This week I’d like to talk about a condition that impacts approximately half of autists- Irlen syndrome.
So what exactly is Irlen syndrome?
First defined in the 1980’s, Irlen syndrome (also known as scotopic sensitivity syndrome (SSS) or Meares–Irlen syndrome) is described as a difficulty in the brain’s ability to process images/visual information. It is not exclusive to autists as it also impacts roughly 15% of the neurotypical population. As 70% of the information we process is visual, the inability to process this information can have a serious knock on effect on our brains ability to function effectively, causing issues with reading, coordination, sensory processing, spatial awareness, and ADHD– all co-morbid issues associated with autism.
But what causes it?
Irlen syndrome is caused by hypersensitivity to certain wave lengths of light which can cause the brain to process visual information incorrectly. The exact mechanism is poorly understood, but the brain seemingly becomes overactive in response to light causing dysfunction. Interestingly, Irlen syndrome is classified as a pseudo-medical diagnosis as there is skepticism over it’s existence as a stand alone condition with a distinct pathology. Experts are skeptical of Irlen syndrome as there is a lot of overlap in symptoms from other conditions and they may be lumped in under one convenient heading.
But is there anything we can do to manage symptoms?
The Irlen method is the main treatment approach for the condition. Pioneered by Helen Irlen, the Irlen method is a non-invasive approach using coloured lenses to filter light and to improve the brains ability to process visual information. The lenses can be either worn as glasses or in contact form.
You can see the impact that Irlen lenses have on the brain here:
However, the efficacy of this method has been difficult to prove. In particular there seems to be little evidence to support their use to improve reading issues and dyslexia. That being said, many people have found great relief from using Irlen lenses, such as actor Paddy Considine who has both Asperger’s syndrome and Irlen syndrome.
As with all pseudoscience/pseudomedicine, take everything with a pinch of salt, but if you think Irlen lenses may help your issues with light sensitivity it’s worth a try!
Leading on from previous post about dyslexia, this week I’d like to discuss the phenomenon of hyperlexia and autism.
So first things first, what is hyperlexia?
Hyperlexia is a phenomenon where a child begins to read at a surprisingly early age beyond their expected ability compared with their peers. Onset is usually before 5 years of age, and the child tends to develop the skill without any training or prompting. It’s often described as a “splinter skill”- unique, but not very useful. It’s estimated that approximately 84% of those diagnosed with hyperlexia are on the autistic spectrum equating to between 6-14% of the overall autistic community.
There are 3 different types of hyperlexia:
Hyperlexia I– occurs in the neurotypical population where children learn to read at a very early age. This is usually considered temporary as their peers will eventually learn to read and catch up to hyperlexic children
Hyperlexia II– this is the form of hyperlexia that is most associated with autists. Beginning in infancy, hyperlexic autists are often obsessed with letters and numbers, tending to show a preference for books instead of other toys. Autistic hyperlexics also tend to have excellent recall for important numbers like phone numbers, dates and licence plates
Hyperlexia III– is quite similar to hyperlexia II, but the symptoms tend to decrease with time and disappear. Type III hyperlexics may have delays in verbal language and development like autists, but they tend to have remarkable skills for reading comprehension and excellent memory recall. However, unlike autists, these children generally have no issues with social interaction and anxiety
In my own experience, I’d say I probably had some mild hyperlexic tendencies as a child. I loved books- my mother couldn’t buy me enough to keep me entertained! As I’m sure I’ve told you in previous posts, my reading skills were so advanced at 6 years old in senior infants, my teacher from the previous year invited me to come and read to her junior infant class (4/5 year olds)!😂 I’ve always had an excellent memory and am pretty good at remembering dates, but as the experts say this skill isn’t the most exciting or useful- no point in donning a cape and calling myself a superhero 😛
This week I’d like to take a look at autism in the popular BBC mystery/crime drama series ‘Sherlock‘ starring Benedict Cumberbatch and Martin Freeman (I know, I’m a bit late to the party on this show, but I only recently binged it during the pandemic 😛 ).
So what’s Sherlock about?
The premise of Sherlock is fairly self explanatory- it’s a series based on the infamous Sherlock Holmes stories by Sir Arthur Conan Doyle set in modern day London. Holmes, a consulting detective, works closely with his friend Dr. Watson to solve mysteries and crimes across London by using Sherlock’s keen powers of observation and deduction in tandem with modern sleuthing technologies, giving Holmes’s story a contemporary edge.
Here’s a trailer of the series for those of you who have never seen it:
So how does autism tie into all of this?
There has been much debate as to whether or not the character of Sherlock has Asperger’s Syndrome. Many experts have theorized that he original character of Sherlock Holmes in the 19th century stories may have been displaying signs of autism decades before the condition was first characterized. Sherlock indeed displays many traits of Asperger’s- his powers of observation, his intellect and memory, obsession with his work, issues with sleep and drug addiction, mind blindness to social cues, his struggles with empathy, and moments of perceived sociopathy (some autists have been misdiagnosed as sociopaths) all tend to paint the picture of an autist. Moreover, the chief of police and Dr. Watson have even theorized that Sherlock may have Asperger’s.
You can find a video of some of Sherlock’s best bits in the show at the link below:
However, this depiction has not been without it’s critiques. It has been argued that this depiction of Sherlock as a superhuman intellect with sociopathic tendencies is damaging for the autistic community as this is a negative, somewhat romanticized and simplistic portrayal of the condition that can mislead the public in their perceptions of the condition (although let’s face it- 90% of autistic characters recycle the same traits and rarely give us an insight into the variety and complexity of the neurodivergent population 😛 ). The autistic community on the whole however, has mainly been supportive in claiming Sherlock as one of our own as many relate to Sherlock and feel seen in Cumberbatch’s portrayal.
This week I’d like to take a look at another neurological condition that can be co-morbid with autism- dyslexia.
First things first, what is dyslexia?
Dyslexia can be described as a specific type of learning disability that impacts a persons reading, writing and spelling abilities. Impacting approximately 10% of the population, dyslexia ranges from mild to severe characterized by cognitive difficulties with processing phonetics, working memory and speed of long term memory retrieval. Like autism, the exact neurological causes and mechanisms are unclear, but as dyslexia can run in families, genetic factors are largely thought to contribute.
So how is it linked to autism?
The link between autism and dyslexia has not been scientifically established, but there are some commonalities. Interestingly, dyslexia overlaps with many autistic co-morbidities such as ADHD, dysgraphia, dyspraxia (an estimated 52-53% of dyslexics are also dyspraxic), and auditory processing disorders, which would suggest that these conditions likely operate through similar neurological mechanisms and pathways.
Scientists have found it difficult to establish a direct genetic link between the two conditions, however, recent research may implicate gene deletions in CNTNAP5 (a gene involved in connecting neurons) and DOCK4 (a gene that regulates junctions between cells) in both dyslexia and autism. In addition to this, a 2015 study found that declarative memory (the type of memory that can be “declared” like names, facts, figures etc.) can be used to develop coping mechanisms for both autism and dyslexia, suggesting that perhaps there may be overlap in the brain regions associated with this type of memory formation. Other studies exploring the neural mechanisms of dyslexia indicate structural changes in such regions as the frontal lobe (memory and problem solving), cerebellum (the motor centre) and corpus callosum (the bundle of nerves that splits and connects the left and right hemispheres of the brain)- all areas that have also shown structural changes in studies of the autistic brain.
Most recently, a 2021 study exploring the co-occurrence of dyslexia and other neurodevelopmental disorders reported that many dyslexic patients in their dataset also had issues with sensory processing and other ASD traits, but concluded that the links between the two conditions are complex and hard to underpin, especially given that some autists are hyperlexic (guilty!) rather than dyslexic.
Whilst there is no definitive scientific link, the overlap cannot be denied.
Following the recent release of Netflix sensation ‘Stranger Things‘ Season 4 Vol., this week I’d like to discuss a possible autistic character that many fans have been discussing online since the season dropped (don’t worry- I’ll keep this spoiler free!).
So before I get into discussing this character, what’s Stranger Things about?
For those of you who may not have heard of Netflix’s all time most streamed TV show, Stranger Things is an 80’s nostalgia sci-fi/horror/drama series set in the fictional town of Hawkins Indiana. Secret government cold war experiments exploring psychokinesis have ripped a portal to an alternate dimension filled with monsters called the ‘Upside Down’, leading to a series of mysterious events in Hawkins which a young group of pre-teens set out to investigate after their friend Will disappears.
Now back to autism.
In the most recent series, one of the new characters introduced in the last season, now appears to be showing a lot of neurodivergent traits- Robin Buckley, played by Maya Hawke (daughter of Hollywood legends Uma Thurman and Ethan Hawke).
Robin is a highly intelligent high school student that befriends the main Stranger Things gang in season 3 when Russian scientists build a portal to the Upside Down in a secret lab beneath the mall that she works at. Described as “an alternative girl” when her casting was first announced, Robin has certainly captured the attention of autistic viewers as her character has developed in season 4. Throughout the season, Robin has been very quirky, exhibiting no filter and rambling constantly about random topics, but can also be quite easily distracted, suggesting that like many autists she has ADHD.
She mentions that she has no grasp of social cues and has awful coordination, claiming that she took 6 months longer to walk than the other babies which she says was not normal. Robin also claims to be a terrible liar and regularly addresses her weirdness and tendency to inadvertently come across as mean or condescending, constantly asking her friends if she is being annoying.
During one particularly memorable scene, Robin, a notorious tomboy, is dressed up in tight frilly clothing which she constantly complains about, arguing that the borrowed outfit is itchy, the bra is pinching her, and the blouse is strangling her, which could suggest that sensory sensitivities could be driving her penchant for baggy clothing.
Most autistic fans did not notice much in the line of neurodiversity in season 3, but other keen eyed viewers have noted traits prior to season 4 citing her ability to hyperfocus, her memory, her ability to connect dots the others can’t, her blunt truth bombs and that she is a member of the LGBTQ+ community (which a large proportion of autists are). Robin also remarked in season 3 “I feel like my whole life has been one big error“, a sentiment that many an autist can relate to. It could be argued that perhaps now that Robin is part of the gang, she is far more relaxed and doesn’t feel the need to mask as much as she did in season 3.
Whilst it is highly unlikely that Robin will have an autism story-line given how poorly understood autism was in women during the 1980’s, nevertheless it’s always nice for autistic fans to feel seen when watching our favourite shows. It will be interesting to see how her character develops in season 4 vol 2 and beyond!
Leading on from my previous post about autism and anxiety, this week I’d like to talk about the phenomenon of brain zaps which autists may experience.
So what exactly are brain zaps?
Brain zaps (also know as brain shakes/shocks/shivers/flips) are a poorly understood phenomenon where it feels as though the brain is undergoing an electrical shock or a shaking/shivering/vibrating sensation. I personally have experienced these from time to time as a vibrating sensation in my brain, where it feels like your brain is literally shaking in your skull. Others report that it feels like a zap has gone off in their head and they can hear a hissing or a ringing sound in their ears. In some cases people experience bursts of light and can feel faint and disorientated afterwards. They are not harmful to the brain but they can be distracting and uncomfortable, especially for autists who are already sensitive to sensory stimuli.
So what causes them?
Like many neurological sensations, they are somewhat of a mystery, but they generally tend to occur in response to withdrawal or missed doses of certain drugs such as anti-depressants, ecstasy and MDMA, and medications for anxiety and ADHD – many of which are prescribed for co-morbid mental health conditions in autists. As these drugs alter levels of key calming inhibitory neurotransmitters such as serotonin and GABA (levels which are naturally dysregulated in the autistic brain), it is thought that low levels of these neurotransmitters may cause over-excitement in the brain, leading to abnormal firing between the neurons causing localized minor seizures i.e. brain zaps.
Don’t be alarmed by the term seizure here- this theory has not yet been confirmed and there is no evidence that brain zaps have a negative impact on our health.
On the other hand, brain zaps can also occur in response to high stress and anxiety. When you experience chronic stress, the brain is hyperstimulated as your worries swirl round and around in your restless mind. Completely overworked and overexcited from stress, your neurotransmitter levels fluctuate causing lower levels of calming GABA and higher levels of glutamate- the primary excitatory neurotransmitter. Such changes may over-excite the brain resulting in a localised seizure/brain zap as described above. Autists may be particularly susceptible to brain zaps in this manner as we experience higher levels of biological stress than our neurotypical peers, not to mention that our neurons are naturally hyper-connected, our neurotransmitters dysregulated and our brains hyperstimulated as a result.
Interestingly, a recent study has suggested that lateral eye movement may be a triggering factor for brain zaps. This is particularly intriguing for autists as evidence suggests that we process most visual information in our periphery, so our natural inclination to avoid direct eye contact could trigger brain zaps.
There are no treatments for brain zaps, but while they may not be the most pleasant sensation, they are generally nothing to be worried about and can be mitigated with proper management of stress and your prescribed medications.
This week I’d like to talk about another autistic female character in the book ‘Convenience Store Woman‘ by Japanese author Sayaka Murata.
So what’s the book about?
The book tells the story of convenience store (or konbini) worker Keiko Furukura, a 36 year old woman who has worked part time in her local store for the last 18 years. She is content with her life in the store, happily set in routine as a functional cog in the “machine of society”. But as content as Keiko may be, the world is not content with her life. Keiko is considered somewhat of an anomaly in Japanese society, as convenience store jobs are considered stop gaps for students, job seekers, housewives etc. As she approaches her late thirties, her family and friends become increasingly invasive in their questioning of her lifestyle- why has she never moved on from the store? Why hasn’t she married? Why won’t she try to be like everyone else? Everyone wants to “fix” Keiko so that she will become a “normal”, functioning member of society. Things become so bad that Keiko goes so far as to adopt an obnoxious former employee at the store as a room mate/ “pet” to get the world off of her back and to let them assume that she is in a relationship and finally acting “normal”.
So is Keiko autistic?
While autism is never mentioned in the book, many autistic women have felt a real connection with Keiko and her struggles. Keiko is socially awkward, and a constant worry to her family. She regularly says and does the wrong thing- like hitting a boy over the head with a shovel in school to break up a fight, or asking to eat a dead budgie in the park, struggling completely to understand why these things were unacceptable.
The book I felt contains one of the best descriptions of autistic masking that I have come across. When Keiko first joined the convenience store, it was like she finally felt like a real person, as the detailed employee trainee videos trained her on how to act in the store, how to speak, to smile, phrases to use- she remarked that it was the first time that anyone had ever shown her what normal speech and facial expressions looked like. She took to the organized monotony of store life like a duck to water, finally feeling like she had a purpose. Based on her experiences in the store, Keiko learned to mask the behaviours of others around her, studying them, taking on their facial expressions, turns of phrases, speech patterns, even looking up their clothes and buying them online so that she could pass for what she felt the world considered “normal.” Reading this I saw myself reflected in her actions- how often I mimic my friends speech patterns and phrases, discerned standard responses to common questions, to picking up their bad behaviours (I deliberately developed a bad habit of chewing pens when I started secondary school as I had gotten it into my head from watching those around me that I needed to exhibit a habit like this to fit in and be “normal”!)
The book is a nice short read (160 pages in the English translation) and whether intentional or not, paints a quirky portrait of an autistic woman at odds with the world, which so many of us can relate to, and I highly recommend it’s portrayal of masking 🙂
This week I’d like to talk to you about one of my specialist interests- the Eurovision Song Contest, as this year one of the entrants is on the autistic spectrum! 😀
So, first things first, what exactly is the Eurovision Song Contest?
The Eurovision Song Contest (ESC) is an annual international songwriting contest organized by the European Broadcasting Union (EBU) that was first established in 1956 as a means of bringing divided European nations together through music in the wake of World War II. Originally, only 7 countries participated, but over the years musicians representing 52 countries have competed across Europe, Israel and Australia (don’t get me started on the logic for that one…)
Each participating country submits one original song under 3 minutes in length, and performs the song live on stage to the world, competing to win a trophy and the chance for their nation to host the contest the following year. There are two semi finals and one grand final, all held over one week, usually in May. The voting is a 50/50 split from audience televotes and panels of industry experts from each participating country.
For those of you who are unfamiliar, Eurovision is very popular in Europe with an average annual audience of just under 200 million viewers. Over the years it has grown from a simple song contest to a huge spectacle with elaborate staging and often crazy performances from bread baking Russian grannies, to metal monsters, dancing drag queens, to flapping puppets (sorry again for that one Europe!), to powerful songs that unite us and capture the hearts of an entire continent.
We get it, you love Eurovision Aoife, so where’s the autism link?
This year, the Australian delegation (we’ll let the geographical issues slide for a few paragraphs) are sending autistic singer Sheldon Riley to the contest in Turin, Italy with his song ‘Not The Same‘ where he talks about his struggles in life, and particularly his struggles growing up with Asperger’s Syndrome. You can check out the song here:
Diagnosed at 6 years old, Sheldon was told that he would never be “normal”, that he would never achieve his dreams, never have a job, friends or a romantic partner. Instead, he has defied the odds and went on to compete in several song competitions in Australia in addition to America’s Got Talent. As part of his stage persona, Sheldon incorporates elaborate crystal masks into his performances to hide his face to allow him to focus on his singing as he often feels judged for his appearance, a shield to allow him to perform, taking autistic masking to a new level. With his participation in Eurovision however, Sheldon finally feels confident to start ditching his mask to embrace who he really is. You can also hear Sheldon talking about his experiences of autism to BBC in the video below:
Sheldon isn’t however the first autist to take to the Eurovision stage. In 2015, Finland sent the rock band Pertti Kurikan Nimipäivät comprised of disabled musicians with Down Syndrome and Autism. To this day it holds the record for the shortest ever song performed at Eurovision:
On another level, Greta Thunberg’s mother, Malena Ernman, who is an outspoken advocate for autism awareness, represented her native Sweden in the Eurovision in 2009!
Whilst these are the only confirmed examples of autists competing in the Eurovision, it’s quite possible that other past artists may also have been on the spectrum (knowingly or otherwise) but they have not revealed their diagnosis.
Fun Fact– yours truly contributed to last years 4th place Icelandic entry as part of an online virtual choir of 1000 fans, so you could say that one other autist has appeared on the Eurovision stage (in a roundabout way 😛 )
Hope you enjoyed this post dear Earthlings! 🙂
Have a lovely weekend and enjoy the competition tomorrow night if you’re watching!
This week I’d like to have a discussion about a somewhat polarizing topic- the internet and autism.
The internet is without a doubt one of the most powerful tools in the world- it connects us, shops for us, provides us with data instantly and is a vital tool in both school and the workplace. But as with most tools, it has many sharp and dangerous edges. As such, we need to be quite cognizant of both sides of the coin for vulnerable autists.
The internet often feels like a Godsend to an autist- it educates us about our condition, keeps those of us with ADHD stimulated (so many hours of online content to shut my brain up! 😛 ) and it removes the physical barriers of socializing, allowing us to make friends in a seemingly less threatening environment. Online support groups, vlogs and blogs can be immensely beneficial for autists, giving information, advice and a sense of community, knowing there are people out there dealing with the same struggles as you.
It can also really help mitigate some of the anxiety associated with in person or phone interactions. I’ve always hated shopping, so the rise in online retail during the pandemic has been very convenient for me, allowing me to offset some of the awkwardness and anxiety I would normally feel when dealing with retail workers (not to mention it’s keeping my habit of dropping/knocking things over in shops from poor coordination at bay! 😛 ). Even little things like being able to book appointments and restaurants over the internet can have a huge impact for an autist- the smallest of things can make our lives so much less stressful.
Perhaps one of the biggest benefits of the internet to emerge from the pandemic for autists is how it enables us to work remotely. With just a couple of clicks, we can work away as if we were in a physical office, safe in the comfort of our home, free from many of the stresses of workplace life.
But as useful as the internet is, it can also be a very dangerous place for autists.
The internet provides us with a vast network of information, but a large percentage of it goes un-monitored which could be dangerous in the hands of vulnerable autists. We can be quite innocent and trusting, our struggles with social cues often making it difficult to discern what is truly ingenuous. The internet is filled with harmful pages about “curing” autism which a desperate and struggling autist could take at face value. The threat of cyber bullying is a serious issue for today’s youth (I was blessed this was only taking off as I was leaving school), but autists are especially vulnerable given our social struggles. An even bigger danger may arise from these struggles as online predators may target autists, many of whom may be innocently oblivious to their potential danger.
Furthermore, there are an increasing number of studies which have identified a trend of internet addiction among autists, as we can often be vulnerable to addictive behaviours. Researchers feel that the internet allows us to compensate for our social difficulties in the offline world through online activity. The list of perceived advantages of the internet is endless to an autist, and so it can very quickly become a crutch.
Whilst we can put up filters and blocks to mitigate some of these risks, there is a real need to properly educate growing autists about the internet and the potential threats that are out there. Not just from others, but autists also need to be educated about the danger they pose to themselves with what they post on the internet. With our mimetic and impulsive nature, internet behaviours can often be monkey see-monkey do, and so we may post inappropriate content without properly realizing the potential consequences.
It’s easy to demonize it, but we cannot deny that the internet truly has provided a platform to increase visibility for the autistic community in recent years. It’s given so many of us a voice that we never knew we could have. The internet is on the whole primarily a good thing for autists, but we should always be wary of the dangers and advocate for proper education around internet usage.
This week I’d like to discuss my previous experiences with silent discos during my college days and how this phenomenon can benefit autists.
So what exactly is a silent disco?
A silent disco is pretty much what it sounds like- it’s a disco where no music is played through the speakers, but everyone is however provided with a set of wireless headphones to listen and dance to music. Each set of headphones has it’s own volume controls and allows you to pick from up to 3 different channels from different DJs to choose which music genre you would like to listen to- so while everyone else might be raving to EDM, you can rock out in peace. The idea originated in the UK in the early 2000’s and has since taken the world by storm, proving particularly popular with students and leading to more inclusive club nights.
So how can silent discos benefit autists?
One of the major drawbacks of the club scene for autists is the obscenely loud music blaring from the speakers. Sound sensitivity can be a serious issue for autists and will often deter us from dipping our toes into the night time social scene. Silent discos remove this barrier as there are no speakers, you can control the volume of the music (even turn if off if you wish to dance with no music- no one else will know!), control the channel, and if you want to chat to your friends you can simply slip them off and talk at a normal decibel without the need for shouting (bonus- no morning after voice loss!). Silent discos were highlighted in particular in the first season of Atypical to allow Sam to attend a school dance with his classmates in comfort. Light sensitivity from strobe lights can still be an issue, but I’ve always found that sunglasses in clubs can be quite beneficial (some may think you’re a bit odd, but most will think it’s awesome!).
I tried out silent discos in Dublin while I was studying for my masters several years back and found the experience quite refreshing. Over the years I have conditioned myself to the cacophony of club nights (I’ve always had more issues with sudden volume increases rather than general high volume levels- I am quite partial to rock concerts!), but being able to attend a silent disco where I could slip my headphones down and have an actual conversation with my friends between dances was a dream! I was in total control of my headphones and we could all dance together just like any other club night with our eardrums still intact!
Silent discos are a great way for autists to get out and experience college nightlife with a fraction of the stress, so I would highly recommend them for young adult autists trying to settle into the college social scene. Many colleges run silent discos so just watch out for an event near you and give it a try! 🙂