Monday, 25 May 2020
Autism and the AQ Test: Big Problems from the Big Questions
One of the most famous autism pre-diagnostic tests is the AQ test. (Autism Quotient). It's not a diagnosis. But many autistic people use it as a guide for whether they go forward for a formal diagnosis. The creator of this, Professor Simon Baron-Cohen, designed it as a "...valuable instrument for rapidly quantifying where any given individual is situated on the continuum from autism to normality".
It can be found at https://www.autismresearchcentre.com/arc_tests and a search engine will lead you to online interactive versions.
But, there are problems. Many people since have discovered that it's actually not that accurate. For sure if it's a very high score, the person is likely to be later formally diagnosed as autistic. But in the 'middle scores', there's quite a lot of autistic people who don't meet the alleged score for 'perhaps you're autistic - go find out?' So, they may not ever know that they are autistic.
Let's look at some of the questions, to work out why it's a problem.
"I prefer to do things with others rather than on my own".
Well, that depends. What things? What others? Now, if you ask me if I'd like to go to (say) a mapping exhibit at the British Library, with a few autistic friends, I'd be leaping up and down with joy. But, if you asked me to go to a party to chat randomly to some non-autistic people, I would rather hide under the table, thanks. Actually, I'll be leaving about 20 mins after having arrived...
"I am fascinated by dates"
Well, as a fruit, they're quite nice. But a bit sweet, frankly. I prefer apricots. What's this got to do with autism? Wait....not that kind of date? Well, it doesn't say that. And I'm not that fascinated by dates & I don't know many autistic people who are. Wrong question, badly phrased.
"I would rather go to a theatre than a museum"
Which theatre? What's on? Where's the theatre? Is the theatre accessible? What's on at the museum? We aren't told the answers, so I have no context to decide this. This isn't an autism question either.
"I find it difficult to imagine what it would be like to be someone else".
Who? I can imagine what it's like to be other autistic people. But I find it very hard to imagine what it's like to be a non-autistic person. And non-autistic people find it really hard to imagine what it's like to be us. This is called the 'double empathy' problem. See Dr Damian Milton's work on that. Easy to find on a good search engine. So, again, wrong phrasing of the question.
So many badly phrased questions. The answers therefore are random rather than meaningful.
Today, I might quite fancy going to the library, with an autistic friend. Tomorrow, I might want to go to a board games party with another autistic friend. On which day am I not autistic? What happened to me overnight?! Did the autism pack its suitcases and leave?
Particular cultures, ethnic groups, etc may have different answers to the questions. Different expectations of what they would or would not do. Different contexts for what is enjoyable. Females may answer differently from males, for other questions. What of people who don't use written language? How do they answer it? What of people who have a intellectual disability? How do they answer the more complicated questions?
It has some uses, but it's a very 'blunt instrument', to use a phrase.
It's worse than that, though.
Some teams sneak the AQ questionnaire into their research projects to see if they can play 'spot the autistic'. It's not always clearly explained that this is meant to be an autism screening test. I saw an example of this only this week. So, you've given a researcher data that may indicate you are autistic. How safe is that data? How kind do you think the world is, to autistic people? See my other blogs on this... The short answer is 'some are not very kind'. That data can be used against people, alas. It shouldn't be. Autistic people are fabulous and wonderful and worth as much as anyone else on the planet. But this is a world that too often thinks autism = deficit, and once you're identified, you may face a lifetime struggle to regain the trust and confidence of others. For me, diagnosis was still a blessing overall, but I won't pretend that everyone is pleasant about it. People's jobs and relationships can be at risk, if information gets released inappropriately. Awful, but true.
We need to be very clear indeed when asking questions that are designed to screen for autism.
We need to be ethical. Sensible about explaining its limitations.
We need to seek really good consent to obtain, and use, that data.
And we need to be sensitive to how those questions may be answered in very misleading ways.
As part of a much wider assessment, at the request of the person, it has some value, for some. Autism is a different social communication system, a strong need for predictability and routine, a logical and straightforward way of encountering the world, and (often) a different sensory system. That's what it should be looking for. So, it may be useful, for some. But that's as much as I can say about it.
Thank you for reading.