and innovative methodology, which will be discussed in the next blog in this series. 

Sheila’s school experience was successful both academically and socially. However, later circumstances rendered her a single mom on welfare with an autistic child, Seamus.

As a result, Sheila experienced the understanding of how frustrating life can be for both parent and child, when someone is trying their best, socially and academically, and yet, is largely unsuccessful at one or both.

Seamus was a loving boy, but he found socializing at school impossible. Ostracized and bullied, he could never join in any games, and he had no friends to ‘hang’ with at lunch or recess. Sheila decided to see how she could help.

Every lunch hour she joined Seamus on the playground. Standing with him, she would ask, “Who wants to play baseball?” Invariably several children would crowd around.  “Alright,” she’d say, “There’s only one rule, and that is, Seamus gets to play.”

The ‘Seamus ball game’ soon became a popular lunch time activity! Sheila would also stay later on occasion to help in the classroom if Seamus was having a problem with the work. Her organized approach, ability to quickly assess a situation through Seamus’ eyes and her friendly but authoritative air made her an asset in the classroom.

In the late 1990’s, not a lot was known about the autism spectrum, especially the high end kids who seemed to have no trouble learning but couldn’t manage their social life. After countless incomplete diagnoses, from leaky gut to ADD and ADHD, Sheila felt at a loss. She didn’t like the effect of the medications prescribed for her son, and he didn’t either, often refusing to take them.

One day, after attending a conference on autism, a teacher from Seamus’ school phoned Sheila.   I think I know what Seamus has, she told Sheila. When given a list of the symptomatic behaviours, Sheila recognized to her surprise, that it was not only Seamus who was on the spectrum–she was on the spectrum, too! This self-knowledge opened up a wide range of concerns and possibilities for both Sheila and her son.

In her book, Aspergirls, Rudy Simone states that for adults, being diagnosed can be a relief. A diagnosis for a child can also bring relief for parents like Sheila, who until Seamus’ diagnosis did not know where to turn for helpful information. In the years before Sheila was diagnosed, her focus was on helping Seamus.

Little was known about how to help those on the high end of the spectrum, then known as Asperger’s. With the help of his school staff, his family doctor, and Sheila’s campaigning, Seamus was able to access a facility for testing.  Once he was diagnosed, funding became available for special programs and activities for him. 

Every dime had to be accounted for, and it could only be spent on the special needs or activities for him, Sheila recalls.

Sheila’s experience with her son provided her insight into similar situations. She understands the frustration of having a child who neither learns nor interacts in the same way as their peers. She has gained the power of finding those keys which open doors for students who feel stymied by the different ways their brain works.

Success is what these kids need to experience. Sheila tells me, referring to both behavioural and learning issues. Helping her students find the self-confidence that will allow for success, is the motivating factor in her work.

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A Positive Aspect of Life on the Spectrum.

I’d like to further explore that position in this blog.  

Being on the spectrum has the advantage of enabling us to see events from a focused, objective perspective, one which is devoid of much of the emotional, social ‘baggage’ which often burden neural typicals.

From this distinctive, intellectually isolated position, we are able to recognize the ‘essence’ of scientific and political dilemmas which, when no longer ‘wrapped up’ in irrelevant social diplomacy, are much simpler to resolve.

We see significant examples of this in Elon Musk, Greta Thunberg, and Temple Grandin, people whose unique perspectives have promoted both awareness of and possible solutions to critical environmental and industrial challenges currently impacting all of humanity.

If you are on the spectrum, you may wish to consider whether your ‘lack of alignment’ with decisions being made for all of us by neural typical politicians and industrialists is because you are somehow ‘deficient’, or rather because you are better positioned to recognise, isolate and promote workable solutions to complex issues.

There is a difference in the way the human brain processes incoming information in neural typicals vs those on the spectrum. Our uniqueness allows us a different outlook on problems and often, a unique approach to them.  Our lack of emotional or social involvement encourages us to see issues objectively, and therefore to approach solutions rationally. 

 You may wish to discuss this with acquaintances who are also on the spectrum. You may be surprised at how others share both this viewpoint, and the frustration which arises from being marginalized.

 Once you are receptive to the notion of a positive influence resulting from the differing neurological processes, you will find no shortage of examples of the benefits of this unique perspective,

Sheila is one such person who brings a unique talent to her work.

Sheila is an Educational Assistant who, in her 20 year career, has worked with educationally challenged children ranging from kindergarten through high school. 

Early on, her talent for this work was discovered to be exceptional, and subsequently she often finds herself assigned the students with the most serious limitations, ranging from behavioural issues to those with significant brain differences..

In my next blog posting I will explore some specific, unique approaches that Sheila uses with great success.

You will see how, when her autistic mind identifies and isolates problems, successful solutions inevitably follow. You may find that they resonate with you. You may even find them quite fascinating!

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Burning Bridges

While everyone finds it difficult to determine who can be trusted, it is especially so for those of us on the spectrum.

We are often unaware of intentions indicated by visual clues like body language, eye movement and facial expression. This inability can make us vulnerable, and too often the brunt of mean spirited, self-serving individuals.   

Others may purposely set us up, taking something they know we said in innocence, or jest, purposely repeating it to others out of context so as to make it sound harmful, cruel or vindictive. At best in the hope of personal gain, or worst, out of pure maliciousness.

In casual conversation with others we may make a sarcastic, but light hearted, innocuous, remark like, “Right! Because we all know Mary is so lazy!  Not!”  Soon the rumour circulating in the office is that you said Mary is lazy. You cannot deny that literally you did say that Mary was lazy, even though you meant to playfully convey the opposite.

Incidents like this are why those of us on the spectrum will often think carefully about what to say before speaking.  This pre-speech ‘pause’ can be misinterpreted by neural typicals as an indication that we are not interested in responding. The fact is we are thinking our way through to a socially appropriate response.  

Who to trust?  We cannot guard our every word. There will always be others who prey upon our ‘differences’ with selfish motives.  

Our best defence is to speak honestly, in a clear, straightforward manner, simply stating our intention.  In this way we can avoid the temptation to overly qualify or clarify what we have said, after the fact.  

It is important to always speak with goodwill.  But it is equally important to be careful about who you engage in conversation.  That person you joked with about Mary?  Future conversations with that individual must be limited to factual information, devoid of social playful banter.

Having difficulty making friends means we will often excuse people’s bad behaviour to keep the ‘friendship’ alive.  But this is setting ourselves up for constant betrayal.

Certain conversational topics are great gateways through which to get to know others. 

General topics, like the weather, TV shows, books, or current events can ease us into a new social relationship. Personally revealing conversation can be ammunition for self-serving bullies.

Save confidences for later, when you have had time to evaluate the trustworthiness of your new friends.

In her book, Aspergirls, Rudy Simone urges those on the spectrum to defend themselves “with tact and strength”.  She further counsels us to be constantly aware of the unpleasant personality traits possessed by certain people in our lives.

If you find yourself ostracized by others as a result of deliberate misinformation spread by an ignorant individual, there is little you can do to defend yourself.

In stressful situations such as these, Simone suggests that you take the ‘high road’, displaying as little overt anger, and as much grace as you can muster, in order to retain your personal integrity and self-respect.

“Remember the three R’s,” she counsels. “References, recommendation, and reputation.” You may need to maintain all three in order to have the life you desire. 

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Aspergirls by Rudy Simone

An Empowering Read for Women on the Autism Spectrum

I appreciate Rudy Simone’s acknowledgement that sometimes our social behaviours result in “botched interactions” causing feelings of guilt and self-blame. We on the spectrum have all had those experiences!

I learned that I was on the spectrum when my grandson was diagnosed. My daughter phoned me, very excited, and added, “And Mom, you and I also have all the symptoms!”

It was a joyful and terrifying moment. Joyful because suddenly there was an explanation for my horrific record of social blunders. Terrifying because it meant that I had been stumbling blindly through school, marriages and child-rearing without the benefit of this knowledge.

The awareness gave me the gift of compassion for myself. As Simone says in Aspergirls, diagnosis comes with a sensation of relief. 

I would like to say that I stopped feeling inadequate in that moment, but like the women in Simone’s book, and as anyone on the spectrum knows, that fear of being found lacking in social situations does not suddenly vanish.

Still, I’ve found that sense of insecurity can sometimes be useful. Feeling uncertain can make me hesitant at times, a caution which allows me to reassess a situation and perhaps even quickly think through and revise my initial instinctive response.

Simone notes that not being diagnosed invites all kinds of speculation, including unflattering and insulting conclusions about what our ‘problem’ is. 

People will often assume that our lack of social propriety is intentional. Or, seeing that we are vulnerable, some folks can’t resist the cruel opportunity to take advantage of our inability to appropriately defend ourselves in social situations, perhaps even to elevate their own social status in the eyes of their peers.

I found Simone’s book reassuring, in that she not only writes about her own experience, but also presents the comments and experiences of other ‘Aspergirls’. 

She covers a wide range of topics, from dating, sex and relationships, including ending those relationships (burning bridges), along with bullying at school, managing employment situations, stimming behaviours and sensory overload. Each chapter contains personal anecdotes, research and information, and ends with advice to Aspergirls and their parents.

Aspergirls is not only informative, it is a book that will make any girl on the autism spectrum feel at home in its pages, which will help parents, siblings and significant others to perhaps see the world from our point of view.

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Grandin: Understanding Individual Brain Differences Can Help Control Behaviours

https://www.youtube.com/watch?v=xFP7ubENTAM

You really get Temple Grandin’s enthusiasm when she talks about brain differences.  Just knowing how your brain is unusual can help people with autism better understand and control their behaviours and emotions, Grandin says in her latest book, The Autistic Brain.

She gives the example of her own brain.  For instance, the amygdala is the part of the brain that processes emotions like fear.  Just so happens, Grandin’s amygdala is enlarged.  Since this is the part of the brain that signals the fear emotion, Grandin credits this brain anomaly with her hyper anxiety.

Because she now knows that her brain construction is probably responsible for her high levels of anxiety, she finds that anxiety easier to deal with.

Grandin gives the example of students talking  under her bedroom window at night.  This creates anxiety for her regardless of whether they are talking softly or loudly.

Knowing that this state of anxiety is not caused by any real threat, she can reassure herself that the problem is not outside;  the problem lies within her brain.

She can then deal with the fact that threat is not real.  What is real?  How she feels about it.  And that she can deal with.

 

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Which is more limiting? The Autism Label? Or Our Parenting?

Temple Grandin, whom I greatly admire,  refers to parenting as a “major source of therapeutic momentum”.  But she adds, when children are diagnosed on the autism spectrum, parents may not have enough expectations for their children.

 

They bring the child through school to graduation, but in the meantime, they have not given the child the kind of experience that teaches them life skills, leaving the graduate either unemployed or under-employed.

Autistic children need to learn how to work, Grandin asserts.  They need to learn basic coping skills, like how to shop, how to order food in a restaurant.  Showing up on time, being responsible for a task outcome, these are skills that are needed in order to learn how to be on the job.

 

That’s why I personally feel that involving kids on the autism spectrum in some kind of volunteer activity, where they must show up regularly, and perform expected tasks, is invaluable to today’s kids, autistic or not.

 

As a volunteer, they must learn to be courteous (a missing factor in today’s world, Grandin laments) and to be reliable, to learn certain work routines and to cope with organizational structures.

As a volunteer, they will also meet retired people who have similar interests and who can mentor them.

The best part?  The child can choose the type of organization he/she wishes to volunteer with and select from a schedule of available days and times those which would be most suitable for them.

These kinds of situations force spectrum kids to interact with others, and Grandin says to insist on social interaction for your child is not only desirable, but necessary if you want him to succeed.

 

“The skills that people with autism bring to the table should be nurtured, for their benefit and for society’s.”  That’s why Grandin believes parents must help their children get out into the work world, learn coping skills and the basics of social etiquette.

As parents, we either help, or hinder.  While we cannot help how children are viewed by others, our most important work is in how we encourage our children to see themselves.

 

Quotes from: http://www.templegrandin.com/

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Asperger’s Syndrome: What It Is and How It Translates To Behaviour In the Workplace.

 

My Daughter, Bev, shared some of her work experiences.

My Daughter, Bev, shared some of her work experiences.

Recently I was asked to speak to the Ladner Rotary Club about Asperger’s Syndrome.  I gratefully agreed.  Any opportunity to spread knowledge about Asperger’s is to be seized and capitalized upon!

The first person I turned to was my daughter, Bev, who is a Special Education Assistant in a large highschool.  She also has Asperger’s herself, as does her older son.  Between him and me, she sometimes found herself with her hands full!

Ever practical, Bev immediately sized up the situation and decided we should talk about Asperger’s in the workplace.

Here is a brief bit of Bev’s part of the talk:

Bev talked about how anxiety over minor problems can seem overwhelming to someone with Asperger’s.  About the difficulty people on the spectrum can have with the inability to remember and recognize co-workers, even after working with them for a considerable time, something Dr. Jim Tanaka of UVic refers to as “face blindness”.

She also talked about how rules and structure are the spectrum person’s comfort zone, how her son said of his job, “They have routine, Mom.  Rules,  Yes!” And how it was his love of structure and routine that earned him a full time job almost immediately after he started in a temporary position with the company.

People in the spectrum need training and guidance.  “Tell us what to do and how to do it,” Bev said, “and we will gladly get the job done.”

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