Sunday, March 28, 2010

Getting Empathy (Back) into Your Relationship - Part 2

Last time, we looked at all the ways in which modern society conspires against us to reduce the amount and quality of our family time. This time I'm going to start looking at ways to begin building visible empathy.

You might find that choice of words a little odd... after all, what is "visible empathy"?

It's clear that aspies feel empathy for others - I don't really feel the need to reiterate that. The problems aren't with the ability to feel. The real problems facing people on the spectrum tend to be related to interpretation and demonstration.

Or in plain English;
  1. How to tell what someone is feeling (indeed how to notice that something is amiss) when they're only using non-verbal language.

  2. How to respond in such a manner that your response is understood as an empathetic response rather than a knee-jerk reaction or a flippant remark.

Before we begin looking at it from an aspergers/autistic point of view though, we need to first start to define what make empathy work.

Steps to Empathy
I'm sure that there are lots of different articles around the web and in journals and text books, which talk about steps to empathy. I've read none of them. I'm going in "cold" but from the heart and I've come up with a four-step process of my own.

That's not to suggest that my process is in any way better than whatever else is out there but simply that it's mine. It's personal to me and it therefore completely matches the kind of advice I'm going to give in this article.

You'll note, as you read the details, that I've automatically assigned gender roles and assumed a heterosexual relationship. I apologize if this makes what I've written less approachable. I've done this because of a number of factors;
  • I'm more familiar with Male Aspie + Female Neurotypical conversations
  • Females tend to crave empathy more often than males (in my experience)
  • There seems to be far more male aspies than females, though I believe that many more females remain undiagnosed than males.
  • I'm quite often asked to answer questions which assume this perspective
If you have any different experiences or perspectives, please leave comments. I'm well aware of how "sheltered" my existence has been and I'm always eager to learn new perspectives.

So without further ado, my four step process for "Empathy for Aspies" is;

Receive - Explore - Feel - Respond

I thought about making it into some cool sort of acronym but decided that clarity was much more important that wordplay.

This simply means to receive the signals. Usually this means listening but at the same time, it includes making a note of body language, tone, gestures etc. I know that this is very difficult for aspies but the problem isn't that we can't receive non-verbal signals. It's that we have great difficulty interpreting them - particularly when we're not watching for them and particularly during real-time animated (fast and two-sided) conversation.

The reception of non-verbal language should be much easier in an empathetic situation because these sorts of conversations tend to be much more one-sided with the person needing empathy pouring her heart out to the person who is expected to give empathy.

Now, it's important to note that empathy conversations just "happen". The person with issues doesn't book a time with you to start an empathy conversation. They don't give you any warning, they just start pouring it all out.

Those first few minutes are one of the most important parts of receiving an empathy-conversation. If you fail to recognise that an empathy conversation has started, then you'll respond inappropriately and you'll quickly find yourself branded as "incapable of empathy".

In my experience, empathy-conversations usually occur in quiet, generally one-to-one moments. Here's some of the ways they start;

  • The distant look
    I'm sitting on the lounge and I look up to notice a "distant" look on my wife's face. We've been married long enough that I now recognise at least a smattering of facial expressions. I ask her "are you ok" and then she starts to tell me about her day. As I listen, I discover that it's been a difficult day for her.

    Of course, half the time, my "are you ok?" question falls flat. Sometimes it's because I've done something, often unknowingly, to upset her. Sometimes it's because she already told me and I didn't realise that it was such a big deal. Sometimes, it's simply because her face has fallen into that "look"and she hasn't realised - or because I've misinterpreted. Still, I try, and sometimes I succeed.

    I used to ask my wife "what's wrong" instead of "are you ok". I discovered that asking someone "what's wrong" out of the blue is insulting and perhaps insensitive. After all, it doesn't necessary mean that anything is wrong. She may just not be feeling happy. Asking if she is ok is better because rather than the accusatory tone that "what's wrong?" takes, "are you ok?" immediately communicates concern, sensitivity and care.

  • The visitor
    As you improve with empathy, you find that people will want to talk with you. Visitors are people who deliberately seek you out because they need a bit of empathy. It's not uncommon for me to have people come into my office with a minor computing issue only to start talking about different things. It may be problems with other work colleagues or bosses or it may be things on a more personal note.

    I've learned to keep reasonably superficial about non-work empathy. It's okay to empathise with someone over a difficult co-worker, less safe to empathise about children. It's extremely dangerous to empathise with strangers over concerns with their marital partners.

There's probably a dozen more ways in which empathy conversations begin but as usual, I've caught myself trying to categorise everything.

Next Time
I'm not quite sure that I achieved what I set out to do last time but in any case, I'll be continuing on my four-step process and looking at the areas of Exploring and Feeling Empathy. I'll probably need to save the actual "demonstration" (Respond) section until last.

Friday, March 26, 2010

Getting Empathy (Back) into Your Relationship - Part 1

It's a point that I keep reiterating, Aspies are not incapable of empathy. We feel. We don't always recognise those feelings for what they are and we don't always respond appropriately but believe me, the empathy is there, waiting to be tapped.

I know that I've covered empathy dozens of times but it's usually been from a "complainer's" point of view. It's usually all about how aspies DO have empathy and how NT's don't recognise it. This time, I want to do something practical. In this series of posts I plan to discuss ways of getting that empathy (back?) into your relationship.

Where did it go?
You may have noticed that in several cases, I've used the word "back", implying that there once was empathy but that now it's gone. This isn't necessarily true of all relationships but I believe that it's the case in at least, some.

If you're in a relationship, particularly a long term one, then regardless of the feelings between you and your partner now, there probably was a time when your love felt stronger. A time when you both seemed to care more for each other's emotional needs.

The Perils of Modern Society
One of the biggest losses to modern society is family time, particularly, "partner-time". The past few decades, like no other in history has fragmented families in ways that even the world wars of the past failed to do. Our society is often referred to as a super-connected society and we're in constant daily contact with people all around the globe via telecommunications, news and radio broadcasts and via social networking sites like Twitter and Facebook. Unfortunately despite, or perhaps even as a result of, this amazing level of global contact, we still lack good family contact.

Despite the utopia promised by our advanced technology, our working days are arguably longer than ever before. Working days which were once 9 to 5, five days per week now start earlier and almost always include mandatory weekend work. Unpaid overtime is expected rather than exceptional and with the unemployment rate as high as it is, there's no shortage of willing replacements should we attempt to simply work standard hours. Economic pressures at home have forced many women to work where in past decades, they would have been "stay-at-home" moms. Our kids are at school for many more years and for much longer hours. There are even a multitude of "after school care" options for working parents to take advantage of. Even the grandparents and retirees of the previous generation are too busy to take on their traditional roles of extra helpers with the kids.

Somehow it all feels as if society doesn't want us to talk to each other.

Today's families have two cars, which makes separation between mom and dad so much easier. Our weekends are too often filled with (separately) driving our children to and fron a diverse range of sporting and intellectual pursuits. Any time we have left tends to be claimed by television and the internet while our children are sucked into various game consoles.

Speaking of game consoles, the fact that kids can now carry them literally anywhere means that our window for "family talk is smaller than ever. Portable consoles (gameboy/ds etc) and mobile phones with a multitude of games - and more instantly downloadable from the net make it easy for today's kids (and adults) to become lost in their own isolation.

Now, before I leave the subject of portable devices, I still need to cover "dad's blackberry" which is supplied by work and keeps him in constant contact with the office and customers - even when working hours are over. It also keeps him hooked into the constant flurry of emails and it never, ever goes quiet. Why? Well, because of globalisation of course! Since so much of the work is done by underpaid and undernourished labour in third world countries, there's always a lot of after hours "tail-chasing" to be done.

Then of course, there's Mom's phone and the house phone. Both tend to ring off the hook all night long. Why? Well because women need to talk and often, particularly because they work during the day, that talk needs to happen at night. Sometimes it's because husbands are working nightshift or out of state - and sometimes it's because their husbands are simply lost in their blackberries.

The Problems of Time
These aren't aspie problems I've been talking about - not yet. These are just the day to day problems that our "crazy" gadget-filled, work-obsessed, globalised, "keep-up-with-the-Jones'" society imposes on us.

It's hard to listen to each other in those brief moments together when we really only have time for a quick summary of our daily events and problems. It's even harder to find empathy. Let's face it, we spend much more time each day being social with our business partners than we do with our own families. It's obvious why we can show more tolerance, patience and empathy towards them - and it's obvious how unhealthy relationships begin.

It's hard to be empathetic with someone you almost never speak to.

Don't Forget the Kiddies
One final note before I start looking at ways to deal with these issues. The kids...

Do you realise that your children need to see empathy in action before they can develop it themselves? Do you realise that those long hours in daycare and after school care only expose them to the undevelped empathy of other children. Even their carers and educators aren't displaying proper adult empathy, they're too busy looking after their charges.

If you're not able to role-model empathy in your own relationships - and in front of the children, then what hope have they got of bringing it to their own future families?

Tune in next time...
I've barely begun in this post. Truly I've only restated the problem in terms of time. It's not an aspie problem, not yet, it's a global problem.

In my next post, I'll talk about ways that you can make family time. Hopefully there, I'll start to cover some of the aspergers connections too.

Thursday, March 25, 2010

Just a Reminder: The Black Balloon is out Tomorrow on DVD in the US

Since 59% of my readers come from the US, I figured that it was worthwhile noting that tomorrow (23 March) is the day that "The Black Balloon" comes out on DVD.

If you or anyone you know is on the spectrum, this is a good film to watch. It looks at a "lower functioning" part of the autistic spectrum than aspergers but I believe its message is appropriate for all.

It's an Australian film which doesn't appear to be getting a huge amount of publicity in the US (being drowned out by teenage vampire DVDs), and it stars Rhys Wakefield, Luke Ford and Toni Collette.

  • I've previously reviewed it here.
  • The IMDB Page for it is here.
  • The Facebook page for it is here.
and the Amazon page for it is here.

Friday, March 19, 2010

Avoiding Human Contact

It's a common misconception that aspies dislike social contact. In fact, I've read somewhere that a major difference between "autism" and "aspergers" is that autistic children desperately want to have friends (and social contact) but can't while children with aspergers have better social skills but no interest in making friends. Of course, I might have this round the wrong way.

Either way, it's totally wrong.

In the first instance, aspergers is part of the autism spectum. They're "clinically identical" conditions, so there is no difference. Secondly, I've met plenty of people on the spectrum and with various labels, many of who lamented the fact that they crave friendship but have difficulty establishing/maintaining one.

Finally, and in my opinion, worst of all, these kinds of statements commit the "sin" of ignoring the individual.

Everyone on the spectrum is different regardless of their diagnosis. Everyone has different strengths, weaknesses, feelings and behaviour. We are all individuals and no label will ever change that.

All Stigmas have a basis in Reality
I think that it's only fair to say that all stigmas and stereotypes have some sort of basis in reality, however tenuous. That isn't to say that aspies don't "want" social contact but that sometimes their behavior makes it seem so.

Have a look at this dilbert cartoon which appeared on my calendar recently. This is me. It's very much me. In fact, I was so enthused by this cartoon that it now adorns the wall in my office.

I'm always one of the first people into the office and I'll generally hurry down to my cubicle to start my day in relative solitude. Even when I'm not the first one in, my colleagues know not to expect many words from me until I'm settled - certainly, very few of my morning ramblings are coherent.

Despite appearances, I do enjoy the company of my work colleagues. They're generally nice, interesting and caring people. I just have to settle myself in solitude first before I go out to talk.

15 Minutes of Fame
I tend to get into work at about 6.30am but it's not until about 9am that I go and get a morning coffee. It's then that the most social part of my day begins. That's right, it really does take me about 2.5 hours to get myself together.

For about 15 minutes in the coffee room at work, I wear my "social Gavin" hat. Being in IT, means that I need to have a good feel for not only system performance but also user tolerance. I'll talk about social things but will also touch on systems things. I'll talk about my day and my problems and will ask people about theirs. If there's any system issues which are causing massive grief, then I'll hear about them in this "15 minutes of fame". It gives me a better starting point for the days activities and draws my focus to the needs of the users.

Of course, by the end of 15 minutes, I'm often quite tired and socially worn out, so I go back to my office to work on the myriad of problems I've discovered - and to calm down from social overload. Depending on the degree of difficulty with the problems, I'll often repeat the 15 minutes of fame towards the end of lunchtime.

From what I gather, this is quite different from the way that neurotypical people work.

And the point is...
I guess the main points of this post are;
  • Those of us with aspergers need to be mindful of the sorts of inferences which can be projected from our behaviour and take care to not become too reclusive.

  • One or two 15 minute intervals of social contact per day, is often all that is required to follow the pulse of an organisation.

  • It usually doesn't matter how you work, just so long as you get the job done.

Tuesday, March 16, 2010

My Thoughts on the Changing Aspergers Label

In the last few posts, I've looked at the two sides of the controversy over the changes to DSM V regarding the absorbtion of the Aspergers label into the general autism banner.

In this post, I want to give you my thoughts and position on the issue.

Label Recognition
Aspergers is quite obviously on the Autism spectrum. There's absolutely no doubt in my mind that they (aspergers and autism) share many traits and that often, though not always, the intervention required is also the same.

At the same time, I'm confused by all of the sub-labels in the autism spectrum. Like Aspergers, High Functioning Autism (HFA) is a successful "brand" bringing almost instant recognition but who amongst the general public knows how to refer to the other end of the spectrum?

Label Reliability
What exactly does "high functioning" mean anyway? I have met a range of people with this label and they ranged from "rain-man style" savants to people who could barely speak.

The problem with a level-indicating label is that it impacts the "brand recognition" of the other labels. If people meet a "savant", they're going to assume that all HFA's are "savants". If they meet someone who has difficulty talking, they'll write off anyone on, and particularly those "below" HFA, as non-functional. Having words like High, Medium and Low simply encourages people to make guesses about the differences rather than ask. This is the main reason that the autism label is so badly tainted.

This is more or less the same sort of logic we apply to black and white concepts like blindness. In the case of blindness, you're either blind, partially blind or NOT blind. There's no middle ground (actually there is but I'm not going there). We know which condition is "better" and which is "worse" without having to look anything up. Even in the simple case of blindness, neither label truly describes the condition and it has become necessary to introduce new labels, such as "colour-blindness" to deal with cases which don't fall into the usual range of conditions.

Autism is quite different to blindness. It doesn't deal with a single sense and it encompasses a far broader range of attributes and traits. The words "none, partial and full" do nothing to promote understanding, so why do we delude ourselves that high, medium and low carry any meaning either?

Useful Labels
The aspergers label is quite different to HFA even though they generally mean the same thing. With aspergers, you either know what the label means already - or you have to look it up. When you look it up, you don't simply get a rating of high, medium or low, you get a list of possible traits. In this way, aspergers is a far more communicative label than any of the others on the spectrum. It doesn't offer easy comparison with the other labels within the autism spectrum because, like the colour-blindness example earlier, there is no comparative operator (high/medium or low) in the label.

My Feelings on the Whole Label Names Issue
I could go on for a lot longer about the other issues with the label but I know what you've come here to read - so, without further ado, here it is.

I guess my view is based upon a few "rules";
  1. All parts of the spectrum should be recognised as spectrum disorders, therefore all parts should contain the word "Autism".

  2. All parts of the spectrum should be represented by non-referential labels, like "Aspergers" to prevent automatic comparison between labels. In time, as research continues, perhaps these labels too will split into sub-labels.

  3. Labels should describe a group of traits, not just one.

I'd really like to see "High Functioning Autism" disappear entirely to become;
  • "Aspergers Autism"
and perhaps the lower functioning parts of the spectrum should be referred to as;
  • "Kanner's Autism"
I'm sure there's probably quite a few levels in between which could be given names and their own particular spin on traits.

Similarly, I'd like to see the comorbids included in the label. My eldest son would then be described as;
  • "Aspergers Autism" (with LD/ADHD)

Finishing Off
I know that I've ignored all the other issues in this post, such as how funding is allocated but I firmly believe that if you get the labelling right, everything else will follow.

I'm leaving you with this example of cats to show how ridiculous the spectrum is now versus how I'd like it to be.

This is how the spectrum currently is. Low, Medium and High based on one particular attribute level of functioning - or in this example, length of fur. You'll notice that the cat on the end has the word aspergers next to it but that it isn't even recognised as a "cat". You may also notice that the only difference between Aspergers and the high cat is the colour of the fur.

We can infer from this picture that high cats are much better than medium cats and that low cats are really not good at all. In fact, if it's common practice to institutionalise some of the medium cats, then surely, you can presume that all low cats can be institutionalised without further investigation.

It's not a useful criteria.

Below is the means by which these cats are really categorised. If you don't know about Sphynx cats, then there's a wiki page which tells you all about them. The same goes for all the other types of cats. Even better, there's plenty of space for new types of cats; tortoise shell cats, tuxedo cats, calico cats, muchkin cats and the list goes on.

Why do our pets get better labels than us?

Monday, March 8, 2010

An Interview with Lynda Farrington Wilson, Author of Squirmy Wormy

I was given the opportunity to ask some questions of Lynda Farrington Wilson, the author of Squirmy Wormy, a book I reviewed last week.

I hope you find her answers as enlightening as I did.

1. While it's obvious that your sons were a major influence, what motivated you to write a "children's" book on autism and spd?

When my son Tyler was diagnosed with autism, my world spun into a research journey. I was on a quest to understand and gain insights into the way he approached the world. I would ask every professional I would encounter questions like,

  • Why does he spin the wheels on his toys cars and watch the ceiling fan spin?
  • Why does he stare at the rolling credits on the television?
  • Why does he run back and forth for hours?
The answer was always the same, because he has autism. I continued to seek and provide therapies for my son, still frustrated by what I called the autism black hole. However, as we implemented sensory strategies to help in his sensory processing disorder, the behaviors began to subside. As we gained control of the autism we were able to focus on teaching, growing and healing. The black hole was not as mysterious as it was purported, and was replaced by hope. I wrote the book so Tyler and other families, teachers and therapists could have that same hope.

2. Your book is quite unique in the way that it is directed at both adult carers and children simultaneously. Was this your original intention or did it come about when you started revising your material?

Once I realized that sensory issues were such a big part of autism, I wanted to help my son learn to self regulate, or at least have the opportunity to point to a picture to help me to understand what he needed. I created the book as a resource to help my son and to share what I had learned with the parents, teachers and therapists that were not aware of the huge benefits of a sensory diet. It is the book I wish I had when I was trying to make sense of our sensory world.

3. You offer a great deal of useful advice for dealing with difficult behavior in your book. Was it difficult to restrict yourself to just a few?

I didn’t really see it as addressing difficult behaviors, although it does do that, but rather find the cause and effect of behaviors that I was told by many that were “just autism”. I tried to give play to many different sensory strategies, in addition to replacing the more socially unacceptable behaviors, like watching the ceiling fan spin, to spinning on a merry-go-round at the park. One behavior makes him “look” like he has autism, and one is just playing on the playground with his peers, addressing the same vestibular needs. A simple paradigm shift makes all the difference.

4. How does your son Tyler feel about the book? Is he excited to be in a story of his own?

Tyler is comfortable with the book as it was created as a social story for him, grandiose, yes, but in its truest form, a social story. We’ve been using the illustrations and text right off my drawing board for many years now. I don’t know that he sees the “excitement” factor as creating illustrations and stories to help him through his challenges is a part of our everyday lives, but we do refer to it as “our book”, and I call him “my Squirmy Wormy”. I would imagine that he doesn’t really understand that having your name and picture in a book isn’t commonplace for every little boy—and that’s what I love about him!

5. You really seem to have gotten into Tyler's character and seen the world the way he sees it. It's difficult for me, as a dad with limited home-time, to get that deep into my children's characters. What sorts of things did you do to get that unique perspective.

My most defining moment with this book was when I was illustrating the page where Tyler is saying, “Sometimes I feel like things are running around in my head so fast that they don’t make sense…” He looked at the picture, and at a time when he had very little language, pointed to the picture and said, “That’s Tyler”. I asked, “Is that how you feel when your head is mixed up?”, (that’s our term for sensory overload) and he said, “Yes”. I knew then that for the first time, I had crossed into his world, and continue to observe, embrace and celebrate his uniqueness.

For me, it’s a privilege to be “let in” to see the awesomeness and complexity of his mind. I find that sometimes that unique perspective is there for the taking by continuing to ask him questions about himself, and on the days I was meant to experience a small miracle, he will respond with an insightful answer.

More of Lynda Farrington Wilson's work can be seen at and the book Squirmy Wormy can be purchased from Amazon.

Wednesday, March 3, 2010

Book Review: Squirmy Wormy: How I Learned to Help Myself by Lynda Farrington Wilson

It's not often that I see a book which sits so comfortably across several age groups and brings useful and different information to each. Squirmy Wormy is such a book.

Squirmy Wormy is, at first glance, a picture book which deals with Autism and Sensory Processing Disorder.

The "story" itself is a mere 18 pages, so it's a quick and easy read but don't let that deceive you. Beneath its storybook exterior, Squirmy Wormy provides a wealth of explanations and tips. It's a book that you and your children will be going back to, time and time again.

Suitability for Young Readers
Young readers will find Squirmy Wormy easy to read because there's only about five lines of new text on each page plus a little repetition of sound-words. None of the words are particularly difficult, making it a great book for good-reading children as young as kindergarten.

If your child is a slower reader, the book is still good reading at grades three and four. It's also a great book for reading aloud. In fact, it's the sound words like "flappy, flappy, pinchy, pinchy, hit, hit, hit" which make it a particular joy to read to an audience.

A Book with a Difference
What makes Squirmy Wormy so different from your average picture book though is that apart from having a generally non-linear story from which you can simply read one or two relevant pages without having to re-read the entire story, it offers a great deal of advice for parents but more importantly, for children.

One of the main aims of this book is to encourage children to help themselves.

Taking a child's point of view, it's easy to see the advice for given situations.

For example; one page reads,

"Sometimes I just get upset and confused and I just don't know what else to do but scream or cry"

The advice follows on quickly;

"But I just close my eyes, take a deep breath and think of something that makes me happy."

There's also a reassurance of normality;

"It's okay when I feel upset. I will feel better soon."

It's great that the book provides reassurance because all children, particularly those on the spectrum, really need constant reassurance. They need to know that they're okay and that other people experience the same sorts of feelings and frustrations that they do.

The advice is great too. Sometimes it's directed at parents and sometimes at the children. It's always understandable and it's always achievable. Sometimes the advice suggests breaks for the child and sometimes it provides interesting ideas for parents to implement. Best of all, a child who is reading the book may begin to implement or recommend their own therapy for a given problem.

The illustrations in the book are all bright and colourful. I was amazed to find that Lynda did these as well. They're very easy for children to relate to and there's a lot of detail in them. My children had great fun pointing out various bits and pieces and there's a unique textured look to them which makes them even more attractive for those on the spectrum with a fascination for patterns.

I read the book aloud to both of my children and they stayed attentive throughout. Best of all, it provided me with some great ideas and opened some enlightening discussion topics with them. It was interesting to be able to point to pages and ask them, "do you feel like that?".

I'd recommend this book to all parents of children on the autism spectrum, with SPD or even with non-autistic conditions such as learning difficulties and ADHD. There are a lot great ideas in it which are suitable for a much broader range of children.

Professionals working with special needs children really need to get a copy of this book too. It's one big step on the road to self-management.

Honesty Clause
I was sent a copy of this book to review at no charge.

Tuesday, March 2, 2010

FTF: Post 2: The Vows of Special Needs Parents by Chynna Laird

The Second Article in the First things First series is now available on "Hartley's Life with 3 Boys".

The article is called "The Vows of Special Needs Parents" and it's by Chynna Laird whom you may recognise as the author of several books including "Not Just Spirited; A Mom's Sensational Journey With SPD" which I've reviewed on this blog.

Chynna's article covers a topic which is close to my heart; Maintaining your relationship when you have a child with "tremendous needs". It was this very thought which inspired the logo I'm using for the series.

It's really interesting seeing this covered from a female point of view. The motivations and experience are quite different and Chynna's way of dealing with the issue is also quite different from mine.

This is a great article by a great writer, please have a read;