Category Archives: Asperger’s research

Feb 01 2022
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Adult Aspies and Social situations, An Asperger Point of View, Asperger's research, writing on the Spectrum

Viewing Asperger’s through a Different Window.

John Elder Robison, who has Asperger’s, writes prolifically on Autism. He volunteered to undergo an experimental treatment which involved being subjected to magnetic stimulation of targeted areas of his brain.

There have been extensive studies on Asperger’s by neurophysiologists during the past 30 – 40 years. During the past 15 – 20 years, the emphasis has been upon the difference in utilization of the Cerebral cortex and the Amygdala aspect of the Cerebellum between neurotypicals and those on the Autism Spectrum.

These studies reveal how information with an emotional content, especially when personally conveyed, is largely processed in the Cerebral cortex by those with Asperger’s rather than in the Amygdala where it is processed by neurotypicals.

The result is those of us on the autism spectrum process information with emotional content logically, rather than emotionally.

However, the richer the contextual content associated with the information, the greater the ability of Aspies to ‘understand’, even if they cannot ‘directly experience’ the emotion being expressed.

In the experimental treatment in which Robison participated, he didn’t immediately notice any difference.

But the next day, when he interacted with others, he was unexpectedly overwhelmed by an almost ‘psychic’ awareness of their emotions. 

He was assailed by emotions of “jealousy, fear, anger and every bad thing I could imagine” (Neale). It was an unexpected torrent of emotions which he experienced as shocking and distressing.

This situation, one of being admitted to an emotional landscape which is usually unavailable, puts me in mind of Virginia Woolf’s comment in A Room of One’s Own about patriarchal rules in Oxbridge. At the library, she was refused entrance because of being a woman.

In social situations, as a person with autism syndrome, I feel as Woolf did “…how unpleasant it is to be locked out;” (18).  

But when I am composing a poem like Exonerating Eve which expresses such a divergent but powerful viewpoint, then, like Woolf, I cannot help but ponder the alternative, as she did when she added, “… and I thought how it is worse perhaps to be locked in;” (18).

Aspies, such as myself, come to realize early in our lives that we are somehow ‘locked out’. We learn to accept this and to make social inroads where we may.

But Robison’s experience indicates that our lack of social/emotional understanding is a ‘locking out’ that is at least in some respects beneficial, allowing us to experience the world in a way that, while ingenuous, is also unique and  insightful.

And thus I present my poem:

EXONERATING EVE

I know why Eve ate the apple

Picked and tasted forbidden fruit.

Locked in her Eden she hungered for more,

wanted proof that her life would not always be
just wandering the garden, a helpmate to Adam,

a servant to God.

In her heart she yearned for more than the beauty,

More than the silence. More than obedience.

Something within called her to challenge

the ‘perfection’ of a life established by God. 

Accepted by Man. 

Did The Creator witness her anguish? Did He
inspire her desire for more?

Gifting free will to all of humanity,

did He await our wakening thrill?

Did He seek a braver companion than one who
obeyed without question or zeal?

Was He astounded when it was the woman,

The feminine one who plucked and then peeled 

The Fruit that triggered a flood of passion
and reason, Wherein she
shrugged off obedience and now saw
her truth?

 Newly aware, she sees in her nudity 

All that is vulnerable and desirable to men. 

Looking out at the garden she sees the reality, 

thorns and thistles suddenly visible.

And within her, awareness of a strong inner spirit,

God-given,
to prepare her for the journey that she now begins.

Eve ate the fruit to be free from the fallacy

That her life was perfect. 

She dared to be more than that helpmate.

More than that servant.

To live in a garden that was an Eden no more.

A garden that now she perceives as a jungle.

A garden that asks her spirit to grow. 

A garden with pathways to be forged

and then trodden.

A life posing questions, needing answers,

Revealing wonders, unveiling horrors. A life to be
probed. A will to be tested.

Searching for truth, for reason and passion,

She reaches up, plucks The Fruit from the tree.

And in that critical, wonderful moment,

Plunges mankind into uncertainty, Drawing us
all out of complacency.

 Here in the midst of this pandemic, I understand
a woman like Eve.

As I sit and reflect on the life I’ve created,

I challenge myself to find more of me.

To ask the hard questions, to reach for the truth. 

To find in myself the courage to ask 

the questions that, unanswered leave me unproved.

To reach for the core, the richness of life. Face my own
fears, grapple with and tame them.

While I have time. While I am here, locked in this life Some would
call Paradise.

Yes. I have come to know why Eve ate that apple.

4:53 AM

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Jun 18 2021
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ASD and Aspergers Resources, Asperger's research, Aspies parenting, autism research

Our Friends at Autism BC and SFU.

To be on the spectrum or to be the parent of someone on the spectrum is to open a window on a world view that few others experience.

I think we see things differently, perhaps more intimately than others. I don’t know, because being autistic precludes me from seeing the world through any other lens. I know I delight in my surroundings, and in the simple pleasures of my home. However, it has been a long journey that has led me to this place of serenity and peace.

To my parents, I was an unpredictable, alien-type being who landed in the midst of a family of people who thought of themselves as ‘normal’, a label which could not under any circumstance be applied to me.

My parents would have benefited greatly from the resources that are available to parents today. My early life perhaps would have been far less damaging and debilitating.

Fortunately, today, parents of children on the spectrum have a variety of resources. Here is information on just two in my area of BC, Canada.

Autism BC is a charitable foundation formed to assist families and individuals in their journey through Autism.

Founded in 1975, AutismBC serves the entire province of British Columbia, assisting families with programs and webinars dispensing information about many facets of Autism and the how-to’s of getting assistance from both government and private agencies.

Membership includes access to:

  • Referrals for services 
  • Community support groups 
  • Vetted, credible information & resources 
  • Inclusive social clubs 
  • Free ticket giveaways 
  • Autism BC Goes Community Events 
  • Discounts on workshops and training 
  • Regionally-specific Autism BC Newsletters 
  • Connection to the largest autism network in BC 

Best of all, Membership is free!

In a recent posting, Brock, the program manager at Autism BC listed a number of summer programs and resources currently available to members. These include summer arts and math camps for children, and a discussion on hassle-free toilet training for your child. To access these, go to AutismBC.ca

Brock also mentions the SFU yourlearner.com program in which an Artificial Intelligence supported special needs intervention app is being developed.

The program coordinators at SFU are looking for parents to help test the program.

Parents who have had difficulty finding support for their children due to insufficient funding, long wait lists or unavailable service providers may apply. The final date for applications to this program is June 30, with the program starting in July.

The SFU website also has a video guide for parents on how to get the most from ABA or Applied Behavioural Analysis at: https://yourlearner.com/events.

This is only one of their helpful videos on managing life with someone on the spectrum.

The resources are out there. As more people ascribe to these programs, and as an increasing member and support base is developed, the opportunities for additional programs expand.

The more we become familiar with these programs and foundations, giving feedback and support, the more resources and services will become available to us.

Look up your local and international autism spectrum support systems. Then use them. It’s a win-win situation.

Margaret Jean Adam

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Feb 07 2020
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Asperger's research, Autism Spectrum, flat affect advantages, flat affect Asperger's, prosody--inflections in communication, writing on the Spectrum

Flat Affect: The Flip Side

What if our Flat Affect has a ‘flip side’?

What if Flat Affect could even be a selective, evolutionary advantage?

Are Aspies perhaps actually more appropriately aligned to deal with the great variety of societal conflicts currently confronting the world?

I have been researching prosody[i] or the inflections, physical[ii] and vocal, that make up our conversations.  Numerous studies[iii] indicate that not all peoples interpret conversational inflections in the same way.

For instance, as a young man working in South America, my friend, Richard, realized that in some Chilean, Peruvian and Bolivian subcultures, it was not wise to show his teeth when smiling.  He found the baring of teeth could sometimes be mistaken for an aggressive attitude.

Research by psychologist Carlos Crivelli and anthropologist Sergio Jarillo (see references below) indicates that primitive societies often do not read facial expressions in the same way as European/North American cultures.  In fact, they found some of our ‘obvious’ expressions baffling.

Is the increased ‘mingling’ of previously geographically separate cultures, each of which has established its own distinctive non-verbal communication, less of a problem for us Aspies with our Flat Affect?

Does inscrutability lead to less misunderstanding of the distinctive facial ‘cues’ which neural typicals are confidently projecting?

Here’s a radical thought! What if our Flat Affect has advantages which outweigh its well–known disadvantages?

What if our lack of facial expression is not necessarily a negative quality?  Could it instead be a genetic variation which facilitates our participation in a global society?

We live in an increasingly internationally diverse culture.  Different facial expressions can send conflicting and sometimes even threatening messages, depending on the culture in which we find ourselves. Under those circumstances, wouldn’t Flat Affect be a good thing?

And consider this: so much of our current communication takes place on the internet where little or no facial expression is involved—emails, chat rooms, Twitter, Facebook, Instagram. Are Aspies then the children of a world society where conversation is solely based on the verbal rather than on time-honored inflected conversation?

In a shrinking world where uniquely defined cultures more often ‘bump up’ against each other perhaps we are the best prepared to diffuse possible misunderstandings, rather than further igniting them!

[i] https://www.spectrumnews.org/news/social-communication-autism-explained

[ii] Facial Action Coding studies by Jennifer Fugate as reported in Malcolm Gladwell’s book Talking to Strangers pages 147 to 152.

[iii] Sergio Jarillo & Carlos Crivelli  as commented upon in Gladwell’s Talking to Strangers pg.154 to 159 and abstract from:

https://psycnet.apa.org/record/2016-19236-001

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Mar 25 2019
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Adult Aspies and Social situations, anxiety, Asperger's diagnosis, Asperger's research, camouflaging & autism

My Asperger Personality Unmasked.

Research published online on May 19, 2017 examines the notion that Aspies and others on the spectrum camouflage their autistic personalities in order to manage social situations.

The study entitled, “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions* looks at a number of issues ranging from:

  • why females in particular are often diagnosed later in life,

  • if the fact that so few females are diagnosed is due to the feminine personality being more successful at camouflaging, and

  • that perhaps camouflaging can be detrimental to our mental health.

Before I read the study, I wrote this blog in an explosive mood after experiencing severe anxieties about taking a bath. I didn’t post it because I was afraid of what my partner would think if he read it.

After what I read in the study, I realized that by not showing him the blog I was camouflaging, masking my anxiety–though honestly, not very well.  

Why did I take a bath?  Because it’s such a normal thing to do, and I felt that I must be weird to be so resistant to sitting in a tub.

What follows in the resulting blog are my true feelings about the situation.  Looking at it now that a little time has passed, I realize that while some of the blog sounds reasonable, logical and fairly intelligent, other aspects simply seem to be the rantings of an angry child.

Here it is then, one Asperger personality, my own, unmasked and unleashed!

The Bath: A Source of Anxiety for Asperger Me.

As an Aspie, maintaining a relationship can be a challenge.

My partner thinks of baths as sensual, delightful, peaceful and meditative experiences.  Candles, essential oils, music, time for reflection.

There is no music in my bathroom, I told him.

To break the ensuing period of uncomfortable silence, I spoke up.  I said Baths are boring.  Which, granted, was probably rather inconsiderate.  That’s when he brought up the essential oils, candlelight, reflection etc.

You have to sit there.  I said.  Doing nothing.  

People who take baths seem to think that to truly enjoy bathing you have to sit in the water … like forever.  I am not tall, but my chest is always out of the water.  It gets cold.  I soak a cloth in the warm bath water, but it quickly gets cold too.

I could catch a chest cold.  Not to mention the other alternative: die of boredom.

You haven’t learned how to let go, he says.  How to be one with the water, breathe in the aroma of the oil, enjoy the sensual texture of the water against your skin.

It’s tap water, okay?  Tap water.

You want me to be at one with the water?  Take me to a warm ocean, where the air is fresh and salty, the water buoyant and in constant motion.  My body, floating, swaying with the sea, caught up in the ebb and flow, me at one with the sea responding to the universe. Now that rocks!  Moving in tune with the moon’s gravitational pull … that’s a sensual, soul-saturating sense of unity.

But a four-foot tub filled with tap water?  Come on!

You have to learn to relax, he says.  He means be STILL.  Unfortunately to actually be still is a physical impossibility for me.

I have a familial tremor, which means my body is in constant motion whether I am consciously moving it or not.  It also means my adrenalin is always, to some extent in fight or flight mode, under which circumstances, unless I’m sleeping or comatose, it is pretty much anxiety-producing to be still.

But okay.  I had a bath.  I believe I stayed in that tub for ten whole minutes.  Maybe eleven.

Because I know it’s important to him.  I just don’t know why it’s important to him that I have a bath.  I shower every day.  Sometimes twice a day. I’m a bit of a clean freak.  But it’s important to him that I try, so I’ll fill the tub, light the candles and sit there as long as I can bear it.

Next time?  If he brings in a portable CD player and puts on some Celtic music, I’m going for twelve minutes.

*More about this study can be found at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5509825/

 

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Oct 28 2016
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Adult Aspies and Social situations, anxiety, Asperger's research

Anxiety: the Big Muscle in Aspie Brains?

 

Are we anxious because we unintentionally develop the anxiety muscle in our brains? My recent reading has led me to consider the possibility.

Brain Rules: 12 Principles for Surviving and Thriving at Work, Home and School by John Medina offers fascinating insight into the molecular processes that occur in our brains.

Although Medina is a developmental molecular biologist and research consultant chapters like “stressed brains don’t learn the same way” and “we are powerful and natural explorers” capture and entertain those of us with a more elementary knowledge of neural science.

In the chapter on “Wiring–Every brain is wired differently”, Medina tells us our brain is like a muscle: the more you do the same activity, the bigger and more complex that part of the brain that is utilized can become.

For us Aspies. this poses an interesting possibility.  Can it be true then, that the more we experience anxiety, the larger and more prominent our anxiety receptors become?

Temple Grandin, in her book The Autistic Brain,states that neuro-imaging shwoed her brain had a larger anxiety receptor than “normal”.

And does Medina’s conclusion explain why forcing ourselves to think positive, to build and maintain positive images of ourselves in social situations, can result in having a better day?

Is it because we are strengthening that part of the brain that builds confidence, feeds positive feelings and reduces our levels of anxiety?

If so, let’s go, Aspies!  Let’s exercise the positive neurons, or as Willie Nelson once sang: accentuate the positive and eliminate the negative!

Let us build our brains in a direction in which we are all longing to grow!

Yours truly,

Margaret Jean.

 

 

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Jun 21 2016
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Adult Aspies and Social situations, Asperger's research, Aspergers Reading Resources, writing on the Spectrum

The Canadian Autism Partnership: a website to remember.

In my book, Unforgiving, Memoir of an Asperger Teen, I note that Autism wasn’t really a concern until the late 1980’s.  How wonderful it would have been if my parents and teachers (and I!) could have taken a survey like this one.

I received this survey request from the Autism Society of BC.  The Canadian Autism Partnership Project (CAPP) would like all Canadian persons with or dealing with Autism Spectrum in their family, social or professional life to take the CAP survey.

The purpose of the survey is to assist in identifying programs and services that are currently effective and those that are lacking.  Sounds like a good idea, does it not?

The proposed vision of the Canadian Autism Partnership is:

All Canadians living with autism have the opportunity to lead fulfilling and rewarding lives. This means that they are able to access the necessary supports and services in a welcoming and understanding society. 

The proposed mandate of the Canadian Autism Partnership is:

To mobilize partners across sectors on a national level to accelerate innovation and action to address complex issues affecting Canadians living with Autism.

The proposed foundational statement for the Canadian Autism Partnership is:

Canadians living with autism have the right to:

  • ·        inclusion,

  • ·        understanding and acceptance,

  • ·        respect and dignity,

  • ·        full citizenship,

  • ·        equitable opportunities and access,

  • ·        personal autonomy, and

  • ·        decision-making.

The national ASD working group has identified the following areas of focus for the Canadian Autism Partnership:

  • ·        Early detection and diagnosis

  • ·        Treatment and support across the lifespan

  • ·        Education, training and awareness

  • ·        Attachment to the labour force

  • ·        Community living (includes recreation, leisure and housing)

  • ·        Impact on caregivers (includes health, mental health, respite, and senior issues)

  • ·        Research

To take the survey go to:  www.capproject.ca

To view their website, go to: http://www.capproject.ca/index.php/en/

I know I can count on you!

Yours truly,

Margaret Jean.

Dec 29 2015
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Asperger teens, Asperger's research, Aspies and families

First Year College and Asperger Kids: Emotional Preparation

Dr. Eell’s talk on resiliance seems to speak to how to deal with the negativity Asperger kids’ experience in everyday situations.

In this blog, I want to address the emotional transition from high school and college, an area which can fuel negativity in many students, not just those with Asperger’s.

In my book, Unforgiving, Memoir of An Asperger Teen, I mention in passing that my parents wanted me to go to college, but I couldn’t face it.  I felt so unprepared, I thought it would be a total waste of their money, and in our family, money was scarce.  However, in 1999, forty-five years after I left high school, I started that journey.  I was finally emotionally prepared.  And that’s what this survey studies: the emotional preparedness of first year college students.

An online survey of 1,502 U.S. first-year college students by Harris Poll between March 25 and April 17, 2015 found that new college students faced crucial challenges beyond academics.

Being emotionally prepared for college was found to be key to social and academic success.

Emotional readiness includes being able to care for oneself, the ability to adapt to the new environment, being able to handle negative emotions and/or behaviour, the ability to engage in relationships that are positive.  Students who were not prepared in these ways were generally found to have lower GPA’s.

Generally speaking, students felt that emotional preparation for college was needed in high school curriculums.

Researchers noted some indicators of students who feel emotionally unprepared.  Generally, students who indulged in regular consumption of alcohol and/or drugs, students who wanted to transfer out, and those who took a leave of absence after the first term were among those who felt emotionally unprepared.

These students felt extremely challenged by several situations.  These ranged from managing college expenses to keeping in touch with distant family and friends, making new friends and establishing independence.

Almost half of all the students thought that their fellows had figured out all these issues and were handling them well, which made the struggle feel worse.

Researchers found many students, including a high percentage of African Americans, are silent about these issues. Those who do reach out will often turn to friends or family members.

Students who regularly use drugs or alcohol are more likely to suffer anxiety, stress and feeling overwhelmed.  They tended also to say getting emotional support was difficult.

The researchers point out that the transitional phase between high school and college is a high stress point for kids, and therefore the danger of initial or increased drug abuse is a concern.

 Parents need to be especially “attentive and communicative” during this period.

Half of the surveyed students said they felt they needed more independent living skills. Parents and other influential adults can be significant in helping students develop confidence and independence.

An important resource for parents and students, and school administrators is now available at http://www.SettoGo.org.

About the Survey. Survey respondents were students 17-20 years old, graduated from high school, are in the second term of their first year at college, and attending at least some classes in-person at a 2- year or 4-year college. For complete survey methodology, including weighting variables and subgroup sample sizes, visit http://www.SettoGo.org or email info@jedfoundation.org.

For more info please see: http://jedfoundation.org/press-room/press-releases/first-year-college-experience-release.

Hope this helps!

Yours truly,

Margaret Jean.

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Aug 30 2015
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ASD and Aspergers Resources, Asperger's research, Aspies and families, Aspies parenting, Autism Spectrum

Autism Spectrum Disorder: A Parent’s Guide

I’ve come across a terrific book for parents of children on the autism spectrum, or kids with Aspergers.  I wish my parents had it when I was growing up!  But as you’ve undoubtedly read in my book Unforgiving, Memoir of An Asperger Teen, in those days no such guide existed.

Today’s parents have a huge advantage in raising children on the spectrum.  There are many resources available now, and one of them is this book whcih combines the expertise of three PhD’s, Ozonoff, Dawson and McPartland, A Parent’s Guide to High Functioning Autism Disorder–How to Meet the Challenge & Help Your Child Thrive is informative to say the very least.

Published in 2013, the book discusses research and developments including significant changes from the Diagnostic & Statistical Manual of Mental Disorders IV (DSM-4)  and the current diagnostic manual–DSM 5. The authors specifically address how these differences may relate to your child’s diagnosis.

The book is divided into two sections:  Understanding High Functioning Autism Syndrome Disorder (A.S.D.)which includes history and diagnostic and research approaches, and Living With High Functioning A.S.D.

Both sections contain significant information on the syndrome itself as well as its various implications on the life of a child and their family.

While the book is obviously directed at the lay person, I would not say it is light reading.  Wisely, the authors use anecdotes from recent case histories to illustrate the application of much of the information.  These anecdotes along with some more personal notes make the book very readable.

The reference section alone, 15 pages of book titles, CDs and Websites is worth the price of the book.

All in all, its a great resource and I heartily recommend it for reference purposes.  Look for it in the bookstore, or in your local library.

Yours truly,

Margaret Jean.

 

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Aug 07 2015
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Asperger's research, autism research

MSSNG–Crucial Project Collecting Data on Autism Spectrum Disorders

https://www.mss.ng/film

Click on the link, then click ‘play’ to see the film.

Hey, Aspies!  There’s a ground-breaking autism research project and you can be a part of it!

MSSNG is a groundbreaking collaboration between Google and Autism Speaks to create the world’s largest genomic database on autism.

By sequencing the DNA of over 10,000 families affected by autism, MSSNG will answer the many questions we still have about the disorder.

T​hanks to the Google Cloud, this vast sea of information will be made accessible for free to researchers everywhere.

The greatest minds in science from around the world will be able to study trillions of data points in one single database.

Our pilot program of 1,000 whole genomes has led to new discoveries about the disorder.

With over 10,000 whole genomes and the help of the global science community we can far outreach what has been accomplished so far. MSSNG will identify many subtypes of autism, which may lead to more personalized and more accurate treatments.

For questions about MSSNG, please contact us at info@mss.ng or call (646) 385-8593.

 To learn more, go to https://www.autismspeaks.org/

Yours truly,

Margaret Jean.

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