Wednesday, February 27, 2008

The Aspergers Brand (Getting the Aspie Label)

Subjectivity in Aspergers Diagnosis
There is no litmus paper test for Aspergers. The label is applied on the basis of set criteria (DSM IV) which are determined by subjective analysis. Sometimes that analysis is in the form of questionnaires, sometimes as day-long tests and sometimes it seems to be almost arbitrarily applied by practitioners.

The symptoms of Aspergers vary from one person to another both in presence/combination and in intensity and no two aspies are exactly alike. If anything, the aspie label is quite similar to the online "geek tests" and coincidently, there is a high correlation between geeks and aspies.

This isn't to say that Aspergers is an imaginary condition but rather to say that unlike specific tested conditions where the label describes the symptoms, Aspergers is the opposite. Here, the symptoms describe the label.

An Example: Deafness
A deafness label automatically means that one will have certain symptoms - difficulty hearing and as a result, speaking),

Using our deafness example to illustrate how the Aspergers label is different;

Someone has certain symptoms - difficulty hearing and as a result, speaking - therefore, we diagnose deafness.

This doesn't hold water. A person who has the difficulty hearing/speaking symptoms doesn't automatically have deafness. There could be other reasons.

In the Aspergers diagnosis, if you display the syptoms, then you get the label.

Reactions to the Label
Aspies and their Parents, Spouses etc, often have a wide range of reactions to the new "Aspergers" label. These reactions include; Denial, Grief and Frustration. Surprisingly, not a lot of literature mentions happiness as a reaction - presumably because its not seen as a "real" reaction.

As someone who was diagnosed late in life (after all of my main trials; school, university, marriage, kids, work, mortgage), I'd already accepted who I was. My reaction was happiness because now I have an explanation for why.

Should you get Labeled?
This is the million-dollar question isn't it - to label or not to label. The best answer I can give is that you need to decide what labeling will achieve. In school-age kids, labeling will provide them with a lot of benefits, additional funding, extra time in exams etc. There's a very good reason to be labeled.

Adults, on the other hand, receive no such benefits - except in extreme cases, where they probably are already receiving benefits. Unless labeling is free of charge, or would provide considerable personal "satisfaction" benefit, there's no reason for an adult to be labeled as an aspie.

Friday, February 22, 2008

A couple of Good Aspie Links

Just thought I'd post a couple of great Aspie links;

Napoleon Dynamite (defining Aspergers)
I recently watched this film which others have said is an aspie film. It is. It's funny but also very real. Anyway, someone has gotten clips from this film and put them together in a "Definition of Aspergers video". It's well worth a watch. Don't forget though, Napoleon seems to be a bit extreme;

The Good Side of Aspergers
Ok, now the video above mostly points out the bad things about Aspergers, so I figured I'd put a link to a recent article on known aspie geniuses that was in the UK Telegraph yesterday.

Albert Einstein 'found genius through autism'

By Nic Fleming, Science Correspondent
Last Updated: 4:01pm GMT 21/02/2008

Sunday, February 17, 2008

Leveraging the Special Interest to Improve your Aspie Child's Basic Learning

Contrary to popular belief, most aspies aren't born with amazing reading or mathematics skills. These are reserved for the select few. Most aspies seem to have difficulty at school academically in the early years and socially in the later years.

The Aspie Learning Catch-22
Some of the biggest problems aspies face, particularly in the primary school years, is the ability to concentrate on a topic (motivation). The problem is that the aspie tends to be very focused on his or her special interest and has great difficulty maintaining focus on other things.

In the primary school years particularly, other things cannot become interesting until the aspie overcomes some early hurdles. Reading is a good example of this. While there are undoubtedly a lot of books out there which would satisfy the aspie child's special interest needs, these books aren't accessible until at least rudimentary reading skills are acquired.

It's a Catch-22, the aspie child can't enjoy reading until they already have basic reading skills, but they can't easily develop these skills until they can enjoy reading.

Overcoming the Problem
The crux of the problem is that the aspie has great difficulty developing those rudimentary reading and mathematics skills because they are unable to sustain an interest in their learning materials.

The special interest is absolutely key to learning in Asperger's children and you should use it whenever possible.

This means that parents often need to become writers, rather than simply being readers. If your child comes home with a book, for example; a Dick and Jane book, you may need to rewrite that book to use the names of Transformers, video game characters, Saturday morning cartoon characters or even pets/animals. This rewriting isn't very difficult but will substantially increase your child's chances of learning the work.

Similar liberties need to be taken with speaking and writing and when possible, the child should be encouraged to speak or write about their favorite topics rather than being forced to use school only topics.

Good examples of where this can be achieved include situations where a child is asked to write a sentence with a particular word in it or where they are presenting "News" to the class.

I am not suggesting that the child should be allowed to follow his own particular agenda based entirely around the special interest for the majority of the school year. Schools cover a variety of subjects including history, science and religion which obviously cannot be based around the special interest (unless there is direct relevance).

Often those other subjects will be interesting in their own right and it's normally the basic building blocks - reading, writing, spelling, speaking etc which really benefit from the inclusion of the special interest.

Monday, February 11, 2008

What are Curebies and Why are they Dangerous?

This wasn't the topic I wanted to write about today but time is short and I'm very busy and I already had this one prepared, so here goes.

What is a curebie?
You are a curebie if any of the following ring a bell.

1. You think that one day, with enough funding, someone will invent a magic pill, therapy or operation that the kid can take which will make them Neurotypical (NT).

2. You think that you can simply change a kids diet, parents, proximity to power sources, TV or Game viewing/playing hours and they'll suddenly become NT.

3. You think you can make a kid NT by electroshocking them, beating them, locking them up or otherwise torturing them into normality.

4. You think that being Aspie or Autistic is wrong..wrong...wrong. A burden thrust onto you (a parent) which needs to be "fixed".

5. You don't think anyone would be happy the way they are unless they are NT.

6. All you want is for your child to be the same as everyone else's child.

7. You think that any money collected for autistic children should be funneled into research into finding a cure rather than being spent on improving their quality of life.

8. Your child's condition diminishes your love for him/her - you'd love them more if they were NT.

9. You're certain that Asperger's or Autism isn't genetic, it's caused by outside/environmental factors which can be cured.

Why are Curebies Dangerous?
The main reason that curebies are dangerous is because they're usually willing to take any steps possible to convert their child to a normal one - even if there's risk to the child's health, longevity or mental state.

Curebie therapies are often quite nasty and many (most) of the doctors who support cure movements tend to fall into the "quack" category. In some cases, the curebie medical profession seems very similar to internet scams with the main aims being more monetary that social.

Most of all though, it's because people and families get hurt.

Sunday, February 3, 2008

Aspie Food Habits in Children

Aspies have a lot of trouble with food.

I've already covered parts of this as part of the "under-eating in children" section of How the Whole Asperger's thing can be detrimental to your Health but now it's time for more detail and a few real-world examples.

Why don't aspie children eat?

  • Texture
  • Memory
  • Distraction
  • Medication
  • Taste

Texture plays a very important in aspie eating habits. For example, I have problems eating peaches because of the feel of their skin and because of the "powdery" taste of the fruit within. I also have a lot of problems relating to sultanas which I believe began with texture issues. For a long time I could eat sultanas in biscuits because they were dried out but not when they were in cakes. now I can't eat them no matter where they are.

Possible Solution: if you have a texture issue, you can get around it by mashing or blending the ingredients. Just make sure that there is no skin left on the object before you serve it. If the child still refuses to eat/drink the substance (without knowing what the ingredients are) then you probably have an issue that isn't texture based - it may be taste.

The role of memory in aspie eating habits is very underestimated. This is mainly because very few aspie children communicate about the problems and it tends to lessen as you approach adulthood. I guess that probably the best rule to give you is to never feed an aspie child while they are under stress. Of course, this assumes that you have any idea that they are actually under stress.

I remember having lunch with my family as a child. I'd just had a pretty bad argument with my father at the time and was sitting at the table somewhat "steaming". My mother served us in a piecemeal lunch consisting of various slices of fruit and veg which included slices of banana. I was so angry with my father at the time that I was refusing to look at his face. I ended up staring at his shirt instead. It was then that I started to realize just how much a sliced banana looked like the buttons on a shirt.

I was still pretty angry with my father the following day and my mother served up pretty much the same lunch again. This reinforced the buttons to bananas link and pushed it into long-term memory. I also got into trouble for refusing to eat my bananas.

The long term effect of this was that I went off bananas for about 10+ years. I also had problems touching the buttons on my shirts for that period. Actually, I still have some textural problems with buttons and there are some types of buttons with darkish - sort of bruised fruit patterns in them, (I call them "tiger buttons" because they're a bit stripey) that I still can't even look at.

When aspies focus on their special interests or when they're out playing they can often completely lose track of time - and forget to eat. I still have this problem at work and it's quite embarrassing because I'll often have guests in for a meeting and will forget to feed them or offer them drinks.

At school, distraction is a big problem because during lunch time, the aspie child is trying to cope with a huge amount of multi-directional stimuli. Remember that aspie children are often more distracted than NT children.

Some schools, including the one that my son goes to, make sure that the child brings home every bit of lunch that they don't eat. The aim of this is to make parents responsible for providing the child with food that they enjoy eating. What this doesn't address is the fact that the aspie child probably does like the food but is way too busy to eat it or even to remember that it is in their lunch box (or on their lap).

I've seen this effect with my kids when I let them eat while watching TV - the food is right in front of them and they can smell it. They're hungry and it's food that they like. The problem is that the TV creates so much distraction that the child won't remember to eat without constant prompting.

Since there is no constant prompting at school - the school lunches just aren't going to be eaten.

Possible Solution: Give the child a token food to get the teachers off your back. The food should be something that is wrapped and won't go off after a few days (like a muesli bar). You should also give them some money in case they get hungry while at school - that way they can buy some lunch if necessary.

Feed them as soon as they get home - lunch food at 4pm, not dinner food. Don't worry too much about spoiling their dinner, but keep the after school food fairly healthy and reduce the amount you give them for dinner.

It's actually healthier to eat big breakfasts and small dinners anyway though it's not considered too healthy to skip lunch - we're not skipping it anyway, just postponing it a bit.

If you try to force your child to eat their school lunch, they will just be forced to find more creative ways of getting rid of it. I remember being at school and being very selective about where I sat. I always sat on the balcony above the rubbish bin. This gave me the perfect opportunity to discreetly drop my sandwiches off the balcony. The only time I got caught was when moved the bin during lunchtime and found the ones I had missed lying behind it - still wrapped up.

I'm a little skeptical of this but there have been a lot of studies that show that medications such as Ritalin do suppress appetite. The reason I am so skeptical of this is because aspies are well known as picky eaters and Ritalin is not technically an Asperger's drug. I'm not sure how reliable the control groups used in the research are.

Nevertheless, if you have your children on any medication, make sure that you take notes before and after (on and off) medication - and make sure that their weight is checked regularly by your paediatrician.

Most people have one or two foods which they don't enjoy the taste of. I've not seen this as a specific aspie thing. If your child doesn't like the taste of a particular food, there's nothing you can do. Find an alternative food.

Friday, February 1, 2008

A really good description of Aspergers that you could give to others

Well, we've all heard the clinical definitions of Aspergers. Here is a site with a great description that is suitable for giving to other people;

Very down to earth.