Category: Autism 101

Autism and Puberty

Greetings Earthlings! 🙂

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

Hope you enjoyed this post dear Earthlings!

Have a lovely Easter weekend! 🙂

Aoife

5

Autism and Epilepsy

Greetings Earthlings! 🙂

Following on from last weeks post about CBD/medical marijuana and autism, this week I’d like to take a closer look at epilepsy, a neurological condition that is often co-morbid with autism. In fact, some reports suggest that as many as half of people with autism also suffer with some form of epilepsy! 😲

So what exactly is epilepsy?

Epilepsy is a neurological condition caused by abnormal electrical activity along the neurons in the cortex of the brain. In the brain, neurons are usually activated in order along the nerve as messages travel from one point to another- in other words, only one nerve cell at a time is activated. Think of nerve cells like a chain of people passing a note along- only one person will hold the note at a given time. During an epileptic seizure however, the nerves fire excessively and abnormally all at the same time. The exact mechanism is unclear, but evidence suggests that changes in the membrane of nerve cells or dysfunction in inhibitory brain cells may cause symptoms.

Here’s a handy video from ‘The Doctors‘ that talks through some of the common types of seizures:

But how is it linked with autism?

Researchers are unclear as of yet if epilepsy is a consequence of autism or a contributory factor in developing it, however, both autism and epilepsy share common genetic roots. Some studies have found that there is a lot of overlap between the genes implicated in both conditions, where mutations in these genes (such as SCN2A and HNRNPU genes) give rise to symptoms.

The main theory behind their overlap is that they stem from similar biological mechanisms wherein both conditions are caused by alterations and imbalances in excitation and inhibition of nerve activity in the brain.

If you want to do some more reading about how epilepsy manifests in autism and how to manage it, here’s a useful link: https://www.epilepsy.ie/content/epilepsy-and-autism

873 Epilepsy Illustrations, Royalty-Free Vector Graphics & Clip Art - iStock

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend,

Aoife

1

Autism and Ageing

Greetings Earthlings! 🙂

As I am approaching a new decade in the coming days (eep!), this week I’d like to explore the topic of autism and ageing.

For the most part when talking or reading about autism, children with autism are the focus, but what happens when the child grows up? Autism is a lifelong condition, it doesn’t just magically go away once you’ve turned 18! Sadly, it is around this time that many services are taken away from autists and we “age out” of the system.

So what happens now? What do we know about ageing and autism?

As autism is still a relatively young diagnosis, there is limited data about about the impact ageing has on an autist. The first autists were diagnosed in the 1940’s, so the long term data is only now starting to emerge. So what does it indicate?

The data so far is a little bit mixed about outcomes for autistic adults. Some studies indicate that autism improves over time, but many of these have focused on outcomes for younger autists, all of whom were diagnosed and received interventions during their developing years.

Other studies indicate that autism in fact get’s worse with age where features such as communication, flexible thinking and social awkwardness become more severe over time. This study however focused purely on adults with autism, most of whom received their diagnoses later in life, so it’s hard to predict if their outcomes would have improved with age had they received support and useful interventions at an earlier age.

These studies also fail to take into the account the outcomes of the “lost generation” of autistic adults in the world, walking through life as I did, knowing something wasn’t quite right about me, but unable to put my finger on it.

Speaking from my own experience of autism over the last 30 years, my outcomes have improved dramatically over time. In particular, things have most improved in the years since receiving my diagnosis, as I now finally understand myself, and have been able to adjust my lifestyle accordingly 🙂

On a slightly more morbid note, recent studies have indicated that autists have a shorter life expectancy than neurotypicals (18 years younger!😱 ), as we are at higher risk for accidents, cancers, diabetes, cardiovascular disease and mental health issues!

However, the risk may be indirect correlating to our tendency towards maladaptive behaviours and lifestyles, so I wouldn’t worry too much about it if you’re keeping on top of your health and fitness 🙂

Finally, age has also been implicated as a factor in the risk of developing autism. Multiple studies have shown that there is a correlation between parental age and autistic risk i.e the older you are, the greater the risk that your child may be autistic.

I wouldn’t worry too much about this though- we’re not so bad 😛 🙃

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

1

Autism and Language Barriers

Greetings Earthlings! 🙂

This week I’d like to discuss the joys of navigating language barriers on the spectrum.

Language barriers can be hard enough to deal with at the best of times, but throw in the glorious social awkwardness and mortification that autism brings and you’re in for a real treat!

Over the years, I’ve visited many non-English speaking/non-tourist regions in Europe, and my encounters have been a right barrel of laughs (in hindsight- not so much at the time 😛 ) given that I have only a few remaining French phrases from my schooldays! There really is nothing quite like going to a pharmacist and trying to communicate the massive insect bite on your eye without words! 🙈

Granted, Google translate and similar services have made it considerably easier to communicate than it would have been 15 years ago, but even so, things can still get wildly lost in translation. I’ve found ordering food to be somewhat of an ordeal with language barriers (even with translate in hand), a task already made difficult in English by my various food aversions!

I once had an interesting experience in an Italian pizzeria while trying to order a portion of chips (as I don’t eat pizza). I looked up the translation with an accompanying picture, showed it to the server and waited for my food, delighted that I had successfully navigated the transaction without a word of Italian. When my food came out however…it was a pizza…with chips on top!? Talk about a crime against humanity! I tried to communicate that the order was wrong buuut I awkwardly got stuck with the pizza… and with every other restaurant closed for the afternoon, I had no choice but to pick what few chips I could off the top that were not contaminated by the cheese! 😛

Language barriers are a veritable nightmare- but here are a few tips for navigating this minefield:

Do your research– before heading on a trip, try to plan out the best places to eat, tourist attractions, shops etc. You can see menus ahead of time and translate them (as roaming charges can make the internet less accessible than it may be at home for Google Translate) or find English speaking restaurants to offset any awkward situations. Pro tip– go old school and download and print off maps for key sites/restaurants on your trip. If you find the Google Maps arrow as confusing as I do, this may be prove very useful!

Use Google Translate audio to text translation- this is a useful feature where you speak and the phone translates to the desired language, which can be really helpful when you’re in a flap. If it doesn’t work, you get the added bonus of a great laugh out of it’s misinterpretations! 😂

Request menus in your native tongue– a restaurant may not always have one, but there’s no harm in asking, even if you feel awkward doing so. Pro tip– just point at the menu item if you’re unsure of the translation. Don’t make a tit of yourself and risk ordering the wrong thing when you don’t have to 😉

Ask for help/don’t go anywhere without your translator– determined to be independent and not burden anyone, my pharmacy experience above would have been much easier if I had asked my translator friend to accompany me! 🙈

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

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Autism and Temperature

Greetings Earthlings! 🙂

With the summer drawing to a close, this week I’d like to talk about thermosensitivity and autism.

As I’ve discussed on multiple occasions, autists’ are very sensitive to sensory stimuli, so it should come as no surprise that autists have different reactions to temperature versus their neurotypical peers.

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In my experience, I have found that I can be sensitive to higher or lower than average temperatures. I’m a bit like Goldilocks- I don’t like to be too hot, don’t like to be too cold, but I do like a nice moderate temperature (which is why Ireland suits me so well I suppose!😂). If the temperature starts to drift in either direction away from my comfort zone, I tend to get quite irritable and my masking abilities are impacted by the distracting temperature change. I may have gotten some weird looks from some girls a few rows in front of me at a Paramore concert once as my voice started to get higher, shout-y and more strangled from the frustration of sitting beneath a freezing vent while waiting on the band 😬

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I’m also more likely to have a meltdown if other buttons are pushed while dealing with temperature fluctuations, particularly where hotter temperatures are concerned-needless to say, I’m not a fan of sun holidays and dread to think what menopause may bring for me in the future! 😛

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I’m even quite picky when it comes to the temperature of food, being unable to stomach some foods under certain temperatures. For example, I’m a real carnivore, but if the meat is cold I can’t stomach it; similarly, hot drinks are an uncomfortable sensory experience, so even though I like the taste of hot chocolate, I won’t drink it!
Like me, many autists are quite thermosensitive, and find fluctuations in their surrounding temperature to be an overwhelming experience. On the other hand, several autists have also reported temperature insensitivity or an indifference to thermal stimuli.

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So what has the science to say?

The literature is a little contradictory when it comes to thermosensitivity. A 2015 study found that children with autism had a lower perceptual threshold for detection of hot and cold temperatures, indicating decreased temperature sensitivity and perception in certain brain regions. This was thought to be related to cognitive impairments and deficits in attention, so it could be that some autists are more distracted by other stimuli to notice temperature fluctuations. However, a more recent 2019 study found that there appeared to be no differences in temperature perception between autists and neurotypicals, concluding that temperature perception was entirely individual to the autist- which makes a lot of sense given the vastness of the spectrum.

On another scientific note entirely, research suggests that autistic behaviours are positively impacted by elevated body temperature. Multiple studies have noted that when an autist has a fever, many of their negative behaviours (such as irritability, hyperactivity, repetitive behaviours etc.) improve, but return to normal post-recovery. The reason for this remains unclear, however, one such theory cites the impact of temperature on neural circuits where it can either enhance or suppress brain activity in certain regions. This seems quite likely given that autists brains have an excess number of brain connections and increased neurochemical activity compared with neurotypicals, factors which heavily contribute to autistic behaviours. Brain activity might also be impacted by certain chemicals produced by our immune system to fight infection during a fever.

Perhaps it might be worth exploring the severity of autism between autists who live in hotter or colder climates to see if an increase in surrounding temperature could help manage autistic symptoms.

All in all it would seem that temperature response, like autistic traits, is entirely individual to the autist 🙂

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

4

Autism and Weather

Greetings Earthlings! 🙂

This week, I’d like to delve into an somewhat unusual subject- how weather impacts people with autism.

I know what you’re thinking, she’s run out of things to say so she’s falling back on Ireland’s favourite topic of conversation 😛

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Joking aside, while this might seem like a silly topic, weather can have a surprisingly significant effect on autists both psychologically and physiologically. Coping with the sensory impact of extreme weather conditions, the lack of predictability and issues with change, and routine disruptions surrounding seasonal weather transitions can all be overwhelming. Something so simple as an unexpected shower or a really hot day could potentially trigger a meltdown (have certainly come to the brink myself when I’ve been overheated on occasion- although granted this was often coupled with hunger or exhaustion 😛 ).

Thankfully, a life spent living in the highly unpredictable Irish climate where one often experiences all four seasons in a single day has made me immune to most fluctuations, but for many others the weather poses daily challenges.

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Sensory issues aside, many studies have noted some behavioural changes in autists under certain weather conditions. Research has found that autists are particularly susceptible to drops in atmospheric/barometric pressure i.e. the weight of air pressing down on us from the earth’s atmosphere. When pressure is high, we have dry, sunny weather; when pressure is low, rain and dark clouds. This drop in pressure results in a drop in blood oxygen levels. Consequently, the body adjusts heart rate and blood pressure to adapt to these changes which can interfere with brain activity. This often leads to mood swings, increased impulsivity and autists are more likely to indulge in destructive behaviours (especially for those with ADHD).

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In addition to this, if you’re anything like me, drops in barometric pressure may also make you very sleepy and sluggish due to the fluctuations in brain oxygen levels (nice to know why taking naps has become somewhat of a pastime in recent weeks staring up at a perpetually wet and grey sky 😛 ).

There’s no clear reason why low pressure impacts autists more than neurotypicals, but given that our brains are wired differently, pressure related fluctuations in brain activity are bound to have more of an impact. Moreover, given the impact of deep pressure stimulation and it’s calming effect on the autistic nervous system, perhaps this could explain why our brains go a little bit crazy in response to drops in atmospheric pressure.

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

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Autism and Hair

Greetings Earthlings! 😀

This week, I’d like to talk about the topic of autism and hair. Don’t worry, this isn’t going to be a weird post about people with autism having an excessive amount of hair or something!😂

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Hair can however be a an issue for autists on a sensory level when it comes to getting a haircut and is also tied to many behavioural issues.

Thankfully in my case I have no issues with hair cuts (in fact I actively look forward to them!), however, for many autists, the simple act of sitting in the hairdressers chair can be a completely overwhelming experience. Sensitivities to touch can make a hair cut extremely difficult- hair washing and touching, head tilting and hair styling could be painful or overwhelming. Moreover, the noise of the scissors, clippers and styling equipment like hairdryers can equally trigger a meltdown. You can find some useful tips for navigating visits to the hairdressers here: https://www.autism.org.uk/about/family-life/everyday-life/hairdressers.aspx

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In terms of behaviours, trichotillomania (TTM) has been linked to autism. Trichotillomania is a hair pulling disorder marked by a compulsive urge to pull out your own hair, often resulting in noticeable baldness. The condition can occur in response to stress and anxiety where the pulling action provides a calming sensation. MRI studies have shown that people with trichotillomania have more grey matter in their brains. As MRI’s of autists brains have also shown increased grey matter, this could explain why autists can tend towards this type of behaviour. Treatments for this behaviour include CBT and in some cases the anti-depressant clomipramine. In addition to trichotillomania, some autists with pica eat their hair known as trichophagia (also known as Rapunzel syndrome).

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On a scientific level, hair has interestingly been used to identify autism in some patients! In a recent study, researchers noted that children with autism also had abnormal hair whorls (tufts of hair that were growing in the opposite direction to the rest) in addition to prominent foreheads and an asymmetrical face suggesting that these features could be used for diagnostic criteria. Makes me wonder about the shape of my own face/direction of my own hair growth! 😂

Hope you enjoyed this post!

Have a good weekend dear Earthlings! 🙂

Aoife

5

Late Autism Diagnosis

Greetings Earthlings! 😀

This week after reading that British comedian Johnathan Ross’s daughter received an autism diagnosis late in life, I thought I’d write about my own experience of receiving an autism diagnosis as an adult.

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As you may know from my blog intro, I was diagnosed with Asperger’s Syndrome a few weeks shy of my 24th birthday. With autism diagnoses on the rise in recent years, it seems hard to imagine that a person would not be diagnosed until their twenties, but this was my reality. As it turns out, I was far from alone in my predicament with such notable autists as Susan Boyle, Anne Hegerty, Dan Aykroyd and Gary Numan all receiving adult diagnoses.

So why are so many autists only being diagnosed as adults?

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Leading autism experts have described a “lost generation” of autists who grew up during a time where autism was poorly researched and understood. Many high functioning autists did not fit the criteria for classic autism, and as such slipped through the diagnostic radar. It is only in recent years following the introduction of the spectrum concept that many previously undiagnosed autists are finally getting the diagnosis they should have received decades previously. 

In my case, I was both academic and social in school, so no one really batted an eyelid or questioned that something was amiss. My meltdowns were put down to stress (you would not believe the amount of school reports to my parents that said I needed to chill!😂) or temper tantrums, or just plain being a drama queen- oh if my teachers/friends only knew that I wanted none of the attention that my meltdowns brought! 😛 It was only after I failed to grow out of my quirks in college and worsening social anxiety that my family sought to diagnose me (you can read the full story here).

In fact, statistically speaking, the vast majority of women with autism do not get their diagnosis until they are adults, often going unnoticed due to our ability to socially mask, or in some cases, misdiagnosed with conditions co-morbid with autism. Moreover, as I have discussed in numerous posts, women often present with completely different autistic traits to men, but these differences went unnoticed by the medical community for decades as the original descriptions of autism were based on a largely male cohort of patients.

So you’ve got your autism diagnosis, what happens now?

For many, the diagnosis comes as a relief. It feels as though you’ve got the final missing piece of a jigsaw puzzle, like you’re just seeing the full picture of yourself for the first time. However, it equally takes a while to get your head around it all, and the experience often leaves you with more questions than answers. You’re handed this life changing diagnosis, but realistically there are little to no supports available for autists over the age of 18 in most countries. So where does that leave you?

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Here are some tips that I found helpful for dealing with a late autism diagnosis:

Educate yourself- I’ve always had a thirst for knowledge, so whenever I don’t understand something I hit the books. Learning about autism was one of the cornerstones to helping me to better understand and embrace my diagnosis, allowing me to be a little kinder to myself in my symptomatic moments.

Check out some autism blogs/diagnosis stories- I found that reading the stories of other autists was quite comforting as I was coming to terms with my diagnosis. You’re not alone in this 🤗

Link up with local autism support groups/charities– there’s no better source of information and available supports than those who’ve gone through an autism diagnosis in your area. They will all have been through the same thing as you, whether as a recently diagnosed adult or as a parent to autistic child, and will be able to provide you with the best resources available in your locale.

Try CBT– as I’ve discussed in a previous post, CBT wasn’t really my thing for helping me manage my symptoms, but it was highly beneficial in those early few months after my diagnosis to have a professional there who knew about autism to talk things through and to help me to understand my behaviours better.

Talk about it with your friends and family– in many ways, an autism diagnosis is not a journey we walk alone; our friends and family walk it with us. They are on a journey to better understand you too and will want to be there to support you in every way you need.

At the end of the day, while it was not ideal receiving an adult diagnosis, the personal and mental benefits that I have attained in recent years have been completely worth it. I finally understand myself and feel comfortable in my own skin. At long last, I’m able to fully be me in all the weird and wonderful ways God made me to be 🙂

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Hope you enjoyed this post dear Earthlings! 🙂

Stay safe!

Aoife

1

Autism and closure

Greetings Earthlings! 🙂

This week I’d like to talk about a topic that’s often been an issue for me- closure. Autists crave closure and resolution in all situations, that black and white mindset where a beginning must have an ending. When we can’t get that closure, it’s like an itch you can’t scratch in your brain, always niggling away, sometimes for years.

I can’t keep track of the amount of incomplete tasks and unanswered questions that have haunted me over the years. For example, I could never just lose a game of solitaire, I would feel compelled to keep playing until I finished on a win. Similarly, I could never seem to abandon a TV series that was starting to go south, I would need to stick with it until it got the closure I needed (I stuck with Glee right til the end🙈)! The frustrated niggling can even go on for years.

As a teenager, I nearly drove myself demented trying to achieve 100% completion on Harry Potter and the Philosopher’s Stone on PS2. I tried every single possible thing I could, played the game in different ways, doubled up on collectibles, tried cheat discs, had several meltdowns in frustration, but nothing could ever move the needle beyond 88%. Nine years later, a post on an EA thread revealed there was a bug in the software and that there was a glitch you had to manipulate to get around it and my brain could finally rest 😌.

Luckily, it’s gotten a lot easier to let these things go as I’ve gotten older, but many autists struggle will be much greater. So is there any scientific reason why we crave closure?

I haven’t been able to find that much information on the subject (as shutdowns keeps coming up when I try to investigate for some reason🤷‍♀️), but one study has correlated the need for closure to cognitive flexibility, something that autists have great difficulty with.

Cognitive what now?

Cognitive flexibility is the ability to adjust your thinking and adapt to change in unexpected challenges and situations. Imaging studies of the brain have shown that people who have a strong need for closure tend to be cognitively inflexible caused by reduced connectivity between the brain regions involved in adaptation to behavioural conflict during tasks that need cognitive flexibility. In other words- we’re hard wired to need closure! 🧠

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

0

Autism and Self Injurious Behaviors (SIBs)

Greetings Earthlings! 🙂

This week I’d like to discuss an issue that impacts roughly half of all autists at some point in their life- self injurious behaviours or SIBs.

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So what are SIBs?

Self-injurious behaviours are simply behaviours where a person physically harms themselves. This can manifest as self biting, hair pulling, skin picking, hitting, head banging (not the good kind 🎸), cutting etc.

So what triggers this sort of behaviour in autists?

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Research suggests that there are a number of potential physiological and psychological reasons for self injury:

Biochemical factors- Some studies have indicated that neurotransmitters such as dopamine and serotonin may be associated with self injury. This may be particularly relevant given that these neurotransmitters are often dysregulated in autism which may predispose us to such behaviours.

Stimulation– Like stimming, some research suggests that SIB’s may be a repetitive behaviour in response to a lack of or an increase in sensory stimulation. Some autists may self harm to increase their alertness in times of low stimulation; other’s my harm in response to stress or anxiety to dampen their emotions.

Pain- Ironically, SIBs can be a response to pain as a means of reducing it. Beta endorphins (opiate like substances in the brain) may be released following self injury which can dampen the pain response. Moreover, self injury may act as a diversion from the pain that an autist may be experiencing in another region of the body, or in response to a sensory stimulus that causes pain (e.g the noise of a fire alarm may register as painful to an autist).

Communication and Frustration– Some autists may be unable to communicate an emotion that they are experiencing and may resort to SIB’s out of frustration or in a non-verbal attempt to communicate that something is wrong, boredom, excitement etc.

Control- As in the case of eating disorders, self harming may provide an autist with a sense of control when life spins out of it.

 

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SIB’s can be deeply distressing for a friend or parent to witness, but when mild, they are often not cause for concern. If these behaviours are escalating however, there are a number of interventions such as medications, CBT, autism support dogs (I’ve seen amazing videos of dogs calming down autists/using their paws to intervene and stop self hitting) and encouraging replacement behaviours such as wearing rubber bracelets and necklaces to divert self biting and skin picking impulses.

Hope you enjoyed this post dear Earthlings! 😀

Enjoy the weekend!

Aoife

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