Autism in ‘Not Dead Yet’

Greetings Earthlings! 🙂

This week I’d like to talk about an autistic character in the ABC sitcom ‘Not Dead Yet‘ starring Gina Rodriguez of ‘Jane the Virgin‘ fame.

So what’s the series about?

In a nutshell, Nell is an out of work journalist trying to get back in the game after leaving her job 5 years ago to move to London with her then boyfriend. She returns to the States with her tail between her legs, taking a job writing obituaries for her former employers. Things start to get interesting however, when Nell starts to see the ghosts of her subjects!

You can check out a trailer for the series here:

So back to autism.

Nell’s room mate Edward is on the autistic spectrum, played by autistic actor Rick Glassman. A nerdy, brutally honest, passionate environmental lawyer, Edward needs strict routines like the majority of autists, but for the most part he is a “normal” functioning member of society.

You can see a clip here where he opens up to Nell about his diagnosis here:

One of the interesting things about the character of Edward is that the casting director sent out a casting call for neurodivergent or autistic actors. The character wasn’t necessarily written as autistic, but they were open to making Edward autistic as they wanted to get extra ideas of people who aren’t normally represented- a very positive move for the entertainment industry. The writers also hired autism consultant David Finch to ensure that they were accurately depicting the day to day nuances of living as an autistic adult, something that really comes across in the series.

The show is quite refreshing as Edward is used as comic relief but not in the way you would expect. So often the autist is the butt of the joke in comedic TV shows, but in ‘Not Dead Yet‘, Edward flips the script and makes fun of everyone else with his neurodivergent asides and unfiltered comments. One of the things that I really connected with however was how the writers handled masking. When Edward’s girlfriend is in town, he takes on a completely different persona. He hides his nerdy toys, pretends to be spontaneous and nonchalant- the complete antithesis of the Edward we had seen thus far. Thankfully, Nell, despite preferring many of his false traits, encourages him to drop his mask and be himself which you can see in the clip below:

It’s really heartening to see this scene as so often autists are encouraged to mask to fit in, often at the loss of self. I spent much of my teenage years masking, often suppressing my true interests and quirks to fit in with my peer group. I feigned interest in girly things like pop bands and trashy TV shows just to have things to talk about, when what I really wanted was to talk gaming and rock n’ roll! It was only after I went to college and began to embrace my quirks and just be me that I made true friends like Edward has in Nell.

I highly recommend watching this series (it’s currently available on Disney +) as it’s a quirky easy watch with a lot of heart.

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

Autism and Contraception

Greetings Earthlings! 🙂

This week I’d like to talk about a rarely discussed topic when it comes to autism- contraception!

When it comes to autism, the narrative doesn’t tend to discuss sex and relationships due to the archaic perceived notion that most of us are asexual.

Newsflash- autistic people have sex! As such, it’s important to discuss the topic of contraception.

The use of contraception is entirely individual, but for autists there may be additional sensory issues that may influence their decisions. Texture and smell may be issues for latex products, contraceptive patches may aggravate skin sensitivities, and contraceptive injections and implants may freak an autist out (don’t get me started on how much I shudder every time a friend has shown me the contraceptive bar in their arm!😖).

Hormonal contraceptives on the other hand may negatively impact an autists mental state and behaviours. There are no studies on the impact that hormonal contraceptives may have on autists, but as discussed in my previous posts about the impact of hormonal fluctuations during puberty, menopause and menstruation, it’s quite likely that behaviours and mental health could be impacted by their use. I’ve seen many neurotypical friends get knocked about by hormonal contraception, so I can only imagine how much worse these side effects could be for an autist. Some autists have reported that their anxiety issues increased significantly when on certain contraceptive drugs, finding that their panic attacks completely disappeared after switching to a different drug. In contrast, others have found that taking oral contraceptives has improved their mental health as it has made sensory issues and pain around their periods easier to manage, particularly contraceptives that prevent periods. Studies have also found that oral contraceptives may be useful to reduce pica behaviours in autists.

Researchers have also made an interesting connection between hormonal contraceptive use and autism rates. In 2014 a hypothesis was proposed that the increase in autism rates over the last 60 years correlates to the increased use of hormonal contraceptives.

Yep- they are suggesting that contraception may contribute to the development of autism!

The hypothesis suggests that hormonal contraception alone would not cause autism, but a ‘double hit’ mechanism of contraceptive exposure in tandem with other environmental and genetic factors may increase the risk. It’s thought that when an egg is exposed to artificial hormones in the ovary it can cause damage to the egg increasing the autism risk. Hormonal contraceptives work by preventing the release of an egg, and as such, the retention of eggs in the ovaries could be exposing them to these hormones for prolonged periods of time with negative consequences. There are multiple studies on how prenatal exposure to testosterone increases autism risk, so it’s not implausible that the same could be said for other hormones. Progestin (artificial progesterone used for contraception) in particular has been linked to the regulation of brain activity and impaired cognitive responses during foetal development, with animal studies showing autism-like behaviour after prenatal exposure to the synthetic hormone. Much research is needed to confirm that the rise in hormonal contraception is indeed contributing to the increase in autism rates, but it’s a very interesting hypothesis!

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

Autism-Headaches & Migraines

Greetings Earthlings! 🙂

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.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

Autism in ‘Freya Harte is not a Puzzle’

Greetings Earthlings! 🙂

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.

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

Autism in Wayne’s World?

Greetings Earthlings! 🙂

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.

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

Autism and Daydreaming

Greetings Earthlings! 🙂

In today’s post, I’m going to discuss the subject of daydreaming (or as my sister likes to call it “staring into the abyss”) and autism.

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*Cue six year old Aoife singing the Monkees ‘Daydream Believer‘ at the top of her lungs!*

Image result for daydream believer gif

All of us daydream at some point or other in our lives, but according to researchers, autists daydream differently to others. When we daydream during times of rest, certain regions of the brain (known collectively as the default mode network) are activated to help us reflect and process emotions. However in the autistic brain, it appears that activity in these daydreaming regions is dampened due to lower levels of brain connectivity. As daydreaming is an essential component for self reflection, researchers believe that autists struggle to create a “normal” internal picture of themselves and others which could be linked to social issues often experienced in autism.

On the other hand, autism and ADHD have also been linked to maladaptive daydreaming. First described in 2002, maladaptive daydreaming is a mental health issues where someone daydreams excessively, sometimes even for hours at a time. People who tend to daydream like this conjure extremely vivid and detailed daydreams, often developed as a coping mechanism or a form of escapism. There is limited research on this topic as the condition has not been officially recognized yet, but some estimate it to effect as many as 20% of those with ADHD which often overlaps with autism. It is thought to be a compulsive issue, which given the issues of impulsivity and autism could explain the link.

In my own life, I’m a terrible woman for daydreaming. My mind is constantly drifting in and out of focus to daydream about potential future scenarios or to create elaborate fantasies to escape from my problems. There were certainly periods during more turbulent times where one might consider my daydreaming to have been maladaptive. If I’m being honest though, I think I tend to daydream more out of boredom than anything else- I just fill my head with all these interesting scenarios to keep my brain stimulated when I’m not doing much else with my time 🤣

So who knows- maybe daydreaming is a spectrum within the spectrum! 🤷‍♂️

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

Autism and Rejection Sensitive Dysphoria (RSD)

Greetings Earthlings! 🙂

This week I’d like to talk about another co-morbid condition with autism and ADHD– rejection sensitive dysphoria (RSD).

So what exactly is RSD?

RSD is an intense or overwhelming emotional sensitivity to rejection and criticism (both perceived and real). This can cause intense emotional pain that can be difficult to bear.

Looking back over my childhood, I really struggled with RSD. Whilst I am well versed in the art of rejection now that I’m in my thirties, growing up as an undiagnosed autist did not make for an easy ride. Even the slightest rejections could trigger meltdowns as my brain struggled to process the situation. Something as simple as someone not immediately having time for me, a passing comment in a raised tone, even constructive criticism could set me off. Once at a family event in a hotel I had a bad meltdown because my uncle was short with me for requesting a different flavour of ice-cream to the one that I had been given. Cue me hiding out in the toilets followed by 3 hours doodling in the back of the car instead of joining the party from my RSD over-reaction (I was 13 by the way! 🙈). I can’t even blame sensory issues for that over-reaction, I just didn’t feel like eating raspberry ripple that day! 😂

So is there any scientific reason for RSD?

RSD, like maladaptive daydreaming, is not a clinical diagnosis so it’s hard to underpin how it works. There isn’t exactly a scientific way to measure rejection. However, as it has been observed in patients with autism and ADHD, psychologists believe that it is caused by alterations in brain structure in the regions that regulate and process emotions such as the frontal lobe and the amygdala- both regions where structural changes have been linked to autistic symptoms.

As discussed previously, autists often have a warped sense of perception and logic so it can be very easy to misconstrue and over-react to rejection. The tendency towards perfectionism and black and white thinking in particular can make us far more susceptible to such negative reactions. For example, if someone told me that they didn’t like my shoes, even though it’s only one component of my outfit and just a passing comment, my younger self would have spiraled.

Life is often all or nothing for an autist, so if someone rejects one small thing, it may skew our entire perception of ourselves.

You don’t like my shoes = you don’t like me.

The shoes are wrong, I chose the shoes, the shoes are on my body, therefore, I’m wrong. The world is black and white so if I’m wearing the wrong shoes, everything else about me has to be wrong by extension- you’re either wrong or right, you can’t be both.

RSV can be pretty exhausting for an autist, so understanding of our responses to rejection is vital to supporting us. If you’re struggling with RSV, cognitive behavioural therapy (CBT) can help you learn how to better process feelings of rejection, but medication such as ADHD drugs and anti-depressants can be useful for more severe cases.

Hope you enjoyed this post dear earthlings!

Have a lovely weekend! 🙂

Aoife

Autism and the Immune System

Greetings Earthlings! 🙂

This week I’d like to discuss how the immune system can contribute to autism through inflammation and autoimmune diseases.

Really Aoife? I thought the immune system was supposed to protect me from illness and repair the body after injuries?

Yes- ordinarily the immune system functions to protect and heal us from injury and disease, however, dysfunctions in the immune system can cause serious health issues. There are three main categories of immune dysfunction:

  • Immunodeficiency– where one or more parts of the immune system are inactive
  • Autoimmunity– where an overactive immune system is unable to tell the difference between the cells of the body and foreign invaders like bacteria and viruses. This leads to autoimmune disease (such as rheumatoid arthritis) where the immune system attacks healthy cells causing disease
  • Hypersensitivity– similar to autoimmunity where the immune system triggers an undesirable allergic reaction (like asthma and anaphylaxis) which attacks the cells of the body

So how does the immune system relate to autism?

A number have studies have highlighted that abnormal immune system activation could be playing a role in the development of autism. Inflammation is the body’s natural defense against foreign invaders. When the body is under attack from an infection for example, it starts to release pro-inflammatory chemicals called cytokines which triggers inflammation to start the battle. Once the threat has passed, an anti-inflammatory response begins to cool the body back down. This heating/cooling cycle doesn’t always run smoothly for some people leading to persistent inflammation which over time can cause damage to the body. Studies have shown that autists frequently show signs of widespread inflammation, often having high levels of pro-inflammatory chemicals. Postmortem brain samples in particular have shown evidence of enhanced immune activity suggesting that an overactive immune system may be contributing to the autistic brain.

There are also some studies that suggest autists are producing antibodies that attack their own brains- I know I’m my own worst enemy, but that is next level! 😛

Researchers believe that abnormal immune activity during pregnancy in particular could be a contributory factor in autism. Studies have noted that many women that have an autoimmune disease (such as lupus, psoriasis, diabetes etc.) also have a child with autism leading them to this potential link. It’s thought that pregnant women with autoimmune diseases produce antibodies that attack the baby’s brain as the immune system falsely identifies the baby as a foreign invader which can potentially cause autism and ADHD. Moreover, inflammation during pregnancy is also thought to interfere with the development of folds in the brain.

But is there any explanation as to why immune activity is abnormal in autism?

As with most things linked to autism, it’s likely that this activity has a genetic source. A number of the genes that have been linked to autism are also involved with the immune system, so mutations in these genes could explain the correlation.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

Autism & Joint Hypermobility

Greetings Earthlings! 🙂

This week I’d like to discuss another lesser known comorbidity with autism- joint hypermobility.

So what exactly is joint hypermobility?

It’s a pretty self-explanatory condition where joints have a larger range of motion than normal, more commonly referred to as being “double jointed”. The tissue connecting joints is much more stretchy so joints are highly flexible. This is usually caused by weak collagen- the main protein that makes up connective tissues that provide support in the body such as muscles, tendons, ligaments, bone etc.

Lots of people have hypermobile joints, but some may have hypermobility disorders such as Ehlers-Danlos Syndrome (EDS) which negatively effects connective tissues. There are 13 types of EDS, each with different symptoms, but the most common type is hypermobile EDS with symptoms including painful and clicking joints, excessive bruising, digestive issues, unstable joints and thin stretchy skin. 8% of autists are estimated to have EDS, with even more estimated to have other types of hypermobility disorders. As both of these conditions are assessed by different types of doctors, it’s possible the co-occurrence rate is much higher than we realise.

In my own experience, I’ve always known that I was highly flexible, but I’d never considered that this might not be “normal”. My English teacher once looked at me recoiling in horror as I stared back confused and oblivious. Apparently my thumbs were freaking him out as I’m able to bend them backwards- something that I thought everyone was able to do!

Here’s a closer illustration for context:

I haven’t thought much of my joints for years, but recently both my physiotherapist and chiropractor described them as hypermobile. This seemingly has contributed to many injuries over the years- I’m currently dealing with a “wandering kneecap” among other things 😂. Lo and behold, a few weeks later I came across a study linking hypermobility to ASD’s and ADHD!

So how are the conditions linked?

Again, as with most aspects of the spectrum the link remains unclear, however, it does appear to be genetic. Hypermobility disorders are highly hereditary with 20% of mothers experiencing hypermobility reporting that they have an autistic child. A recent study compared the genes known to be related to hypermobility and autism and found that there was a lot of overlap between these genes and the pathways they interact with which likely explains why the two conditions are co-morbid. Immune system dysregulation has also been linked to both conditions, particularly during pregnancy (I will discuss the immune link to autism in more detail in a later post).

So there you have it, lot’s of autists are highly flexible- which is kind of ironic given how inflexible we can be in other areas of our lives 😜🤣

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

Autism and Clinical Research/Trials

Greetings Earthlings! 🙂

This week I’d like to discuss a little more unusual- the participation of autists in clinical research and trials.

Now before we get into this post, I’d like to preface things by reiterating my stance from previous posts that autism is not something to be “cured”, but that being said, pharmaceutical interventions can be useful in the treatment of conditions that are co-morbid with autism such as OCD, bipolar disorder, ADHD, GI issues etc., not to mention every day illness, so research participation can be highly beneficial for autists.

So what exactly is clinical research and why do we need it?

In a nutshell, clinical research is a branch of medicine that determines the safety and efficacy of treatments intended for use in humans. It differs from lab based research in that human volunteers are involved to advance our knowledge of health and medicine- most of the studies that I refer to in my posts would be classified under clinical research. Research is split into two branches:

  • Observational studies -where groups are observed/monitored to gather health data
  • Clinical trials/interventional studies– where a treatment/drug is administered to a group of volunteers to assess its safety and efficacy. Depending on the trial phase the volunteers may be healthy or target patients for the drug/treatment

Human studies are the only way to truly determine drug safety and efficacy prior to marketing, so clinical research is essential to the advancement of medicine. Diversity in clinical investigations is particularly important as it allows us to better predict potential patient outcomes after treatment roll out. Historically speaking, trials were not particularly diverse and didn’t always cater to target patients. Many trials were subject to gender bias with males dominating the data- there were even breast and uterine cancer studies conducted exclusively on males! We now understand the importance of enrolling biologically diverse groups, hence autists participation in clinical research could be greatly beneficial.

But clinical research can be daunting for anxious autists, not just at the prospect of poor outcomes and side effects, but there are many barriers that may make participation difficult for an autist. There are often a lot of sensory challenges in the clinical setting with bright fluorescent lights, strong smells from medicines and cleaning products, alarms and noises from medical devices etc. which would need to be addressed by clinical staff when enrolling autists in studies. Co-morbid ADHD can also be an issue as autists may find it difficult to pay attention during visits and may become distracted by their surroundings making it difficult to collect data. Similarly ADHD can also impact patients motivation and interest in the trial which can make it tougher to get them to stick with it. Autists also often have difficulty with taking medicines on a sensory level so non-compliance with any treatment regimes will not generate usable data for investigators.

Many of these barriers can be overcome through environmental modifications, frequent breaks and adequate educational and emotional support during research studies. If clinicians and autism advocates work together to make research more accessible for autists, who knows what good may come in future clinical investigations!

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

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