“It’s Prohibited … He’s in Critical Condition”. Can Reading Fiction Help Genuine Autism Disorders? Perhaps so.

Today’s post is about reading books, which is not one of my favourite pastimes, but it does indeed seem to have significant benefits, particularly if you have autism.

Monty is now aged 16, but I still recall the amazement his teachers at school expressed when his 1:1 Assistant taught him to read (using ABA and endless enthusiasm). Teaching someone who could hardly speak, to read, is no small achievement. 

We have also done endless exercises at home to learn to read, to write, to do maths and of course to speak.

The issue later at junior school was to what extent Monty understood what he read.  There can be a lot of wishful thinking on the part of the parent.

Fast forward to 2020 and Monty spends about an hour a day reading a “grown-up” novel.  This was a plan I instigated and again the question arose, how much does Monty understand and frankly, is there any point in the exercise.

I have no doubt that a decade ago when Monty was reading aloud, it was like a mechanical process, with little comprehension going on.

Today, Monty is far more fluent when writing than speaking, which is a pity, because we all tend to judge people by what that say.

Having read a growing number of novels in the past months, Monty’s vocabulary is changing.  These are not new words and phrases picked up from cartoons or songs.

I recently had to get Monty to use a medical mouthwash, which you are not supposed to swallow.  I was explaining to him, “Don’t swallow it, just swish it around your mouth for one minute. Don’t swallow.” He looked at me and said “It’s prohibited”.  Where did that come from?

While going for a walk down the hill where we live, he was repeating his current favourite story about what happens if scoot down the hill really fast, you will crash into the fence at the bottom, and cry like a baby.  This then gets extended with an ambulance coming, going to hospital and of course being made better.  This time the story became even longer and ended up with the boy being “in critical condition”, which was a totally new embellishment to the story.

So, I no longer have to explain why I now get Monty to read his book every evening; I do not give him a comprehension test afterwards.  I think the results speak for themselves.

My original idea was to add a calm activity that does not involve a TV, phone or computer.  He takes it very seriously and sends everyone away so he can read in peace.  He does actually read aloud, and when gets stuck on a word we can hear him say “try again” and then he goes back and repeats the sentence.

Fortunately, we have a lot of books at home; Monty is now reading from his big brother’s collection.

Why try to teach people with severe autism?

A recurring question that does come up is “Why bother to teach people with severe autism?”.  The answer some people give is “you have to try”, but for how long?

The hope of course is that some of this learning will “stick” and the person can move on to the next level up.  This indeed has been the case with Monty and eventually you end up with knowledge not so different to a typical person.

More often than not, in untreated severe autism, the learning does not stick and development plateaus at a very low level.  If that happens, then focusing on functional, living skills is the way to go, forget about going to algebra classes.

Does Monty need to know about the Periodic Table in chemistry?  Do any of his NT classmates need to know about it?  Probably not, but it is just like mental aerobics, stretching your brain.

You have to be “teachable” to gain any benefit from sitting in a regular classroom.  I do think inclusion with an IEP is generally a waste of everyone’s time.  If you cannot follow the class teacher, you probably should not be in the class.

Where we live there actually is a publicly funded day care service for disabled school-age children, it does not pretend to be a school.

The best option is to make unteachable children more teachable.  I think Lovaas would have claimed that this is what his ABA does, and perhaps it does for a small proportion of children.  I think ABA is a valuable teaching method, but it cannot overcome biological limitations, if they are present.  The other option is to use biology to increase cognitive function and skill acquisition; this has worked for Monty and others.

The Research?  Reading and Autism

Someone actually got paid to do a PhD at Liverpool University in this very subject.  She is a late diagnosed adult with autism, so she is likely researching herself; her autism is far away from severe childhood autism diagnosed in a toddler.

We once had a 1:1 classroom assistant who was clever but pretty clearly “on the spectrum”, it became clear that having an NT assistant is the only way to go.  People with very mild autism think they understand severe autism but, in reality, they are the least likely to have a clue.  The best assistants are themselves the complete opposite of autistic.

Can reading fiction help autism disorders? 

This new research will explore whether improvements in ToM (Theory of Mind) and self-reflection, in association with the contemplation of fiction, can translate to ASD. It aims to develop a reading intervention that can improve 'metarepresentational' capacity, which means the ability to contemplate and think about mental states.

The funding will help in the development of a pilot study to determine the type of material that is best to use – poetry or different genres of literary fiction – and to identify any problems encountered such as visualisation so that they can be counteracted.

Social understanding

Melissa Chapple, said: "We are seeing more research suggesting that improved theory of mind and empathy due to fiction literature can improve well-being in numerous cognitive conditions.

"Over the past year I have been using popular fiction as a self-intervention to temporarily improve social and emotional understanding of those with an ASD, as I didn't agree with the typical view that people on the spectrum can't compute fiction very well.

"My only issue with the intervention was that I couldn't visualise characters and places, so to counteract that I started assigning actors' faces and images of real places and found the intervention really helped.

"That made me want to explore the potential for fiction as a therapeutic intervention in Autism and Asperger's and to debunk the idea that fiction isn't compatible with those of us on the spectrum."

Cognitive ability

It is widely acknowledged that ASDs are associated with impaired social cognitive abilities, such as ToM and empathy deficits, which can result in patients struggling with social identification and in making friends.

Currently available ASD interventions attempt to reduce the impact of traits that may compromise wellbeing while enhancing beneficial individual characteristics. These interventions aim to arm patients with a set of 'tools' for combating traits that they find problematic.

Applied behaviour analysis (ABA), which uses learning principles such as reinforcement to increase favourable behaviour, and TEACCH, a multi-dimensional therapy including cognitive behavioural therapy and skill enhancement, have been found to improve social communication and cognition in ASD.

The strength of these formal interventions is that they are believed to be generalisable, in that parents, carers or the individual themselves can implement the interventions in everyday life for continued benefits.

Potential

As part of the study a number of one-on-one reading aloud sessions will be conducted using people with an ASD diagnosis. They will then be interviewed to assess the benefits.

Melissa added: "If effective, an informal and voluntary literary reading activity would possess the same generalisable benefit of ABA and TEACCH, by encouraging literary reading in everyday life and by having the potential for training relatives, friends and/or carers to facilitate the reading intervention."

I could not find her actual thesis, maybe she did not finish; but I don’t think we are missing much.  Here is an extract from a paper she wrote that was actually published.

Framework Analysis: Reading and Autism

This small-scale pilot study involved five participants, four attending a focus group and the fifth taking part in a single one-to-one interview. All participants were over 18 years of age, fluent in English, and were current or past students at the University of Liverpool in order to reduce ethical issues around intellectual vulnerability. The sample included three participants formally diagnosed with autism, and two who had been referred for professional assessment. All were current or previous higher education students, four of the five participants identified as female.

In her “autism sample”, 40% did not even have an autism diagnosis.  They are/were all university students; they do not have any intellectual disability, but seem to struggle with the concept of gender. In science, you are biologically either male or female, it is very simple and you do not get to choose.

It is now remarkably common that people are referred to as having autism, when they have no such medical diagnosis, or they have had multiple previous diagnoses, like schizophrenia and schizoaffective disorder, but they decide now it is fashionable to say they have autism.  US official autism statistics even include "school-diagnosed" autism, that is behavior not troubling enough to warrant asking for a medical assessment.  It all looks painfully amateur to me.

I would imagine people with high IQ and mild autism are often avid readers.  In the case of some males, probably reading science fiction and comics, when not assembling Lego Star Wars. It only becomes a problem if you read odd things that are far from what they sell at your local bookstore, now possible thanks to the internet.

Many people are probably unaware that a person with autism, as opposed to Asperger’s, may be able to read aloud pages from a book and yet comprehend absolutely nothing.  For them reading does not have much purpose, cognition needs to be improved.

Common sense benefits from reading

I think we can revert to common sense; extensive reading likely improves vocabulary.  Monty’s big brother attributes his wide vocabulary to having been a prolific reader when he was a young boy.

Extensive Reading: A Stimulant to Improve Vocabulary Knowledge

The results showed that EG (Extensive Reading) at both levels indicated improvement in their vocabulary learning after the experiment.

Does extensive reading improve spelling?  It very likely does help, but Monty was good at spelling anyway.  Is the converse true? Quite possibly; I did not read for fun and I cannot spell.

I thought reading in someone with more severe autism might affect mood, reduce anxiety and improve patience.  We saw a long time ago in this blog that music, both listening to it and playing it, is beneficial to most people. A trial even measured the stress hormone cortisol in saliva, after choir practice.

I do think forcing kids to read certain types of books at school is totally counter-productive.  They should find genres they actually want to read. 

Conclusion

Even if you are not entirely sure how much is actually comprehended, reading fiction does seem a good addition to the activity list for a teenager with autism.

I do actually hate feeling the need nowadays to add “severe” in front of the word autism. In what I consider severe autism, you would not even be reading simple fairy tales, let alone two hundred-page novels.

In 2020 most people now think autism refers to high IQ people, who are just a bit “odd”; like the researcher from Liverpool University and characters in many recent TV programs.  We have the not-so-clever US psychiatrists behind DSM5 to thank for the loss of Asperger’s, as a much more precise and useful observational diagnosis.  

There actually is the tag #ActuallyAutistic on Twitter, which, for our literary readers, must be an oxymoron.  How can a genuinely autistic person possibly use Twitter? Much better to use #ActuallyalittlebitAutistic, or better #ActuallyAspie.  The defining end of the ASD spectrum is "Autistic Disorder" and they do not tweet.

The people using the #ActuallyAutistic tag often do have many issues, like being bullied, eating disorders, anxiety, loneliness, gender dysphoria/confusion and even suicide. Very likely many of these issues are treatable.