Thursday, January 28, 2010

Book Review: Not Just Spirited by Chynna T. Laird

I've just finished reading;

Not Just Spirited
A Mom's Sensational Journey with Sensory Processing Disorder (SPD)
by Chynna T. Laird

The book is firstly a memoir of Chynna's daughter, Jaimie's first six years. It covers her struggle to have her Sensory Processing Disorder (SPD) recognised and accomodated. The book is also, at times, a text book on the SPD and related therapies. It provides a comprehensive list of therapies which can be applied as well as describing the condition in detail.

If you have a child with SPD, then there's no question that this is the book for you.

More importantly though, if you have a "special" child; a child with special needs, a child on the spectrum or simply a child who you feel, in your gut, is somehow different, then this book is an essential read.

So much of Chynna's story was familiar to me;

The difficulty getting doctors to even accept that your child is different, the pressure on the relationship, unsolicited disciplinary advice, the lure of medications and the army of pediatricians, psychologists, psychiatrists and teacher's aides - each with their own particular strategy.

One thing that impressed me with the book and with Chynna herself was the extraordinary breadth of her researches. She truly left no stone unturned and her thoughts both positive and negative on the various forms of therapy, diets and techniques are insightful and encouraging.

It was Chynna's husband, Steve's chapter which moved me to tears. As a father I appreciate the difficulties of bonding within an environment restricted by work and other commitments. To put so much of himself out there with so little hope of reward is the sign of a true hero.

Then there's a chapter which deals with Chynna's attempt to put herself in her daughter's shoes. It was heartbreaking to realise exactly what Jaimie goes through every waking moment of her day. Chynna's coming to terms with her daughter's world was certainly a key step in moving forward. It's a step that I wish more parents had the courage to make.

In the end, despite a variety of techniques the book leaves no doubt that the "answers" are once again to be found in acceptance rather than in change. It's a message that everyone working with special needs children (parents, teachers and doctors) must take onboard if their therapy is going to succeed. Special needs children do need to have their boundaries extended constantly. Pervasive therapy however isn't the only option.

There are also couple of amazing examples in the book where we see that the actions of other children socialising or playing are actually more effective than therapy. I won't spoil these - you need to read them for yourself. They're amonsgst my favourite passages though and I re-read them several times. In a world full of stories about bullying, it's so encouraging to see that children can also be so supportive and caring.

Not Just Spirited is a book for everyone involved with special needs children and I urge you all to go out and get a copy.

Other Notes and Links
There's also a really interesting post by Chynna on mom-blog called;

Link to the Amazon Page

For Australian Readers: A Link to Chynna's books at Borders.

Honesty Clause
I was sent this book for review at no charge. I'm trying not to be biased but I guess it's possible.

Wednesday, January 27, 2010

What is Aspergers: My Perspective - Part 4 (Co-conditions)

Right at the beginning of this series, I suggested that Asperger's by itself isn't a debilitating condition. I stand by this. It is not simply Asperger's that is the problem but the co-conditions which frequently exist alongside it. Often these co-conditions are called comorbids but it is a word which I have stopped using because there are limitations on what can and cannot be referred to as the a comorbid. I'm not ready to accept those conditions.

It's hard to determine whether or not a co-condition is an entirely separate condition existing at the same time as Asperger's or whether it is simply a facet of the Asperger's itself. Sometimes the conditions seem to start out as part of the aspergers but separate later into fully fledged conditions of their own - sometimes it goes in the opposite direction.

I think that it varies from person to person and from condition to condition.

When a co-condition exists as a part of aspergers, it is never as severe as the condition would be by itself. Many of the lesser symptoms manifest themselves and there are social and functional problems which arise as a result. Although these mini-conditions aren't as severe, there is a good chance that a person with aspergers could display a smattering of mini-conditions all of which combine to make their own lives more difficult.

Some of the most common co-conditions are as follows;

  • OCD Obsessive-Compulsive Disorder
  • SPD Sensory Processing Disorder
  • ADHD Attention-Deficit Hyperactivity Disorder
  • Depression
  • Schizophrenia
  • Anxiety
  • Tourette's syndrome
  • Dyspraxia
  • Seizures
  • Bipolar Disorder
  • Learning Difficulties and Non-Verbal Learning Disabilities
I don't have a lot of room in this post to describe each condition and I'm by no means an expert on any of them. I'll try to highlight what I see as the differences between the condition as part of aspergers versus the condition on it's own but please don't take this a medical advice - it's purely opinion.

OCD Obsessive-Compulsive Disorder
Asperger's already contains some elements of obsessive-compulsive disorder. It is most notable as one of the driving forces behind the need for routine. This, I think is part of "normal aspergers" and I think all aspies have OCD to one degree or another.

Obsessive-compulsive disorder as a co-condition manifests itself in a number of ways with Asperger's. In particular, "lite" OCD can combine with the Asperger's special interests to create compelling and sometimes financially difficult collections. This is the sort of thing which you see on television about Star Wars collectors who have every single figure, spaceship. poster, book - even cutlery. This might not seem to have a great impact on the persons life however you need to think of the social consequences of inviting friends over to a house filled with memorabilia and also the problems of needing to own certain items. Sometimes such OCD desires can actually cause aspies to commit crimes.

Of course, co-condition OCD is nothing compared to its full-fledged counterpart. OCD can cause an individual to continually go through a repetitive set of unnecessary routines. This can make simple things like "leaving the house" become a three-hour job where every appliance, tap, light and lock needs to be checked several times over.

Sensory Processing Disorder
Sensory Processing Disorder is another condition which seems to be part of the core Aspergers condition. In particular, SPD is responsible for the lack of eye contact, the intolerance to loud noises and the difficulty wearing certain clothes. Once again, I believe that most people with Asperger's have this to one degree or another. When SPD is severe enough to be identified as a co-condition with aspergers it moves from simple difficulty with the environment to major levels of intolerance.

People with SPD as a co-condition will often find themselves completely unable to enter a room because of ambience issues. These can be caused by issues with lighting, sound or textures. They have great difficulty wearing certain clothes and may even have difficulty wearing clothes at all. It's obvious how an SPD could turn aspergers from a "passable" condition into something which causes the individual to retreat from society.

Many people with SPD as a co-condition need to wear suppressants such as sunglasses, earphones or gloves when they're out and about.

SPD has a life of it's own as a completely separate condition. In it's severest forms, it can prevent children who are particularly resistant to touch from playing with others, and may even interfere with their relationship to their parents.

Attention-Deficit Hyperactivity Disorder
ADHD and it's sub-condition ADD (the non-hyperactive type) are some of the most frequently misdignosed components of Aspergers. Children with ADHD are extremely distractable by outside influences but tend to "zone out" in close discussion. Sometimes it feels impossible to get their attention. ADHD/ADD can significantly impact learning as children have difficulty paying attention to the right signals and difficulty staying on track.

A child with aspergers and an ADHD comorbid will have a much more difficult academic life than a child with only aspergers.

Most people with aspergers suffer from depression in one form or another. After all, given the the hardship that many people with Asperger's have in their lives, depression is to be expected. Some aspies cope well with depression, showing only a few outward signs of their inner sadness.

When depression takes over a person's life to the extent where they either start to self harm or seriously consider suicide, it stops being a merely irritating co-condition and becomes a fully fledged condition in its own right.

Sometimes however, the aspie isn't actually sad at all. Sometimes it is simply their lack of expression, both facial and tonal, which leads people around them to believe that they are depressed.

One final note on the misdiagnosis of depression, Sometimes self harm is considered to be depression when in fact it is actually a sensory thing. A good example of this is when people cut themselves or when they do things such as biting their nails down to the skin level. Sometimes such actions are about enjoying a feeling because some aspies have such high pain tolerance that they need intense feelings to feel anything much.

This is one of the conditions which has reduced my usage of the word "comorbid". Apparently Schizophrenia and Aspergers are supposed to be mutually exclusive. I do not believe that this is the case. I know people who have shown signs of Aspergers throughout their lives. They've since "developed" schizophrenia. If a diagnosis of schizophrenia starts with the person hearing voices, something that generally isn't present from the early ages, how then does someone separate it from Asperger's which shows up in childhood?

Anxiety is closely related to Asperger's and also to SPD and OCD. Many people with Asperger's are naturally anxious but this does not necessarily mean that they suffer from anxiety. To suffer from anxiety is to have persistent worries on such a frequent basis that it interferes with ones daily life and routines.

Sometimes, anxiety comes on in a wave, called a panic attack which lasts about ten minutes. For many people, these attacks come while doing things that they do every day such as shopping. It may simply be that some environmental conditions such as the number of bystanders or the volume of music has changed.

Unlike most conditions discussed here however, people are not usually born with true anxiety, it tends to be developed over time. The extreme form of anxiety, Post Traumatic Stress Disorder (PTSD), results from violent emotional trauma. Sometimes people with Asperger's can be more open to PTSD because of some of the memory issues associated with the condition or because their naturally anxious conditions exacerbate "normal" trauma.

Tourette's Syndrome
Tourette's syndrome is similar to the ticks and physical and verbal stimming that people with Asperger's tend to do. Once again, while Asperger's itself tends to display some of the characteristics, there is a significant difference between Tourettes as a separate disorder and the co-condition of Tourettes symptoms with Aspergers. In Aspergers generally, facial tics and stimming (Simple Tourettes) may impact social functioning but there is little comparison with the wider issues of complex Tourettes, which involves more complex movements, seizures, utterances and self harm.

There are two major types of Dyspraxia, verbal/oral and motor. Verbal dyspraxia is a condition which it difficult to understand the speech of people. As a co-condition in Asperger's, dyspraxia can be likened to the monotone and speech issues that aspies suffer from. Motor dyspraxia can be likened to many of the coordination issues associated with Asperger's and low muscle tone.

As you would expect, full-fledged dyspraxia has considerably greater impact on the individual.

Bipolar Disorder
Some people with aspergers tend to be a little more polarised in their emotions - either very happy or very sad but usually not "neutral". It doesn't mean that they have bipolar disorder. I sometimes wonder if meltdowns are part bipolar - they're obviously related to some of the other co-conditions too.

What is obvious though is that there is some link between aspergers and bipolar. I'm constantly surprised by how many aspies have both conditions and how many people with purely aspergers talk about having a bipolar parent.

General Learning Difficulties and NVLD
Learning difficulties and Non-Verbal Learning Disabilities (NVLD) are quite common with aspergers. Although children with aspergers often have a great vocabulary, they often have problems reading and writing text. In particular, this comes out when they're called upon to do word-based mathematics problems.

I know that many aspies have difficulty in this regard but the presence of full-fledged NVLD can have such a significant impact on a child's learning abilities that they struggle, even with special education support, for the remainder of their academic lives.

Wednesday, January 20, 2010

What is Aspergers: My Perspective - Part 3 (Labels and Tables)

Like it or not, Aspergers is a label.

Everything has labels, it's how we communicate in our world.

Of course, the problem is that people find it difficult to reconcile the label with the individual. At first, it seems that they should mutually exclusive. After all, how can you be part of a group with similar characteristics (label) but still be an individual.

In this post, I want to talk about how the label and the individual can live in harmony.

Tables and Chairs
Since Aspergers and Autism are difficult and intangible concepts let's look at a real world example;

Assume that the label of autism is the same as "furniture".

If that's the case, then Aspergers could be a table, while Kanners could be a chair.

Perhaps something more similar to aspergers, such as High Functioning Autism could be a bench. It's not quite a table but it's certainly closer to a table than to a chair.

Defining the Label
It's very hard to make a list of what exactly defines a table. It's not the number of legs because although most tables have four, some have three, and some have six.

This is true of Aspergers. If for example, the number of legs is Gaze Avoidance, then it's true to say that most people with aspergers seem to have issues with "looking people in the eye". It doesn't mean that if you don't have that problem, you don't have aspergers - it simply means that if you don't then you're a little different from the majority. Not all people with aspergers have gaze avoidance issues.

If we stretch the table analogy further, you can see that some tables are made out of wood, some are metal, some are coffee tables and some are dinner tables.

There are things that are pretty much common to all tables. They all have flat surfaces on them and they all have chairs around them - even coffee tables. The list of characteristics for tables is similar to the list for inclusion of aspergers syndrome. You need to meet a certain amount of the criteria to be considered an aspie.

Blurring the Lines
Then there's the fact that some things which are common to tables are also common to chairs. After all, chairs have flat surfaces too and you can often put things on them (not just sit on them). Chairs are also often in close proximity to other chairs. Chairs share a lot of characteristics with tables because they're part of the same group - furniture. Sometimes other factors make it difficult to distinguish a chair from a table - stools in particular are a good example.

This is also true of Aspergers compared to the more classic forms of autism. Sometimes aspergers looks like classic autism and sometime vice versa. Even more common is the confusion between aspergers and co-conditions such as ADHD.

Imposing Limitations
It makes sense to say that furniture has a much greater chance of looking similar than non-furniture items, such as transport. It might even make sense to suggest that the label can place limitations on the range of uses to which an item could be put.

For example; it may seem quite easy to say that a table can never be used for transport. Of course, this simply isn't true. There are lots of trolleys which can be considered both tables and transport. Sure, maybe it will never compare to a truck, but it doesn't make sense to impose limits without trying.

One question which pops up frequently in forums (and which frustrates me considerably) is;

"What jobs won't my child be able to do if he is diagnosed with aspergers?"

The range of answers varies from place to place but there's always someone who suggests that "all public relations and customer facing jobs are out". This is a perfect

This is a perfect example of using a label to set limits on an individual - and it's not recommended. Setting limits on a child simply harms their self esteem. Many aspies work quite well in customer facing jobs because they're working in their special interest areas and because they work hard to overcome their limitations.

Another problem with labels is that they can sometimes lead to a loss of individuality. In our table example, we've ignored the fact that some tables have fish tanks in them, some have checkerboards on them and some have folding/extension capabilities. Handmade tables are 100% unique. This is true of people too but unfortunately we have a tendency to stereotype people into roles.

Everyone is an individual - particularly people with aspergers as a lack of social interaction can often cause them to develop on their own.

You can have the label and still be an individual.

Sunday, January 10, 2010

What is Aspergers: My Perspective - Part 2

I concluded my discussion last time by looking at the neanderthal theory of Aspergers. Now it's time for a couple more.

Men versus Women
There's no doubting this one. The majority of people diagnosed with aspergers are in fact male. Of course this doesn't rule out a huge undiagnosed population of female aspies. Aspergers presents quite differently in women and many aspergers traits in women are not diagnosed but simply accepted as "quirky".

Don't be fooled into thinking that this makes social life any easier for women with aspergers. While a female with aspergers is considerably more likely to find a partner than a male, they also seem much more likely to be taken advantage of and their relationships with others of their gender tend to be less successful than their male counterparts. Aspie men can often find other men who share their special interests but aspie women rarely meet other women who can communicate on this level.

It's not that either is any better or worse off. Both aspie males and females have difficulties but they occur in different areas. If anything, the fact that so many females with aspergers remain undiagnosed means that they aren't getting the kind of early intervention that males are getting.

Extreme Males
There is a theory which refers to aspergers as "extreme male brain". I'm not a supporter of this theory because I feel that it's demeaning to women. It suggests (implicitly) that women with aspergers are somehow more male (butch?) than their female counterparts. The reasoning for this is that asperger women are "less emotional" and "less empathetic". They also tend to be more focussed on more "scientific" pursuits.

Leaving aside the offensive side of the theory, there is also the problem of flawed data. At the time the theory was proposed, it was presumed that people with aspergers were emotionless and could not have empathy simply because they failed to show the same responses that neurotypical subjects showed. It's only been recognised fairly recently that although the reactions are different, the feelings are the same. People with aspergers feel do emotions and they are empathetic - sometimes they're more empathetic than neurotypicals.

The theory also seems to be suggesting that men with aspergers are more "extreme-male" than neurotypical men. This again is problematic for me because most men with aspergers that I've talked to are actually more "feminine" than neurotypical men. They tend to be interested in the "softer" disciplines of "computing", "science fiction" and "poetry" than the beer-guzzling, sports playing, randy party animals that neurotypcial men are portrayed as.

The extreme male brain ideas have merit but the biggest problem I have with the theory is that it's too generic and it ignores the individuality of the aspie. I have no doubt that my previous few paragraphs ruffled some feathers amongst my readers. I'm sure that many people are thinking, "I'm not like that". That's great! That's the main flaw in the extreme male brain theory - and indeed in most aspergers theories. They attempt to use the aspergers label to describe "everyone" and mistakenly decide that the majority of respondants in a survey can be substituted for "everyone".

It's probably true that a lot of aspie men are less into sports than into science fiction, for example but I've met aspies who are into bodybuilding and football. Initially I struggled to see how they fit the criteria but over time I've begun to realise that the criteria doesn't take individuality into account. We're all different - and the world is better for our differences.

I'm sure that I've made a lot of errors in this post - my work is currently in overdrive and my last three working days have been in excess of 16 hours each. I didn't want a week to slip by without a post but I'm afraid it's been a bit of a rush job. Hopefully next week I'll be able to cover some of the things I missed.

Tuesday, January 5, 2010

What is Aspergers: My Perspective - Part 1

No, I haven't taken leave of my senses or decided to "reboot" the blog. It simply occurred to me that while my first post discussed the official criteria, I've never provided a summary of my opinions on the subject.

As usual, this post represents my opinion only (though probably more considered and more direct than usual). If you have conflicting beliefs about what causes, cures or constitutes aspergers, feel free to comment. I'll publish any responses which aren't "rude" or trolling regardless of how I feel on the subject.

A Genetic ASD
There's absolutely no doubt in my mind that aspergers is genetic. You can't "catch it" from someone and it doesn't appear simply due to differences in diet or exposure to certain metals. Similarly, aspergers does not arise from environmental factors such as upbringing, social status or geographic location. Aspergers transcends racial barriers as well as sexual politics.

It's clear that aspergers shares enough characteristics with classic autism, particularly "high functioning" autism, to be considered part of the "spectrum". In fact, the primary diagnostic difference between AS and HFA is simply that HFA includes language delays. Once those delays have been corrected with speech therapy or simply adulthood, there is really no difference. This is one of the main reason for folding aspergers into the all-encompassing ASD (Autism Spectrum Disorders) label.

It's a decision I mostly agree with except for the fact that there is a very significant difference between someone with HFA and someone with a far more serious form of autism. I have no issues with the join between AS and HFA. My concerns lie with the lack of separation between high and "low" funtioning autism. After all, what good is a label if you can't say "this person has X" and expect everyone to have a fairly good idea of the range of symptoms you're referring to.

A Difference
It's also clear that Aspergers, and by definition HFA, is a genetic "difference" rather than a "defect". After all, it's obvious that people with the condition can look after themselves as individuals just as well as their NT (Neurotypical) counterparts hence in those terms it's not a disability.

If a defect exists, then it's in the society in which we live. The majority of aspergers traits which are "disabilities" and require "support" in our society are only a problem because our society doesn't accept them. For example, an intolerance to loud noises is a disability in a crowded shopping centre but not on a farm. In closing small "general stores" and opening shopping centres, society has taken this trait and turned it into a disability.

It isn't New
Despite the rapid rise in numbers recently, Aspergers is not a "new" condition. It has been around for a very long time, perhaps since the dawn of humanity. In fact, one theory, which I don't personally support, suggests that Aspergers is a neanderthal trait, hence it only affects certain families (presumably those in which a neanderthal has married in... er... right...).

Although I don't believe that aspergers comes from neanderthal heritage, I do believe that it's a genetic mutation (a difference) which is similar to mutations in other species. Such a mutation would be subject to the normal laws of evolution and would have just as much chance of being passed onto future generations as other differences, such as eye colour. As with eye colour, there may be some situations one colour can provide an advantage over the other but ultimately, neither difference is superior.

Long time readers of this blog may remember a discussion about an adhd wilderbeast. In that instance, it was obvious that the animal was quite different to its peers but it served a necessary purpose nevertheless. Evolution has a way of creating these mutations when needed. In the case of the aspergers individual, it's clear that they are generally deeper thinkers than neurotypicals.

There are a few reasons for the rapid rise in the number of people being diagnosed with the condition but one of the most obvious of these is that it has only recently been recognised and made available as a label. Thus people who would have either been diagnosed with a non-specific condition (or simply ignored) are now receiving a diagnosis. There's more to it than that though. It's possible that the numbers really are rising. If that is the case, then it's down to the laws of evolution again. Perhaps our society with it's fractured nuclear family and focus on technology is actually becoming more conducive to people with aspergers. Perhaps in some way, society is helping aspergers to flourish.

Next Time
In part two, I'll look at some of the the common co-conditions of aspergers and how the symptoms are defining the label - instead of the other way around. Hopefully we can also touch on the "extreme male brain" theory.