Wednesday, November 30, 2011

How a Lack of Executive Functioning May Appear in Young Adults

You'll often hear that people with Aspergers syndrome have problems with "executive functioning" but what does it mean and how does it manifest in young adults?  In this post, I hope to give you some answers.

Put simply, executive functions are higher level functions such as planning, reasoning, problem solving, multi-tasking, attention span, inhibition, flexibility, self monitoring, self-initiation and self guidance.  I'm sure I've left out quite a few.

Executive functions are important but in an animal sense, a lack of them is usually not life threatening.  Eating, sleeping, moving and toileting for example, aren't classed as "executive functions".  While executive functioning provides many advantages, it's not so critical in the pure "animal" sense.  It's people and society that has made executive functioning critical in humans.

How a Lack of Executive Functioning Could Manifest in Young Adults
The remainder of this post will focus on an example, in this case; getting ready for school. This may seem like a single task but it is actually an objective made up of many different tasks.

A parent of a child with good executive functioning might expect to be able to say "get yourself ready for school" or even have their child realise that because it's Tuesday, they need to get ready and wear their sports uniform.  This would imply self initiation of tasks.

The getting ready for school task includes sub-tasks such as;

  1. Getting your pyjamas off 
  2. Putting your pyjamas under the pillow ready for "after school"
  3. Putting underpants on
  4. Deciding whether to wear a sports or normal uniform
  5. Putting pants on
  6. Putting a shirt on
  7. Putting a tie, headband, ribbons etc on 
  8. Putting socks on
  9. Washing Hands
  10. Having Breakfast
  11. Washing hands and face
  12. Brushing Teeth
  13. Putting Lunch in the school bag
  14. Putting Books/Diary in the school bag
  15. Putting Shoes on
  16. Getting outside on time.

A child with poor executive functioning will see these all as entirely separate tasks.  They know that "going to school" is part of the big picture but they won't be able to sequence the tasks and they won't self-start or self-monitor.  If there are any distractions available they will quickly become distracted and will fail to complete the task.

If anything changes, for example, if their favourite breakfast cereal isn't available, then they will not have the flexibility to be able to cope with change. They will not be able to do tasks out of order; for example getting their bags packed before breakfast and the entire "getting ready for school" process will stop. The inflexibility may even trigger a meltdown.

Then there is the matter of lack of inhibition. You might feel that this simply refers to states of undress, and in this example it could.  The lack of Inhibition however refers to a much wider issue.  In particular, it refers to a control mechanism which tells us when "enough is enough" or when certain behavior is unwarranted.  For example, a child lacking in inhibition may not realise when a parent is dangerously overwhelmed and may continue to "push buttons" way past a point of safety.

The Big Picture
This may sound like your child but I'm not necessarily here to offer solutions to the problems of getting ready for school. This post wasn't about that. It was about the lack of executive functioning.  Take any sequence of tasks or anything for which good planning and "common sense" is required and you'll spot the executive functioning issues.

This is what we need to be addressing with children on the spectrum.

Wednesday, November 16, 2011

Autism Advocacy and Points of View

There's been a lot of discussion in the blogsphere recently culmulating in this interesting and insightful post about drawing lines in the sand. 

The ideals expressed were admirable but I could see several places where the author of the post hadn't actually met them (based on things said in comments and earlier posts). Like a true aspie champion of logic, I was about to point them out when I realised two things;

  1. It's not very nice 
  2. My slate isn't exactly clean either

It got me thinking about the bigger picture and inspired me to take a look at advocacy and different points of view. In particular, I was wondering how I personally would go accepting all of these conflicting points of view.

The Indivisible Point of View
We're advocates right? We have to have a point of view. In my case, I'm advocating for my children's right to be accepted as part of normal society. For their right to do things that others do and for their right to live without being judged on their "genetic inheritance".

These are pretty important rights.

It's hard for me to find space in my point of view to accept the views of people who feel that their children have been "stolen by autism" or "corrupted by vaccines". The same goes for people who feel that other people's children simply "need a good spanking".

It's even harder when those points of view actually do damage, whether to a person's self esteem or to their well being. This happens via overly restrictive diets, institutionalisation, chelation, shock therapy and ... even murder.

Seeing and Empathising isn't Necessarily Agreeing
The point is that we simply can't agree with all of these points of view. It's impossible - and yet, until we've walked in another person's shoes, we're not qualified to pass judgement.

We need to accept that these points of view exist and at least try to understand and empathise with them. Yes, even murder - though I'll admit that's a very difficult one.

Note that I'm not saying that you should agree or even accept it as valid. Just accepting the fact that the point of view exists and that people may hold it is enough. It will help you to move on and ignore, advocate for change or provide gentle and supportive correction.

Points of view are one thing - actions are a different thing entirely.
All Points of View are "grey" even extremist ones. 

So, having accepted that a point of view, no matter how wrong, has the right to exist; how do we change it?

First of all, we should ask the question; should we change it?  Is it so wrong that the answer is black and white?

For some points of view, murder being the obvious one, this should be a no brainer. There are still some grey areas though...

Would everyone agree that the mother who deliberately drives her car into the river to kill her autistic children is wrong?

She's obviously unwell and has probably suffered a lot with her children. Her actions are likely the combination of stress with lack of support and extremes of experience.  Even when these things appear premeditated, it's unlikely that any parent with their full wits about them would want to kill their own offspring.

Then there's the question of "the more socially acceptable form of murder"; abortion.

Is the couple who agree to murder a child they've never seen on the basis of a test which could be wrong any less guilty?

Why does society deem this as acceptable and indeed for some conditions such as downs syndrome, accept it as standard practice? Perhaps the issue isn't so black and white after all.

Advocating Against Different Points of View

Now that we've accepted that these different points of view and grey areas exist, is there a need for us, as advocates to change them?

Probably - but like everything, it's a case of "pick your battles".

Case in point, the immunisation debate.

We know that mercury in immunisation shots isn't the cause of autism.  At least, it's not the sole cause.  We also know that autism tends to follow genetic lines and doesn't need a bump on the head or a refridgerator mother.  At the same time there are enough disturbing cases of children who appear neurotypical only to "become" autistic around the time of their immunisation shots.

We know that tests have been carried out to demonstrate that immunisation doesn't affect the majority of children this way but can we really be certain that a certain type of shot doesn't act in a wildly different manner in a certain type of genetic material?

It's not a battle we can win and although I'm in favour of immunisation, I think it's a perfectly good idea for a parent who has one child affected by autism (which coincides with shots) to avoid giving the second child a shot.  It's a risk but it's potentially the lesser of two risks.

A few years ago, had I been asked about this, I probably would have vhemently tried to change your mind. I like to think that I've grown since then - and that I can accept the point of view.  Perhaps by accepting that point of view, I'm keeping my mind open for future discoveries.

Other debates however are less acceptable to me and I feel that I can sometimes make a difference by "nudging".  Ignoring the big issues because we've already discussed murder, one particular pain point for me is the negativity surrounding autism.

I've read a lot of blogs with parents discussing the negative aspects of their children and wives talking about their "husband issues" and wonder what will happen when the person they're talking about eventually reads those writings? How is it going to affect their self esteem.

I can't tell anyone else what to think but I can post helpful (not judgmental) comments. I can offer support and alternatives and I can try to promote a positive view via my blog.  It's the best I can do.  I can offer change but I can't force it.

As they say, "you can lead a horse to water but you can't make it drink".

Wednesday, November 9, 2011

Tony Attwood's Three Requisites for a Successful Relationship

I just finished reading an Aspergers Relationship book today (it's excellent by the way and a review is coming shortly). The book had a great quote from Tony Attwood near the end and it's such a great quote that I've been mulling it over all day long.

I thought it was worth repeating here;

Clinical and counselling experience suggests that there are three requisites for a successful relationship.

  • The first is that both partners acknowledge the diagnosis.
  • The second requisite is motivation for both partners to change and learn.
  • The third is access to relationship counselling modified to accommodate the profile of abilities and experiences of the partner with Aspergers Syndrome.

- Dr. Tony Attwood, "The Complete Guide to Asperger's Syndrome"

Let's look at Tony's three requirements in more detail;

1. Both partners acknowledge the diagnosis
I know that I'm often saying that "it's just a label" and "it doesn't change you as a person" but it's still extremely important to accept the label.

An NT who doesn't accept their partner's label will simply brush off their partner's traits as;

  • Rude
  • Disinterested
  • Self-Obsessed
  • Unemotional and/or lacking in empathy
  • Lacking in Social Skills
  • Lazy
  • Whining
  • Frigid

These are all very negative and impact not only the relationship but also the aspie partner's self esteem.

In some relationships, the condition is reversed. The neurotypical partner fully accepts that their partner has aspergers but the partner with aspergers can't accept the label.  Unfortunately, if you can't even accept your own traits, then you won't be in a position to change them.

2. Motivation for both partners to change and learn
You'll notice that the second requirement specifies both partners.  Too often, change is driven by a single partner and ignored by the other.

The requirement doesn't specify that the level of  motivation should be the same and it's often the case that one partner will have to do more work than the other to bring balance to the relationship. The rule isn't about the amount of effort one puts in, it's about willingness to change - on both sides.

3. Modified Relationship Counselling 
The third requirement is a  really interesting one.  It suggests that normal relationship counselling will not work. You need to see someone who understands Aspergers Syndrome.

This is actually a very tricky requirement. You'd find it difficult to find even a local doctor who understands how Aspergers Syndrome presents in adults - particularly if the aspie is female.  You certainly won't have a great deal of luck finding a local relationship counselor who fits the bill.

There's no understating this rule. To a normal counselor, a person with aspergers may appear cold, unemotional or unconcerned about the relationship. They may appear to care more for their "rock collection"  (or other special interest) than they do for their partner.

Even if your counselor knows about Aspergers Syndrome - or Autism, it's probable that they only understand it in the classic sense.  A lot has changed over the years and the perception of aspies as people without empathy has undergone a drastic change recently.  Unless your counselor is aware of this, they won't be in a position to help the relationship.

Then of course, there's the subject of children.  Caring for children is one thing - and it puts enough stress on a relationship.  Caring for children with Aspergers Syndrome is a completely different thing altogether.  Since Aspergers is at least partially genetic in nature, it makes sense that your counselor won't really be able to understand your case without understanding how children with Aspergers are different.

So there you have it.
Tony's three criteria for successful relationships in which one partner has Aspergers Syndrome.  Have a think about it.... does your relationship satisfy all three criteria?  If not, is there anything you can do about it?


Sunday, November 6, 2011

Medications and Special Needs - It's Your Choice

This is a best of the best of the best post.  Check this link after November 15 for a lot of of different perspectives on the same topic by other writers associated with Special Needs.

If you're new to the world of special needs, you'll quickly become acquianted with a list of "hot topics" ranging from debate about the use of jigsaw logos, to the words aspie, aspergian, autie and others. Of course, the biggest debate of all has always been - should we or shouldn't we medicate our children?

It's a good question and there's no easy answer.

Protest Groups
You really can't discuss this topic without talking about protest groups. There are protest groups everywhere and they all have different motivations. Some of them are against any kind of medication - including aspirin, some are based on "knee-jerk" reactions to incorrect research and some are simply reacting to "bad events" or bad press.

Of course, there are some good protest groups around too but they're usually drowned out by their noisier counterparts.

Most of the protest groups have ulterior motivations. They're often less concerned with children than with their own profits, sensationalism and beliefs.  You need to be very wary of their influence.  If you're reading an article and it seems particularly biased against medications, check carefully to see whether it's associated with a protest group before you trust its contents.

Protest groups are also responsible for "programming" friends and relatives to go on the attack against parents who have legitimately been prescribed medications for their children.  You have to watch their sources too because as soon as an anti-medications show airs on a current affairs channel, they'll be on your back again.

Pro Groups
It might sound strange to suggest that there are actually groups out there who are "pro medication". After all, who wants to medicate children unless it's necessary?  Drug companies, that's who. Unfortunately, in many countries, drug companies provide incentives for doctors to prescribe their medications to children on a long-term basis. It's in their interest to get people hooked on their product from an early age.

Sadly, there's no easy way to identify these practitioners for sure; but probably the best clue is when your doctor is constantly recommending that you try one medication after another instead of suggesting therapy and classes. For example, if your child has anger issues, it's perfectly feasible that medication could be the only answer but unless you've given the alternatives, coaching for instance, a go, you'll never know.

Medication should be one of the last resorts, with only surgery being perhaps worse.

Your Choice
The point is that not all medication is good for you but equally, not all medication is bad for you. As parents, you have to make the choice based on the available information - which is unfortunately, biased regardless of its source - and subject to change in the future.

Your best bet is, if possible, to talk to other parents who have children on and off medication and observe the differences between the children.  Note that all children will react differently and although a medication works for one child, it may not work for another.

Find out from your doctor how long it should take before you start seeing effects and stick to the timetable. If the medication appears to have no effect, discontinue.

The other thing to remember is that it's your choice every day.  You don't simply make the choice once and forget because you need to continually review the use of medication as your child gets older, as alternatives come on the market and as more research which could highlight the negatives of your current medications becomes available.

Keep an open mind but at the same time, keep a good eye out for safety and common sense.