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.
Sunday, 3 May 2020
Autism and The Myths around Violence
We've had some strange myths that autistic children and young people ("CYP") are, on average, more violent than non-autistic CYP.
Is that so?
Let's look at the research.
First of all, about 1 in 30 CYP is autistic. All IQs, all genders, all ethnicities, faiths and backgrounds, and all sorts of different personalities.
Second, most autistic people care deeply about others.
If you want a run-through some modern general research on autism, rather than the stuff dredged up from the 1940s, I'd recommend the papers in https://annsautism.blogspot.com/2019/01/autism-some-vital-research-links.html which talk about lots of new findings. About honesty, integrity, the reason that our senses are different, & about why we need what we need...
And why a combination of bullying, ostracism and some approaches to 'dealing' with us have been an utter disaster which caused immense pain and distress. Pain and distress in life is so bad that 6 out of 10 autistic people report symptoms of Post Traumatic Stress Disorder at some point in life, from the latest study. Remember, if you will, that it's the autistic people who are supposed to be the problem...
So, where did this idea come from, that we were more likely to be violent?
I've had a look back through some old research. https://link.springer.com/article/10.1007/s10803-010-1118-4 is a bit of research from 2010. It's quite famous. 275 other research papers rely on the information in it.
OK, let's look at what this research paper says. There were 1380 children age about 9 yrs old. They were part of a group where the parents were seeking support, so presumably had behaviours of concern already. That's an important thing to remember. This isn't 'all the autistic children in the country'.
Nearly all of them were male, which is odd. Nearly 9 out of 10, in fact.
Their average IQ was 15 points below the average for the country, with some well into the range of learning disability. So, this doesn't tell us a lot about females. In fact, it tells us nothing, as the researchers didn't separate out the info for females.
Let's start by recalling our own behaviour as a child.
Be honest with yourself: Did you ever, even once, push, shove, barge past, elbow, or hit another child, e.g. a brother, sister, someone in the playground? Oh my! In that case, you are Violent. Did you know that?
OK, let's look at their findings. They divided the answers into four groups. Here's the ones for the autistic CYP's aggressiveness to their caregiver (Mum, Dad, etc).
No aggression - 44 out of 100.
One or more episodes of rough play or defending themselves when attacked - 25 out of 100.
One or more acts of definite aggression e.g. perhaps a single hit, a single kick, some time in their life until now, 24 out of 100.
Violence, ever, using something to hit the person with, e.g. a stick, 7 out of 100.
They looked at whether CYP level of actual violent behaviour of any kind was the same in different years, and noticed that by age 15-17, only about 25 out of 100 were showing any such difficulties, so three quarters were not.
The team didn't consider why the CYP might have hit out at someone, perhaps once in a lifetime.
Was it extreme pain?
Was it fear?
Was it emotional distress?
Was it utter exhaustion after barely sleeping for weeks?
Was it during a meltdown, which is strongly linked to electrical 'spikes' in the brain activity and seems to be a brain event, not any sort of actual deliberate planned aggression?
Was it actually self defence, but the parent hadn't realised it?
Was it in fact another health condition, etc that was to blame, not autism? We're not told how many of the CYP also had ADHD, or conduct disorder, or a mental health condition. Learning disability wasn't really factored in either, and we're told nothing about whether communication was enabled. Not being able to communicate, and not being listened to, is such a source of anxiety for so many.
We weren't there for any of the incidents, so we have no idea what actually happened. And we don't know whether it was in fact autism that 'caused' any of this.
And, this is 2010. 10 years ago, when we had found only a fraction of the autistic children. Not most of the girls, not most of those from the BAME communities, not those who are quieter, not those who 'mask' their autism, so go unnoticed, peacefully. So many who were never in this paper.
What we have is a whole set of unknowns in this research paper.
What we do know is that nearly all of the autistic CYP in this curious bunch who were picked for this study were peaceful. Nearly 7 out of 10.
What we don't know from that paper is whether non-autistic children are less violent. Like most studies, the researchers didn't bother to find out. What was important was claiming that autism equals more violence, it seems. (I grow weary with the negative narrative about us. Can you tell?)
Let's look at whether non-autistic children are violent.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3283570/pdf/nihms2126.pdf is a good starting point, by Tremblay and colleagues, 2004.
"By 17 months of age, the large majority of children are physically aggressive toward siblings, peers, and adults".Oh dear. That rather spoils the picture of autistic children being the more violent ones, doesn't it.
"Three trajectories of physical aggression were identified. The first was composed of children who displayed little or no physical aggression. These individuals were estimated to account for ~28% of the sample. The largest group, estimated at ~58% of the sample, followed a rising trajectory of modest aggression. Finally, a group, estimated to comprise ~14% of the sample, followed a rising trajectory of high physical aggression.
So, only 14 out of 100 non-autistic children in this younger age group were peaceful, and the rest were being physically aggressive. Remember the study for the autistic CYP asks if they have *ever* been aggressive. Their figure was 44 out of 100, not 14 out of 100.
The autistic children are more peaceful overall, based on these two studies. It's not a fabulous match, of course, since the autistic CYP are older, in their study.
So, what else can we find to prove this allegation that autistic people are more violent, in some way?https://www.sciencedirect.com/science/article/abs/pii/S0890856717301508
is a 2017 paper from a huge set of info in Sweden. It looked at whether autistic people had more criminal records for violence. Nope. 28 out of 100 of the autistic people also had a diagnosis of ADHD and/or Conduct Disorder. The study found that those, not autism, were linked to crime. If an autistic person had neither, they were no more likely to be violent than anyone else.I've worked amongst autistic people for decades.
I've never met a more peaceful group, on average. Many working in dedicated ways as (e.g.) Doctors, faith leaders, Nurses, care workers, parents, volunteers, academics, engineers, retail workers, etc. Peacefully, collaboratively. Others unable to work for various reasons, and enjoying life in peaceful ways in various places. A few, desperately in pain and showing huge distress behaviour that may appear to be 'violence'.
If you had a friend who is diabetic, and they went into a diabetic episode where their behaviour became erratic for a bit and they pushed you out of the way, would you think of them as a nasty violent person that you didn't want in your life? What about a friend who went into an epileptic seizure and kicked out whilst in the middle of that? Are they a nasty violent person?
Consider that, and then consider how you view autistic people.Let's look at what's done to so many autistic people. Go back to that blog I recommended earlier and look at how many autistic people are beaten, raped, defrauded, otherwise assaulted, otherwise bullied, left out of things, ignore when they try to make friends. Forced into painful and humiliating normalisation programmes.
That link is a bracing NSPCC report into how many children and young people of all kinds experience violence and worse from some parents and carers in the UK. Between 40 and 50 out of every 100, at some point.
And autistic CYP are still more peaceful than other people, on average. I say well done to the autistic individuals.
Exceptions apply, of course. In any population of people - autistic or not - there will be some who are violent. And, if any CYP is violent, obviously there needs to be proper thought put into why. That's why autistic specialists work with parents and teams, to help find answers. To help spot triggers for events that perhaps others have missed. All people who need support should get it.
But for sure I am mighty fed up with the narrative that autistic people are more violent. That leads too many parents to say they don't want an autistic child, because such a child is going to hit them. Actually, less likely than a non-autistic child doing so, it seems. On average.
It leads to too many groups throwing out autistic people 'in case we're violent'.
It leads to lost jobs, lost relationships, lost confidence, lost friendship opportunities, loneliness, and onto very poor outcomes around mental health and (for too many) wishing to take their own lives.
These are just starting points. This isn't a formal essay.
But goodness me, they're important bit of information to think about, aren't they.
Thank you for reading.
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