Saturday, November 18, 2017

The Asperger's Special Interest's Impact on Making and Keeping Friends

When I was younger, I didn't really "make friends". They made me. Come to think of it. Nothing has really changed. It's not that I'm an unfriendly person, it's just that I can never figure out the boundaries between friends and acquaintances. To me, people are just people and I generally respond to them how they respond to me. 

I don't think that I'd have any friends, only acquaintances, if people didn't persist in making friends with me - and  I'm very grateful for their friendship and support.

Bonding over Star Wars

When I was in primary school, I had a birthday party. My parents invited a small group of children and I remember having difficulty knowing who to invite. The list started off with the one friend that I actually had, plus any kids who had invited me to their parties at some point (bad luck if you didn't have a party).  From there, I think the group would have been all girls if my parents hadn't insisted otherwise. I was never any good at sports and I always found that girls, with their interest in just "talking" were more my style.

My Birthday Party in 1977. I'm the photogenic one with a cup on my face.

One of the presents I received at this party was a Luke Skywalker figurine.

All of the kids ooohed and ahhed over that figurine but at the time, I really had no idea what it was. I just knew from their reactions, that it was somehow special.

I took the figurine to school and one of the kids wanted to play with me. He brought his own figurines in and I started to learn the names of the characters and I eventually managed to get a couple more.

I didn't see the actual film until much later.  In fact, I know we were the last in our area to see it because they were removing the posters from the cinema when we walked out.

I think I played with this boy and his Star Wars figures at lunchtime at school for months. They were probably the happiest days of my primary school years. I continued to play with my Star Wars figures for years (and yes, I still have them but no... I no longer play with them).

After about three months of play, my new found friend suddenly started talking about trucks. I couldn't think of any trucks in Star Wars. Sure, there was that big Jawa thing but that was it. I think I mostly ignored the conversation for a couple of days and just continued playing with Star Wars figures. In the meantime, my friend stopped bringing in his Star Wars figures and started bringing trucks. I never brought any trucks in. I don't even know if I had any or not.

Eventually, the disconnect was significant enough that my new-found friend wandered off to play with other kids who liked trucks and I was left to myself again. I kept bringing my figures in for a week or two but he never came back and I couldn't be bothered getting them out to play by myself.

I really missed him when he was gone and I remember trying to work out how to get my friend to come back. Sadly he left the school forever a few months later and that was that.

Learning to Change Conversational Channels

In my later years of high school, I ended up with a small group of devoted friends, at least some of whom were on the spectrum. Being older, they were able to convey their conversational issues. For example, we'd often get told "you guys just talk about computers all the time".

I honestly didn't pick up on this. Yes, we did talk about computers most of the time but saying that was like saying "hey, the sky is blue!".  I didn't realise that some of the members of my group were trying to tell us that they wanted to talk about other things.

Eventually my mother heard someone say it and when the kids were gone, she explained what the problem was. My mother was never one to give up and she continued to explain the problem weekly for what seemed like years.

It's not a bad thing because eventually I understood -- and more importantly, I understood in time to keep my friends. 

I started to try to monitor the conversations and when I realised that we were talking about computers for too long, I'd try to switch the conversation to something that everyone could participate in. We ended up with a fairly short list of topics; movies, TV, religion, computers, school and sex but it worked and it allowed the group to function without alienating people from the conversation.

More importantly, having to converse on other subjects broadened my horizons, enabling me to learn more about new subjects, find new interests and get on with people well into adulthood.

Parenting

Fast forward to the future and now, as a parent, I'm finding myself having to explain to my kids why they need to diversify the topics that they talk about. It's funny because I'm a fairly technical person with two tech-obsessed boys and you'd think we'd all be on the same wavelength.

We're not. I work with computers all day now and the last thing I want to talk about when I get home is computers. My eldest son seems to have a special interest in mobile phone technologies and he'll go on for hours if you let him about the latest phones, their operating systems and their technical capabilities. My youngest son finds this boring. He's into computers and will talk about motherboards, and gaming and the capabilities of various graphics cards.  It's amazing to me that their topics can be so similar and yet so "boring to each other".

I'm always trying to teach them to talk TO each other, not AT each other but it's harder than you'd expect to get the point across and to change these bad habits. 

We've found that as a family, doing things together, such as vacations, outings, watching movies and telling jokes around the table increases our common ground. It means that we have things that we can talk about that we can all relate to. 

I think the way forward for my kids and their friends is to increase the number of "common ground" activities that they're involved with and build up shared memories while at the same time, constantly reminding them to switch topics regularly and share the conversation with others.

Sunday, October 29, 2017

It takes two, two sides to every story (Relationships and Aspergers)

It seems strange to say it but I’d never heard of Katy Perry until she hit the headlines for dressing “inappropriately” on Sesame Street back in 2010. Even then it was at least a couple of years before I listened to her music properly. 

Apart from her music, which I now love, I’ve also got another reason to really like her as an artist. She’s always defending those who are different and in 2012, she did an awesome duet of Firework (an amazing and empowering song in its own right) with Jodi DiPiazza a young girl with autism. I tried to find this on youtube again but sadly the full version isn’t available now. 

Rest assured, it was incredibly moving.

Lyrics with Meaning

One of the great things about Katy’s songs is that a lot of them, though obviously not all, have deep meanings. I was listening to the song, “it takes two” recently and I was thinking about the message within it and how it applies a lot of common sense to couples in relationships.

I was also thinking that it’s a good way for people on the autism spectrum (or in a relationship with someone on the spectrum) to be mindful of their own faults as well as those of their partners.


You can see the music video for the song here and you can read the lyrics here.

It takes two to Tango

There’s an old saying that “it takes two to tango” and if you’re on the spectrum you could be forgiven for thinking that it refers to the need for a dance partner.  In fact, it means that in any relationship, there are two people “driving” - even if one of them is the “victim”.

It’s very important to realise that while victims in relationships feel trapped, they’re essentially perpetuating a bad situation by staying. If you can’t make it work, if you’re unwilling to seek help or if the help has not alleviated the situation, then apart from certain illegal situations, you can always escape.

If you’re being physically harmed, then it’s particularly important to get out of the relationship.

If you stay -- particularly if you stay and accept your partner’s bad behaviour, then you’re allowing it to continue.

"I’m not that Innocent"

One of the lines in the song is “I admit, half of it. I’m not that innocent”.  As people on the spectrum, it’s very important to realise that if things are going “off the rails” then at least part of the blame has to lie with us. Sometimes it’s our expectations which can be too high, sometimes it’s simply our poor choice of partner. Often though, without realising it, we’re doing a lot of harm to our own relationships.

Some of the ways in which people on the spectrum harm our own relationships include;

Focusing on our special interest to an extent that excludes our partner. 

This particularly applies when our special interests are to do with television, computers or gaming but it can also apply if we involve ourselves so deeply in a sport or a hobby that we’re never home or if we focus all of our conversations around our special interest.


It’s very important to remember that our partners won’t necessarily share our special interests, particularly not at the level of detail that we do.

We need to make time for our partners and for their interests, even if that means scheduling some regular activities.

Applying rules and restrictions to everything.

One of the hallmarks of people on the spectrum is the need for rules and procedures which don’t always make sense. Sometimes we find ourselves subconsciously putting things into order or straight lines. We may for example, find ourselves “avoiding right turns” or certain places because their ambience causes us sensory issues.

While it’s important to look after our senses, it’s also important to remember that our partners should not be subjected to all of our rules. They must be able to make choices for themselves.

Sometimes we have to try to deal with our sensory issues for our partner. 



Weddings, for example, can be sensory nightmares for us but they’re often very important occasions for our partners. We can take steps to reduce the impact that they have on us by wearing sunglasses, comfortable clothing or earplugs but continually cancelling all such events - or misbehaving at them is not healthy for the relationship.

Failing to listen

This is a particularly difficult problem for me. I’ve gotten so good at predicting the things that my wife, friends and work colleagues will say that too often I finish their sentences for them. It might feel like the right thing to do but it’s demeaning. It means I’m not listening properly. Right now, I’m working on this and I’m trying to improve my listening skills but so often I remember only after the damage has been done.

Your partner probably isn’t saying anything about this but that doesn’t mean it isn’t hurting them. Listen, breathe and emote “in their language”. 

Emoting in your partner's language is quite difficult, especially for those of us on the spectrum. We feel emotions strongly but we communicate them very differently. Unfortunately, our way of communicating emotion is often lost of neurotypicals so if they're the ones who are upset, it's best if we can try to convey our feelings in ways that they understand.

Try to cut them a little slack, listen to their ideas and praise them. Give things a try even if you think they might not work. Sometimes it’s more important to be supportive than it is to be right.

Most of all, try to resist problem solving everything. Sometimes people just want a little empathy from you.

Being aggressive

Meltdowns can be a big problem for people on the spectrum, particularly if they have specific hang-ups. In my case, I hate trying to be a handyman because my skills are so poor in this area that I always feel I do more harm than good. In the early days of my marriage, I'd get "cornered into doing jobs" that I didn't feel confident with and something would often get smashed, chipped or crushed because of my temper. My angry shouts and finger-pointing would also do a whole lot of damage to the relationship.

It’s something that I had to work very hard on to find ways to stop the meltdowns from affecting me so badly and to ensure that my partner knew how best to help me.  I also needed to learn how to say "No" when I didn't feel confident. 


"I point my finger but it does me no good"

Of course, the whole point of “it takes two” is that you can only be responsible for your half of the relationship. You can most certainly blame your partner for their actions but unless it leads to change, it’s pointless.

Neurotypicals in relationships with people on the spectrum can cause a lot of problems too. 

For a start, a lot of neurotypical behaviour is too “loud” for us, particularly if we’re introverted. I have a lot of problems when I go to restaurants with my wife. If the food is bad, she’ll get annoyed and let them know. For me, that destroys the mood and ruins the experience.

We’ve talked about this and she’s made a few changes. She still challenges poor service or poor meals but she’s willing to let a lot of things slide. If she does feel the need to “raise hell” then sometimes we’ll collaborate on a bad review and sometimes she’ll confront the management without making things quite so confrontational for me.

There’s a lot of other ways in which neurotypicals harm relationships. Treating their Asperger’s partners like second class citizens is one, as is telling them that they have no emotions or no empathy.

It’s surprisingly common to see neurotypicals discussing the failings of their partners online without even considering how their partners may feel when they read those posts. The same goes for mothers or fathers who discuss their children’s failings. One day they’re going to find them online -- are you sure that you’re keeping your comments respectful?

"Let me be first baby, to say I’m sorry!"

I could go on about the things that neurotypical partners do that affect our relationships but the sensitive places differ from one couple to the next. It’s far more important to learn how to say sorry … and how to actually BE sorry.

Sorry is a very powerful word in every relationship but you have to mean it otherwise it quickly loses its effect. The key to nearly every relationship problem is communication. If your partner is making you uncomfortable or is not meeting a need, then you need to discuss it openly and without blame.

Instead of trying to blame each other, try to find a solution that works for both partners. This means that you have to compromise and sometimes one partner will have to give up something they love. It's important to take turns in compromising so that one partner doesn't always have to give in.

It’s not too late to change.

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.

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.

Monday, May 1, 2017

Introversion and Asperger's Syndrome


Not all people with Asperger's syndrome are introverted, in fact there are many flamboyant and loud people with Asperger's (and that category deserves a post of its own).

I'd venture to say though, that most of the people I've met with Asperger's have tended to be the shy, quiet type. Of course, that might just be me as being shy and quiet myself. 

After all, I'm far more likely to be open in discussions with introverted individuals. 

There's nothing wrong with Introversion 

In western society, it often feels as if introversion is a problem that needs to be “cured” but it's not.

Introverts, particularly those with Asperger's, are often perfectly capable of “acting” extroverted when a situation calls for it. It's important to remember though that it's just an act and it takes a lot of effort to maintain. We often find ourselves feeling more stressed and grumpier after having had to act that way for a while.

Being introverted or extroverted is a personality trait that we probably have from birth but which is reinforced throughout our lives in every interaction we have with others.

As a parent, you might want your child to be more extroverted but choosing to try to change their personality is not a good parenting decision. Your child will flourish best by being themselves.

Life as an Introvert 

Introverts are all different and there are varying extremes and exceptions. Just like everyone with Asperger's syndrome, no two people are exactly alike.

I find that as an introvert with Asperger's my responses to direct questions tend to be slower and more carefully thought out. This causes a few problems because sometimes people don't wait for an answer and often people speak for me. It can be irritating at times because often others don't say what I was intending to say.

Other introvert problems include getting invited to functions, parties or even just family gatherings and finding it difficult to get into a conversation - especially if you don't know anyone else.

I'll often walk to the edge of a group and stand there smiling until I get tired of not being noticed. After doing this with a few groups, I'll just find a space near a wall and keep to myself.

Unless of course, they have pets. In those situations, I usually become the dog’s best friend.

One thing that I have learned to do recently is to scan the room and look for other people in my situation (against walls by themselves or playing with pets or their phones).

Clearly introverts seem to get on much better with other introverts.

Complaints and Help

As an introvert, I'm not keen on drawing attention to myself and I'll often put up with poor service rather than start a confrontation. This often creates friction between my wife and I as she is not one to hold back. In restaurants with poor service, I often find myself looking down at the table and wishing I was somewhere else while my wife chews out the waiter or management.

Fortunately, my wife has now started to learn to pick her battles because poor service is one thing but fighting with staff can ruin a night out.

In any case, if the service is particularly bad (or good), I’ll leave a review and sometimes I'll send emails to head office. My writing is never too shy to tackle the important points.

It's the same deal when I'm out shopping, particularly for appliances. If I go shopping by myself, the appearance of a salesperson asking if I need help usually hastens my exit from the shop but if I go with my wife or managers from work, it's generally the opposite for them. They'll leave the shop if they don't get attention soon enough.

Hero Syndrome 

“Hero Syndrome” is a made up problem so there's no need to look it up. It's the name I give to some of the behaviour mentioned earlier.

My wife often accuses me of "trying to be a hero" but it's just the introversion talking. The crux of “Hero Syndrome” is that “taking one for the team” without complaint makes it easier to accept a problem than it is to interact with a person in order to get it resolved. You could see this as laziness or conflict avoidance but given that I behave this way in situations which are not confrontational, it's more likely to be simply; "people avoidance".

For example; I was recently in hospital and left in a room with a light on with no way to turn it off. I could have buzzed the nurse at any time but instead I simply tried to sleep with the light on. Eventually a nurse noticed the problem and rectified it. My wife was quite annoyed about this but I didn’t want to make a fuss.

Hero syndrome raises its head at all kinds of odd times, for example, when we’re not given the correct meal, or the meal is not properly cooked, when we’re waiting too long for service or when we’re given the incorrect change.

Most of the time, “hero syndrome” simply makes you into a more patient person but sometimes it makes you a victim. Sometimes being introverted can be a real problem. 

Being Loud When Required 

It’s a myth to say that introverts can’t be loud. It just takes a lot of extra effort. Introverts can be great public speakers but not great on small group interactions. They can be experts on specific topics but find themselves unable to interact in small-talk. Introverts can be good bosses too, particularly if they come from a position of strength, such as the knowledge (special interests) and abilities.  

For example, introverts often find communicating via email works better for them or that empowering other staff members to chair their meetings is more effective. If this works, then there’s no reason not to engage staff members in this manner. Quite often, this makes introverts better teachers and mentors than extroverts.

One thing that introverted people and people with Asperger’s often have in common is the need to find solitude after a particularly “social” period. Effective introverted managers do this by organising their time effectively or organising “low social” recreational activities, such as swimming or climbing.

Introverts are simply a different type of person to extroverts and both types are needed in our society. Neither type of personality is particularly advantageous over the other and it doesn’t make sense to try to push your child to be something they’re not. 

Like all personality differences, introversion is most effective when you’re encouraged to simply “be yourself”. 

Monday, April 17, 2017

Doing better than Light it Up Blue


The month of April is “Light it up blue for autism” month. It's the month where we we embrace exciting concepts like autism “awareness” (ah, so that's the word we use to describe “these people”) and autism “acceptance”, (ok, so I guess we can't stone them to death anymore**).

** That's a joke by the way. 

They might have been started with the best of intentions but I'm really not sure that they help as much as they'd like us to think. In fact, it's just possible that they do more harm than good.

It's not Just Autism 

There are a lot of charities around which gear up on certain months. In particular, there are the yellow cancer charities and the pink breast cancer ones.

The various charities collect funds from the sale of ribbons, bears, chocolates and other goodies. The more established of these charities also partner with grocery stores and manufacturers to produce specific items, such as bread in marked packaging, where a certain percentage of the cost is going to the charity.

What is it all for?

One of the biggest gripes that I have with the cancer groups is that they are always giving out free hats or sunglasses. In fact I've been to a couple of charity runs where I saw them giving free branded hats to people who were already wearing hats. How does that help people with cancer or their families? How is that a good use of money?

The other thing that particularly annoys me about the cancer expenditure is that whenever we see advertising, it gives the impression that cancer comes from the beach, while ignoring the message that needs to be sent to all the shirtless guys on building sites.

What would I do?

Of course, it's easy to complain about things but it's much harder to suggest alternatives.

So here's my wish list for “light it up blue”

Education is Key

Instead of spending money trying to to get people to follow a colour, let's try to get some concepts across;

How about some slogans like;

  • AUTISM: If they're covering their ears in your shop, please turn your ambient music off.
  • AUTISM: Those repetitive movements are called “stimming” and they can help us to relax.
  • People with #Autism make excellent workers.
  • AUTISM: Eye contact can be painful. Don't make us do it. We're still listening.
I’d love to see how much education can be done in just one-liners - and at low cost.

Got a message? Maybe a bumper sticker would be a good way to get it across -- and you can still light it up blue if you really need to.


Low cost means, let's not make billboards or hats or T-Shirts. Lets use the free tools like Twitter and Facebook and lets use our connections to get mentions and interviews on the radio.  What's wrong with getting a large group of kids with autism together to make a big sign in the sand on the beach.

Don't Spend Money on Bureaucracy 

Whenever you are donating to charities, it's important to keep in mind that they all have significant operating costs. The have secretaries and management staff to pay, building management funds, billboards and other forms of advertising to support. By the time your contributions reach the intended target audience, they're very diluted indeed.

Then of course, once they do reach the audience, who's to say that the choices of support that they make, the slogans that they choose are the ones that you would personally choose to support.

Make a Direct Difference if you can

If you own a place, like a theme park, a cafe, a sports club or a movie theatre then you can make a difference by simply offering free or discounted rates for a day or a week or even for the whole month, to families with people who have autism.

One thing that impressed me this years was that the Apple App Store ran some events and reduced the price of a number of apps which are used by people with autism. 

In many ways, this is better than giving to a charity. It will bring attention to your business while helping families who are otherwise unable to go out.

Make a Personal Difference if you can

If you know a family with autism, then you can make a personal difference. Why not offer to take their children for an outing or to "babysit" while the parents go out.  Find a way to be involved in the family. If you have teaching skills, you might want to offer to tutor their child.

If you know adults with autism, you might make special effort to interact with them, particularly if they're socially isolated. For most people with autism, simply spending some time with them on their special interests will make their day.

Every little bit helps and in general, offering your time to an afflicted family is far better than offering money to support the agenda of a faceless organisation. 

Saturday, April 8, 2017

Asperger's Syndrome, Diagnosis and the Genetic Link

I was recently asked about my diagnosis and about the whole genetic link in Asperger's Syndrome. I thought I'd already answered this somewhere on the blog but when I didn't find it, I figured that it was something that I should clarify. 

Yes, I do have Asperger's syndrome. I also have a son, currently aged 16 with Asperger's and NVLD and ADHD(I). I have a second son with HFA but since he's very verbal, even more son than his older brother, it's clearly Asperger's now... or would be if the diagnosis of Asperger's still existed. 

You can find out more about my family and I on the "About page" and you can find out more about me specifically via my four part introduction.

See here for Parts OneTwoThree and Four.
Part four in particular talks about diagnosis.

"This Book is About You"

In a nutshell though, my eldest child was diagnosed at 5. His differences were picked up by his teachers who met with us several times and who kept saying to my wife with pointed looks towards me; "the apple doesn't fall far from the tree".  I had no idea what they were talking about.

Being good parents, we read a lot of books of Asperger's but what was interesting is that we read them completely separately. I read during my transport to and from work, while my wife read at home while I was at work. We didn't talk about it until we were mostly through the books.

I couldn't see anything odd or different about my son. He was very normal to me. In fact, he was "more normal" to me than most kids his age.

He was doing everything that I did at his age. The books described me far more than they described my son and for a little while I wondered if somehow my "wrong" parenting was rubbing off on him and changing him.

When we finally got back to talk about our books, my wife's first words were; "this book is about you". 

We got our son diagnosed but kept reading.

It was another six months or so before I decided to talk to the psychologist. By then I had read a few more books and I was pretty sure of my diagnosis. So, apparently was the psychologist. He'd met me a few times before and said that he'd known from the start.

Genetics

The books made the whole inherited part fairly clear but I couldn't see a family connection at first. After all, my father was just my father and I had more in common with my uncle.  My uncle liked similar (techy) things to me but apart from that he simply didn't fit the profile. I later talked to my parents about my grandfather whom I didn't know well enough because he was older and too unwell by the time I knew him. That was when I realised that he fit the profile of Aspergers. I then re-evaluated my father as a "person" rather than as "my dad".  I watched him meeting new people and I watched him in conversations with family and friends. It was there all along, I'd just never noticed it.

When my youngest was born, we fully expected that he had a chance of being on the spectrum and we recognised the signs from an early age even though he was (and at 13, still is) vastly different from my older son. 

There's absolutely no doubt in my mind that there's a genetic link and that it's a strong one. Over the years, I've met quite a few people on the spectrum, particularly during my five year stint as a scout leader. In those years, I got to know the kids very well before getting to know their parents. I would usually know which kids were on the spectrum long before they were diagnosed and I would nearly always see the signs in one, sometimes both, parents.

Sometimes I'd know that a child was on the spectrum and I'd meet their father and think... "no, he's definitely not on the spectrum" .... and then months or years later, I'd meet their mother, and I'd see the signs immediately. 

Co-conditions make Great Disguises

If you have one person with Asperger's or any other autism spectrum disorder in the family, there's a pretty good chance that there are others. The link isn't always 100% direct but it's there, somewhere.

Co-conditions, particularly ones which aren't "fully-fledged" are very good indicators. If a person has fully-fledged OCD for example, they tend to allow it to rule their lives. It becomes extremely difficult for them to leave the room because there are so many leaving rituals which need to be performed, so many doors which have to be closed a certain way, footsteps which have to be repeated to end on an even number and so on.

A person with an OCD co-condition that isn't fully fledged, can have some disorder in their lives but they will still have rituals.

They may still require specific pockets of order, for example, they may sort their shelves very specifically or alphabetise their collections but OCD doesn't rule their lives. It doesn't prevent them from living their lives normally.

Asperger's rarely travels alone. There are nearly always co-conditions such as ADHD, Dyslexia, OCD and Bi Polar disorder and these are usually what people notice first. It's these co-conditions that make Asperger's particularly difficult to diagnose. 

At the same time, if you look for the co-conditions, you'll quite often find the "aspie". 

Monday, April 3, 2017

Movie Review: Asperger's Are Us (2016)

Asperger's Are Us (2016)
Running Time: 82 minutes
Directed by Alex Lehman
Starring: Noah Britton, Ethan Finlan, Jack Hanke, New Michael Ingemi

Asperger's Are Us is an independent documentary about the "last show" of a comedy troupe comprised of four individuals with Asperger's syndrome. 

When the documentary starts, the group have already been performing together for a few years and as they've all reached College age and are about to go their separate ways, they decide to put on one final show.

It's quite a well put-together documentary which at times feels so "mocumentary" that it's a little like "the office". It features interviews with the boys themselves as well as with their parents. 

While the popular consensus is that comedy doesn't come easy to people with Asperger's Syndrome, I'm of the opinion that Asperger's humour doesn't come easy to neurotypical people. There's a lot of very funny bits in both the documentary and the show but not all of the humour will be accessible to all of the people.

It's also very interesting to watch the boys trying to put together a show with so little planning and there are lots of moments when you can tell that one or more of the group are being stressed by environmental factors or by each other. It's great to see how accepting they are of each other's differences and issues. The kind of support that they give each other is quite different from the kind of support that neurotypical people give - and it's far more appropriate.

If you're the parent of a younger child on the autism spectrum, you may be fascinated to see how the traits of your younger child may transfer to adulthood.

There's a surprisingly large amount of heart in this movie. 

There's also a lot of very good information here about diagnosis, life and love. There are some incredibly quotable dialog gems too.

There's also some amazing struggles with identity and some beautiful statements about parents, about the lengths that they will go to and the way in which their children with Asperger's show their love;

"Every Aspie parent seems to fear their kid hates them or their kid is unhappy, and it's 'cause their kid isn't communicating very much with them. That's part of the autism is you're self-centered, so you really want to stay within you and not get out and interact with the world, which includes your parents, unfortunately."

I found the story of New Michael and his father to be very touching indeed.

This is a film that I'd highly recommend.

You can view the trailer on Youtube.


I've looked for the film on Amazon and Google Play and in our local stores but I can't seem to find it. The whole film however, is available on YouTube and there's really no excuse not to watch it.