Continuing on from my last post, this week I’d like to discuss sensory rooms and how they can benefit autists.
As I mentioned in my last post, while trying out the sensory pod on the Carlow campus of South East Technological University (SETU), I also had the pleasure of trying out the campus sensory room for students on the spectrum.
But first things first, what exactly is a sensory room and how can it help autists?
Sensory rooms are designated safe, calming spaces where an autist can retreat when overstimulated. Here they can relax and stim in a room designed to stimulate the senses and regulate emotions. As with sensory pods, sensory rooms are all different, but they may have dimmed LED lighting, water features, light projections, soft furnishings, swings, textured pads, sensory toys, punch bags etc. The concept is surprisingly not a new one, dating back to the 1970’s in the Netherlands where Dutch psychologists wanted to awaken sensory perception in individuals with disabilities through sensory stimulation.
Fun fact– they were originally called ‘snoezelen’, a portmanteau of the dutch word to sniff (snuffelen) and to snooze (doezelen).
Here’s a video discussing how sensory rooms can help neurodivergents in their education:
So how did I find the sensory room?
I booked in for half an hour into the sensory room and found that like the sensory pod, it was incredibly soothing. It was so nice to be able to take some time out on the beanbag in this soundproofed room away from the hustle and bustle of the busy student centre. I wasn’t a big fan of the whirring sound from the water pipe in the room, however, one of the great things about the sensory room was that I had the power to customize my experience. I was handed 2 remotes when I walked in which allowed me to control the lighting, water features, projections etc. so I could tailor the room to my needs- an essential feature given the level of diversity in sensory needs. Like the pod, this facility would have been great to have during my third level education to take time out when assignments and exams were frying my brain.
You can check out a quick Tik Tok of the sensory room I visited here:
While facilities like this are great in an educational setting, you can also create your own sensory room at home to allow yourself or your kids some needed respite during an overload. There is no one size fits all model for sensory rooms. Different autists have different sensory needs, so being able to create your own room with sensory stimuli that specifically calm you is a game changer. Here’s a handy article that gives some tips on how to build your own room https://www.irishtimes.com/life-style/2022/10/15/a-quiet-place-how-to-build-a-sensory-room/.
This week I’d like to talk about sensory pods and how they can be beneficial for autists!
So first things first, what is a sensory pod?
A sensory pod is an enclosed space designed to be calming and relaxing for autists. Each pod can be different but they are generally soundproofed to reduce outside noise, dimly lit with LED lighting (which has been scientifically linked to behavioural improvements) and may have cushions or a comfortable mat to sit on. Pods may also allow you to adjust the temperature, play white noise, project visuals on the wall, and you can further add in sensory toys, weighted blankets, vests, plushies etc. As autists can struggle with sensory processing and overload, sensory pods are an ideal way to help manage an overwhelming situation. You can see a video about sensory pods here:
I recently booked into the sensory pod on the Carlow campus of South East Technological University (SETU) to give it a try. The university has two sensory pods in the library that neurodivergent students can avail of for time out, or even just a quiet place to study.
So what was my experience like?
I can highly recommend the sensory pod. While it was a bit awkward climbing into it as a fully grown adult in her thirties, once I was lying down in the pod it was so soothing. The room was kitted out with an interactive screen on the wall where you could avail of streaming services like Netflix to take some chill time out from your studies. There was a mirror on the wall with a panel of dials to adjust the lighting to your liking- blue, green, red, white and even no lights. The college even provided a USB mouse and keyboard that students could avail of if using the pod to study. Lying there on the squishy mat, I could easily have fallen asleep with the sounds of the library dulled around me. You would forget that you were in the middle of a busy college campus on a Friday evening!
It’s great to see a sensory facility like this for neurodivergents in an academic institution, I would love to have had something like this to study in back when I was in university (then again, I was only diagnosed as I was leaving third level education 🙃).
I also had the opportunity to try out the sensory room on campus which I will talk about in my next post.
This week I’d like to focus on the impact of autism on a specific organ of the body- the heart.
People with autism are at an increased risk of developing cardiometabolic diseases such as cardiovascular disease, heart attacks, stroke, diabetes etc. The risk of developing atherosclerotic heart disease in particular (where plaques clog up the blood vessels in the heart causing failure) is an estimated 47% higher in autists. Furthermore, there appears to be a link wherein people born with congenital heart disease (where the heart is not structured properly at birth) are 33% more likely to receive an autism diagnosis in later life.
Fun stuff…
So why autism? Why are there links to heart diseases?
One of the most plausible theories suggests that prolonged activation of the fight or flight response system (autonomic nervous system) in autists in response to stressors may be negatively impacting the heart. We all know that stress is bad, but as I’ve previously discussed, biological stress in autists tends to persist following a stressful situation when compared with their neurotypical peers, damaging the heart over time.
In terms of the link to congenital heart disease, researchers believe that alterations in blood flow to the brain caused by defects in the heart may predispose the brain to injury and developmental delays both in utero and in the postnatal period. These flow changes are thought to cause damage to white matter fibers which act like a train network connecting the brain. As a result, damage to this system could be negatively impacting learning and behaviour.
In addition to the links to heart diseases, alterations in heart systems may also be contributing to autistic symptoms. One theory suggests that alterations in the normal functioning of the fight or flight system may be contributing to a number of autistic behaviours such as meltdowns. Researchers have also noted that autists tend to have lower variability in their heart rate compared with their neurotypical peers. Higher variations in heart rate tend to indicate a more relaxed body where the rest and digest system (parasympathetic nervous system) is more active, but lower variability has been linked to difficulties recognizing emotions and social cues in addition to intellectual issues.
So the heart is seemingly far more connected to autism than we might have realised!
Prolonged periods of stress may indeed damage the heart, but with successful interventions, autists can better navigate life’s stressors. As with all disease risk, just because there is an increased risk, does not mean that it will manifest, but we should all be looking after our hearts- neurotypical and neurodivergents alike. It’s the only one we’ve got 🙂
This week I’d like to talk about the depiction of autism in the 1999 romantic comedy film ‘The Other Sister‘, starring Juliette Lewis and Diane Keaton.
Fun fact– Juliette Lewis also appeared in another film featuring an autistic character, ‘What’s Eating Gilbert Grape.’
So what’s the film about?
The film centres around mildly mentally disabled Carla Tate who has lived a sheltered life in a private school. Upon graduation, she returns home to her overprotective mother determined to earn a diploma from a local technical university so that she can become a veterinary assistant and establish her independence. Whilst at college, she meets and falls in love with Danny (who is also mentally disabled), and seeing his independent life, she further advocates for her own life and an apartment, much to the chagrin of her oftentimes controlling mother.
As a story, I enjoyed it. It was a wholesome romantic comedy that broke the mould at the time by featuring a mentally disabled couple at it’s core, showing that neurodivergents, despite our differences, want to have ordinary romantic relationships like everyone else. However, the film largely received negative views for the acting (Juliette Lewis was nominated for a Razzie for her performance) and shameless use of disability as a gimmick.
In terms of autism, this was a fairly run of the mill affair, standard stereotypical traits, but unlike the critics I found their depiction fairly inoffensive compared with other more stereotyped examples.
All in all, while not the most relatable depiction of autism when compared with other romantic movies featuring autistic couples (like ‘Mozart and the Whale‘), the film is still worth a watch 🙂
In continuation of my previous post about weighted blankets for autists, this week I’d like to discuss another weighted item- weighted plushies!
I’ve always had a fondness for soft and cuddly bears (gotta love that texture 😉 ) so when I found out that they made weighted plushies I just had to give it a whirl! I bought Sleepy the Sloth (or as he’s been renamed in our house Séamus the Sloth, which we thought suited him better) on Amazon a couple of weeks ago to see how I fared.
My sister had some fun staging him one night while I was out at a concert 😂
But first things first, what exactly is a weighted plushie?
A similar product to weighted blankets, weighted plushies are filled with beads or pellets instead of conventional stuffing to exert calming deep pressure to the skin to mimic the effect of a hug. Weighted plushies are usually much lighter than weighted blankets (Séamus is 1.5kg and my current blanket is 7kg) so they are a much more portable option when on the go with a child with autism. There are also heatable versions that you can put in the microwave so you have the double whammy of soothing weight and heat. Disney have even launched a line of weighted plushies so your favourite characters can be used for sensory relief! 😀
So how does it work?
Like weighted blankets, research is limited but they seem to work through the same mechanism. 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 exerted by the plushie 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 get on?
Aside from all the fun we’ve had playing with Séamus, he really provides a lovely sensory experience. It’s reminiscent of having a sleeping puppy on your chest when you drape him round your neck, (minus the warmth, wriggling and gentle snuffling sounds). You get that same sense of calm wash over you like with the weighted blanket, so it’s great for when you’re sitting watching TV or travelling and need something less cumbersome. However, a plushie does not cover the entire body, so it doesn’t quite have that same fully enveloping sense of relaxation that comes from being completely covered by a weighted blanket.
All in all I would highly recommend giving a weighted plushie a try, but they can be a little pricey, so if you’re buying it for a child be sure to involve them in the decision in case they don’t like the animal/character you intend buying.
As it’s been a few years since my first post about celebrities with autism, I’ve decided to write a follow up post to discuss some other celebrities who have since discussed their experiences of autism.
Sia
Australian pop star Sia recently divulged that she was on the spectrum, 2 years after her film ‘Music‘ received backlash for it’s depiction of autism and casting of neurotypical Maddie Ziegler as a nonverbal autist. She did not admit to being on the spectrum at the time, but said that the film was based on the experiences of a neurodivergent friend (I must check out this film for a future post).
Sia has said of her diagnosis:
“For 45 years, I was like, ‘I’ve got to go put my human suit on’, and only in the last two years have I become fully, fully myself.”
SirAnthony Hopkins
Two-time Oscar winning Welsh actor Sir Anthony Hopkins was diagnosed with Asperger’s syndrome in 2014 when he was in his late 70s! The actor is quite dismissive of his autism status, calling neurodiversity a “fancy label” and says that he doesn’t feel very different after the diagnosis. He has said that autism impacts his ability to socially interact, but it also makes him quite focused which helps him in his acting career:
“I definitely look at people differently. I like to deconstruct, to pull a character apart, to work out what makes them tick and my view will not be the same as everyone else. I get offered a lot of controlling parts, maybe because that’s how people see me. And maybe I am very controlled because I’ve had to be. I don’t question it, I just take the parts because I’m an actor and that’s what I do.”
Elon Musk
Eccentric billionaire businessman Elon Musk has openly talked about his Aspergers diagnosis and how he was bullied as a child for being different, often struggling with social cues and literal thinking. His diagnosis has never held him back however, as he is now one of the wealthiest men in the world, and even became the first autistic host of Saturday Night Live (or at least the first person to admit it!). He often credits his brain as the driving force behind his success as his intense focus fuelled his specialist interest in science and technology, often spending entire nights happily programming on his computer.
Here’s a video of him talking about his experiences of autism:
Hannah Gadsby
Australian comedian Hannah Gadsby was diagnosed with autism in her late 20’s after a lifetime of struggling to fit in. She openly talks about her diagnosis in her comedy- a great way to both educate and help people see the lighter side of the spectrum. Here’s a clip from one of her Netflix specials:
Prison Break (remember that show? There’s a throwback!) and Legends of Tomorrow actor Wentworth Miller was diagnosed with autism during the pandemic in 2020 in his late 40s. He announced his diagnosis in 2021 on Instagram, telling the world of his struggles to get a formal diagnosis and how he is slowly educating himself on the world of autism.
Of his diagnosis Miller said:
“This isn’t something I’d change … immediately being autistic is central to who I am. To everything I’ve achieved/articulated.”
Dan Harmon
Writer and creator of shows like Community and Rick and Morty, Dan Harmon has self-diagnosed himself with Aspergers syndrome. When creating the character of Abed in Community and researching his character traits, Dan began to realise that he may be on the spectrum himself.
You can hear him discuss his experiences in an interview here:
Melanie Sykes
UK TV presenter and former model Melanie Sykes was diagnosed with autism in 2021 in her early 50s.
“I cannot begin to tell you the sense of relief this is for me and how much I celebrate this diagnosis.I now have a deeper understanding of myself, my life and the things I have endured.”
“I am wired a completely different way and I’m only just understanding it. Where I used to think ‘what’s wrong with me?’ now I know it’s everything that’s right with me.”
You can read more about her experiences in her book Illuminated: Autism & All The Things I’ve Left Unsaid and in the interview below:
Stephanie Preissner
Irish author and screenwriter Stephanie Preissner was diagnosed with autism in 2021 at the age of 34. She had always suspected that something was wrong, but never thought she might be autistic as the male experience fed to us in the media did not match her experiences (been there!). She had always done well in school with it’s structures and routines, but her mental health started to suffer in college as expectations were less clear. You can listen to a short interview with Stephanie about her experiences here:
BlindboyBoatclub
Now most of my international readers will not have heard of Blindboy Boatclub (one half of the Irish comedy hip hop duo The Rubberbandits) but his autism story is an interesting one. But before I get into it, for those of you wondering about his bizarre appearance, the podcaster, author and TV presenter famously wears plastic shopping bags on his face to conceal his identity 🤣. Blindboy was diagnosed with autism in his 30s following comments on his podcast from his neurodivergent listeners who remarked on how many of his worldviews aligned with their experiences of autism. Without his podcast, who knows if he would ever have been diagnosed! You can listen to his podcast talking about his diagnosis here: https://podcasts.apple.com/ie/podcast/intrapersonally-speaking/id1300577518?i=1000557413083
Just so my international readers can get an understanding of The Rubberbandits, here’s a video of their most popular parody from the peak of their fame:
Christine McGuinness
British model and TV personality Christine McGuinness was diagnosed with autism at the age of 33 having struggled throughout her teenage years, allowing her to finally understand why she is the way she is. Her 3 children are also autistic. She now advocates for greater visibility for women on the spectrum which you can see. in the video below:
Eminem
Chart topping rapper Eminem may also be on the spectrum. He has not openly discussed a formal diagnosis, but he has mentioned having Asperger’s syndrome in a couple of his songs which are famously influenced by his real life. He talks about Asperger’s in the opening lines of his 2013 song ‘Wicked Ways‘:
In interviews Eminem has talked about being very shy and awkward as a kid, often feigning illness to skip school so that he could stay home reading, writing poetry and drawing comic book characters.
It has also been suggested (but no confirmed diagnosis) that Vladamir Putin, Donald Trump, Lionel Messi and Bob Dylan also seem to demonstrate a number of autistic traits. Following the release of Christopher Nolan’s gripping biopic Oppenheimer, there has also been a lot of renewed speculation that the renowned physicist Robert Oppenheimer may also have been on the spectrum.
This week I’d like to discuss the topic of diabetes and how it can be linked to autism.
But before we get into that, what is diabetes?
In the body, the hormone insulin is produced by our friend the pancreas (in the image above) to control the absorption of sugar into our cells. Diabetes mellitus is a condition where blood sugar levels are uncontrolled due to insufficient insulin production. Elevated blood sugar levels (hyperglycemia) can cause a range of health issues such as nerve damage in the hands and feet (peripheral neuropathy), permanent damage to eyesight (diabetic retinopathy) and life threatening ketoacidosis (where substances called ketones build up in the body making blood more acidic).
There are a few different types of diabetes:
Type 1 or insulin dependent diabetes– this occurs when the pancreas ceases to produce insulin (caused by the immune system attacking insulin producing β cells) leading to high blood sugar levels. Replacement insulin must be injected to keep blood sugar levels stable.
Type 2 diabetes– occurs when the body develops insulin resistance so insulin is no longer able to control blood sugar levels. It usually occurs in adulthood as a result of poor diet, obesity and lack of physical exercise
Gestational diabetes– this type of diabetes occurs during pregnancy in women who have never previously had diabetes. It usually goes away following birth of the baby, but does increase your risk for type 2 diabetes in later life
That’s great Aoife, but what has all this got to do with autism?
Research suggests that idividuals with autism may have a 57% higher risk of developing diabetes compared with their neurotypical peers; specifically the risk is roughly 64% higher for type 1 diabetes, and a whopping 146% higher for type 2 diabetes!
So why are autists more susceptible?
In the case of type 1 diabetes, as I’ve previously discussed, autists tend to have an overactive immune system (likely due to genetic mutation) which could be damaging the pancreas preventing insulin production. Research has also found that type 1 diabetic mothers are at a higher risk for giving birth to an autistic child as it’s thought that autoimmune diseases like type 1 diabetes produce antibodies that can attack the developing brain in the womb. Similarly, gestational diabetes has been linked to a slightly increased risk in the development of autism and ADHD due to exposure to high blood glucose levels in utero.
The massive type 2 link on the other hand has a lot more to do with lifestyle. Sensory processing issues relating to food can lead to quite a restrictive diet. This diet is often high in sugar which may lead to type 2 diabetes in adulthood. Some autists with ADHD also have impulsive issues with over-eating for sensory stimulation, while others struggle with insatiable hunger (polyphagia), especially those with co-morbid Prader–Willi syndrome. Physical limitations due to co-morbid issues like of dyspraxia can also reduce and limit physical activity increasing the risk for diabetes. In addition, some studies have found genetic links to autism and weight gain which further compound this risk.
As with all things in life, just because there is an increased risk does not mean that the disease will manifest, but it’s useful to be aware of the risk nonetheless.
This week I’d like to talk about something that isn’t normally discussed in relation to autism- headaches and migraines.
Anyone can get headaches or migraines, but it appears that there is a link between autism and their frequency , with one study even suggesting that autistic children are twice as likely to experience migraines when compared with neurotypicals. Further studies are required to confirm comorbidity, but the studies that do exist suggest a lot of overlap.
So have they any idea why there is a link?
One of the most popular theories suggests that issues in sensory processing may make autists more susceptible to headaches and migraines. For both autists and migraine sufferers, differences in sensory processing can impair how the brain registers and modulates responses to sensory stimuli like light and sound which can trigger migraines following a sensory overload. There are a lot of structural changes in the brains of both autists and migraine patients which could further explain this sensitivity.
Research has also reported that autists have altered pain sensitivity which can distort their perception of headaches, so, what might be an ignorable ache in a neurotypical individual may be much more severe for an autist.
Interestingly, there may also be a link between headaches/migraines and our digestive health. The gut is innervated by a network of nerves known as the enteric nervous system, often nicknamed a second brain. Migraines are often co-morbid with gastrointestinal problems where issues in the second brain can influence changes in the main brain via the brain-gut axis. GI issues are frequently co-morbid with autism so this could be the most logical explanation for the link. I know I’ve certainly triggered migraines from eating things that didn’t agree with me, only to have the migraine immediately dissipate the minute my stomach hit the ejector button! 😂
Migraines have also been linked to low levels of serotonin in the brain. As previously discussed, serotonin levels are dysregulated in autists so this could also explain the link. This is particularly interesting as 95% of serotonin production occurs in the gut, so this further indicates a gut related link to headaches and migraines in autism.
Joint hypermobility could also be contributing to headaches. People with connective tissue disorders like Ehlers Danlos syndrome (EDS) frequently experience headaches. Weakness in supporting tissues like collagen can cause instability in the neck and spine which can pinch nerves, interrupting the flow of blood to the brain and triggering headaches and migraines. As joint hypermobility can be co-morbid with autism, this could further explain the link.
As with many aspects of the spectrum, susceptibility to headaches and migraines could also be genetic as there is an overlap in some genes linked to both autism and migraines.
This week I’d like to talk to you about an exciting new book for autistic teenagers- ‘Freya Harte is not a Puzzle‘ by up and coming Irish author Méabh Collins. The book centres on 14 year old Freya Harte who has just received an autism diagnosis and details her experiences as she comes to terms with it.
Having read an article about this book and it’s author Méabh (she and I are the same age and interestingly also diagnosed at the same age!) I was very excited to read it. Finally- a book about a teenage girl with autism written by a fellow autist! Best of all, Freya is coming up through the Irish education system- just the kind of book my teenage self could have related to.
So what did I make of it?
Author Méabh Collins
Quite frankly, I couldn’t put the book down! Freya’s experiences of autism were so similar to my own (apart from the timeline on the diagnosis), I really connected with her. Her literal thinking, the constant battle to fit in with her peers, the struggles to keep the tears at bay, the solace of the confined bathroom stall- it all hit very close to home. One of the things I most liked about the book was how Méabh gave us a genuine insight into the workings of the autistic mind and the issues we can have with twisted logic. For example, Freya struggles with an eating disorder because she read an article about foods for a healthy brain and thought that if she changed her diet drastically, maybe her brain would be more normal. She also gets up really early on a Saturday and takes the Luas into Dublin city to buy a Disney magazine far away from where anyone she may know might catch her buying it so that her peers don’t judge her for her specialist interest. It seems a bit daft when you read it, but these are the kind of logical decisions/conclusions the autistic mind makes- there’s method in the perceived madness!
This book gives great insight into how we work and I would highly recommend it for any teachers, parents or friends who are trying to support a woman through an autism diagnosis. No two autists are the same, but it’s a very good starting point to help you to understand what our minds go through on a day to day basis, how we see the world and rationalize every aspect of our day. Méabh deliberately took the approach of focusing on autism from the inside out. No stereotypical savants, no tricks or exaggerations for dramatic/comedic effect; just a nuanced exploration of the female autistic experience so that the reader can begin to understand how and why we think the way we do.
Understanding goes a long way to helping an autist, so this book is a must read for anyone who knows a woman with autism and would like an insight into the autistic mind.
This week I’d like to discuss a potentially autistic character in the classic 90’s ‘Wayne’s World‘ films- Garth Algar played by Dana Carvey.
In case you’ve never seen Wayne’s World, the films are centred round metal loving best friends Wayne and Garth who have their own comedy public access TV show in Aurora, Illinois, often getting into weird and wacky situations. The duo are perhaps most famous for re-popularizing Queen’s ‘Bohemian Rhapsody’ in the 1990s in this iconic scene:
So where does autism come in?
While autism is never explicitly mentioned and little was relatively known about the condition at the time of filming, many have retrospectively concluded that Garth is quite likely on the autistic spectrum. A shy, awkward and uncoordinated nerd, Garth actively avoids eye contact (except with the camera), doesn’t like touching, often misses social cues and can be very literal in his thinking and resistant to change.
His iconic exchange with Kim Basinger, “So, would you like to have dinner one night? Garth: Oh, I like to have dinner every night“; is a classic Asperger’s moment. He also is very into his specialist interests like electronics and heavy metal, and has a wild imagination like many autists.
Here’s a clip from ‘Wayne’s World 2‘ which really showcases Garth’s awkwardness, mind blindness and literal thinking:
Interestingly, despite not intentionally seeking to depict autism, many autists consider Garth to be a very positive portrayal of the condition. Garth is seen as a little bit quirky, but is fully accepted by his friends. He has a job, a social life, and even manages to bag himself a couple of girlfriends. These are all “normal” positive things, the real lived experience of many of us late diagnosis autists. Too often in media portrayals of autism the characters are depicted as othered and often incapable of living independently, even today, so for films this old to have such a positive approach to neurodivergents is pleasantly refreshing.
A Is For Aoife Not Autism 