Sunday, October 16, 2016

If you love someone who might have Asperger's syndrome, should you tell them?

Over the years, I've been asked this question many, many times. It is a really tricky question because you never quite know how someone is going to take the news. 

The problem occurs when a neurotypical person has a partner who displays many of the signs of Asperger's syndrome but doesn't know that they have it. In this case, the relationship can quickly become very strained. A person with Asperger's syndrome needs to know that their responses are different to a person without Asperger's syndrome.  They need to know that their emotional needs are quite different from those of their partner, more different for example, than simply the differences between men and women.

Unfortunately telling someone that they have a "mental condition" never goes down very well.

Should you tell them?

If you feel that your partner would be open-minded and willing to work on adjusting to your needs - and if you're willing to adjust to theirs, then it's worthwhile telling them. If on the other hand, you're fairly sure that your partner will simply reject the information, or that it will make them angry, then it's really not going to do any good to throw a diagnosis into the mix.

Telling your Partner

If you do decide to talk to your partner about Asperger's syndrome, consider a more tactical approach.  If you have a child with Asperger's and/or suspected Asperger's then it's easy to supply your partner with books on the subject under the guise of "divide and conquer".  If you say, "we'll each read a different book on the subject and talk about what we've learned, you'll probably find that your discussions naturally lead you down the path you expected.

If on the other hand, you don't have a child who can be discussed, things are a little different.

You could try reading out a short passage from a book or from the web and saying "does this sound like you".  If your partner doesn't realise that it's a diagnostic thing, they might be more open to talking about it. If all else fails, and if your partner is willing to give things a go, you can always try the RDOS Aspie test together.

The RDOS Quiz is here;  You don't have to logon if you don't want to, you can go straight to the test.

Sunday, September 4, 2016

How to help your stay-at-home adult with Asperger's syndrome to change their behaviour and get more out of life.

So, you've got a twenty-something year old with Asperger's syndrome and they're more or less, living on the couch, or on the computer or games console.

Over my last couple of posts, I've covered some of the reasons why adults with Asperger's syndrome choose to stay at home rather than enter the workforce. I've also covered some of the skills which need to be taught and practised before they're ready for work.

In this post, I want to cover the act of "taking flight"... but first, I just want to go over a couple of points;

Education & Work Together can become “Overload”

If your young adult (YA) is engaged in tertiary study, for example at a University or College, you probably can't expect them to hold down a job as well. Remember that people with Asperger's usually need time away from others, particularly after a very "social" day.

It's not impossible but I'd advise against it, especially in the first year. Working full-time and studying part time is better but again, not recommended in the first year. Give your YA time to adjust before increasing their workload and social experience.

Get Out First, Jobs are Secondary 

Unless there's a really pressing economic issue at home, there shouldn't be significant urgency on the job front. After all, you've spent years raising your child without additional support, you should be able to go a few more weeks.

If your young adult isn't even leaving the house, they're not going to be ready to jump straight into a job.

You need to work on getting them out of the house and relating to other people. You'll have to start "small", for example; getting them to go pick up some milk and bread from the store. If they don't have a car, they could walk.

Start with a short list and add more requests and more complexity, such as specific brands. After a few goes, You might even want to ask them to find items they wouldn't normally find or recognise, this will hopefully encourage them to improvise and to ask questions or seek help.

Over time,you’ll want your young adult to develop "preemptive" skills where they start to predict what you need and/or make their own shopping lists. This is what job adverts mean when they say "self-starter".

Until your young adult is capable of doing this, work is probably not the best place for them.

Work is not for Everyone 

No job-seeking technique is foolproof and that work is not necessarily for everyone.

I covered many of the reasons in my first post but it's worth remembering that the employment statistics for people with ASDs (autism spectrum disorders) are significantly lower than the general population.

This isn't necessarily “because they have autism", it's often simply because they present differently to the other candidates for a job.

Occasionally, these differences can work in their favour and make them "memorable" to the interviewers. Usually though, these individuals come off as very introverted or very nervous.

It's not that employers deliberately exclude them but simply that, particularly these days, there are far fewer jobs than there are candidates - and employers use the interview process to select not only "the best" but also "the cheapest.

Younger and less educated people are cheaper, so if prospective employers tell you that you're "over qualified" it usually means that they want to spend less.

If you don't have a good resume and you don't interview well, then your chances of employment are very low indeed.

Changing Sleeping Patterns 

When you're not working or going to school, you tend to fall into bad sleeping patterns. These start in the teen years, where they are usually restricted to weekends and holidays but when school ends, it can become a very familiar pattern and a very hard one to change.

The specific behaviour is late (past midnight) nights and late (getting up at 11am) mornings. Unless you're looking at a career as a night watchman, this will impede the whole job process. Believe it or not, prospective employers can usually tell if you just got out of bed.

The other thing about this sleeping pattern is that there's not much to do during the majority of the waking time as more than half of it is at night.

You can't do chores at night because it will wake others up. You can't be active because walking or swimming at night is dangerous - and shops are usually not open.

This means that the activities are limited to fairly passive ones, like eating, watching TV, playing computer games or reading books. There's nothing particularly wrong with these activities provided that they're done in moderation and not at the expense of “life”. Doing this every night can lead to various addictions to foods, computer games or television.

If you're the parent of a stay-at-home adult, you have to disrupt this routine and rouse your young adults at a decent time.

Of course, that's not likely to work in the long term unless they have somewhere to be.

Becoming Busy

When your YA is functioning well with the outings discussed earlier, it's time to start developing a 9-5 work pattern. To do this, you need to find things to fill in your young adult’s time.

Unfortunately housework simply won't cut it. They’ll quickly realise that housework can be done at almost any time without the need to get up early.
The distractions need to be outside the home and productive and ideally should involve the use of transport.

Using public or private transport teaches skills which are necessary for work such as planning and dealing with sudden changes in schedules and availability.

Good “time-wasters” include; free courses such as youth vocational support programs and skills classes, gym classes and volunteer work.

The best places for volunteer work are those which support already overloaded and under-funded services.

Becoming a scout leader is a great option for youth who relate well to younger generations. The scouts are always looking for volunteers and they provide a lot of free and valuable training and experience.

Working with the elderly, the homeless, or with children or pets can be an interesting and rewarding opportunity  and, of course, volunteer work still looks good on your resume.

Reduce but don't eliminate leisure interests

The main aim of this exercise is to get your young adults to interact with people on a daily basis and to prevent them from becoming “housebound” reclusiveness.

You want the youths to adopt a lifestyle that fits in well with the way that our society operates. You also need them to interact with family, so I'd recommend that mealtimes, or at least “dinner” be held at a “family table” without devices or television whenever possible.

A certain amount of chores and personal grooming are also probably to be expected but beyond that, your young adult's right to free time needs to be respected.

Their special interests, be they television or gaming or something else, should be something that they can look forward to after a long day.  After all, it’s important that they get winding down time and/or alone time if that’s what they require.

With luck, your young adult will get tired of volunteering and seek opportunities to earn money for themselves. Ideally they’ll take more steps down the road to independence - but if nothing else comes of it, then at least you’ve gotten them out of the house. 

Thursday, August 4, 2016

Enabling Your Teenagers to be More Independent (Stay-at-home Adults Part 2)

Last time, I looked at adults with Asperger’s syndrome who had trouble leaving the house, and who were more often than not, video-game addicted.  In particular, I looked at the possible reasons that they could have for such behaviour.

The aim of this series of posts is not to force people with Asperger’s syndrome into jobs but to enable them to live a more rewarding and fulfilling life. At best, this means becoming financially independent but in some cases, simply feeling “brave enough” to leave the house on their own is a big accomplishment.

Taking a step back from my last post,  this time I want to look at some of the ways we can prepare our kids for adulthood in modern society.

Horror Stories of Our Generation

Every generation wants to ensure that their children grow up with less hardship than they did. When I was a child, my parents took great delight in telling me about the things they had to do as children. I was horrified to learn that things that I took for granted, like hot baths and spin dryers were huge chores for them and involved long and complicated processes like boiling water and wringing out clothes.

The "horror stories" that I tell my own kids pale in comparison. Things like having to get up to change the TV channel, having only 2 or 16 colours in video games, having to catch a variety of public transport to school and worst of all, actually being punished if you didn't do your homework. I can't help but wonder if perhaps we've made things just a little too easy on the next generation.

Back "in my day", television was considered to be the all-pervasive consumer of time but luckily we had very few shows and channels to choose from - and of course, TV only ran in the morning and afternoon/evening. It all ended in the middle of the day and around midnight. Computer gaming didn’t really start to take off until I hit my late teens (and then I was hooked).

These days there's so many distractions on TV, and enough channels and extra content via video streaming and computer games to last kids a lifetime. It's unlikely that they will ever become bored enough to leave the house.  The pervasiveness of media and the threat of addiction is higher than ever.

A side-effect of that pervasiveness is that, just like a house-cat which never gets to go outside and doesn't develop a proper "road-sense", our kids simply aren't getting enough exposure to the outside world to become fully independent adults. 

Working on Independence

In "the old days" when there were fewer distractions to keep kids off the street there was a lot of social interaction and kids learned a lot from the school of life. These days, unless you're homeschooling, those learning opportunities no longer exist.

There are a few skills that kids need to achieve a certain level of proficiency in. Of course, I’m not talking about kids with major intellectual disabilities, though if they can master any of these skills, it’s highly recommended.

I had hoped to go into detail about how exactly to teach these "missing skills" but of course, now that I've made a list and realised how big it is, it's going to have to happen in another post.

Skills for Independence

There are obviously thousands of things that you need to teach your kids ranging from the basics like "talking" through to more complex tasks like tying shoelaces, the academic tasks like arithmetic and full-on adult life skills, such as shopping for a house. These are all important skills  but at this point in time, I'm concentrating on the skills that are required for independence (and in particular, those which could help a young adult).

The majority of these "life-skills" are not usually taught at school so you need to consider alternatives such as scouting or do the teaching yourself. Of course, home-schooled kids often don't have these gaps.

To make this easier to read, I've tried to separate the skills into general areas and so, without further ado, here are the lists;

Communications Skills

You would be right in assuming that most young adults are perfectly capable of communicating their basic needs - to their parents. You might be surprised however to find that they're not quite so capable in the workplace. Many young adults with Asperger's syndrome would rather work through a lunch-hour than tell their boss that they need to stop and get some food.

The basic communications skills that young adults need to develop are as follows;

  • Stating their needs (food, drink, sleep etc)
  • Standing up for themselves 
  • Asking for help and/or directions
  • Stating their contact details, such as where they live, telephone numbers etc.
  • Saying "No" to strangers 

Hygiene Skills

You might think that you have a very hygienic young adult living with you but the question to ask is; what happens when you're not around to pressure them into various hygiene tasks? Do they change their clothes daily? Take showers? Wash? Use deodorant? Are your kids independently hygienic?

The hygiene skills that young adults most need to develop are;

  • Automatic hygienic behaviour (doing things without being asked)
  • Washing their hands properly and regularly 
  • Eating hygienically
  • Washing and grooming 
  • Deodorant 
  • Tooth brushing and breath management 
  • Dressing properly 

People Skills

People represent a vast area of unpredictable behaviour and young adults who interact with people need to be able to identify problems ahead of time and to deal with unexpected reactions from people. The main people-skills that young adults need to master are;

  • Identifying safe vs dangerous people (which people can be trusted?)
  • Relationship Dos & Don'ts (how to speak to people, how to treat people and what not to do)
  • Bullying (how to know that you're being bullied and how to react)
  • Peer pressure (how to identify peer pressure and how to choose your own path)
  • Anger management (how to avoid meltdowns in public)
  • When conversations turn bad (how to know when to stop talking & what not to talk about)
  • Taking care of others (looking out for other people's feelings)

Food Skills

Food skills is another area in which you may feel that your young adult is already proficient. Again, the test is to go away for a weekend and leave them to fend for themselves.. and then return to find out what they lived off.  If your kid lived off ice cream and cookies, you know there are some food problems that need to be dealt with. The food skills they need to develop are;

  • Knowing what is safe to eat (and when - local food quality differs from one place to another)
  • Basic eating manners 
  • Appropriate dinner conversations 
  • Food Choices 
  • Basic Cooking (steaks, salads etc)
  • Putting things away (in particular, putting things in the fridge after use).

Getting About Skills

The getting about skills are aimed at getting your young adult to and from the places they need to go. It's fairly common for people with Asperger's syndrome to be uncomfortable with driving. As such, learning to make the most of public transport is a must;

  • Working out where you are (and finding your way home)
  • Finding safe places to sleep, if necessary 
  • Understanding transport timetables
  • Using public transport and planning to be on time for appointments
  • Using Google maps and other location apps 
  • Identifying unsafe places (such as alleyways) and avoiding them
  • Confronting people on the street (thugs, police, strangers and unexpected friends)
  • How not to panic on public transport (when things go wrong)

Next Time

That's a lot of teaching but it's all very important. I've spent a lot of time going over these things with my two sons and we have regular refreshers whenever we plan day trips and other events. 

I plan to follow this post (later) with some specific posts about how to teach these particular skills but next time, I'll be covering part 3 of this series, 

How to help your stay-at-home adult with Asperger's syndrome to change their behaviour and get more out of life. 

Monday, August 1, 2016

Stay-At-Home Adults with Asperger's Syndrome - Part 1 Are there Any Reasons?

It's becoming an increasingly common story, a capable 20+ year old with Asperger's syndrome, living at home with their parents, unwilling to leave the comfort of the house - or their gaming console.

There's a lot to discuss in this scenario but I want to break it down into three posts.

  • Reasons for the Behaviour
  • Preventing the Behaviour 
  • Changing the Behaviour

In this post, I want to touch on whether or not there are valid excuses for this behaviour.

Excuse or No Excuse?

For the most part, there aren't too many good excuses for this kind of behaviour in a young adult with reasonable communication skills.  Asperger's syndrome itself is not an excuse.

That said, there are actually, some good excuses for this kind of behaviour;

Lower Functioning Individuals; 

I specifically mentioned “capable” earlier as a means of “filtering out” individuals who have difficulties which are significant enough to make them a danger to themselves or others, or who for intellectual or executive functioning reasons, can't perform any job or cannot leave the house without appropriate supervision.

In adults, these traits would have to be pretty severe as there are many individuals in the workforce who are great examples of what others with similar issues can achieve.

Drug dependence. 

Some prescribed medications and some recreational drugs will prevent some individuals from going out in public.

If it's a recreational drug "habit" then, as parents, that's probably your first responsibility. There's no point in helping a person with a drug problem to get a job. You need to help them off the drugs first -- and you can't do that without their co-operation.

If it's prescribed, then there's little that you can do (if the drug is absolutely needed). Don't forget that people often grow out of prescription drugs. By that, I mean that they continue to use them long after the drug has lost its effectiveness. You may once your children reach their late teens, you should be looking at whether or not they still need to be on the medications they needed for school.  Chances are that they've learned to self-regulate -- or if they haven't yet, then with reduced drug usage, perhaps they can.

The other thing to remember is that there are other drugs about. If you find that one "necessary" medication prevents your child from functioning well, you might want to ask your doctor if there are any alternatives.

Other conditions

Asperger's by itself isn't enough to force a person to remain at home but remember, Asperger's is rarely a lone traveler. Some of the common co-conditions such as; severe anxiety, oppositional defiant syndrome (ODS), Bi-Polar, depression  or schizophrenia can make work impossible.

If your child has experienced trauma, you need to remember that sometimes this can produce a form of Post-Traumatic Distreas Syndrome (PTDS).

As the strength and impact of these varies from one individual to another, you'll need to deal with these before tackling the job situation. 

Apart from these conditions, (and probably quite a few others I've missed), there's no reason why a person with Asperger's syndrome cannot live a full and functional life after school.  Computer game addiction is obviously a significant factor, as is run-of-the-mill anxiety.

Next Time: I want to cover some of the ways in which you can enable your children in their formative years and help them to grow into independent adults. Effectively, correcting the problem before it happens. 

Sunday, July 24, 2016

Book Review: Edward Adrift by Craig Lancaster

Edward Adrift

The Sequel to 600 Hours of Edward
by Craig Lancaster

A Review.

It's been almost seven years since I reviewed 600 Hours of Edward on this blog. It was one of the first books I reviewed here.

At the time, I said that I finished it and wanted more. Edward is a very likeable character and I always felt that a sequel was needed.

Imagine my surprise when out of the blue, Amazon's "recommended reading for you" page offered a sequel - and at a very reasonable price too.

I really wanted to go back and re-read the first book but unfortunately I simply don't have the time these days. I guess that means that you can pick up this book without having read the first one.

A Well-Rounded and Accomplished Sequel

Edward Adrift feels like a much accomplished book than its predecessor. It seems longer and more complete. It really feels like two stories but they're so expertly entwined that one naturally leads into the other.

Edward Adrift is a great book which is full of humour and emotion. It's part “road trip” and part self-discovery. It's not "action packed" and nearly everything in the book happens on an emotional level but if you like character driven books, it's great.

In a way, it feels a little like a male with Asperger's version of Bridget Jones.. minus the sex of course, remember it's an "aspie" male's point of view, Edward is really too awkward around people for that sort of thing.  

The main character of Edward is still as enjoyable as he was in the first book and he really shines as a person with Asperger's syndrome. He's a very well-rounded three dimensional character whose symptoms and traits meet the criteria without ever feeling forced.

It's a great book for anyone involved with Asperger's or special needs because it puts the reader into his thought processes.  Edward's obsession with the weather and specific television shows is still there but at the same time, you can see how these obsessions are changing as the world around him changes, and sets him adrift.

It's a great low-key story and like the first Edward, it would make great movie material with the right crew.

Edward Adrift is a highly recommended and very enjoyable read by Craig Lancaster and it is available on Amazon in a variety of formats; Kindle, Paperback, Audiable and CD.

As it turns out, there's a third chapter, Edward Unspooled which was just released. I've already bought it so there'll be a review of that soon. (As a consequence Books 1 and 2 are on special).

The three Edward books are available on Amazon;

Honesty Clause: I purchased Edward Adrift with absolutely no urging from anyone simply because I enjoyed the first book so much. 

Friday, July 15, 2016

Book Review: Developing Leisure Time Skills for People with Autism Spectrum Disorders

Developing Leisure Time Skills for People with Autism Spectrum  Disorders: Practical Strategies for Home, School and Community. (Revised and Expanded Second Edition) (Revised and Expanded Second By Phyllis Coyne, Mary Lou Klagge and Colleen Nyberg.

It's fairly common for very young children to be quite “clingy” and to be more or less incapable of dealing with spare time.

What you might not realise is that many older children and young adults experience difficulty with the concept of free time. Even older adults, who are verbally challenged and are on the autism spectrum experience these issues.

The problem is that since these people can't manage their free time without assistance, they will often "get into trouble" if left alone for more than five minutes.

As a result, the parents and caregivers of these people are often unable to take even short breaks for self hygiene without risk unless they arrange for substitute care.

The aim of this book is to help people with autism to develop their leisure time skills to effectively "keep themselves occupied".

The Aims of this Book

Developing Leisure Time Skills for People with Autism Spectrum  Disorders is essentially a textbook and it is primarily aimed at people working with several kids on the autism spectrum.

Parents of kids and young adults with Autism Spectrum Disorders (ASDs) will certainly get value out of the book but teachers and occupational therapists will get far more value because many of the included forms and templates are designed for people managing groups and will make it easy to get to know new students and to begin communicating on leisure activities.

The authors are mainly concerned with less verbal and non-verbal individuals and indeed, most of the later sections, particularly those with social stories and cards deal with communicating with the less verbal members of the ASD community.

The book starts by introducing three differently aged people with autism. It goes on to discuss the sorts of leisure activities and sensations that they like and dislike. These three people are used as examples in various chapters throughout the rest of the book..

Layout and Activities 

This is a large sized book with big print and it's very easy to read and designed to be photocopied (for forms).  Some the interesting forms and examples match activities to sensory seeking behaviour, for example, a child who loves the sensation of having the wind in their face may enjoy an activity like bike riding.

There's about 112 pages of text, then just as many pages of appendices.  The appendices are very practical and contain many forms, glossaries of terms and activity cards.  The appendices also contain descriptions of games that can be played with associated activity stories.  There are activity stories and cards for real life leisure activities like bowling swimming, fishing, going to the park. These cover preparation, the activity itself and a review of the activity.

The Zoo - A Social Story

Activity cards (social stories) are included social outings, hobbies, and physical activities which range from calling friends to scrapbooking, basketball,  roller skating, and various art projects

You will finish this book with a good understanding of how to create activity cards for your own child or those under your care.

Where to get this Book

Developing Leisure Time Skills for People with Autism Spectrum  Disorders: Practical Strategies for Home, School and Community. (Revised and Expanded Second Edition) (Revised and Expanded Second By Phyllis Coyne, Mary Lou Klagge and Colleen Nyberg. is available in paperback from Future Horizons Inc and Amazon.

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

Friday, July 8, 2016

Like Houses, Relationships need Constant Work

I've been reading and writing blogs on Asperger's syndrome since 2007.

Over the years many of the blogs I was following have closed down and disappeared. Others have experienced a decline in posts until finally they fall silent. 

Of course, I still have my feelers (RSS feed reader) out there and every now and then one of those blogs reactivates, though usually only for a lone post or two.

The Post

This happened earlier this week. The blog in question is from a neurotypical (normal) lady married to a man with Asperger's. The blog is mostly one-sided and often contains an angry rant.

The relationship doesn't seem to be a happy one and clearly the author is not getting the respect that she needs from the relationship.

To her credit, she has such high morals and is so devoted to her religion, that she won't leave, she simply struggles and endures (and complains).

Her recent post was about how, as soon as they stopped marriage counselling, things went right back to square one. It brought tears to my eyes. I’ve followed her blog for years and feels like having a friend in pain.

Partnerships and Houses

All marriages and indeed, all relationships (even those between parents and their children), need constant work.

The analogy is like a house. When it's new, it doesn't seem to need much work but as the years go on, it needs to be maintained or things will start to go wrong.

Counselling is like getting a cleaner in -- or if it's really expensive and prolonged counselling, it's like putting a new kitchen in.

Sure, it makes things look new again but it's only one part of the house and it's using the old plumbing.

Without continuous solid work, it will all go downhill again - and it's always a faster downhill ride that second time.

Weathering the Storms 

Back with our housing analogy, there's the question of the elements. The western side of the house that gets more sun may fade more quickly than the eastern side, though the eastern side may possibly be more subject to damp and wood rot.

The house may have weathered some fierce storms but they could have affected it in totally different ways. It could have blown the roof off on one side and cleared the scrub away from me Windows on the other.

There are always external factors impacting on relationships. These could be work, family, financial, medical or other issues.

Oddly enough, even though the same issues may hit the two parties in a relationship with the same force, our experiences and personalities greatly affect how it is perceived.

One example in my relationship was our exit from scouting. We exited over an adult bullying issue in which my wife was the victim.  I quit partially to show support for her and partially because I saw that the "people at the top" were keen to sweep bullying issues under the carpet. I couldn't be a part of that.

In my wife's eyes, this has soured that experience, and volunteering in general. For me however, I remember that time with great affection. I learned a lot from it, I met a lot of nice people, I had a lot of fun and most of all, I feel like I helped a lot of kids. I look at the bullies and the administration as simply "pests" -- and I refuse to allow them to sour the experience.

Asperger's is a “strange filter”

Everyone deals with impact in a different way, after all, we're all individuals.

Of course even taking individual behaviour into account, there are patterns. Two females will often react to a given impact in a way that is more similar than a male and a female.

Two people from a poorer economic background may deal with news of a retrenchment differently to a couple from a more diverse economic background.

Our “filters” help to shape the way we receive news - and the way we react.

It's difficult but not impossible to "put yourself in the shoes" of someone with a certain filter. We frequently find ourselves doing exactly this when we read books or write stories. We get inside our characters.

Sometimes it's easy, sometimes it's hard.

One thing that I have learned over the years though is that it's especially difficult for people with Asperger's syndrome to get into the character of a person without - and the same is true, probably even more difficult, in the opposite direction.

It's easy to see why couples who are a mix of neurotypical and Asperger's might face more struggles than most.


The key is communication. Remember that people with Asperger's have difficulty reading emotions in neurotypical body language.They also have a tendency to express emotions differently to neurotypical people.

You have to constantly tell them, how you feel, why you feel that way and what you need from them. It works in the opposite direction too. You can't simply assume that because they're smiling, they're happy - you need to talk about it.

Keep talking positively and you're more than halfway to good relationship maintenance.