Hi - this is from the old forum archives and it is worth another look in case some folk havent seen it.....

written by pandie

posted Wed 19 Oct 2005 09:16AM
Asperger notes

�Potted Asperger�s� - Direct from the Horse�s Mouth.
Notes from a little talk I gave recently

INTRODUCTION:
I will be talking from the direct experience and perspective of a Mum and carer of a daughter with AS, with a contribution by my daughter.
I�ll include main points and hopefully useful insights that we both feel would be most helpful for professionals to understand. It is bound to be subjective to an extent. My daughter has read and approved this �script�.

I WILL COVER:
ï‚· The presentation of AS and some general points.
ï‚· Difficulties and characteristics.
 The parent�s point of view and what they need from TAs.
ï‚· Siblings.
ï‚· The support that my daughter would have liked at school.
 Educational and other issues to consider � parents have to consider these
whether they wanted to or not. E.g.: Inclusion, Diagnosis versus �labelling�, Disaffection from the education system - Is school absolutely necessary? What would appropriate provision and support for Aspergers look like? General disability issues.

Useful web site addresses and books are listed at the end of the handout.

THE PRESENTATION OF AS IN INDIVIDUALS AND SOME GENERAL POINTS:

ï‚· This is a hidden, complex, subtle, (not subtle as in negligible, but as in
Extremely hard to diagnose and describe) disability, other people often know very little about Asperger�s. They cannot make allowances and may make assumptions and judgements about the person with AS, or take their behaviour personally. E.g.: The person with AS is seen as �horrible�, �anti-social�, �slow�, �controlling�, bossy�, �clueless�, �deaf�, �not paying attention�, �rude�, �abrupt�, or �tactless�.

 Asperger�s is a form of Autism but those with the condition are generally said
to be at the more able end of the spectrum. It is sometimes described as �mild autism�, but MILD it is MOST DEFINITELY NOT.

 Some Asperger people do not have a language delay, but some do. (E.g. diagnosis of 3 year language delay, and Semantic Pragmatic Disorder, when 6, updated to Asperger�s syndrome age 11. Some see SPD as a separate disorder from Asperger�s Syndrome, but the jury is still out on this. There are web sites just devoted to SPD, and articles which try to pin down the subtle boundaries between autism, Asperger�s syndrome and Semantic Pragmatic Disorder.)

ï‚· Some say that the difference between Autism and Aspergers is that a
�classicly autistic� person does not need social contact, except to fulfil their needs, but those with AS want friends, but through no fault of their own lack the skills and ability to sustain relationships. This has terrible consequences for them.

ï‚· Girls present differently from boys. This has made the diagnosis of girls
difficult. This may be why the ratio of boys to girls appears to be higher. Girls� brains are wired differently from boys in any case. �Normal� (sorry to use this word, perhaps I should substitute �mainstream� or �ordinary�, or �non-Asperger�) girls usually have more social ability, so some say girls with AS are actually therefore more severely affected than the boys. Some say there are less girls with AS because a mother�s body�s auto-immune system rejects the foetus in the womb, and it is naturally aborted.

ï‚· Those with AS may present differently depending on the extent to which they
are affected, which characteristic predominate, on their individual personality, and whether they are male or female. They are as individual as you or I, but with common autistic characteristics.

ï‚· Some, of either sex, are quiet almost silent, some are very loud and hyper. A
lot also depends on situation and mood.

ï‚· There are other conditions that can be present at the same time, for example
Dyslexia, Dyspraxia (which includes both physical and language difficulties,) Tourettes Syndrome, Obsessive Compulsive Disorder, Anorexia, or Epilepsy. In some cases also Obsessive Compulsive Disorder.
ï‚· Many are gluten (in wheat and other cereals) or casein (milk) intolerant (Leaky
Gut Syndrome � see Autism Research Centre, Sunderland University � Paul Shattock. Please also refer to the MMR debate, stomach problems and autism, Purine Autism, and Allergy Induced Autism.) There can be mild to very severe stomach problems. They may also have the typically autistic problems with the appearance, texture, smell or taste of different foods.
So those with the condition may appear to be fussy / faddy eaters It�s not a choice
to be like this however.
 Someone with Asperger�s syndrome may also have learning difficulties. However
often they are as bright or brighter than you or me. Very varied patterns/ peaks and troughs of ability (typical of AS) can be shown up by a battery of particular tests. E.g.: 98% in some areas, 2% in others. Beware �testing�. E.g. Minimal tests by Educational Psychologist in one hour only can present very false picture.

DIFFICULTIES AND CHARACTERISTICS:

These to a greater or lesser extent combine and compound all at the same time to actively influence the person�s state of mind and therefore behaviour, and make their life difficult.
A panic attack or �meltdown� will result from various contributing difficulties.

1. An individual set of fears and phobias. Spiders, flies, germs, mud, rain, the London
Underground, their school peers, crowds, etc. Sell-by dates on food expiring (the fridge regularly gets cleared out.) �Expert� knowledge / facts from TV, Internet or books can help dispel / lessen the fear. (Parents arguments unheeded.)
2. Chronic (ongoing and ever-present) anxiety.
3. A tendency to sensory overload.
4. Panic attacks / tantrums. These manifest in screaming, shouting, self-harming,
throwing things, banging doors etc. Sometimes for what would seem to most people to be a very small trigger. E.g.: a spider, a fly, in someone who is obsessive-compulsive about germs their coat brushes the floor and is immediately seen as �contaminated� � it will not be worn even on a cold day.
The effect of these explosions on the family � the family lives in a constant treading-on eggshells �Action Stations� mode. They never get used to these outbursts, and in fact it feels worse, one gets less able to cope. In your mind you say �let it go, they can�t help it�, but your body responds on an instinctive human �state of alarm� level � shock / alarm / adrenaline / heart beats fast / stomach feels tight etc, and after a while, this takes a toll on the carer in stress, weariness, and illness. It is everyday and relentless. It is made worse by being totally unsupported by and having to fight the LEA. It is not the AS child�s fault. They do not do it deliberately, and they do not know the effect on their carer. This means un-tempered outbursts. Little or no self-restraint.
Phobias about revisiting the scene of past meltdowns or panic attacks, or about seeing school-age peers in the High Street so you have to walk via the back streets, and avoid school �home times�.
5. Mood can change very suddenly. Sometimes no amount of talk will solve the
Problem especially if it is based on a current obsession or phobia.
6. They have a tendency to get energy surges and go �hyper� and need to go for a
walk, walk in circles, hit or bang something, etc. Many like trampolining, or visits to the gym, or yoga classes to calm themselves down. Some like fairy lights, lava lamps and other forms of gentle lighting to calm down to. Some deliberately drink cola or eat chocolate to make themselves hyper, as they enjoy this �high� state.
7. A current overriding or troubling obsession, or obsessions, or an obsessive way of
thinking.
8. A distorted sense of perspective around what is important / and priorities.
Distorted sense of value of money. Cannot see wood for trees / the main point. Get lost in detail.
9. A lack of common sense. Naivety, vulnerability.
10. Immaturity. Some experts say autism is a life long developmental delay.
11. Seeming maturity and ability beyond years in other ways.
12. A tendency to feel overloaded and panicked with tasks, especially if there are
more than a few to complete, and especially if they do not fully understand what they have to do.
13. Central Auditory Processing Delay � they may keep saying �what?� Despite often excellent (over-sensitive) hearing, processing can take time. Some AS people will not seem to have taken on board what you have said, but a complete answer may follow - and take you by surprise.
They may also find the pace of talk on the radio or TV too fast. Use Teletext subtitles where possible on TV. Often cannot follow the plot in films � the speed of conversation seems too fast as they miss some of the meanings and cannot keep up, and they cannot understand implied meaning. They might constantly ask what is going on, and you may need to give a running commentary. They may not appreciate your need to listen in order to tell them what is going on either, and not allow you to listen! Video everything!
14. AS youngsters find verbal instructions hard to follow, or what is said to them
conversation. Tape recorders could be used in class, where the teacher is sympathetic.
15. AS school children often HATE homework. They may not appreciate a parent�s
attempts to help either. It often (well al