Friday, September 15, 2017

Star Wars Identities -- and how Children with Asperger's are more than meets the Eye.


A few weeks ago, my boys and I visited a Star Wars exhibition in the millennium dome, London. It was called Star Wars Identities and it was very interactive and thought provoking -- and it made me think about Aspergers Syndrome. 

Essentially the exhibit followed the similar but wildly divergent paths taken by the characters of Luke and Anakin Skywalker while giving us "nerds" a chance to look at memorabilia. 



There were a bunch of stations, about a dozen in all, where clips from the films were used to explain internal and external influences and participants were asked to make their own choices by voting with some special wristwear.  The result was that at the end of the exhibition, you would have created your own unique “Star Wars Identity”. It was all very educational.

As usual in these situations, my mind turned to thoughts on Asperger’s and how it related to what we were being shown.

Asperger’s is only a small part of your “self”.

One of the key points of the exhibition was that there are many factors at play in the way our lives turn out.

Autism is very much a genetic factor but even “identical” twins will grow up differently depending upon other factors. The exhibition covered the following factors, not all of which apply to humanity; species, genes, parents, culture, mentors, friends, events, occupation, personality, and values.

Mentors and Friends

In the Star Wars universe, mentors such as Qui Gon Jinn, Obi Wan Kenobi, Chancellor Palpatine and Yoda all play a significant role.  This is true of people with Asperger’s too. Mentors appear at all stages of life and can be relatives, teachers, friends and work colleagues. Mentors generally step outside the boundaries of normal relationships and bring a lot of special social advice to situations. The relationship between the mentor and the “student” isn't always smooth but while disagreements may be common, mutual respect generally prevails.

Friends are also important when it comes to our kids with Aspergers. Too often, as parents, we don't even know if our children have "friends" and in fact, quite often our children don't know either. Instead of asking "who are your friends?" or "who did you play with at lunch time?", you're better off asking your children "what did you do at lunch time and who else was there?"  When the same names start cropping up over and over again, you know they're likely to be friends.

Parenting Styles

Upbringing also shapes the development of people with Asperger’s syndrome. In the Star Wars exhibition, they contrasted the parenting styles experienced by Luke and Anakin. Luke was very much “under the thumb” of his aunt and uncle and was restricted in his personal pursuits in favour of his chores, Anakin, despite being a slave, was given free reign  - even to the point of being able to choose to separate from his mother at an early age. I'm not suggesting that if you give your children freedom, they'll become "sith lords",  simply that different parenting styles have a major effect on the way your child behaves as they enter adulthood.

Values

My children go to a Catholic school but this isn't because we're huge fans of religion. It's because we feel that that the values promoted by the Catholic school systems in Australia are more consistent with the values that we, as their parents will share. I often say also that I want my kids to know how to live within (and fight from within) an oppressive system -- that's no joke.

I'm always encouraging my kids to question the values they are taught at school. A good example of this is the recent gay marriage debate in Australia -- but that's a story for another time.  

Events (and Crisis)

It wouldn't be Star Wars without a discussion of the basic crisis endured by the characters. The main point here is that we are in part shaped by the things we endure. The big things, such as sudden deaths in the family are recognised as PTSD today but the smaller crises play a part too.

I know that children on the spectrum who experience a loss of toys, for example due to theft or natural disasters, will often develop a neurosis about sharing or toy-protection.

Personality

Each of our kids is born with a different personality. I strongly believe that there is some unknown, possibly genetic, factor at work here because if there wasn't, my two boys would have more or less identical personalities. Instead they're "chalk and cheese".

Why is this Important?

I personally felt that the Star Wars identities exhibition taught my kids a lot about who they are and why they make the choices they make. It was a lot of fun, which more or less guarantees that they paid attention but at the same time, I felt that it helped them to understand that "Asperger's does not define them". Lots of different things combine to define them.

btw: both my boys choose ewoks as their species but my eldest turned to the dark side. 





Tuesday, August 8, 2017

Book Review: Meet ME Where I'm At by Cindy Best and Joyce Shor Johnson

Meet ME Where I'm At 
by Cindy Best and Joyce Shor Johnson
Published by Future Horizons

Meet me where I'm at is a very unusual book. It's half picture book and half workbook and I don't mean, the first few pages are one and the rest are the other.  This book seamlessly blends both at the same time.

The general idea of this book is to get children with special needs to let others around them know exactly "where they are at".

Instead of expecting children with special needs to stretch to meet their parents, teachers and friends on levels where they can't function well, this book aims to encourage them to advocate for themselves and ask others to meet them at their own level.

It's a very interesting concept which I've seen in adult work before. This is the first time I've seen this agenda come though in a book aimed at kids - and it's a very welcome move.



The main pages in "Meet Me Where I'm At" follow a standard template of;



Just because I do (some undesirable behavior) doesn't mean that I don't do  (desired behavior) .

meet me where I'm at 

When I'm feeling (specific emotion or mood)

I sometimes need to do (specific type of response)

The book covers topics such as not meeting the teacher's gaze when they talk, hitting, not writing things down, interrupting, leaving loud classrooms, being empathetic and resisting change.

Each of these sections has areas where the child is encouraged to describe the things that work for them. It's a great self-advocacy starter. 

It concludes with a reminder that all people are different and that everyone has value.

Meet Me Where I'm At by Cindy Best and Joyce Shor Johnson is published by Future Horizons and is available in paperback from Amazon, Booktopia and GoodReads. There's also a facebook page where you can talk about the book and make suggestions for further topics.

Honesty Clause; I was provided with a copy of this book free of charge for review purposes.

Tuesday, August 1, 2017

Book Review: In My World by Jillian Ma, Illustrated by Mimi Chao

In My World
Written by Jillian Ma
Illustrated by Mimi Chao
Published by Future Horizons, 2017

In my world is children's picture book that carries a very touching message for adult readers. Each page contains only a single sentence and a beautiful illustration and it's easy reading for the early readers. The words are simple and they rhyme, which makes this a perfect storybook. 

The general format of the book is that there's a little boy who keeps saying "In my world, I can ...." and following this up with claims which at first seem a little outrageous, particularly if you take the fantasy elements (dinosaurs and dragons) of the illustrations into account.



The text however is well grounded so that even when the picture shows the boy with his friend riding a dinosaur, the text simply says that he can "adventure with his friend".  It's all very achievable and clever stuff.

...or is it?

Most of us take these things for granted, playing with friends, being seen and heard, riding in a plane, using the swings at the park, sharing food, toys and interests, being calm and being appreciative of love.



This is an amazing book and it's a must-have for anyone who has young children who interact with people with autism. It's hard to review picture books without giving the plot away, so I'm afraid I'm going to have to spoil the only "spoilable" moment - rest assured, you can skip the rest of this review and simply go out and buy the book. It's well worth it. 

I started reading this book from the front to the back. I don't peek. I like to let things unfold as the author intended. My heart sank when I hit the page that simply said;

In your world...  I have Autism. 

Even the page itself is dull, dreary and drained of colour. Our brightly coloured boy is reduced to a one-dimensional caricature of himself, outlines only. The page hit me very hard, certainly harder than I thought a picture book could.

There's no problem. This book isn't going to upset a child but it is going to pass a very different message onto an adult. The boy ends by reminding us that it's with our help that he's able to do the things he does in his world but to me, it's the words of Mimi Chao's dedication and the front that I hear;

"Dedicated to those who long to be understood"
- Mimi Chao.

To me, it reads like the boy feels like he's doing these things in his world already and that people outside of his world are only seeing "autism".  Of course, I'm probably biased about these things and you always take away from a book a little of what to bring to it in the first place. 

This is an absolutely brilliant book with the some of the most gorgeous illustrations I've seen in a children's book in a long time. If you've got a library of picture books or if you've got a youngster on the spectrum, then this is the book you need to have. 

In My World by Jillian Ma with illustrations by Mimi Chao is Published by Future Horizons. It's available in paperback at Amazon and Goodreads. Mimi Chao's blog post on the backstory of the book is also well worth reading. 


Honesty clause: I was provided with a copy of this book free of charge for review purposes.

Sunday, June 25, 2017

Finding Solitude in Crowds - Asperger's and Alone-Time

People with Asperger’s syndrome need “alone-time". It's critical to their continued functioning. 

Without a chance to calm down people with Asperger’s suffer from sensory overload which can make them very irritable and prone to meltdowns. 

"Alone-time" helps them to recover, particularly if they have been engaged in a lot of social activity.

You could be forgiven for thinking that alone time means time spent in a room by yourself with no distractions.

This is certainly a great way to achieve it however alone time can be obtained in a variety of other ways not all of which are silent. This is particularly important if the person with Aspergers is at school or work and cannot easily find a room to themselves.

Removing Stimuli

Since one of the main reasons alone time is to reduce stimuli, the best ways to get the same effect depend upon removing one or more stimuli from your senses. For example, wearing darker glasses or a hoodie will reduce the amount of light entering your eyes. Wearing headphones can remove the babble of speech or general ambient sounds and wearing a scarf can often reduce sensitivity to odours.

Sometimes just choosing extremely low irritant (ie: very comfortable) clothing is enough to reduce overall sensitivity. 

Reducing Stimuli

Sometimes you simply can't remove stimuli and instead need to find a way to seek "solitude in crowded places" by reducing the general volume of stimuli around you.

An alternative to actually blocking out stimuli is to replace it with more regular or more pleasing options.  This is called "habitation".

Key ways to do this include playing music through headphones. This puts you in charge of your ambient environment. While it doesn't necessarily drown out external sounds, your brain follows the familiar beats and this makes it easier to ignore the other sounds around you.

If you have an easily overloaded sense of smell, chewing mints or gum can serve as a form of habitation for these sensitivities.

This is why many schools allow the chewing of gum or the use of headphones in exams.

Sometimes sports, particularly low contact (with others) options such as skating, running, aerobics, bowling and weights can create a "touch habitation" effect where the body becomes less aware of touch sensitivities while the exercise is in progress.

Choosing Low-People Options 

Another way to reduce sensitivity and get alone-time is to engage in non-people activities.

These could be individual activities like computing, pets, reading, crafts or television.

They could also include activities such as swimming, diving or climbing which include groups of people but have very limited options for contact and communication.

Alone time is available even in the most crowded of places. You just need to know how to find and use the opportunities. 


Sunday, June 4, 2017

Negative Emotions are Transferable - Avoid them and Protect Yourselves


One of the more interesting realisations I've reached in the last couple of years is that negative emotions, such as depression are actually transferable feelings.

If you spend a lot of time with very depressed people, watch a lot of depressing news stories, or read a lot of depressing attention-seeking posts on Facebook, you'll eventually start feeling depressed yourself.

It's subtle because the spread of negativity occurs slowly over time but it's there and the changes in you can be detected by neutral people around you -- especially if they’ve not had a lot of recent contact. Unfortunately for you, being on the “inside” means that you’re probably going to be the last person to realise.

This is really important for us, as carers and parents of children with differences and/or as people with differences ourselves. It's a great thing to be empathetic but we have to remember to protect ourselves too. You’re not going to be as much use to those under your care if you’re fighting depression yourself.

Online Attention Seeking Behaviour 

We all have at least one friend who seems to attract every problem imaginable.Chances are, you’ll know several.  You'll usually find yourself wondering what they could possibly have done to “get the universe mad at them” and bring such a run of bad luck down on themselves.


 Attention-seeking facebook friends never miss a post when a family member is in hospital or going to the see a doctor. The posts are nearly always far more urgent and emotional than the problem itself. They post emotional stories on the birthdays and death-days of everyone who has left their lives, including their pets and they somehow manage to make every news story about them; for example making a big deal out of a local fire that has destroyed a shop that they may have visited as a child.

There’s nothing wrong with this kind of behaviour and it’s not intended to be malicious. It’s just that some people feel things more strongly than others -- and some are able to radiate those emotions to touch everyone around them. 

It doesn’t help that the online attention seekers tend to react badly to poorly constructed comments, push the boundaries of friendship and may even allow feelings such as jealousy (over who has the "worst news") to interfere. These traits increase the likelihood of conflict and can cause the wrong reactions in others.

The main problem however is that reading frequent negative posts can have a very negative effect on empathetic people. Particularly people on the autism spectrum. 

News and Television

The other problem is the general media. Television and print and online media grow their audiences by covering emotional stories. This includes stories of people being harmed or starving in war-torn countries, animals in danger from extinction or negligence, people living in poor conditions and even historical stories of torture and pain.

Even the advertising of today often contains deeply emotional messages designed to provoke a response from you.

All of these stories seek to flash images, sounds and ideas at you that will create an emotional response. Sometimes they seek to shame you into buying a product or supporting a cause. Sometimes it’s a means of instilling fear to affect one’s political, economic or social choices. In the case of history television, quite often the aim is to reinforce guilt over the mistakes of the past to ensure that they aren’t repeated.



Even today’s light entertainment shows on cooking, dieting, holidaying and home renovations have turned into emotional contests where there is one clear winner and several “damaged” losers. Our media has become a place where ridicule and emotional abuse are commonplace.

Again, it isn’t all bad and the media still fulfils an important role but it’s important to note that the long term effects of constant exposure can be quite damaging. 

Autism and Empathy

Not long ago, it was believed that people with Asperger’s syndrome and autism were without empathy. The main reason for this was that these people often reacted differently to others in emotional circumstances. For example, they would laugh during traumatic or painful events or they would fail to smile during happy ones.

It’s only been fairly recently that we’ve reached a point where adults with autism were able to connect with each-other and the rest of the world in large groups online. In that short time, we’ve reached an understanding that people on the spectrum struggle with self-expression. They don’t always understand when and why others are sad and they have difficulty conveying their own feelings.

A person on the spectrum may smile during a funeral because they’ve already accepted that a person has passed or because their relationship with that person was not as strong as others. They may be remembering funny things that the person did and this will bring a smile, not a tear. It doesn’t mean that they didn’t love the person or that they won’t miss them terribly -- and it’s unfair to judge the reactions of others purely on face value.

The same person may become lost in a sea of tears during historical TV - or in fact, may be unable to watch at all. For them the pain and emotion of the event is very real and “new”. They may be confused as to why others can watch the same show without being affected. 

Protecting Yourself and Others

The most important thing to remember is that people with autism are very much affected by emotions and often these effects aren’t always visible. 

If you’re the parent or carer of a person with Isms, you need to keep a close eye on what is being watched and and what is being conveyed by friends to ensure that negative emotions such as depression are not being transferred.

If you have autism yourself, you need to frequently ask yourself; “How do I feel and Why do I feel this way?” If you think that outside influences are leading you into depression, you need to limit your interactions with them for your own protection.

This may mean that you need to change your viewing, reading, listening and talking habits. You may need to unfollow or hide friends who try to entice you into their negative worlds and you may need to avoid certain people altogether. 

"see no evil, hear no evil, speak no evil" - sometimes following the wise monkeys is a good choice.

I’m not sure if positive feelings are transferable but I guess they probably are. If all else fails, perhaps finding some positive people to follow or doing some “positive activities” might help too.

Saturday, May 27, 2017

Book Review: Aspertools by Harold Reitman M.D.

Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders and Ñeurodiversity
by Harold Reitman M.D. with Pati Fizzano and Rebecca Reitman
2017 Souvenir Press Ltd 

Aspertools is an unusual book, coming out, proudly displaying references to Asperger’s Syndrome in a post-DSM V world.  That's right; Asperger’s is no longer recognised in its own right but is folded into the general autism spectrum.

Aspertools takes a very different approach.  It's not necessarily a book directed at people with Asperger’s or even those on the general autism spectrum. This is a book that aims at the neurodiverse; the people who different somehow.  Those whose differences have neurological reasons.

It's a great premise and Harold makes it clear from the outset that not all chapters will apply to all people. Just read the book and use what you learn from the chapters that do while ignoring those that don't.

As his daughter,  Rebecca says;  “Brains are like snowflakes - no two are alike”

Aspertools was an absolute pleasure to read with the consistent formatting, great headings, clear text and short chapters making it a book that can be easily picked up or put down at a moment's notice. Perfect for today's busy world.

Each chapter is structured into;

  • A helpful hint (short explanation of the issue)
  • A principle (generally a rule or two related to the issue)
  • Imagine you're an Aspie (the situation from a different point of view)
  • An action plan (ways that you can address or modify the issue)
  • Tip from Pati (the point of view of an experienced special needs life coach)
  • Thought from Rebecca  (Harold's adult daughter's perspective on things)


The chapters cover a variety of topics including; dealing with anxiety, hyper-senses and meltdowns, breaking up complex tasks, routines and transitions, social interactions and executive functioning.

It applies to a wide age range but I feel that it's at its best when dealing with kids and young adults from their teens and upwards.

I particularly loved the sections on “Imagine you’re an Aspie”. While I don’t personally have to imagine this, I’ve spent a lot of time trying to explain my differences to others. Harold does this in a much better way than I’ve seen in any other book.

Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders and Ñeurodiversity by Harold Reitman M.D. with Pati Fizzano and Rebecca Reitman is available from Amazon in Kindle or Paperback format.

Harold is also the writer/producer of the movie, The Square Root of 2 which is about his daughter Rebecca and was filmed before her Asperger’s diagnosis. It looks to be very interesting.


Honesty clause: I was provided with a copy of Aspertools free of charge for review purposes.

Tuesday, May 16, 2017

Book Review: Joel Suzuki Volume 3: Legend of the Loudstone by Brian Tashima

Joel Suzuki Volume 3: Legend of the Loudstone 
by Brian Tashima

In recent years, it has become more common to add characters with autism to mainstream stories. It's partially about inclusion but it's also the fact that people on the spectrum tend to make more interesting characters.

The Spectraland saga is a young adult series that has been based, from the very beginning, around two characters; Joel and Felicity both of whom are on the autism spectrum.

Spectraland is about two young adults from Earth who find themselves in a fantasy world where their music translates to magic. You can read my reviews of books one and two here. If you haven't read the first two books, in the series, you really need to read them first.

The third book in the series moves away from Spectraland to an adjoining region, the "mono realm" where conformity is a way of life and a rebellion is brewing.

It's interesting to note that while the first two books in the series felt very "fantasy" this one feels like it has a dash of sci-fi and at times, it has a similar feel to the last Hunger Games book.

With this book, author Brian Tashima has renamed the series to "Joel Suzuki". It's a good change and one that feels more consistent, and is much easier to say.

Brian has big plans for the Joel Suzuki series and there's a great interview with him on the spectrums magazine website. There's now a fan club with access to special materials and Brian's Joel Suzuki site at www.joelsuzuki.com is also well worth a visit.

The books are full of great “young adult” moments and as the story progresses, you are privy to Joel’s thoughts on relationships and his interpretation (and misinterpretations) of the behaviour of characters around him.


As usual, Joel and Felicity’s differences are "Front and Centre" but without other "humans" in the story to compare with, they're absolutely "normal".  Their differences are very much a part of their characters rather than being traits that are constantly being discussed. The story moves around, clearly influenced by their perspectives and gifts.

The Joel Suzuki series is a great young adult series and well worth a read.

You can get these books at Amazon in Kindle and Paper format.


Honesty clause: I was provided with a free electronic copy of Joel Suzuki Volume 3: Legend of the Loudstone for review purposes.