This week I’d like to discuss a book I recently read while on holidays- ‘Freckles‘ by Cecelia Ahern.
So what exactly is ‘Freckles‘ about?
‘Freckles‘ tells the story of Allegra, a young traffic warden in Dublin city, nicknamed ‘Freckles’ due to the abundance of freckles on her body. One day, Allegra get’s into an altercation with the owner of a Lamborghini who tells her that she is the average of the five people that she spends most of her time with. This sends her into a spiral questioning the people in her life and how they have moulded her, sending her on a journey of friendship and self discovery.
You can catch a clip of Cecelia talking about the book here:
So how does ‘Freckles‘ relate to autism?
After reading ‘Freckles‘ (and being unable to put it down), I really feel that both Allegra and her father strongly come across as being on the autistic spectrum. I truly felt for the first time ever that I was reading about someone just like me, like I’d never identified with a literary character so much in my life (with the exception of Hermione Granger). Allegra is very rule and routine orientated. She loves being a traffic warden- the rules are all black and white and she has her set walking circuits and routines. If even one thing is different or she is a few minutes late, she becomes completely disorientated and her whole day get’s thrown off kilter. She remarks multiple times that she is often misunderstood by people, finding that she says the wrong thing in social scenarios. Allegra also stims and has shown some self injurious tendencies. As a child, she became obsessed with connecting her freckles with pen to trace the constellations, later using sharp implements to carve them which left scars that she would in later life run her hands over to trace the constellations in times of anxiety. Allegra can also be quite impulsive and a little bit of a loner, among a number of other quirks throughout the book.
Autism is never directly mentioned in the book, and it’s not clear either if Cecelia had an autistic perspective in mind when writing, but regardless of that, the book is a great insight into a female character who possesses a number of autistic traits 🙂
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 🙂
Leading on from my previous post about sound sensitivity, this week I’d like to explore the subject of noise reducing earplugs. In recent weeks, I’ve been getting a lot of Facebook ad’s for noise reduction earplugs, so I finally decided to take the plunge and buy a pair to see what all the fuss is about.
So how exactly do these noise reduction earplugs work? Isn’t the whole function of earplugs to reduce noise anyway?
Noise reducing earplugs are different to your garden variety earplug in that they are designed to reduce background noise without compromising audio quality in your immediate surroundings. Most earplugs will muffle sounds, but this next generation of earplugs focus on filtering them instead of blocking them. There are a lot of different models out there at the mo, but I chose to test drive Loop Earplugs. Loop are designed with an acoustic channel in the earplug to mimic the auditory canal in your ear, and use a mesh filter to reduce the volume of your surroundings. They are particularly designed with concerts in mind, as music is often played above safe levels (85 decibels) which can permanently damage eardrums in as little as 15 minutes. They have a couple of audio reduction levels from as high as 27 decibels down to 18 (which I tried) so you can purchase whatever reduction level suits your needs.
So how did I find them?
This weekend, I tested them out on a busy day in the noisy city of Dublin. I popped them in while walking down the street and found it really did reduce the sounds around me, but I could still hear everything I needed to, such as the noises from pedestrian crossings. As I was attending a musical, I also gave them a test run in the theatre for a couple of songs. I was really surprised at the results as the songs were just as clear with the earplugs in and out, just different volume thresholds. Unlike other earplugs, the loop in the plug is quite cool, and looks like a trendy piercing in your ear, so it’s also great that you don’t feel self conscious for having awkward things sticking out of your ears (like those ugly yellow foamy ones they give you on airplanes).
However, while these filtered out a lot of background noise, they did amplify and alter some internal noises. My voice sounded really distant and far away like I was down a tunnel, but everyone around me sounded fine. While walking to the theatre I ate a Magnum ice cream, and as I ate, the earplugs increased the volume of the chocolate crunching in my mouth to unsettling levels, and I could hear my jaw clicking as the upper and lower jaws rubbed against each other. It really weirded me out so I would not recommend eating while wearing them! I also found they didn’t sit in my ear that well and kept popping out, but I do have smaller ears (or so I’m told) so it’s possible that my ears are just not built for earplugs! 😛
I would definitely recommend trying out these earplugs or similar models (there are some that are more geared specifically for noise sensitivities such as Calmer) if you need to turn the volume of your surroundings down a smidge- I will certainly be adding mine to my handbag for days when I find myself in an auditory nightmare.
This week I’d like to talk about a recent landmark study showing the importance of early intervention for long term outcomes for autists.
For many years, studies have reported great benefits for autists when early interventions are taken. The research suggests that the earlier interventions are put in place, the better the outcomes for autists. Putting the right behavioural therapies in place as early as 18 months, such as applied behavioural analysis (APA), can be effective in improving language ability, social interactions and IQ for autists. Other programs advocate practical social interventions, peer intervention programs and active family involvement.
Recently, a new type of early intervention has been in the news showing really interesting results. An Australian clinical trial was conducted on a group of autists that showed early behavioural signs of autism to assess the impact of preemptive interventions long before any autism diagnosis (the group were all between 9-14 months old). The intervention used in this study is called iBASIS-VIPP (Intervention within the British Autism Study of Infant Siblings- Video Interaction to Promote Positive Parenting. Talk about a mouthful!). This intervention is a parent led, video aided therapy which is used to improve social communication and development in infants by helping parents to understand their child’s communication style and to learn how to adapt to it. Parent-child interactions were filmed during 12, 2 hour sessions over a period of 5 months and discussions were held focusing on both child and parent behaviours and how to address them to improve social interaction.
So what did the study find?
Results showed significant reductions in the severity of autistic behaviours throughout early childhood. The most interesting finding however, was that this preemptive intervention had greatly reduced the odds for meeting the diagnostic criteria for autism than those who received normal care from 21% down to 7%- that’s 2/3 reduction! 😲 In other words, use of iBASIS-VIPP in early childhood greatly reduces the severity of autism symptoms, and the odds of receiving an autism diagnosis.
Although given how many of us pass through the radar undetected, implementing a program like iBASIS-VIPP on a wider scale is easier said than done. Some early signs may be too subtle to detect, so later bloomers may not reap the same benefits. Nevertheless, early intervention, where possible can have serious lifelong benefits for autists.
This week I’ve been binge watching the Disney+ TV revival of Turner and Hooch, and in the midst of my fading interest in the show (it’s a bit meh, but grand background watching while you’re doing other things), I encountered some autistic characters on screen, so I decided to give my 2 cents on the representation of autism in this series.
Based on the 1989 film starring Tom Hanks, the series picks up in the present day following Turner’s son Scott as he enters the police force shortly after the passing of his father. Suddenly, his life get’s turned upside down as his father has willed his dog Hooch to him, a police dog in training whom his dad believed to be a reincarnation of his first canine buddy Hooch. Together, Turner and the wayward Hooch embark on a series of wacky adventures, solving crimes and making friends along the way.
Here’s a trailer for the TV series if you haven’t checked it out yet:
So where does autism fit in with the show?
For starters, Hooch’s trainer Erica has an autistic brother Curtis, who helps her out with the police dog training program. We don’t get to see much of Curtis, but as it turns out, the actor who plays Curtis, Jonathan Simao, does in fact have Asperger’s syndrome; so when you are seeing him on screen, you’re getting the real deal.
In episode 9 of the series, we get a much closer look at autism. Scott and Hooch have been assigned to protect an autistic child Anthony, who has witnessed an attack on his neighbour by an assassin, but due to his communication difficulties, he finds it hard to give the police a description. What follows is an endearing episode where Erica is brought in to help Turner and Hooch to communicate with Anthony, where Hooch is instrumental in getting him to open up.
Interestingly, Lucas Yao who portrays Anthony, is a renowned child prodigy and is himself mildly on the spectrum. You can read more about him here. This is very positive to see the show runners employing autistic actors to play autistic roles- something that many in the community have been crying out for.
The episode handles autism with great sensitivity without resorting to overt stereotypes (although having Anthony obsessed with trains is veering a little bit into this territory). It was particularly lovely to see the “paws-itive” impact that Hooch has on Anthony, as studies have shown significant benefits for autists who own dogs as I’ve discussed in a previous post.
While the TV show itself may not be the most thrilling, this was a lovely episode to see, and is a real step forward in screen portrayals of autism.
Leading on from my previous post about autism friendly shopping, this week I’d like to elaborate a little bit more on the subject.
Shopping can be quite an overwhelming experience for an autist- the hustle and bustle, bright lighting, loud noises, overwhelming choices, strong smells etc. It can be a real sensory assault. Personally, I HATE shopping (although I’m surprisingly good at it- I even buy my Christmas and birthday presents for friends and family months in advance!). It’s never been my thing, I’ve hated it for as long as I can remember; could never explain it. I did everything to avoid it growing up, so much so that when I was 16, I couldn’t figure out how to work the coin slot on the trolley! 🙈 But as time has gone on, I’ve had to adapt and get used to the process 🙂
While shopping can be troublesome for an autist, there are many alternative options to help you navigate the experience more smoothly.
Here are some of my top tips for making the shopping process a little easier:
Make lists- if you find that you get overwhelmed by the choices on offer in the shops, I find it very useful to write out a list to bring with me to keep me from getting distracted and to ensure that I hit all my targets as quickly as possible. Pro- tip, try writing the items you’re seeking in the order you would encounter them in the shops e.g fruit and veg first, meats and cold items, frozen foods etc. This way you can get in and out as quickly as possible without forgetting anything important.
Shop online-the joys of modern technology! In the last year, the online retail industry has exploded, so now you don’t even have to leave your house to get your shopping done. There’s websites for everything, and in most cases, the shipping costs are fairly low, so if you’re really anxious, just pull up your laptop and let your shopping come to you.
Avail of autism friendly shopping times- as I previously discussed in my linked post, most supermarkets have regular autism friendly shopping hours where the atmosphere is adjusted to be more sensory friendly. Even busy shopping centres have dedicated autism times to allow autists to pass through and browse the shops without fear of getting overwhelmed.
Set spending limits– if you have impulsivity issues surrounding shopping, try to set a spending limit to keep you from going overboard. Many financial apps can do this for you. You can even remove the tap feature on your debit card to discourage you from impulsively tapping your funds away.
Keep it short and sweet– to prevent a meltdown, keep your shopping visits nice and short until you feel more comfortable with longer shopping periods. You can slowly build up your tolerance over time.
Make use of sensory tools– as discussed in many of my previous blogs, using such sensory tools as noise reducing or cancelling headphones, sunglasses/tinted lenses, weighted clothing or even an item in your pocket to stim with can help to reduce some of the sensory impact of your surroundings.
Shopping can be a scary sensory experience, but if you follow some of the above tips, you’ll find the experience so much easier 🙂
This week I’d like to talk about a really interesting research area- autism and twins.
Oh my God two Aoife’s! 😲
Haha don’t worry there’s only one me- I don’t think the world is ready for me to have a clone!
But have you ever wondered what happens if an autist is a twin? Researchers have- they’ve been examining autism in pairs of twins for years and the results have a lot to tell us.
The evidence shows that in up to 90% of twins where one sibling is autistic, the second sibling is also on the spectrum. Identical twins share the exact same DNA (although fun fact, they have different fingerprints due to varying blood flow levels to each baby in the womb! 😀 ), so given that the root of autism is thought to be largely genetic, it makes sense that they would also be identical in this regard.
Interestingly, as no two cases of autism are the same, this holds true for identical twins. Severity can vary greatly among twins, so while both may be autistic, they may each have very different traits. Social trait severity in particular can vary between twins. In one study for example, one twin was nonverbal while the other had no speech issues. This demonstrates that while genetics may cause autism, they don’t always influence traits and severity, so just because your DNA says that you’re autistic, doesn’t mean that your quality of life is defined by your genome. That being said however, the reason for these differences has slightly baffled researchers as identical twins share the same DNA and environment, so the differences in severity is intriguing.
In the case of fraternal twins who do not share the same DNA, there is also a high chance that both twins will be autistic. It’s thought that this may happen as both twins share the same womb, they are exposed to the same in utero environmental factors such as stress, diet, drugs, maternal age etc.
The factors for autism development are many and varied, but twin studies certainly give us a lot of food for thought.
After many posts where I’ve mentioned them, this week, I’ve finally bought a weighted blanket! I have been dying to try one out for years, but they are often quite expensive, usually retailing around the 100-200 euro-ish region for a full blanket. However on a Googling whim, I recently found that Dunnes Stores here in Ireland stocks them for as little as €35, so naturally I couldn’t say no!
So first things first, what exactly is a weighted blanket?
Weighted blankets (also known as gravity blankets) are pretty self explanatory- they are flat blankets that usually contain metal, glass or plastic beads in evenly spaced, quilted pockets across the entire surface of the blanket. The blanket is designed to evenly apply deep, calming pressure to the user across their body, like simulating a hug. As the blankets are weighted, you are also more restricted, making it harder to toss and turn in your sleep. Many of these blankets are even designed to stay cool in summer and warm in winter. For optimal use, blankets shouldn’t exceed 10% of the user’s weight.
But how does this benefit autists?
As I’ve discussed previously, autists have higher levels of stimulatory neurotransmitters and lower levels of calming neurotransmitters, meaning that our brains are more “switched on” and harder to turn off than most. The deep pressure applied by the blanket is designed to stimulate the release of the calming neurotransmitters serotonin (which helps regulate the sleep cycle and temperature) and dopamine to relax and soothe the racing mind. It’s also thought that deep pressure can stimulate the limbic system, the emotional centre of the brain, which could potentially help calm you down during a meltdown.
So how did I find using it?
It was quite an unusual sensation to begin with- as you would expect from having a 6kg blanket pressing down on your body 😛 It’s somewhat of a workout moving it about when making the bed and moving it around the house! 😂 I found it was quite restrictive getting used to the sensation of the blanket on my body and learning how to move onto my side beneath it. It sometimes feels like someone is sitting on your chest at times, but in a good way!
After an adjustment period, I did find that my mind was much slower at night when I lay beneath it. The heaviness mimics that heaviness you experience just before you fall asleep which can be quite hard to resist. In general I found it a lot easier to sleep with the blanket on, and if I did wake during the night, the added weight made it very easy to slip back into sleep again. On the downside however, it can be a lot harder to get out of bed in the morning trying to push off the extra weight if you aren’t a morning person😂 I’ve had some pretty epic naps using the blanket as the weight keeps it from moving and prevents any nasty draughts from getting into your cosy burrito.
It will be quite interesting to know going forward how the blanket may work in a meltdown situation for me in the future.
Weighted blankets are not for everyone however, as they can be difficult for kids to get in and out of bed without the help of an adult They are also not easily transportable for travel so it isn’t the best idea to get a child dependent on them for sleeping. You can however buy weighted lap pads or weighted vests that can be much easier to use for children with autism and ADHD.
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! 😉