Tag: AS

Autism and Revenge bedtime procrastination (RBP)

Greetings Earthlings!

This week I’d like to discuss something that I have a very bad habit of engaging in- revenge bedtime procrastination.

And what pray tell is that when it’s at home?

You may never have heard of the expression, but it’s something that most 0f us have likely done at some point in our lives, especially for autists. Revenge bedtime procrastination (or RBP) is the deliberate act of putting off sleep in order to reclaim leisure time that was lost during the day, often after a busy and stressful one. The term was first coined on Chinese social media in 2014, where ‘revenge’ comes from taking back time for yourself, however, this behaviour is often self sabotaging resulting in poor sleep quality and deprivation.

For autists in particular, this behaviour is seen as a means of taking back control in a world where we often feel out of it. It’s a coping mechanism of sorts where we engage in this intentional sleep deprivation after an overwhelming day of sensory overload and social obligations. Taking back this time, while self sabotaging, is needed for self soothing, allowing autists to recover from the demands of living in a neurotypical world. Many autists struggle with executive dysfunction and ADHD, so organization and planning can be difficult, often leading to an out of balance day where routine can be difficult to maintain. RBP allows an autist to use their limited time at night for specialist interests and relaxation, where the cost of sleep is considered a worthy investment (or at least perceived as such til the next morning 😴).

I’m especially prone to this type of behaviour- I just wasn’t aware there was a word for it until recently. My schedule can be pretty hectic at times, often rolling home late at night, but despite my tiredness, I have to pull out my phone or a book for a while when I get to bed to veg out and decompress after the day. Other times, I tear into a few rows of knitting late at night, or tell myself I need just an episode or two of whatever show I’m currently binging before I can go to bed. I may be falling down from the tiredness, but there’s just something in me that pushes me to do these things before I turn out the light. Sometimes it’s this need to feel productive in my projects, other times its to zone out. It doesn’t matter how tired I’m going to be in the morning, my brain just needs those extra few minutes of me time.

It may not be the most sensible autistic behaviour, but with all the sleep issues autists experience at night, do whatever you need to do to reset your brain before bed 😌

Hope you enjoyed this post!

Have a lovely weekend!

Aoife

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Autism and Displaced Anger

Greetings Earthlings! 🙂

Leading on from my previous posts about meltdowns, emotions and alexithymia (the inability to identify emotions in the self and others), this week I’d like to take a close look at the specific issue of displaced anger.

As I’ve discussed multiple times, autists process emotions differently to their neurotypical peers, often because they aren’t able to properly recognise what they’re feeling. In my experience, anger is one of the worst offenders. I have often had issues with displaced anger, misdirecting my wrath at everyone and anyone around me because I hadn’t been dealing with the source. Just walking around for weeks lashing out at the slightest annoyances because I hadn’t twigged that I was bothered by something else entirely.

Interestingly, I have also resorted to anger as a cloak in the past. I often found when on the verge of a meltdown being angry and rude were much easier emotions to project than what I was truly feeling. Anger was much easier to control, with less likelihood of dissolving into tears (not to mention the repellant effect). I just knew that were I to make eye contact or speak without anger in those scenarios, the floodgates would open, and it was too overwhelming to have to explain them.

There is also a cognitive emotional processing condition which can contribute to displaced anger outbursts known as anger rumination. This happens when an autist has a tendency to dwell on past experiences of anger and frustration. By focusing on these experiences, autists develop difficulties in properly processing and responding to anger. Persistent rumination on past stressors depletes your ability to self regulate resulting in behavioural inhibition, which makes you more hostile and prone to displaced anger outbursts.

While it’s never nice to be on the receiving end of these anger outbursts, try to bear in mind that you’re unlikely the cause. You might have triggered a reaction, but usually the issue runs deeper. Try to give an autist some space in these scenarios to give them time to calm down. Talking after the red mist has passed can be very helpful in allowing an autist to process their emotions in a healthy way in a safe, nonjudgmental environment.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend!

Aoife

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Autism and Screens

Greetings Earthlings! 🙂

Leading on from my previous post about virtual autism, this week I’d like to take a more specific look at the impact of screen use has on people with autism.

Whilst screen use is largely seen as a negative thing for the general population, screens can actually have a positive impact for autists:

  • Communication, connection and social skills– screens can help autists to connect with peers and communicate without the pressure of face to face interactions. There’s no need for eye contact, and plenty of time to think about and edit your response, allowing autists to relax. Removing these social barriers will also help autists to develop their other social skills which can then be applied to the real world. In my work for example, I’ve found that AI chatbots can be very useful when I’m struggling to find the right words and tone to deal with an awkward email
  • Regulation– Screens can offer a calming, safe (at least perceived as safe to an autist) and familiar presence for autists in an overwhelming, out of control world, enabling them to manage anxiety and meltdowns. For example, one of my autistic friends whips out her phone to look at cute animal videos anytime she is anxious, helping her to re-centre
  • Accessibility and gamified learning– screen based technologies can be very helpful for autists struggling with learning issues and verbal communication. The use of augmentative and alternative communication devices (AACs) and speech-to-text/text-to-speech tools can be hugely beneficial for autists. Similarly, gamified learning can be used to encourage autists to learn through the use of educational games which can help autists who struggle in a classroom setting. While studying for my leaving cert French oral, I used to study my notes while I played Mario Kart, which somehow made the information stick a lot better in my memory 😂🙈
  • Life skills– the internet is filled with useful apps and videos that can help teach autists valuable life skills that they struggle with in the real world such as personal hygiene, cleaning, map reading, cooking and shopping. Online shopping has been a complete gamechanger for me as I can shop peacefully with no pressure or risk of sensory overload
  • Specialist interests– having access to a screen enables autists to easily explore their specialist interests which can further help them to regulate when overstimulated. Back in the early days of dial up internet, I would happily spend a couple of hours waiting on a page to slowly load on the ABBA website just to read the historical chart information for all of my favourite songs. I would have bored everyone senesless with ABBA facts had I access to a mobile phone back in the 90s! 🤣
  • Executive function- planners, reminders, alarms and body doubling ADHD apps (such as Dubbi) can be very useful to help autists who struggle with organization

However, there are also many negative implications for autists that overindulge in screen time:

  • Overstimulation– excessive exposure causes over stimulation of the brain, increasing stress levels and disregulating emotions
  • Addiction– as previously discussed, autists can be prone to addictive behaviours. As screens are highly addictive for neurotypicals, the risk can be even higher for an autist
  • Cyberbullying– autists are often an easy target for bullies, and granting them access to social media unchecked can have disastrous consequences. Growing up in the early era of social media, I didn’t know how to act appropriately online and often emulated those around me without thinking. This autistic tendency for masking and mimicry got me into hot water a couple of times, but if I were unsupervised and allowed to emulate the way users behave today, things would have been so much worse
  • Decreased focus and sleep issues– overuse of screens can impair concentration and attention spans for autists, which may be already impacted by co-morbid ADHD. The blue light emitted from these devices can also disrupt sleep patterns which are often dysregulated for autists. Sleep and screens is often an issue for me, especially if I have been watching content at double speed (it’s like listening to fast speech revs up the speed of my inner monologue which can overstimulate me before bed)

Some studies have also suggested that there is a link between screen usage before 2 years of age and the risk of developing autism, buuutttt it doesn’t look like this link is causal. Perhaps the link is coincidental given how virtual autism manifests.

As with most things in life, moderation is key for autists when interacting with screens. There’s no set amount of hours that one can follow, but monitoring your child’s screen use and it’s impact on their behaviour will help you determine how long is too long.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

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Virtual Autism

Greetings Earthlings!

This week I’d like to talk about a new type of autism that is emerging- virtual autism!

Em… what on earth is that?

No, it’s not some kind of futuristic disease or new computer virus. The reality of this condition is far more concerning.

Virtual autism is being used to describe a growing trend of developmental delays in children that mimic autism due to excessive digital device usage. In other words, screen usage is causing children to falsely present as autistic!

The term was first coined in 2018 by Romanian psychologist Marius Zamfir to describe behavioral abnormalities observed in children between the ages of 0 and 3 resulting from a lack of motor, sensory and social stimulation after spending >4 hours a day in a virtual environment. Symptoms observed  include communication issues, social withdrawal, lack of eye contact, attention problems, sleep issues, physical inactivity, and developmental delays which overlap with the early signs of classic autism. Similarly, other studies have backed up these observations by confirming the presence of autism like symptoms in toddlers that used electronic screens excessively.

Whilst the condition is too new to be recognized as a genuine diagnostic form of autism, experts are nonetheless warning parents about the risks and dangers of virtual autism. The good news is that unlike other forms of autism, virtual autism is easily preventable by monitoring and restricting screen usage. Similarly, virtual autism can be reversed and improved in most cases by reducing screen time, encouraging face to face interaction and playing with toys. The brain is highly adaptable, especially in childhood, so fear not if you think your child is showing signs of virtual autism. If you are unsure if your child is truly autistic or showing signs of virtual autism, cutting out excessive screen usage is a good first step to rule out virtual.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

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Physical attributes of Autism

Greetings Earthlings! 🙂

Leading on from my previous post You don’t look autistic?, it seems that I might need to eat my words that no one looks autistic. Research in recent years indicates that autism may in fact have some physical attributes- in other words, there is actually an autistic look 🤯

Yep, I had to be peeled off the floor when I heard that- so many autists making jokes about not looking autistic and here we have science telling us that we do! 😂

So what does the research say?

Whilst there isn’t a specific definitive autistic look as with other genetic conditions like Down’s Syndrome, studies have identified the following facial features in autistic children:

  • Eyes are wider and spaced further apart
  • Broader upper face
  • Shorter middle face
  • Larger mouth and philtrum (i.e., the groove between your nose and mouth)
  • Others may also have a flattened nasal bridge, a longer philtrum, and a less pronounced chin

Similarly, studies suggest that 10-35% of autists have a larger head size than their neurotypical peers. The circumference of the head, particularly in males with autism, is much larger than average- a condition known as macrocephaly. This size difference is often linked to larger brain volume in childhood, thought to be caused by early brain overgrowth. Head size usually balances out in adulthood, but it may persist for some autists.

As with all autistic traits, not all autists may have these facial features (my mouth is so small my wisdom teeth had no room to grow), and the differences are so subtle it’s doubtful that the untrained eye will notice. The research is very limited, so these facial features may not even indicate an autism diagnosis, but still it’s a very interesting concept. Perhaps one day facial analysis may help speed up the autism diagnostic process.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend!

Aoife

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Autism in Doctor Odyssey

Greetings Earthlings! 🙂

This week I’d like to discuss the recent depiction of an autistic character in the medical drama Doctor Odyssey.

For those who haven’t seen the show yet (not that I’d recommend it, I mainly stuck with it for closure on how the series ended 🫠), Doctor Odyssey follows Max Bankman (played by Dawson’s Creek alum Joshua Jackson) who has just taken a job as the on-board doctor for the luxury cruise ship ‘The Odyssey’. This overhyped drama from producer Ryan Murphy (known for Glee, American Horror Story, Monsters and 9-11) was 90% unrealistic rubbish, BUT it did provide us with a somewhat true depiction of autism.

During episodes 9 and 10 of the first series (which by current reports seems likely to be it’s last 🫠), the ship receives a distress call from a group who’s charter ship sank after a shark attack. Among the rescued is first mate Ray (played by AuDHD actor Liam Johnson), a straight talking, literal thinking, awkward autist who is a little out of sorts on the ship as his routine has been disrupted following the shark attack. Following a rocky start after inadvertently annoying staff on the ship, Ray quickly becomes an asset using his mathematic and marine skills to chart the quickest course to port, in addition to advising the ships captain when The Odyssey is besieged by a pod of orcas (as if the sharks weren’t enough…).

Now while Ray’s onscreen traits and manner are relatively stereotypical (there’s a lot of scenes about sound sensitivity around using sound cannons and fireworks to get rid of the orcas), what was refreshing was how the show chose to depict him as a handsome, stoic, naval character. When men are depicted with autism, they are generally overtly nerdy, skinny, outcasts working in some form of STEM, but here we find a jock-esque first mate confidently navigating the seas, showing us all that with a little support and understanding, autists can do anything they set their mind to.

All in all, while the show is rather far fetched, it does sort of get autism right (though I still wouldn’t recommend watching it- stick with The Pitt and The Good Doctor 😉).

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend!

Aoife

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Autism assessments for trans kids?

Greetings Earthlings!

Leading on from my previous post about gender identity and autism, this week I’d like to discuss NHS proposed guidelines in the UK where children who are referred to gender clinics will also be assessed for neurodevelopmental conditions like autism and ADHD.

But is this a good thing?

While some people believe that this is part of the growing anti-trans agenda in the UK, the majority feel that this is a positive step for the autistic community as experts estimate that trans patients could be 3-6 times more likely to be diagnosed as autistic. As such, it’s important that gender dysphoric patients are properly assessed so that they can be fully supported. This is especially important given the long term ramifications if a patient transitions but their dysphoria was a temporary product of their autism.

I have read many stories over the years from families with undiagnosed autistic kids who identified with trans ideology as they did not feel like they fit in. These children then began the transitioning process, only to find that after an autism diagnosis, they no longer felt at odds with their birth gender. Statistics among de-transitioning patients are difficult to estimate, but studies have found that as many as 15-20% of these are autistic.

It’s actually quite common for neurodiverse children to temporarily disassociate from their bodies as they naturally approach puberty. In my own case, I often felt that life would be so much easier if I could just click a button around 9 years of age (after having the dress up experience of one’s first holy communion of course 😂🙈) to switch genders as being a man seemed so much better than the realities of womanhood. Other than these passing thoughts as an undiagnosed kid, I have never ever felt at odds with my gender. Despite being quite tomboyish in my younger days, my friends describe me as quite feminine in my 30s with a wardrobe that’s bursting with dresses. Were 9 year old Aoife to express such thoughts today, I would likely be landed in a gender clinic being assessed for gender dysphoria, when what I really needed was an autism assessment.

Whilst many autists may be genuinely transgender, we need to do due diligence in gender assessments to ensure that no decisions are rushed. In my opinion, this is an excellent plan from the NHS to ensure that autists and people with gender dysphoria are getting the best care possible.

On the other hand, this proposal begs the question as to why similar guidelines have not been recommended for other conditions that are often co-morbid with autism. Many people who are assessed for ADHD are receiving subsequent autism diagnoses. Overlap is estimated to be as high as 80%, yet an autism assessment is not always considered during ADHD assessment. Moreover, it’s thought that 23-32% of patients with eating disorders are also autistic, an issue that is quite common for undiagnosed women, yet autism assessments are not factored into treatment. These co-morbid issues impact an arguably higher number of autists than gender dysphoria, yet patients are generally not co-screened for autism.

A larger conversation is clearly needed around co-occurring mental health and neurodiversity if we want to properly support the autistic community.

Hope you enjoyed my post dear Earthlings!

Have a lovely weekend!

Aoife

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Robert F Kennedy Jr.’s Autism Beliefs

Greetings Earthlings! 🙂

I can’t even remember what I was planning to write about this week, so incensed am I about these comments that Robert F Kennedy Jr. (the US Health secretary) has been making about autism in recent weeks.

For those of you who haven’t heard, RFK Jr. has vowed to find the cause autism by September, as he believes that it is an entirely preventable epidemic resulting from exposure to environmental toxins. A vaccine skeptic, he plans to launch a major study to identify the right toxin to rid America of autism, going against the multitude of studies that indicate a genetic cause (he claims genes just make you more susceptible to environmental toxins🙄). This study is coming on the back of the Trump administration’s ban on research and services related to diversity, equity, inclusion and accessibility. Naturally, the autism community is in uproar about these flippant, uneducated comments leaving RFK Jr. baffled by the “tsunami of anger” that has come his way.

Here’s just a taste of his comments:

“These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use a toilet unassisted.”

This sort of statement beggars belief… He has since clarified that he only meant the 25% of autists who are severe level 3, but that doesn’t make it any better. Let’s go through this checklist for a minute:

  • Never pay taxes or hold a job? My employers and Irish revenue would beg to differ (the latter have made a fortune from me!)
  • Play baseball? I could (badly) if I wanted to, but baseball is boring
  • Write a poem? I’ve written many (and this blog can attest to my writing skills)
  • Go out on a date? I recently sat through 32 speed dates (though it did require painkillers and chicken nuggets to reset after 🫠)
  • Use the toilet unassisted? Always- unless I need a hand getting out of a jumpsuit!

Every single neurodivergent I know will equally pass this list. As we have discussed many times on this blog, autism is a spectrum, you cannot make generalizations. We’re all unique and experience autism differently. Not to mention how damaging it is to claim that he intends to “cure” autism, seeing our existence as a problem to be fixed.

And when you think things can’t get any worse, it’s been reported that there are plans to monitor autism records and make major cuts to disability services. The National Institute of Health (NIH) is collecting private medical records to provide researchers with data for RFK Jr’s new study, with reports saying there are plans to craft a new registry to track people with autism🤦🏻‍♀️.

Compiling such a list could have huge implications for data security. Who’s to say this registry wouldn’t be made available for potential employers who could use it discriminate against candidates? As much as we’d like to believe we live in a society more accepting of neurodivergence, prejudices still exist when it comes to disability in the workplace. Whilst my current employers are very supportive (they’ve even asked me how to make the snacks more autism friendly 😂), I’ve had other experiences where I was discriminated against for my diagnosis.

Even worse, if this registry made it into the hands of criminals, they could create a campaign to defraud you, playing on your social inadequacies and trusting nature. It’s a disaster waiting to happen…

Just saying, it’s beginning to sound an awful lot like another person with harmful ideas who took a registry…

This will be an interesting story to follow over the next few months.

Hope you enjoyed this post (or at least my commentary since the subject matter sucks)!

Have a lovely weekend!

Aoife

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Do people with autism look younger?

Greetings Earthlings! 🙂

Leading on my from my previous post about autism and ageing, this week I’d like to discuss whether or not people with autism look younger.

Yep, apparently there appears to be a link between autism and looking younger!

In my own experience, it has been mentioned that I look far younger than my age. I’ve always had a youthful complexion, but I’d just chalked it down to good skincare, genes and the lack of a man to turn my hair grey 😂 Never in my wildest dreams did I think that my autism might be linked to my appearance!

So let’s explore why autists look younger.

As I’ve discussed in my previous post about autism and joint hypermobility, some autists have co-morbid hypermobility conditions such as Ehlers-Danlos Syndrome (EDS). This causes structural tissues like collagen to be weaker and more elastic which causes stretchy joints. However, this increased elasticity can result in a more youthful appearance as the skin is more resistant to damage, which can delay or even prevent the appearance of wrinkles🫨

Facial expressions may also contribute to a youthful visage, as autists tend to produce facial expressions less frequently and for shorter durations than neurotypicals. A less expressive face = less wrinkles.

It’s also possible that our youthful appearance may be more behavioural than biological. A lot of autists tend to be introverted and prefer indoorsy activities away from the elements, especially those with light sensitivity. As a result, lower UV exposure may be preserving our skin from the ageing impact of the sun. My nickname was ‘Dracula’ as a teenager as I would spend summers indoors reading, often returning from sun holidays with little to no tan🙈. On another level, our tendency towards naivety, more childish interests and behaviours can make us seem younger by association rather than looks.

However, while the evidence does seem to suggest autists do look younger, there equally is evidence that some autists look a lot older. As much as EDS increases skin elasticity, it can also lead to thin, fragile skin that can be more prone to bruising, resulting in premature ageing. One study even suggests that autists experience a faster rate of ageing and that they have an older facial age. This may however be correlated to poor self care, lifestyle and the higher levels of biological stress experienced by autists, buuuttt the same can largely be said for neurotypical ageing🤷‍♀️.

Hope you enjoyed this post dear Earthlings! 🙂

Happy Easter!

Aoife

1

Autism in ‘The Pitt’

Greetings Earthlings! 🙂

This week I’d like to discuss autism in the brand new medical drama that everyone’s talking about- The Pitt.

So The Pitt is a unique new medical drama set in the emergency room of the fictional Pittsburgh Trauma Medical Hospital (hence the name). Unlike conventional dramas however, the show happens in real time, with each episode focusing on one hour of the doctor’s shift. By the end of the season, there will have been 15 episodes documenting one single 15 hour shift in the E.R. The show has been praised for how realistic it is, not shying away from the squeamish reality of medicine like close up surgeries, gory injuries and uncovered birth scenes.

And before any of you guys ask, yes that is the guy from E.R.- Noah Wyle (a little bit typecasty bringing him back to lead another series set in an E.R. but everyone is raving about his performance!).

So to autism!

In episode 7, Terrance (played by autistic actor Coby Bird) comes into the E.R. with a sprained ankle. His autistic traits are immediately obvious to the trained eye (his lack of eye contact, constant questions, interrupting his doctor, monotone voice and language use) buuutttt his doctor does not pick up on any of it. Instead he leaves frustrated giving out that he couldn’t take a patient history from the constant questions. Thankfully another doctor’s spidey senses start to tingle, and she quickly spots his autism diagnosis in his medical history file in the hospitals computer.

Mel has an autistic twin sister (played by autistic actress Tal Anderson) and immediately volunteers to take over. She calmly enters the room, closes the doors to the noisy E.R., turns off the lights, and disables some alarms going off on the wall. This allowed her to have a calm conversation with Terrance to understand his concerns about his ankle and assess his injury. She quickly reassures him that his injury won’t keep him from a table tennis tournament, explains the scans that need to be performed, and even shows him a model of the bones in his foot to show what kinds of injury he could have.

Here’s a quick short from the episode:

This was such a heartwarming moment in the episode to see an autistic patient getting the proper care and understanding they need in a medical setting. Medical environments can be very overwhelming on a sensory level before you add in your fears, uncertainty and uncomfortable procedures. I’ve had minor meltdown’s every time I’ve had a cannula placed in my hand, but thankfully the nursing staff were aware of my diagnosis and made every effort to make things easier for me where others would have told me to grow up and stop crying. They got me to start talking about alpacas and my blood pressure dropped right back down to normal 🙃🦙

On another level, Mel herself has many neurodivergent traits, as is often the case with siblings of autists. Several members of the autistic community believe she is on the spectrum and feel seen by her portrayal. Taylor Dearden (daughter of Breaking Bad’s Bryan Cranston) is herself neurodivergent (she has ADHD) which she says has really helped her to shape the character of Mel. As Mel goes forward into the rest of this season and beyond (it’s already been renewed for season 2), I can’t wait to see what other neurodiversity story lines we may encounter.

Autistic patients come up a lot in medical dramas, but rarely are they treated with this level of understanding. It’s great to see The Pitt demonstrating the true reality of this experience. If medical drama’s are your jam, I highly recommend you check it out 🙂

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend!

Aoife

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