Monday, 30 November 2015

Psychological Questionnaires and Autism - "Paranoia"

It is a delight to be working with so many colleagues in Psychiatry, Psychology and the related fields.

One of the questions I get from delegates at lectures is whether standard psychological tests work with autistic people.

Depends on the test.

Let's look at the Green et al "Paranoid Thoughts Scale", Part A, as an example.   I note that there has been some limited research into autism and paranoia, using such questions.  The results have left the researchers rather puzzled.  I'm not surprised.

The test subjects are asked to answer questions about the last month of their lives.  For each one, they rate the answer between 1 (never) and 5 (huge amounts of times).  Ideally, a person would have a very low score.

Autistic people are very literal, and will not 'read for context'.  Generalising, of course. But one must start with that in mind.  We also know that 80% of autistic individuals really do experience extensive bullying, and that autistic individuals often do have negative experiences with others.  So a literal answer of 'yes' may be completely accurate information.  The research into these things is there for all to find.

Question 2:  "I often heard people referring to me".   Here's our first real challenge. For example, if I thought about my last month, I'd confidently say that was a yes.  But...I have excellent hearing, and I am a trainer/lecturer.  I really can hear people chatting positively about my work in the training courses and lectures.  So, my response of '4 - often'  is accurate, and reflects reality.  I have not read for context and realised that this question actually meant, "I often heard people talking about me in nasty ways" (or words to that effect).  If asked that, I'd say no.  Not once in the last month.  But I have now scored highly for paranoia, even though not paranoid.

Question 6:  "People have been dropping hints for me".   I don't know what this question means.  Dropping them where?  On the floor?  <visions of people writing handy hints on slips of papers and leaving a trail of them>   This is an expression.   It may mean nothing at all to someone with a more visual form of autism.  I would suggest a rephrasing, but someone will have to tell me what the question means, first.  I'm genuinely baffled.  Remember, I'm a real live autistic person, so you get actual responses.

Question 7:  "I believe that certain people are not what they seemed".  I don't know what this means either.  People are people. They're not going to turn out to be dolphins or bookcases.  The question needs re-phrasing so that most autistic people understand it. 

Question 10:  "I was certain that people have followed me".  Remember how literal we are?  My brain delivered all the information for the last month on this.  The times I've been in queues of traffic with lots of cars following one another, as they do, quite normally.   Or in queues to get lunch, where we all follow one another in the queue.  Sometimes there are people in queues behind me.  Logically, they are following me to the front of the queue to pay for their food, etc.  So the answer is definitely yes.    But that's not what the psychologists are hoping for, one assumes?   The question needs rephrasing. 

Just a few examples.  But one can see how fast a questionnaire can yield useless or misleading results.  We get a lot of autistic women, for example, who are misdiagnosed with schizophrenia.  It's possible to see how that happens. Would I use the GPTS for autism?  No.

Do always check for understanding.  Be prepared to explain and rephrase questions, and then carefully note how that was done.  Think carefully about the answers given.  A lot of autistic people are ending up with wrong diagnoses because we do not understand the evaluation questions.  It can lead to inappropriate medication and very poor outcomes for us. 

Autism, as we know, is not a mental health condition.  It is a global cognitive difference, with areas of ability and difficulty.  It is there for life, and our lives can be vastly improved with better understanding from others, clear instructions for us, and a good sensory environment.  Paranoia is not one of its diagnostic criteria.  If anything, many of us are too trusting and too na├»ve. 

Our literalism can be a major obstacle to getting the right diagnosis and services.  Do make sure that you get good training in autism and evaluation.