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.
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 shake things up a bit and talk to you about a unique play about autism called ‘What I (Don’t) Know About Autism‘ based on the best selling book by Jody O’Neill.
So what’s the play about?
The play takes you on a journey through autism with each scene exploring a different aspect of life on the spectrum such as education, interventions and treatments, socializing, getting a diagnosis etc. told through a combination of song, dance and narrative, with built in question times for the audience to ask their own questions from the cast- a mix of both autistic and neurotypical actors. The play is a celebration of autistic identity, whilst also giving non-autistic audiences a deeper insight into the autistic experience.
Here’s a clip of Jody discussing her story and the play:
The play is unique in that it is a “relaxed” performance so to be more autism friendly. This means that the audience lights will remain on, warnings will be given ahead of loud noises (to allow for earplug insertion), audience members are allowed to come and go as they need and if they need to make noise or move around, this is also permitted. The performance is also captioned and the scenes are labelled and crossed out on a white board when they are completed so that the audience can keep track of the 80 minute run time. Here’s a quick video about the relaxed structure:
So what did I make of it?
The play is a unique and entertaining insight into the autistic experience and I thoroughly enjoyed my online viewing. It was so real and relatable without the overt Hollywood dramatics that one often finds when seeing autistic stories played out in a theatrical setting. There were no tricks, just reality to help us all understand autism a little better, and to appreciate and embrace neurodiversity. Myths were debunked, questions were answered and the play did not shy away from some of the difficult realities of autism, giving a well rounded, heartfelt and educational play about the autistic experience.
It’s hard to give any further details without spoiling the show for you, so if you think you might like to see it, you can catch the recording online through the Abbey Theatre website until the 20th of November on demand.
Leading on from my previous post about managing autism while travelling, after a recent mishap with a suitcase in the airport on my way to Italy, this week I’d like to talk about when things go wrong.
Ordinarily, travelling on my own through an airport is no great hassle for me. I’ve done it loads of times before with no issue, however, with all the disruptions to travel since the start of the pandemic, flying has become a little bit more stressful. Due to reduced capacities on public transport, I started out my journey on the wrong foot by driving the 2 hours to Dublin up a very busy motorway on a Friday afternoon- not the most calming of scenarios given some of the issues autists can have driving. Arriving in the terminal after a lengthy search for a free parking space (despite pre-booking), I made my way directly to bag drop off to relieve myself of the ginormous suitcase I was carrying, laden with goodies from home for an overseas relative.
That’s when things started to go awry…
The suitcase wobbled and rolled off of the self service scales as it was recording the weight, so the label the machine printed off displayed an incorrect value. I proceeded to put the bag on the drop off conveyor… buuuttt it wouldn’t take my suitcase! Now as we are in Covid times, there were crowds of people round me travelling, but not a lot of staff to ask for help from at these desks in order to reduce interactions. So I tried to re-weigh and reprint my tag a second time to find that my bag was 0.8 kg over the limit, leading me to frantically kneel down in the middle of the floor, pulling out shoes and baked goods to shove them in my carry on. I was enduring this stress while still wearing my coat and a face mask, so the heat from the situation was rising, not to mention I was still coming down from the stressful drive, was tired, hungry, and in need of the bathroom- so my sanity was hanging on by a thread! Once I had reduced my weight sufficiently, the machine then refused to print another label for my luggage, and tried to charge me €60 for the pleasure! 🙈
Sooo I frantically searched for a an attendant to advise me, who did not have a solution only that I join the massive queue at the ticket desk…aannnnd then the meltdown hit! Thankfully it wasn’t more than a few tears, and once I communicated that I was autistic to the attendant, she was very nice and supportive 🙂
But the saga wasn’t quite over yet! As I proceeded towards the ticket desk for assistance, another attendant saw me and asked where I was going with my suitcase (as the desk was in the opposite direction to the drop off). I communicated my issue and this no-nonsense lady firmly told me to stop crying! Believe me, I wouldn’t be crying in my thirties over something so stupid as an overweight suitcase if I had the choice 😛 She eventually steered me direct to the drop off and fired the suitcase on the conveyor with a final parting order to stop crying. Five minutes later, I was sitting calmly in McDonald’s, my crisis was over and the mortification set in 😳
Granted, this experience was resolved quickly and could have been a lot worse (I’ve had a 24 hour delay on a previous family holiday), but it was still an extremely stressful few minutes!
Based on this mortifying experience, here are some modified tips for dealing with autism while travelling when it’s too late for prevention:
Take a moment to collect yourself– if you feel like a meltdown could be coming on, take a step back. My stress over increased airport traffic with international travel opening up pushed me to keep going, but I should have paused to take off my coat, grab a snack from my bag, and try the suitcase again.
Take a break in a sensory friendly room (if available)– Irish airports have pioneered sensory friendly rooms for travelling autists to enable you to take some chill time to come down from stressful scenarios. If a space like this is available, take some time out.
Approach a member of stafffor help– if you feel that you are struggling and are in a position to communicate your struggles, reach out to a member of airport staff and they should be able to help make your journey a little easier. Dublin Airport, among others, has a special lanyard that you can get to alert staff that you are autistic if you are in need of assistance, so the training is there for staff to help you in your time of need.
Take a break from your face mask– face masks can be quite problematic for a lot of autists, but are a requirement for travel at present. If you’re getting overwhelmed from wearing the mask for too long, go to the bathroom for a few minutes to pull down your mask and take some deep breaths privately. Pro tip– spend as long as you can in the food court as you will not be required to wear your mask in this area.
Bonus tip– If you’re using a self service scale, place your bag on it’s side, not on it’s wheels- learn from my mistakes 😛 😉
Perhaps the best tip I can offer is to make use of autism assistance programs where available. I have not previously used this service as I have not needed it, and also because other airports like Shannon Airport advocate the use of bright orange hats to quickly identify an autist, which as an adult, this concept would make me feel like a bit of a sore thumb 😛 Check out if the airport you are going to has an assistance program for autists that you can avail of so that in the event that something does go wrong, you will be taken care of. Once I was able to communicate that I was autistic, the staff were happy to help, but other autists may not be able to communicate this mid-meltdown, so make sure to check out assistance programs ahead of time to ensure that the help is available to you in the event that things go wrong 🙂
Sorry I’ve been away for so long- you wouldn’t believe how hectic these past few weeks have been!
This week I’d like to ease back in by talking about the topic of autism and space!
No- not that kind of space (we’ll leave that one to the billionaires); personal space!
Personal space is an interesting subject for autists. As we’ve discussed at length, social norms can be difficult to navigate, so our sense of personal space in company can be a little unusual. Some may stand on the sidelines away from the crowd, whereas other autists can be right in your personal bubble, and perhaps even a little too close for comfort. Sometimes you just don’t know how to judge how close is too close! From a meltdown perspective, most autists tend to seek out small, enclosed spaces away from crowds when the flight response is triggered.
For me personally, I do have a tendency to seek out smaller spaces when I’m feeling overwhelmed. I have lingered for many hours in many bathrooms and stalls across Ireland during my lifetime. The comfort of the enclosed and locked space is soothing, kind of like my environment is giving me a socially distanced hug. On the other hand, I’ve equally embraced wide open spaces when my flight response get’s triggered during a meltdown. Sometimes the best thing is to just sit down in the middle of a wide open field to help you can breathe again.
So is there any research behind personal space and autism?
An interesting study from 2015 found that autists have a tendency towards shorter distances in personal space compared with neurotypicals, not just between people, but also a shorter personal space between themselves and objects. In other words, most autists may be inches from your face and will not become uncomfortable! It’s thought that this occurs due to alterations in the regulator of personal space- the amygdala in the brain, a structure that has been implicated in many autistic symptoms.
In addition to this, it’s thought that personal space is related to our propricoceptive system- the neurological feedback system in our muscles responsible for our sense of space and pressure detection. As discussed in previous posts, alterations in this neural system can lead to dysfunction and difficulties in spacial awareness. The interesting thing about this system however, is that many autists stimulate it for relief of sensory issues through stimming and deep pressure. As pressure and space are both detected through this system, it’s thought that autists may seek out enclosed spaces as a means of stimulating it for sensory relief.
So while we might seem a little bit odd hiding under the table, there is method in the madness! 😉
This week I’d like to talk about a topic that’s not discussed very often in conversations about autism- tics and tic syndromes.
So what exactly is a tic?
A tic is a sudden, repetitive muscle movement that can cause unexpected and often uncontrollable body movements or sounds. Affecting approximately 10-25% of autists, tics differ from stimming and other repetitive behaviours in that they are generally involuntary in nature such as abnormal blinking, head jerking, sniffing, throat clearing, or repeating phrases. Like autism, there is a spectrum of tic disorder’s, with Tourette Syndrome being the most common of these. Tic frequency and severity varies depending on activity levels, stress, boredom and even high energy emotions.
Thankfully my own experience of tics has not been severe, however, in times of serious stress I have been known to develop a bad eye twitch in my left eye. It was first brought on by the stress of my final school exams at 18, and has resurfaced a small handful of times since during particularly stressful work periods. Amazingly, no one has noticed this tic as it’s so mild, but it is a very odd sensation on the inside to feel your eyelid fluttering of it’s own accord. I was initially quite freaked out when it first started, but now I know that it just means I need to step back and manage my stress levels 🙂
But why are tics so common for autists?
Although they are often comorbid, as with many aspects of the spectrum, the research into this phenomenon is once again limited. Recent genetic research has shown that there may be an overlap where genes thought to contribute to autism can also cause Tourette syndrome which could explain why they often appear together. At the biochemical level, tics have been linked to imbalances in dopamine and other neurotransmitters, imbalances that have also been linked to autistic behaviours.
So are there any treatment options?
As the frequency and severity can vary with life’s changes, learning what your triggers are and how to manage or avoid them is one of the best approaches. Comprehensive Behavioral Intervention for Tics or CBIT (a form of CBT) is the favoured interventional approach, however, in some severe cases, medications can be used to help control tics.
Continuing on from last week’s post about autism and puberty, this week I’d like to talk about autism and periods. I know, I’m about to alienate about half of my readers (sorry guys!), but this is a very important topic to cover for the often overlooked autistic female demographic.
Periods can be challenging for lot’s of women, however, for autists the experience can be somewhat of an ordeal. There can be a lot of overwhelming sensory issues where periods are concerned- new smells, sensations, and sensory issues related to the use of feminine hygiene products. Autists struggle greatly with change, and periods can be quite unpredictable over the course of our lives due to stress, hormonal changes, childbirth and eventually menopause (which I will discuss in a separate post at a later stage). As a result of this, female autists can develop a number of behavioural issues related to menstruation such as increased aggression and repetitive behaviours, not to mention changes in mood and mental health. Throw in a side of cramps and it’s no picnic!
In addition to the mental and behavioural toll, research has shown that periods are biologically much tougher on the autistic body. Studies have shown that women on the spectrum have higher levels of testosterone than their neurotypical peers (likely caused by dysfunction in the hypothalamus in the brain), leading to a number of menstrual related issues such as severe acne, hirsutism, irregular periods, polycystic ovary syndrome and dysmenorrhea. Premenstrual syndrome (PMS) is also highly prevalent in autistic women. Autists are also known to have high levels of inflammation in the body, which can further aggravate menstrual symptoms. Periods can even cause an increase in seizures in autists who also suffer from epilepsy due to hormonal fluctuations.
So what can you do to help a young autist through her period?
Educate them clearly about their changing bodies– autistic women can be particularly vulnerable, so they need to know exactly how their reproductive system works and the importance of consent. Use clear language that can not be misinterpreted or taken too literally. Understanding their body will also help them to better normalize menstruation so it is far less scary. As discussed in my last post, autistic women enter puberty much earlier than their peers, so it is essential that they are educated sooner rather than later about their changing bodies.
Check out autism friendly books about puberty/periods– there are a number of books available targeted at growing autists to help them navigate this challenging time. There are even books specifically about periods for young autistic women that may help.
Chat about different feminine hygiene options– as no two autists are the same, so no one option is better or worse when it comes to feminine hygiene products. There are far more options available these days to young women than just sanitary towels and tampons- they even make absorbent period underwear which could be very helpful for girls with sensory issues.
Setup a calendar/diary to track periods- the unpredictable nature of life and unexpected change can be particularly frustrating for autists. While periods can oftentimes be unpredictable and don’t always run on time, a calendar can nevertheless be very helpful to prepare an autist for upcoming periods and establish a routine. Knowing that an event is approaching can help to offset the scariness of it.
Break the taboo– reassure them that periods are a normal part of life and that there is nothing to be ashamed of. Periods may be overwhelming for autists, but they are by no means alone in their menstrual struggles.
Hope my female Earthlings at least enjoyed this week’s post! 😉
This week I’d like to talk about a frequently sidelined aspect of life on the spectrum- puberty. So often people focus on childhood autism we forget that autistic children will grow up and go through puberty just like everyone else.
Puberty is a challenging time for everyone, but often even more so for those on the autistic spectrum. Research is limited on pubescent autists, but some studies have suggested that behaviours can worsen in autists during this time, in particular, aggressive behaviours. The smallest of changes to routine can trigger meltdown’s in an autist, so imagine how this response is amplified when your entire body decides to change. You couldn’t pay me to go through puberty again- the raging hormones were a minefield (although there are day’s during this pandemic where I might consider it to travel back to a time when I had freedom 😛 )!
There can be a lot of sensory issues arising from the onset of puberty that can trigger further distress- body odours, sensory reactions to hygiene products, and my own personal hell, the sensory discomfort from wearing a bra. As I’ve discussed in previous posts, I went to war for years with my mother against wearing one as the sensation of it against my skin freaked me out and I was incredibly uncomfortable- but as I was un-diagnosed, this was passed off as just being awkward 😛
During puberty, socialising, an already challenging task for autists, becomes even more complicated. When you’re a child, everything is easier as kids haven’t developed a filter yet, but once those hormones kick in, conversations become more nuanced, boys and girls interact differently and your peers start to become aware of your mind blindness and excentricities. It can be quite a socially lonely time for autists.
So how can we navigate this difficult time in an autist’s life?
Talk openly about the facts of life– Talk them through the changes their body will experience in clear, concrete language. Don’t leave any room for confusion or misinterpretation so that they will be fully prepared and less thrown by the changes to come- there were certainly a few books that I read growing up where overly simplified language such as “a special hug” was used to describe sex that would only confuse and misinform the more literal autist
An important thing to know about puberty and autism is that it can have a much earlier onset in girls. Studies have shown that female autists tend to enter puberty and start menstruation on average 9 and a half months earlier than their peers, so girls need to be prepared and educated about the facts of life earlier than you might expect
Use visual tools– Sometimes words are not enough to create the correct mental picture for an autist. Illustrated books about puberty can be very useful here, and there are now many books specifically targeted at autists which can really help them to navigate this time
Discuss appropriate/inappropriate behaviours– don’t leave it at just the facts themselves. Autists will need to be taught about consent, sexual behaviours and inappropriate conversational topics just like anyone else. As female autists often mask their behaviours, it is especially important that they are taught about these things as they can be quite innocent and may be taken advantage of if not adequately prepared for adulthood
Sensory friendly clothing– For the young women out there, the market is now opening up to produce sensory friendly bras to help combat the issues of traditional brassieres. Bralette’s and lightweight sports bras may also be helpful alternatives
Normalise the experience– Reassure them that everyone goes through this, that it’s a normal part of growing up. Don’t attribute the entire experience to their autism
Be positive– Don’t assume things will be harder for your child as everyone is different. A positive attitude can go a long way to easing your child into the murky depths ahead
As we face into the holiday season, this week I’d like to talk about Christmas and autism.
It’s the most wonderful time of the year, yet as with most aspects of life on the spectrum, it can sometimes be overwhelming for autists. Flashing lights, busy and noisy crowds, interrupted routines and unexpected visitors can really throw an autist, even amidst the high jinks and excitement for Santa.
Here are some tips for an autism friendly Christmas:
Go shopping at off peak times– I know this can be hard to avoid over Christmas with shopping crowds (although perhaps this year human traffic will be lighter), but try to get out for Christmas shopping midweek or early in the morning to avoid getting overwhelmed by the crowds.
Wear sunglasses if Christmas lights are too bright– Ah the old reliable. I know I advise this as a solution to most light related sensory issues, but I do swear by my sunglasses! I rarely leave my house without them- I’ve even been known to wear them in clubs! Thankfully Christmas lights have never been an issue for me, but if you don’t want to miss out on any light displays, or official turning on of the lights ceremonies, just slip a pair on to take the edge off 🙂
Use a stocking/sack instead of gift wrapping presents– This can help reduce sensory overload from all the bright colours, noisy paper and textural sensitivities. I always had a Santa sack growing up and it was great fun to dig around in it and focus on one present at a time as I pulled them out 🙂
Autism friendly Santa Experiences- If your child tends to get overwhelmed with the crowds at Santa’s grotto, many places offer autism friendly experiences where the lights are turned down, there’s less noise, and the numbers are limited for a more calming experience. Granted, these may be harder to come across than normal this year, but something to look forward to in the future 🙂 There are also a lot of autism friendly pantomimes and shows to watch out for.
Decorate the house gradually rather than all at once– The sudden change in decor might be overwhelming for an autist, so putting up the decorations bit by bit will allow them to get used to the change gradually. Equally, the decorations could also be removed slowly to avoid similar incidences.
Use a static light setting on the Christmas tree/outdoor lights- If flashing lights are a problem, try buying a static set or set the flash pattern to static. If colour sensitivities are a problem, try to stick with plain white bulbs, or if yellow is a trigger colour (as is the case with many male autists), calming blue might be a nice alternative.
Pre-arrange Christmas visits if possible– To reduce the stress of unexpected visitors, try to plan out times/days when your family or friends might visit. This way there is time to get used to the idea and your child will not be thrown by a sudden arrival/routine disruption.
Maintain routines where possible– To avoid added stress, try to stick to regular bedtimes, bath times and mealtimes.
Be cautious of holiday scents- Be careful if trying out Christmas scented candles, air fresheners or when buying a real Christmas tree in case these scents are a sensory trigger. A couple of Christmas’s ago, one seasonal Yankee candle made me throw up when I smelled it, so beware (it could also have been a side effect from the strong antibiotics I was on at the time, but I’ve avoided it ever since to be sure😂)!
Ho-ho-ho-pe you enjoyed this post dear Earthlings! 🙂
This week I’d like to talk about the representation of autism in the 1990 drama film ‘Backstreet Dreams‘ starring a young Brookie Shields and Jason O’Malley.
So what’s the film about?
The story follows a young hoodlum named Dean as he navigates fatherhood. Things become complicated when Dean’s son Shane get’s diagnosed with autism, causing his marriage to fall apart, and making Dean a single father. With the help of Shane’s therapist Stevie, Dean forms a connection with his son, finding the strength to leave his backstreet activities behind him.
You can check out a trailer for the film here:
So how did this film fare in it’s portrayal of autism?
Filmed in 1990, this was one of the earlier film portrayals of autism, and as such is very stereotyped in the autistic traits discussed. There’s a lot of mono-tonal speech, lack of eye contact, repetitive behaviours and stimming so nothing really out of the ordinary in this film. That being said, for a child actor in a role this young, it’s tricky to accurately depict the realities of autism unless the actor is themselves autistic. The story also tended to focus more on the impact of autism for Dean rather than Shane, which further distracted from the issue.
On the other hand, it was heartening to see the impact that appropriate interventions and support were having on Shane’s development, something that wasn’t always highlighted in these early films featuring autism. Most early films focus on accepting autism or how burdensome the condition can be, but this film showed a turning point in how it’s not all doom and gloom, and how proper interventions can really improve symptoms and outcomes for autists.
All in all, it was a fairly poor offering both in terms of autism and cinema, but by all means give it a go if you think you might like it!
A Is For Aoife Not Autism 