Tuesday, April 3, 2018

Autism Representation and the Road Ahead

Over the years, April has been associated with the "Light it up Blue" campaign launched by the group "Autism Speaks". The campaign originally advocated awareness and then acceptance.  

It's something that I've posted about more than once before on this blog.  
In recent years, the campaign has changed from something that people with autism were wary of to a cause that is actually opposed by the majority of them.

Autism Doesn't "Speak"

There are many reasons for this shift but in my opinion, the fact that "autism speaks" is entirely controlled by people without autism is probably the major factor.

It's not that they've never had people with autism on their board; they've had some famous people including John Elder Robison

It's that they have their own agenda and it's neither friendly nor tolerant to people with autism.

Autism speaks seems to have a few main aims;
  • To generate revenue  
  • To seek a cure 
  • To seek prevention  
  • To ease the burden on families  
These may seem like good aims but they're not really compatible with the idea of acceptance.

It stands to reason that if you're putting so much effort into "fixing" people or on preventing the birth of others like them, you can't possibly be accepting them who they are.

The Road Forward  

I don't think that the road forward has changed much but the vision has certainly become clearer in recent years due in part to acceptance movements in other groups.

In order to properly "accept" autism we need to first acknowledge the individual. We need to accept that there are so many incredible differences between people at different points on the autism spectrum and acknowledge that the neurotypical definitions of success or happiness aren't necessarily the same

It's similar to the "when one door closes, another opens" moment that many parents go through except that it needs to happen on a much larger scale.

The Milestones Problem  

In today's world, we're driven by our need to fit into social milestones;
  1. School  
  2. College  
  3. Work  
  4. Marriage  
  5. House 
  6. Kids 
  7. Grandkids  
We're so driven by these milestones that it's hard to remember that not everyone wants or needs the same list. 

Even within the list of milestones there are hundreds of mini-lists, one of the most obvious of which are the developmental milestones of our children which set specific ages for walking, talking and toileting.

A failure at any point in the milestones can become a catastrophic failure in your life that leads down the road to depression.

This is what we need to change in order to move forward, the perception that the milestones are the same for everyone. 

It's not simply the culture of autism, it's everywhere.

When we see a disabled person, we find ourselves talking in terms of what they cannot achieve rather than what they can. All of our efforts are directed towards making them "normal" rather than accepting and welcoming them as they are.

The Importance of Representation  

A few months ago I saw an article on the board of directors for a women's rights group.  I was deeply offended by the fact that all but one was male.

For me, the problem was obvious; what could those who haven't fully experienced the issues  possibly contribute that would make them a better candidate than those who have?

This is precisely the same issue as the autism groups whose boards are staffed by neurotypicals.  It's fine to have a few parents of individuals with autism on the board but if we're really interested in acceptance, the board needs to be made up of individuals from all areas of the spectrum.

Now you might think that nobody on the lower end of the spectrum is going to be suitable for a position on the board but the real question is whether or not the structure of a board is suitable for people with autism.  

Individuals with low communication abilities aren't necessarily incapable of communication.  They're simply differently-abled. They're often able to communicate their wants and needs  - and these can be generalized to others with similar experiences.

You shouldn't need to be able to sit in a board meeting in order to contribute as a board member. Technology has levelled the playing field and there's no reason why people can't join meetings via phones, computers, instant messaging or any other means.

The time has come to end the idea of an equally-abled, equally-gendered and equally-minded board that sits around a table disconnected from real-life making decisions that affect the lives of people unlike themselves.

The road forward is to recognise the diversity of people on the autism spectrum and to put them in control of their own agenda.

Tuesday, March 20, 2018

Dealing with Food Wrapper Mess kids on the Autism Spectrum

You've been hounding your kid for a week to clean up his room and you finally go in because you need to pick up his washing or he'll have nothing to wear to school next week.

You're shocked to find a little pile of candy wrappers, often crawling with ants. The carpet is a mess and the bin is only an arm's length away. 

Yes, you've got a food wrapper mess kid.

I'm not sure if this is a  Asperger’s thing or just a normal teenager thing but I suspect that the problem is a little worse with kids on the spectrum.

Junk Food is Harmful. Right?

There's no denying that junk food isn't a healthy option or that in large quantities it will create obesity issues. It's important to try to impose some limits on your children’s eating habits.

What you don't want to do is get so hung up on the idea of cutting out sugar that you drive these behaviours underground.  After all, your kids will eventually be in a position where they have their own money and the opportunity to make choices when you're not present.

You need them to be able to self-manage by themselves. Banning food simply encourages your kids to hide it.

These kids are more than just Lazy

It's certainly true that the kids of today are considerably less active than the kids in the previous generation.  It's not a sudden change, it's something that has been happening for several generations now as technology changes the way that we live.

It's easy to see that laziness as the reason that kids won't pick up after themselves but it doesn't really explain why there are piles of trash so close to rubbish bins.

I think that a lot of the problems are related to attention span. I don't think that the kids build these little piles of rubbish with the intention of not putting it in the bin (except where they toss it under or behind furniture).

Most of the time, I think that the rubbish is stored neatly with the intention to bin it when they get up but then the activities of the present take over.

For example, they might be watching a movie, playing a video game, reading a book, listening to music or engaged in some other activity, when they're called down to dinner, off to school or into bed.

In the ensuing pandemonium, their little piles of rubbish are forgotten. I think this is more common with kids on the Spectrum simply because they're more focused and harder to interrupt.

What you can do about it?

For the most part, you're most likely already doing all the right things;

Don’t ban foods outright. Allow your kids to taste them but try to encourage them to make good choices.

Allow a bit of Junk (within reason)

Don't stress out too much about junk foods.  Kids have very fast metabolisms and while they're still growing, the food will get burned off quickly. Occasional junk foods are important too as they can reinforce much needed celebrations or become great rewards for effort.

Kids usually put on a little weight before a growth spurt but if you're really worried, talk to a doctor.  For the most part you've got until they're about 18 before they need to seriously start watching their weight so unless your child is showing signs of struggling or your physician considers it an issue, the occasional binge is okay.

Fill kids up with Good food and Water

Make sure that your kids have regular meals (or mealtimes). With older kids, it's okay to have “choose your own adventure dinners" once or twice per week. In fact, this teaches them to cook (or at least defrost) and it gives you clear insights into their favourite foods.

When you do cook, make it clear that you expect them to eat it all. Obviously exercise sensible portion control and don’t force them to eat more than they should. Make sure that your kids are drinking plenty of water too. 

The aim here is to ensure that they don't “fill up on sweets" before dinner and that they don't have a much of an appetite after dinner.

Responsible Kids are Tidier Kids

Make your kids responsible for their own messes. Don't clean up their little piles of rubbish. Tell them to do it -- and watch them do it. Make something that they like, such as dessert, computer time or just free-time dependant on completion of the task.

Get into the habit of including the messes in your routines. For example, instead of saying “Come down and have your dinner” try to say “put your mess in the bin and then come down for dinner”. With a bit of luck you get them to start cleaning up automatically.

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.