Monday, 23 October 2017

A diagnosis of Asperger's? Part Four

If you've been reading my blogs and thinking 'goodness, this sounds just like me!' then it may well be that you fancy taking this a little further and discovering a little more about ASD and Asperger's in particular.  That was certainly my first step.  However, like OCD, ASD is notoriously easy to self-diagnose based on a few character quirks that are actually relatively common in the general population, so it is important that you tread carefully and don't make too many assumptions.

Minas Tirith in Minecraft.  Just because.
Generally speaking, a diagnosis is only ever going to be helpful if you are finding your ASD traits to be impacting on your life in a detrimental way, or if you have a real need to know the truth behind your inability to operate as everyone else seems to.  If you are happy and getting on with life merrily, then it may not be worth the time and effort of getting a formal diagnosis, despite having some tell-tale symptoms.  However, if you're having significant difficulties in your relationships or at work, say, then it could be a good idea to look into it a little deeper and see if you fit the criteria.

There are many pretty poor quality 'ASD tests' out there - so many that it seems pretty likely that self-diagnosis is very common and possible even (shudder) 'cool'.  This is certainly something that the Aspie community is very wary of, and on forums it would be very wise indeed to know your onions and to have really made sure you are not just a bit shy before wading into conversation.  I have several questionnaires that I can recommend, if only because they are respected by those that actually make the diagnoses; these questionnaires are lengthy and requ
ire real effort, but are likely to give you a clear indication of whether it is worth pursuing a diagnosis or not.

My favourite, and the one that has been used during my current diagnosis (even though I'd filled it in online before) is the 'Ritvo Autism-Asperger's Diagnostic Scale - Revised' or RAADS-R.  This questionnaire differentiates between you now and you pre-age 16, as it takes into account that people on the spectrum often manage to teach themselves ways to cope, meaning that significant symptoms as children vanish in adulthood (well, not vanish, but become hidden).  As such it is more thorough than other tests, and at 80 questions long it's pretty intense!  Answers are a choice between:

a) True now and when I was young
b) True only now
c) True only when I was younger than 16
d) Never true

Here are a few sample questions:

1. I am a sympathetic person

2. I often use words and phrases from movies and TV in conversation

10. I always notice how food feels in my mouth.  This is more important than taste for me.

22. I have to "act normal" to please other people and make them like me

29. Some ordinary textures that do not bother others feel very offensive when they touch my skin

40. I can see in my mind in exact detail things that I am interested in

As you can see, the questions take in every aspect of ASD, including the lesser known sensory experience.  This can include an intolerance of slight warmth, meaning that cool temperatures have to be constantly sought, or strange changes of intensity of sounds that are actually remaining at a constant volume.  Somebody with simple introversion tendencies would score pretty low on this questionnaire.  Once you've filled it in, it places your results against the body of results and against those scores that seem to indicate ASD.  Apparently a score of 140 or more is highly suggestive of ASD; I got a score of 187...

The Empathy Quotient test is another fairly standard one that can be completed online and that you may well be asked to complete as part of a formal diagnosis.  This focuses on human empathy, of course, so avoids those other symptoms that RAADS-R explores, but raises some intriguing questions including my favourite: "If someone asked me if I liked their haircut, I would reply truthfully, even if I didn't like it."  Obviously this is less useful for adult ASD as we will often have developed coping strategies from past experience, ie NEVER TELL THE TRUTH ABOUT SOMEONE'S APPEARANCE IF THEY ASK!!!!!  No doubt this rule will be over-applied, as it is impossible for someone on the spectrum to tell when a person is genuinely concerned and not fishing for compliments.  Hard times.  But, the EQ together with RAADS-R are a great starting place if you are wondering.

After that, a trip to the GP and a request for a referral should be undertaken if you are sure that you want to make that journey.  Obviously the GP will need plenty of reason to direct NHS funds your way, so ensure you know what you're talking about and can give a detailed explanation of why you feel a referral is required.  My GP was extremely understanding and referred me quickly after I explained it all, but then this was after a year or so of speaking with her about anxiety and depression so I suppose she already had a lot to go on - being over-prepared wouldn't be a bad idea.

Good websites and forums:

Reddit's Asperger's subreddit - make sure you know what you're talking about!
The National Autism Society - useful info
A blog - 'Life on the Spectrum' with fascinating insights

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