Friday, 5 June 2020

“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.

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.

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. 


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.


  1. Dear Peter,

    My Daughter reads for pleasure now, at eight years old and often uses the phrases, she learns from her books to express herself verbally. She never ceases to amaze me how, she uses her executive function to compensate and adapt her communication. Sentences rather than individual words, make more sense to her because they contain both a verb and a noun. Mo Willem’s books, initially really helped her receptive understanding, they made her giggle and they have taught her about friendship.

    Now, after changing professions and retraining as a Speech Pathologist, I recognise why sounding out words can be difficult and frustrating for children with ASD. By chance I found my Daughter quickly became proficient, learning 1000 sight words, using a free visual sight word rap on YouTube.

    My Daughter has a DSM of 3 but because she can read and write, she can keep up in a mainstream class. The more educated My Daughter becomes, the more verbal language she uses and the more she receptively understands. just like her mainstream peers.

  2. We hit some kind of literacy just before age 5. Given my daughter has ID, autistic tendencies and is totally non-verbal it's quite fascinating (or rather shocking). It is impossible to tell how much understanding there is, but she enjoys books and sometimes signs the words.

    Reading to me is learning language visually instead of auditory. You can always read a sentence over and over again in your own pace until you understand it, which is not the case with sentences being said in a conversation.


  3. Hi Peter,
    I came across this today when I was searching for drug interactions of my current medications/polypill. I thought you might find this interesting. I still have not personally tried NAC but I have been meaning too. I'm very curious if Verapmil And Cimetidine would add more protection in combination with NAC as well. I've been reading some of your posts from years before I started reading trying to understand more.

    Also, I have been doing much much better on verapmil immediate release instead of extended release.

    "Paracetamol, chemically known as acetaminophen, if taken in higher doses has hepatotoxic potential. Cimetidine by inhibiting the cytochromal enzymes and reducing the production of the toxic metabolite can reduce the hepatotoxic potential while Verapamil can act as a hepatoprotective by maintaining calcium homeostasis. The present study was conducted to study the hepatoprotective activity of Cimetidine and Verapamil against the toxicity induced by paracetamol. In addition to the group receiving only distilled water or 300 mg/kg paracetamol additional groups were added treated with 150 mg/kg Cimetidine and Verapamil alone or both. The Liver function tests and histopathology revealed hepatotoxicity in the group receiving paracetamol (PCM) while normal parameters were observed in the groups receiving Cimetidine and Verapamil. Our results strongly suggested that Cimetidine and Verapamil possess hepatoprotective potential against paracetamol induced hepatotoxicity."

  4. I've so been trying to read about how to have less involuntary eye movements. From what I have read so far I think switching my amantadine to memantine would help. I also still haven't tried bumetanide prescription because I don't know who to ask for it or where to buy it.

    In theory would klor-con m20, or, potassium cl 20meq, added onto a bumetanide regimen be helpful or hurtful?

    Thanks, -Martin

    1. Martin, people taking Bumetanide need to add back potassium using diet and/or a supplement. In some people one extra banana a day and 200mg of potassium is enough for 1mg of bumetanide. It does not seem to matter what type of potassium is used for the supplement. Some of the supplements cause GI irritation if not taken with a full glass of water.

      Checking potassium in a blood sample is the only way to know for sure whether you need more/less potassium.

  5. my daughter learnt reading with Aba sessions and lots of efforts...she has now more trouble with math, can count but not add and subtract for the moment....there are lots of methods for teaching math and i am lookimg for the most effective for her...but , to say the truth, i am more worried about executive dysfunction than about academical skills....i am worried about adulthood, inability to live independently and to hold a skills almost zero....

    1. Basic maths skills are a good indicator of cognition. In our case, without improving cognition (with bumetanide), no amount of 1:1 tuition could teach even basic addition/subtraction. Now, at 16, he is solving simultaneous equations and has the maths level of a 14 year old.

      The same is true for reading, the ability to read is not the same as the ability to comprehend. The next problem is how to express what you have understood.

  6. Every day my son surprises us more, he seems to understand more things, now he responds questions with a yes or no and he asks more elaborate questions, he still has many issues but I'm really happy with the progress that he has made. Yesterday we were watching
    the short story of Pinocchio in youtube, it had animated characters and was read by a storyteller and in the part where Geppetto finds Pinocchio inside the whale, his eyes filled with tears, I think he can understand more that he can say, he also seems more interested in what a book says, he grabs my hand and puts my finger in the words and waits for me to read. At first he was interested only in single words. I really do think it's bumetanide that has helped him. He was diagnosed first with Autism type 1-2 and then another doctor told me he had Asperger, but he started to get worse every day, especially his stimming, stereotypy and echolalia. I always thought that Asperger's was diagnosed at a later age and that it was different to Autism, but here in Mexico I was told Autism level 1 is equivalent to Asperger which was confusing, because he also has language impairment.

    1. Lisa, the terminology used to describe autism keeps being changed and is not helpful.

      A good way to approach this is to use a standardized scale like CARS (childhood autism rating scale), like they use in clinical trials, and some good doctors also use it. Total scores can range from a low of 15 to a high of 60; scores below 30 indicate that the individual is in the non-autistic range, scores between 30 and 36.5 indicate mild to moderate autism, and scores from 37 to 60 indicate severe autism autism.

      Asperger's only appeared in DSM version 4 (in 1980). In the current DSM (version 5) it is not present. Asperger's was diagnosed at a much later age and refers to people with social difficulties, who have no language delay or intellectual disability.

      The current DSM divides people into just 3 levels, but the spectrum is now far too wide for just 3 levels, and tells you nothing about where the person has difficulties.

    2. Thank you for your response Peter, I searched and the manual is in Scribd for the Cars2, I would have to buy the test. I only found doctors that use it in Mexico City. I have the feeling that he is Autistic and not Asperger's, since he was about 1 year old I started to see symptoms and they were progressing. I admit I preferred to say that his diagnosis was Asperger's even though it didn't feel right because I was afraid of the reaction of people, he always started to yell when we were going to the store and a neighbour stopped me to ask me something or say hi, and one time a neighbour got really mad and shushed him, I was really upset. And then a woman in the street tried to correct him when he was having a fit, and before she said a word I said to her, ''he's autistic'' and the lady went away like if she'd seen a ghost, it seemed funny, but made me think of others reactions, and how would neighbours treat him after they knew about his autism or what would they say to him when he is older. I did tell some neighbours, when I bumped into them and I told them he had Asperger's. When he was diagnosed with autism, I changed his diet, and started to motivate him more to talk, and he did learn more words although he couldn't use them, but his stimming increased, his echolalia, and stereotypy, he didn't say mommy or respond to his name at 3 and even so he was diagnosed with Asperger months later, well it was a free consultation, and now that I think of it, maybe I was told what I wanted to hear, that things weren't that bad, that he wasn't going to get worse, the doctor even told me that he would grow out of it and wouldn't need treatment after 18. After some days I bumped into your blog, really desperate and unable to sleep just thinking what can I do, seeing him getting worse.

    3. Lisa, you could contact the child psychiatry department of a large university hospital in Mexico City and offer to participate in research that would include a Cars2 assessment. That way you would get a free test and maybe meet some useful people.

    4. Thank you for the info Peter, I will do it. Have a nice day.

  7. For everyone trying to teach addition and substraction, I would recommend the Hape Monster Math Scale, Mita app and dragonbox algebra. For reading (English language) the Endless reader is absolutely amazing. Also, if at all possible, I would just make english the first language of the child because all the best teaching material is in english and it is easier to learn and operate than most languages. My child is voluntarily bilingual (actually talented for languages underneath the massive expressive/receptive language impairment) and I rue the day I listened to the speech therapists who warned me to not expose her to english. It would have made life a lot easier on many levels.

    1. People in English-speaking countries do not appreciate how lucky they are, there are so many resources just a click away. In some other countries they are 30 years behind and basic things like augmentative communication are either not available or very expensive.

  8. Peter, I haven't found any note or comment about Tranilast on your blog. At a quick glance it looks interesting, I think they are looking at it in ALS.


    1. Ling, Tranilast is an interesting old drug that has multiple modes of action, not 100% fully understood.

      Here is a good summary of what is known about its multiple modes of action.

      There clearly is an overlap in the dysfunctions found in some autism and the effects of this drug.

      For some people with autism, it looks like Tranilast should be beneficial.

    2. Thank you, it is an impressing long list of conditions where it seems beneficial. Too bad there aren't that many neurological ones on it (yet).
      Further, it is promising to read that "tranilast use in both children and adults has no serious side effects." (though I would read that part in more detail before heading for a try)

      I see that the reason they look at tranilast in ALS is because it can activate the nonsense-mediated decay (NMD) pathway.

      "The NMD pathway is a surveillance system in our cells that degrades selected RNA molecules, to prevent the accumulation of defective proteins."



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