Monday, October 16, 2017

Do People with Asperger’s syndrome feel pain?

In movies and television shows, characters with Asperger’s syndrome are often portrayed as feeling very little emotionally or physically. It’s also quite common people to suggest that a character who shows little emotion or sensitivity to have “Asperger’s-like” traits. 



In Star Trek, there are characters like Spock, Data, Seven Of Nine and the Doctor who, while not "Asperger's" as such are often referred to as "Asperger-like" in their behaviour.   In the big bang theory, Sheldon has the most “Asperger’s-like” qualities and of  course, there’s Doc Martin.

While for the most part, these characters aren't immune to physical pain, they're shown to have increased levels of tolerance -- and when it comes to mental pain, they're often depicted as "unaffected".

There’s clearly a perception out there that people with Asperger’s often feel “no pain” or “reduced pain” but how accurate is this?

Nobody feels “No Pain”

To be clear, nobody feels “no pain” unless they don’t have a fully functional nervous system. Some people clearly feel physical and/or emotional pain more acutely than others and some people respond more loudly to such pain.

Much like a child who reacts loudly to a needle which has yet to prick their skin, a loud response doesn't necessarily indicate actual pain. By the same token, a quieter response should not necessarily indicate less pain.

Some individuals feel certain types of pain more acutely than others, while other individuals may feel it less. It's not uncommon for a person with a Sensory Processing Disorder (SPD), a common co-condition with Asperger's, to have both reactions to different stimulii, perhaps feeling the pain of a loud noise while not feeling the pain of a pinprick.

Unless we are the individual in question, our general comprehension of their level of pain is based purely on our perception, which in turn is based on what they say or do and our ability to read any non-verbal cues.

Of course, if you’re dealing with a person who is introverted, then all communication, including a lot of emotional communication, from that person is suppressed in comparison to an extrovert.

People with Asperger’s often don’t express emotions in the same way as neurotypicals. Sure, the "ouch" response is more or less the same but sometimes the facial expressions simply don't match the message. 

Emotional Pain

People with Asperger’s syndrome seem to suffer a great deal of emotional pain. There is evidence to suggest that the levels of depression and suicide amongst the Asperger’s community may be higher than it is in the overall neurotypical community.

People with Asperger’s often find it difficult to communicate with others under normal conditions, much less under deeply emotional ones. They often display conflicting body language and struggle to be understood. It’s also quite common for people with Asperger’s to fail to realise that the emotion is affecting them -- at least, not until it’s too late.

For this reason, it’s important to keep tabs on yourself if you have Aspergers -- or your dependents if they are the “aspies” in your life. It’s difficult but you need to talk about emotions and the best ways to express them. If a person you know has been involved in traumatic circumstances, you may want to check how they are feeling.

You’ll need to do this more than once as their feelings will change as they put distance between themselves and the circumstances. The responses won’t always improve with time.

The best way to do this is to ask very direct questions; so, instead of “How are you feeling?” try;


  • Are you feeling a little overwhelmed?
  • Do you feel like you need some help, is there something I can do?
  • What do you think would cheer you up? 


People with Asperger’s experience emotional pain just as much, often more, than neurotypical people.  It’s just not so easy to detect. 

Physical Pain

Physical pain and Asperger’s is a strange thing. It’s not that people with Asperger’s can’t feel it but rather that their preoccupation with special interests or general daily life can blind them to the sensations.

It’s quite common for a person with Asperger’s syndrome who is obsessed with the computer or computer games to sit there for days at a time oblivious to cramps, muscle pains and tendon issues. It’s also one of the reasons why they often fail to seek medical attention before problems get out of hand.



When people with Asperger’s get involved in sports or exercise, they often put so much time and effort into training that, while they become very good at it, they also find themselves increasingly being injured due to muscle overuse.

Pain is an important sensation which alerts our body that we need to take a break from a stressful activity. If you continue to push past pain or if you ignore pain, you significantly increase the risks of a worse injury. 

Give attention to Pain

People with Asperger's most certainly feel pain but for various reasons, they are less inclined to dwell on the pain or to communicate about it.  Untreated mental and physical pain can be damaging.

People with Asperger’s syndrome and those who care for people with Asperger's need to monitor their levels of pain and regularly question whether or not they are actually feeling pain in order to take better care of themselves. 

Sunday, October 1, 2017

Life Rules: Behavioural Phrases to Live By

Kids with Asperger's work best with rules and lists to follow. This applies in more or less every aspect of their lives. It's major part of their development and as a parent, it's up to you to help your kids to learn how to make rules and lists for themselves. 

I've spoken about lists before, particularly in an article over at Special-Ism and of course, I've talked about rules here on LWA before.

Today I want to talk about more general rules that you can use to help your kids get more out of life. 

Life Rules

To be effective, life rules need to be general. For example, "Always look both ways before you cross the street" is a great life rule, while "Remember to look both ways before you cross from the bus to school" is not. It's too specific.

Life rules also need to be concise because even with repeated drilling, your kids aren't going to remember long and convoluted rules.

Finally, life rules need to be self-explanatory -- or at best, you need to constantly go over the definitions. For example, the life rule "Don't talk to Strangers" isn't very self-explanatory and it's a problematic rule for kids with Asperger's. 

How do you determine who is a stranger?  Why is it acceptable sometimes?

I can remember experiencing a whole lot of issues with the "don't talk to strangers" rule when I was a kid. I remember trying not to talk to strangers and having them get quite frustrated with me. This was particularly problematic when an elderly person would approach me in the street for directions or help. I'd often help them out, but would do so in complete silence.

Not all Life Rules are Good

You're probably already familiar with life rules from your own upbringing but not all of these are good ... in particular, many of the rules from my childhood were poor and even sometimes downright dangerous.

It won't bite you if you don't annoy it. 

This was a terrible life rule from my childhood. We live in Australia where just about everything bites or stings you.

It certainly helps if you don't annoy animals but it doesn't guarantee safety. Over here we have sharks and stingers which few people actually try to annoy.

A good life rule should be about you and your behaviour, rather than a prediction of the behaviours of others.

It Costs Nothing to be Nice

This is my absolute favourite life-rule and it's probably the main piece of advice that I'm constantly reiterating with my kids. Essentially this rule is in place to remind my kids that being nice to people should be their "default state" even if the person they're interacting with is not nice.

Of course, there are still Grinches in the world and sometimes, though in my experience rarely, this backfires. I've found that angry people often back down if you're nice to them but some people are always angry - I'm still nice to them. It's a win-win situation.

There's nothing that riles up an angry person more than the idea that their angry attitude is having no effect. Smiling at an angry person will always affect them more than shouting back. 

Usually being nice to others will mean that they'll be nice to you in return. Sometimes you can change a person's entire day with just a few kind words particularly if a person is struggling with depression.

I've reminded my boys that people are generally more attracted to people who are smiling. Anyone thinking about a future partner is inclined to think, "he looks happy, that's what I want in my future".

It also means that occasionally shop-keepers will give you better service.

If you're not convinced that this works, try buying an ice cream whilst being angry to the server and one while you're being nice -- and compare the size of the ice creams.

I also use this rule to teach my boys how to look after other people, for example opening the disabled access for people on the bus and helping others with their shopping trolleys.  It's not about seeking reward, it's about brightening the days of others and making the world a better place to live in moment by moment.

Everybody is Different - and that's Great

This is another of my favourite life-rules. Essentially I encourage my kids to embrace individuality and diversity with open arms.

I'm not saying "and that's okay", I'm saying that it's great. 

For me, it's important that my boys don't shy away from the idea that people are different but that they also go further than simple acceptance.

I want them to think nothing of having friends who are different and openly approach a person with visible differences without fear or prejudice.

What a boring world it would be if everyone was the same. 

Everyone should be treated Equally and Fairly

This life rule goes more or less together with the "everybody is different" rule. You'll notice that I haven't said "all men are equal" because that could lead to gender misunderstandings.  I've also not said that everyone IS equal because we're talking about what should be which isn't necessarily what "is".

Finally, I've added the word "fairly" to the end because equal treatment isn't always fair treatment. For example, equal treatment would mean that a short-sighted person would get the same seat at an event as everyone else. Fair treatment would mean that they get a seat which gives them an "equal chance to see".

Smaller Everyday Rules

I could go on forever with these rules but I'm sure I've given you the general gist of the idea. I just wanted to touch on some of the smaller life rules that relate more to specific interactions.  

Don't turn up anywhere empty-handed 

This is a life rule that my wife instilled in me when we were just going out. Somehow it got missed during my transition to adulthood. Essentially it relates to visiting people, regardless of whether it's at home, in a hospital or at an outing.

If it's a planned visit, bring something; food, wine, flowers or some other small form of appreciation.

Remember that the host has usually gone to a lot of trouble to have you over and their job doesn't end when you leave, there's still the post-visit cleaning to be done. Make an effort to show them that you appreciate their "efforts".

Everyone is entitled to their Opinion and you can "Agree to Disagree"

What a wonderful place Facebook would be if only people could follow this simple rule.

Of course your opinion matters but at the end of the day, life and friendships come first. It's not necessary for you to force others to your way of thinking.  It's possible to disagree with someone and still be their friend. Sometimes you just have to agree to disagree and then "drop the subject".

Of course, it's not always possible, particularly if you're disagreeing with something that restricts the freedoms of others but that's the price we pay for freedom of speech.


People with Asperger's thrive with lists and rules, so take the time to make a list of "life rules" and start instilling them while they're young. 

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.