Sunday, February 18, 2018

Getting Speech Flowing in Non-Verbal Children

One of the many interesting things about people on the autism spectrum is that the abilities of most people seem to be wildly underestimated. It’s hard to come up with a simple reason why this is the case but the results can have catastrophic effects on their lives and families.

One of the most problematic areas of autism is communication. It’s often assumed that kids who don’t reach their speech milestones by ages 4-5 will never communicate; or at the very least that they will never speak.

This is not necessarily the case and as circumstances change, new technologies develop and your children get a better “handle” on their differences, speech can become a very real possibility. 

Ending the Milestones

Unfortunately, some parents have already given up by the time their children are ready to develop language and they never have a chance to reach their potential. This is understandable as parents can only continue with normal milestones for a limited time before they need start on an alternative track in order to provide the best care for their children.

It's not always obvious that the old milestones need to be revisited in the future.

One of the most important things to remember as an autism parent is that you're no longer following the standard milestones. Stop competing with the other parents and accept that you're proceeding at a different pace ... and potentially, in a different order. Speech may not necessarily come first.

Communication is Key

Imagine what it would be like if you were trying to work in an office where nobody else could understand your speech, writing or gestures. Now imagine that one of your colleagues liked to play loud music, another liked to bump the desk and yet another kept playing with the lights turning them on and off constantly. For good measure, assume that one of your colleagues keeps overdoing her perfume and that another simply can't keep their hands off the things on your desk.

It's important to remember that your child on the spectrum isn't just struggling with the difficulty of learning to communicate. They're struggling with their own sensitivities which are usually more easily overwhelmed than their peers. 

In the office scenario I described earlier, many people would eventually use some form of physical contact to communicate with their colleagues. Holding the shaking hand or bobbing knee or their table-bumping worker, covering the light switch or pulling the plug on the loud music.

Your child isn't going to be quite that sophisticated and their reaction to being overwhelmed is more likely to be simply covering their eyes and ears, rocking, crying, snatching items back and hitting or biting other children.

While there are many reasons for this kind of behaviour in kids, many of them are related to the inability to communicate. 

Alternative Communication

Regardless of what you do, your child is eventually going to learn alternative methods of communication. Whether those methods are positive or negative are up to you.

For example, if you take a child to someone's house and there's nothing for them to play with, they'll eventually do some form of damage. It could be spilling a drink, knocking over an ornament or annoying a pet. Whatever happens is less important than how you react. Many parents react to these incidents by making a hasty exit.

Next time, you may be shopping and your child may knock something over or pull some clothes off the racks ... and again you make a hasty exit.

In no time at all, you find yourself with a walking disaster area. You can't stay anywhere for long because your child will always "trash the place". Others around you will see this as extremely naughty behaviour but it's hard to understand because your child is normally so good at home.

What's really happening is that your child has learned to communicate with you. Trashing the place means - "I'm ready to go home now". 

If you have non-verbal children, have a think about how they react in certain circumstances. Do they follow patterns? Are there certain behaviours that occur around mealtimes? Do they act differently when you pass a sweet shop? Are there unspoken rules in their behaviour, such as; needing to get a new toy whenever you're out shopping in order to avoid a tantrum?

If so, that's communication. It might be negative communication but it's still something that you can build upon. 

Improving Communication

Once it's obvious that your child is communicating with you, it's time to start changing the nature of that communication and moving it to less destructive methods. Some children respond well to signing, while other respond better to pointing at charts. Surprisingly, some children are able to communicate through writing or typing or via technology such as phones and tablets even though they have no speech.

You'll need to try a lot of options and a lot of repetition in order to see what works best for your child. 

The most important thing to remember is that your child's early communication attempts will centre around their "wants".  Things that they either want or don't want and your most successful communication will result in immediate rewards.

"Gaming" your way to Communication

The best ways to get your children to communicate is to engage them one-on-one in things that they enjoy, for example games. Since this is about communicating "wants" rather than "don't wants", the communication should be fairly positive and fun.

Suppose that you limit your child to three major toys for a particular series of games that you play together regularly; In this example, Truck, Bear and Ball.  These three have quite different names so it's going to be fairly easy to distinguish between them. You should spend time playing with ONE of these and be sure to repeat the name over and over. 

"Today we will play with the TRUCK".  Spend time playing with the truck, perhaps pushing it back and forward towards each other. As you push it, say things like "I will push the TRUCK to you" or "are you ready for me to push the TRUCK" and "can I have the TRUCK now" or "could you push the TRUCK towards me". 

It's not necessary for you to use simple language like "PUSH TRUCK" and in fact, using baby-talk will make it harder for your child to distinguish the nouns. You want him to understand that the object is called a TRUCK not a PUSH TRUCK.

If you mention the truck frequently when you push it towards your child (not necessarily every time), you'll establish an understanding. Make sure that the game is fun too and if you child tires of it, stop playing.

After a while, say twenty turns or more, introduce some delays, perhaps looking around without actually introducing anything new, distracting or more interesting to your child. Perhaps pretending not to notice that the truck has returned to you.

See if your child tries to communicate. They'll most likely gesture but see if you can hold out for some noise. Eventually you should start to hear a word that sounds like Truck though you probably shouldn't expect it in first few sessions of play. You may have to do this a few times, with longer delays on your part in order to spark the language.

Avoid Distractions

When you play with your child like this, you'll need to avoid distractions. I'm not just talking about Telephones and Televisions, though these must remain OFF and preferably in another room entirely. You also need to concentrate on the task at hand, which is getting your child to communicate what they want.

You want the word TRUCK and ideally, you want the words PUSH and TRUCK. As things progress, you'll need to confuse matters, for example "Who should push the truck" or "Where should I push the truck to".  The eventual aim being to get your child to not only say the words but to actually understand what they're saying. For this reason, you need to be careful not to put words into your child's mouth.

It's going to be a great moment when you finally hear the words but don't get carried away and celebrate. Simply accept that the words have been spoken and push the truck speedily towards your child. 

You've no doubt heard that children love to receive praise as a reward but in this case, the child isn't seeking a reward. They're seeking a way to use language to get something done in the real world. If you want to encourage the use of more language, then you need to show them that it's very effective.

Expanding Nouns

Don't be tempted to keep playing with just the truck for weeks. Switch between other toys but keep your special three reserved for your special parent/child playtime sessions. If you let your child have those toys at other times, they'll lose their special appeal.

Eventually, after having played with all the toys from one "session" to another -- particularly if you've gotten a word or two out of your child, you'll want to introduce the concept of a choice. "What should we play with this time?"

You might have to offer choices for the first few times but the aim is to get the child to use their own words rather than parroting you. 

If you let your child simply point to the toy, they'll see no need to use their words. You need to ensure that words are far more effective than pointing.

Going out into the Real World

The more your child finds words to be more effective than actions, the more they'll use them. You'll have to watch your reactions to their non-verbal activities and make sure that you don't become predictable. In other words, their non-verbal "wants" and "don't wants" need to be met with a degree of "misunderstanding" so that their words will seem more powerful.

If your child starts saying BYE and waving to their grandmother, rather than knocking over an object, you need to see this as a step in a positive direction and react accordingly where possible.

Eventually you'll need to teach them that other people have wants and needs too but that's a whole different ball game. 

Note: Some of the ideas in this post were inspired by Robert J. Bernstein's book "Uniquely Normal" which I reviewed recently.

Sunday, February 4, 2018

Book Review: Uniquely Normal: Tapping The Reservoir of Normalcy To Treat Autism by Robert J. Bernstein

Uniquely Normal: Tapping The Reservoir of Normalcy To Treat Autism by Robert J. Bernstein

Uniquely Normal is a very impressive book which looks at a number of cases over Robert Bernstein's career ranging from children as young as two to adults aged sixty-five. It's quite a different book to the usual "parent's guides" that cover the subject because this is more a collection of abbreviated case studies.

Robert's techniques for treating conditions associated with autism are unique and very effective and as you progress through the book you'll begin to understand what to look for in your own children and how you can use those "moments of normalcy" to open up a larger world for them.

In the introduction to the book, Robert talks about growing up with a brother on the autism spectrum. I find that the best writers on autism are either writers with autism themselves or writers with a life-long connection to autism that usually starts with a sibling on the spectrum. Robert's brother Ben clearly played a large part in educating him.

There's a great story about him sending his brother some DVDs and getting no response. He assumed that his brother was unimpressed with the gift but after talking to him and drawing the information out slowly, he realises that his brother loved the gift.

What I found most astonishing in this book is the way in which Robert is able to overcome many of the non-verbal aspects of autism. It's one thing to help a two year old non-verbal child to start speaking but it's another thing entirely to get an aggressive 12 year old who has never spoken to start using her words in only a couple of weeks.

The chapters in this book are organized in age order with the youngest clients at the front. Each chapter starts off with a statement about the client, for example; Jeff, 6 Nonverbal; bites hand to ease stress. The chapters then go on to describe Robert's first meetings with them and his first impressions.

Robert's technique, particularly with younger clients, often involves watching the client and looking for a moment of "normality". His theory is that most people on the spectrum have such moments of clarity and that once the moment is found, it can be widened and the client can be taught to control the moment to make it predominant in their lives.

Sometimes the moment is in the client's reaction to a loud noise, such as a siren or music - or in the way that they move. Sometimes, the moment comes from their reactions to everyday things. Robert uses a variety of techniques which include card tricks, yoga, dance moves, music and believe it or not, pizza ordering, to help his clients to exert control over their lives. It's very impressive to read about.

At the end of each client case study, Robert talks about what worked and what didn't.  He doesn't hold back and points out his own failings as well as those of teachers and parents. He also acknowledges the way in which others around his client made changes to improve their interactions and how his clients have worked on their own behaviour.

Robert J Bernstein
One of the other things that I found quite different in Robert's interactions was that he doesn't encourage the use of praise. He believes that praising a child for an activity, particularly while they're still making progress, can actually distract from the activity itself. This is quite different from conventional wisdom which encourages constant praise.

In the later chapters, as Robert deals with clients in their teens and early twenties, he covers topics such as employment, dating and living independently, something that very few books on autism cover. His interactions with clients are often "in the real world" outside his clinic and are quite revolutionary. In one case for example, he got his client a job in a bagel store and when they struggled with some of the basic tasks, he bought a bunch of bagels and bags and spent time teaching them how to cut and bag the bagels. It's the kind of interaction that is incredibly rewarding but it rarely seen with autism professionals.

I got a lot out of this book and I'll be applying much of Robert's wisdom to help my own kids. I can't recommend this book enough. It has something for more or less everyone on the spectrum, at all ages - and those who support them. Robert's "real life therapy" is particularly applicable to parents and grandparents who can take the initiative to use everyday interactions to improve they way their children interact with others.

Uniquely Normal: Tapping The Reservoir of Normalcy To Treat Autism by Robert J. Bernstein is available from Future Horizons, on Amazon, the Book Depository and Booktopia in Paperback and eBook formats.

You can read more about Rob on his website, Autism Speech and you can watch some videos on his blog.

Honestly clause; I was provided with a kindle version of this book for review purposes. 

Monday, December 18, 2017

Avoiding Sensory Pitfalls at Christmas and other End of Year Gatherings

I love Christmas. I love all the flashing lights, the familiar Christmas carols and the decorations. I didn't really enjoy visiting relatives when I was little but now I really love the opportunity to catch up with people I haven't seen for a long time. Unfortunately, my view isn't the most common view among people with Asperger's syndrome and many people find Christmas to be a special kind of torture. 

In this post, I'll be addressing some of the ways that you can prepare for common sensory issues which affect adults and children during Christmas and similar festivities. 

Establishing Safety

Establishing safety wherever you go is probably the most important advice I can give anyone with sensory issues. Sometimes pushing the boundaries on your sensory issues can backfire and particularly in children, can lead them to run straight into dangerous areas.  Giving them safe places to go and safe people to go to will greatly alleviate the strain.

 Choose a Safe Area 

A safe area is a place where you can go to be by yourself. A good safe area has no distractions, such as flashing lights or music and is easily closed off to reduce the amount of sound coming from nearby areas. Sometimes the safe area will have distractions in it that are particularly suited to the person using the area. These could include a computer game, a fidget toy or soft furnishings.

If you're having a Christmas function at home, then the “safe place” is easy. It's usually your bedroom unless you share with siblings and it's going to be used during the function.

If you're the parent of a child with sensory issues and you're hosting a party, you might want to offer your bedroom as a safe area for the duration of the function. 

You'll also need to establish some rules with your child regarding the use of the safe area. If you don't impose limits, your child may choose to spend the whole function in the safe area.

If the function is elsewhere, you should try to establish a safe area at the earliest opportunity.  Toilets are always a good first port of call but these can get crowded sometimes and they're not always the best place for a person to come down from a sensory overload. 

If you're in a place with larger surrounds, you may be able to find some solitude in the outside areas but you'll need to set boundaries for younger kids to prevent them from crossing busy roads or running other risks.

Choosing Safe People

If you're a child, the "safe people" will usually be your parents or they may sometimes be a "best friend". If you're an adult, the safe people will be your partner, trusted friends or mentors. A good safe person will help you to get to a safe area, intervene on your behalf when trying to reduce stimuli or cover for you when you suddenly have to disappear. 

Choosing the Best Places to Sit

If you arrive at a function early, there will be plenty of places to sit. If you arrive later, your choice will be limited. This is also true of buffet-syle lunches and dinners. Get your food early and you'll be able to choose where you sit.

If you're the parent of a child with sensory issues, then the odds are that you'll want to seat the family together. You'll need to think carefully before you choose an appropriate spot. If you're the person with sensory issues, it's easier. You just need to look out for yourself.

Here's a few things to keep in mind when choosing a seat;

  • Try to get a seat near the end of the table. It makes it easier if you need to escape quickly and it avoids problems where people are sitting too close to you. 
  • Look out for speakers set around the room and try to get a seat that isn't too close to them.
  • In a buffet environment, don't sit too close to the food, as it will not only create a lot of noise and smells but it may also wind up having people lining up around your table. 
  • Try to avoid loud talkers or touchy people. If you got to the function early enough, you'll probably already know who some of the loudest people are.
  • If you're light sensitive, look for flashing lights and try to sit so that you're facing away from them. 

Dress for the Occasion

Since you're going to festivities where you already know that there will be a lot of sensory data. You need to make sure that you don't add to the issues . Be sure to wear low sensory clothing, nothing with tags and nothing scratchy.

Many people wear "new things" at these functions, so if you've bought new clothes especially for the occasion, consider trying them in advance, just to make sure that they aren't going to be irritating on your skin.

From here, you can accessorise to decrease your sensory issues. Wearing darker glasses, can significantly help in this regard.  They reduce the effects of flashing lights and they make it easier for you to look like you're giving good eye contact when in fact you're not.

If you've got headphones, particularly earbuds, bring them. They can be a great way to discretely reduce noise. If not, you might want to invest in some earplugs; just in case.

If hugging and kissing relatives is uncomfortable for you, you might want to wear something that makes it more difficult for others to get to you -- or you might want to talk to your parents or friends about "blocking for you".  If nothing else, becoming scarce during arrivals and departures or pretending that you have a cold can sometimes do the trick.

Whatever you do, the end of year festivities are as much "your time" as they are everybody else's, so you need to whatever you can to make your participation in these events enjoyable. 

Happy Christmas to all and see you in 2018. 

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.


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.