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

Autism and Seasonal Affective Disorder (SAD)

Greetings Earthlings! 🙂

Leading on from my previous post about autism and mental health, this week I’d like to discuss the issue of Seasonal Affective Disorder (SAD) for autists.

Thankfully, I have never had any issues with SAD personally, however many other autists struggle.

So what exactly is SAD?

SAD, also known as ‘Seasonal’ or ‘Winter’ depression, is a form of depression that is triggered by seasonal changes. Onset is usually triggered in the autumn/winter months, however, it has also been known to occur during the brighter months in rarer cases. Depressive symptoms tend to start out mild and progressively worsen as the days get shorter, beginning to level out and disappear with the return of the spring/summer season. The symptoms are similar to clinical depression, the primary difference being the seasonal nature. For autists who experience SAD, the condition can be compounded by communication difficulties and other co-morbid mental health issues.

But is there a scientific link with autism?

While there is no official link to autism, many autists report issues with SAD. Melatonin, the hormone that regulates sleep, is generally thought to be the main driver of SAD. The release of melatonin is mediated by exposure to light, so lack of sunlight during the winter months can cause the body to produce more melatonin than is needed, causing you to feel sleepy and sluggish. Light therapy is currently the recommended treatment for SAD to better manage melatonin levels. Interestingly, melatonin levels are dysregulated in autists which could explain why they may be more likely to be impacted by seasonal changes in melatonin levels.

Other studies have linked SAD to serotonin as there can be seasonal variations in serotonin levels. In addition, serotonin is at the heart of the chemical imbalance theory of depression and levels are often dysregulated in autists, which could explain why there might be a link. Buuuutttt a lot of these research papers come from the 1990s. In recent years, the chemical imbalance theory of depression has been disproved, which could also negate this theory for SAD.

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

Autism and Abuse

Greetings Earthlings! 🙂

Leading on from previous post about bullying and autism, this week I’d like to explore the issue of autism and abuse.

Current research suggests that children with autism may be up to three times as likely to be the target of physical, emotional or sexual abuse than their neurotypical peers. Autistic women are particularly vulnerable as a recent French study estimates that as many as 9 out of 10 autistic women have experienced sexual violence and a further 60% physical violence.

But why are autists more likely to be victims of abuse?

Sadly, the nail that sticks out is the one that gets hammered down. Experts have suggested that stigma is one of the main reasons that autists are such prime targets as we are often stigmatised by negative perceptions of autism due to a lack of education about the condition. As such, autists may be abused for falling short of societal expectations in many aspects of their lives.

In addition, abuse can often go undetected as autists don’t always know how to communicate what’s going on and don’t always understand what constitutes “normal” social behaviours. When you don’t always know what’s “normal”, abusive behaviours can easily become accepted and normalised. Moreover, many of the classic childhood behavioural signs of trauma and PTSD resemble common symptoms of autism, making it even harder to pinpoint if something is wrong.

On the other hand, some studies have also controversially suggested that autists may also be more likely to be offenders as well as the victims of abuse. Unfiltered speech, lashing out verbally or physically during meltdowns, acting on impulse, lack of understanding about romantic behaviours could all lead to inadvertently abusive behaviour.

In my own experience, I once found myself accidentally branded a bully one day in school. A younger student tearfully came into our classroom and fingered me for shoving her into the side of the shed at lunchtime during a game- something that I had absolutely no recollection of (which is saying something as I have a very good memory). I must have accidentally hit into her during the game we were playing, as my spatial awareness is terrible, and never thought anything else of it. Since my diagnosis, I’ve often looked back on my life and wondered would others have considered my behaviours bullying at times? To me, the thought of ever putting anyone through the kind of bullying I endured is sickening, but that’s not to say that some of my unfiltered moments did not cause offence.

So how can we support autists in abusive situations?

This is where things get tricky. Recent reports from the UK claim that there is a serious lack of appropriate services to help autists who may be victims of abuse. Most professionals from psychologists to police do not receive adequate training in how to deal with an autists unique perception of the world. Autists have different sensory needs, different ways of communicating, or may even require you to speak in a different way, so experts need to be flexible.

Based on this, it seems clear that proper education is paramount at all levels. Experts need to be properly educated on how to specifically help autists through their experiences of abuse, taking our neurodiversity into account. Moreover, as prevention is better than cure, we need to properly educate autists about abuse and the different ways it can manifest. This is particularly important when it comes to sexual abuse. There is oftentimes an assumption of asexuality when it comes to autists, but the vast majority of us have normal romantic and sexual desires. As such, there may be a lack of education surrounding this topic which can lead to abuse. Experts say that autistic girls tend to learn about relationships from books and rom coms, whereas autistic boys tend to learn from porn- neither “source” giving true insight into how relationships work in the real world. Proper education surrounding romantic and sexual behaviours is warranted to both guard against vulnerability to abuse and the likelihood of committing an offence.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

Autism in Girl Meets World

Greetings Earthlings! 🙂

This week I’d like to discuss the depiction of autism in the Disney + coming of age comedy series ‘Girl Meets World‘ (the spin-off/sequel to the 90’s classic ‘Boy Meets World‘) in an episode from 2015 that has been doing the rounds on Tik Tok in recent months.

The clip from the series depicts the shows protagonist Riley and her group of friends finding out that their best friend Farkle may be on the autistic spectrum, specifically he may have Asperger’s syndrome. Farkle was recently given an aptitude test that affirmed, what he always knew, that he is a genius. Following additional tests to confirm his IQ, it was decided that he should also be tested for autism as he presents with many traits such as touch aversion, social awkwardness, specialist interests etc. (we won’t get into how they automatically jumped to spectrum from a genius test 🙄).

Now while it’s great that such an important topic is getting airtime on a channel as big as Disney, the clip has been viewed quite negatively by the autistic community. After telling his friends that he may have autism, their reactions are somewhat overdramatic. Riley’s friend Maya automatically jumps off the couch and vehemently proclaims “You don’t!”, while Riley similarly jumps up saying “Let’s go tell them you don’t!” Moreover, Riley and Farkle’s parent’s set quite a serious and sombre tone in the room about his potential diagnosis which doesn’t help the vibe. Although not included in the original viral clip, the gang later study up on Asperger’s and every time that Farkle agrees with a trait and gives an example, Maya grabs him and tells him to “Stop doing that! He’s going to stop doing that!” Needless to say, autists everywhere have been highly offended by the reactions as they are treating autism like a terminal disease! This has even made many afraid to disclose their diagnosis to their friends based on this reaction (although I would argue that this is an overreaction as my friends have been nothing but accepting and supportive when I have disclosed my diagnosis).

The clip has since been edited/removed, but you can watch the episode in full on Disney + (Season 2 Episode 15). Here’s a clip instead introducing us to Farkle:

Ultimately, it turns out that Farkle isn’t on the spectrum, so there was a whole lot of hullabaloo about nothing, BUT it is revealed later on in the episode that Farkle’s female nemesis (and later girlfriend) Smackle was diagnosed with Asperger’s at 5 years old. She like Farkle is also a genius (whhhhyyy must we perpetuate these stereotypes!!!), with an aversion to hugs, difficulty reading social cues and struggles to make friends. Her depiction is very stereotypical Aspergers male and doesn’t tie in with how most women with autism actually present- although it is nice to see another woman on screen where autistic men are the media majority.

The episode ends with everyone accepting Smackle and showing her that none of them in the group identify as “normal” nor aspire to be “normal”, ending everything on a slightly better note of acceptance- something that most of the online chatter didn’t delve into following the disastrous reaction to Farkle’s potential diagnosis.

All in all, this type of representation is not great, but at least the tone does even out by the end of the episode. It’s a very stereotyped depiction and the initial reaction of the gang can be quite triggering for some autists, but I’ve definitely seen way worse handling of this issue. That being said, this episode does come from 2015 and media depictions have come a long way since then, with many shifting to cast autistic actors for accurate on screen portrayals- like the character of Quinni in Heartbreak High. As with history, we should learn from the past and look to examples like this as ‘what not to do’ so that media portrayals going forward will be far more reflective of the real autistic experience.

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

Happy New Year 2023!

Greetings Earthlings! 🙂

Happy New Year!! 🥳🥳🥳🥳🥳🥳🥳

Apologies for my late seasonal greetings, but I’d just like to take this opportunity to wish all of my readers every blessing for 2023 🙂

This week marks 6 whole years of my blog (where on earth has the time gone?! :O ) so it’s time for a bit of an appreciation post!

Thank you all so much for your continued support and readership this past year. 2022 saw 73,000 of you guys stop by to read my posts- a new record for this site! I am truly honoured and humbled by your kind words every year about how much this blog means to you guys. I could do none of this without your love and support ❤

Here’s to 2023- there’s lot’s more to come!

Have a lovely weekend dear Earthlings! 🙂

Aoife

Autism and Auditory Processing Disorder (APD)

Greetings Earthlings! 🙂

Leading on from my previous post about autism and sound sensitivity, this week I’d like to take a look at auditory processing disorder or APD.

So what exactly is APD?

APD, also known as central auditory processing disorder (CAPD), is a condition where a person doesn’t fully process the sounds they are hearing. There is generally nothing wrong with your hearing ability, but a neurological issue in interpreting the meaning of that sound. People with APD often struggle to understand spoken instructions, sentences where they’ve missed words, thick accents, words that sound similar, and understanding conversations that place in noisy environments. For example, if someone said the word ‘dog’, you would hear the word perfectly, but might struggle to retrieve the meaning of the word.

So how is APD linked to autism?

APD’s are very common in autists, but the link is unclear. One of the leading theories however is that the hippocampus is immature and underdeveloped in the autistic brain. This part of the brain is responsible for processing auditory and other sensory information, so if the region is not properly developed, autists will struggle to process sensory input like sound. Other research suggests that autists are hearing and processing sound properly, however, they are processing this information at a slower level than their peers due to delayed development of the auditory cortex in the brain.

An interesting behavioural study proposed that autists are actually processing sounds correctly, however, they are choosing to not pay attention to certain sounds or speech due to variations in their attention span.

Some researchers have also linked difficulties in auditory processing to impairment and delays in language development in autism as the ability to process sound efficiently is critical to language formation.

To help autists struggling with APD to better process sound, it’s recommended that you:

  • Try to talk face to face
  • Avoid covering your face when speaking
  • Repeat or rephrase words if they are struggling
  • Reduce background noise in the environment
  • Avoid long and complicated sentences
  • Try not to speak too fast or too slow
  • Use pictures and text for younger autists

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

Autism and Sensory Socks

Greetings Earthlings! 🙂

This week I’d like to discuss a rather unusual item that can be used for management of autism- the sensory sock! Here’s a picture of what it looks like:

So what exactly is it?

The sensory sock (also known as the body sock) is a stretchy Lycra suit of sorts that is designed to provide a unique, fun and intense sensory experience for autists. Once inside, the suit provides tactile and deep pressure stimulation to the wearer while increasing spatial awareness and improving balance. These sensory inputs can be quite calming for autists which can help us to regulate sensory issues. This can also be used for neurotypical kids to explore their environment and encourage creative movement.

But how exactly does it work?

The stretchy Lycra provides resistance to the wearer as they move around applying deep pressure to the joints which, as previously explained in my post about weighted blankets, causes the release of calming neurotransmitters in the brain, reducing the levels of excitatory neurotransmitters which are elevated in the autistic brain. The enclosed space can help the wearer feel calm and safe, allowing them to regulate their emotions- many autists find enclosed spaces to be particularly therapeutic, so having a portable space like this can be really handy!

I came across the video below of someone trying out a sensory sock online, so naturally I had to get one to try it out!

So how did I get on?

Well…it was…an experience! 😛 While I won’t terrify you with the images of me waddling around my kitchen like a deformed bright green T-Rex, the sock was certainly worth the laugh! My first impressions however, were not the most positive from a sensory perspective. I didn’t really like the smell or the feeling of my arms being so constricted, and found the velcro opening at the front quite distracting as it was reluctant to stay shut (sensory socks don’t seem to be designed for adult women of a certain chest size 🙈). I did try the sock again a week later, but this time I chose to lie down while wearing it which proved to be a much more positive experience. This time I felt the relaxing deep pressure around my limbs that was reminiscent of my weighted blanket. Despite my best efforts, I wasn’t able to bring myself to spend more than a couple of seconds with my head inside the suit. It either wouldn’t stay closed or the smell and claustrophobia got to me so I wasn’t really able to assess that feature.

All in all, I can certainly see the benefits this sensory sock might have for younger autists, but personally I think I’ll stick with my weighted blanket for now.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

Autism and Gene Mutation

Greetings Earthlings! 🙂

This week I’d like to discuss the influence of gene mutations in the development of autism.

So what exactly are gene mutations?

Gene mutations occur when the usual, expected gene structure changes to form a new gene variant that can be passed on to future generations. Mutations may include deletions (where part of the gene sequence is removed), insertions (where new information is added to the gene sequence), and rearrangements (where the gene sequence is reordered).

Autism is heavily influenced by our genes, with estimates suggesting that genetic factors contribute to as much as 40-80% of the risk of developing an ASD. Mutations in over 1000 genes have been linked to autism, but as of yet no single “autism gene” has been identified. To date, only 30% of autism cases can be explained by known gene mutations. Research has thus far explored a mere 2% of the genome for candidate genes, so there may yet be a common gene somewhere in the remaining 98%. The current thinking is that multiple small gene mutations interact to cause autism.

The following are some examples of candidate genes that have been linked to autism development:

  • ACTL6B– this gene is involved in the expression and control of many other genes in brain cells, where mutations to ACTL6B can alter these other genes to trigger autistic traits
  • Shank 3- is a leading autism candidate gene where mutations in this gene are found in 1-2% of autists. This gene expresses a protein that is essential to the proper functioning of the synapse (the junction) between neurons- a region where many autistic traits are linked to
  • PAX5- this gene encodes a factor that is important to the development of the brain during the embryonic phase of pregnancy, where mutations in the gene can lead to alterations in the brain that can contribute to neurodevelopmental disorders like autism

As interesting as genetic mutation is, it is largely considered to be a negative thing. Gene mutations are viewed as aberrant, something that many would seek to edit or correct- the entire premise of gene therapy. But while most are familiar with the concept of negative gene mutations, there are many gene mutations out there that are neutral or beneficial. For example, some people have a rare gene mutation called CCR5-delta 32 that makes you resistant to HIV infection, carriers for the gene mutation that causes sickle cell disease are resistant to malaria, and even rare mutations in the LRP5 gene can increase bone density to make your bones more resistant to breakage and age related degeneration.

In my own experience, I have a rare gene mutation that causes sectoral heterochromia- i.e. a section of my right eye is a different colour to my left eye. This mutation occurs in less than 1% of the population- made even rarer by the fact that my eyes are green (only 2% of people have green eyes). This is a neutral mutation- it’s a mutation, but not one that has any impact other than my friends find it really cool 😎

Genetic mutation is central to evolution, it’s how we grow and adapt; without it the human race would not exist. With this in mind, perhaps we need to refocus our perception of autism. We see autism genes as aberrant, but don’t consider the possibility that some of these mutations may be positive. Mutations that allow us to see the world differently, can make us think faster, have increased memory retention, give us unique creative and academic abilities etc. Perhaps a meltdown isn’t the product of a gene gone bad, but an evolved method of emotional processing (there really is great relief after a good meltdown cry- even if it isn’t the most fun in the middle of it all 😛 ).

Maybe the genes aren’t aberrant, perhaps it’s just our perception of them that we need to change.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend!

Aoife

Autism and Dyscalculia

Greetings Earthlings! 🙂

Leading on from my previous post on dyslexia, this week I’d like to discuss another lesser known learning disability that can be co-morbid with autism- dyscalculia.

So what exactly is dyscalculia?

Dyscalculia is a specific type of learning disability characterized by a difficulty with numbers and arithmetic i.e, understanding how to do maths and manipulate numbers (that’s right- not all autists are good with numbers Hollywood 😛 ) . There are varying levels of dyscalculia but signs may include difficulties with numbers and mathematical symbols, pattern recognition, sequence issues, handling money, managing and telling time, visual processing, and memory issues.

So what causes dyscalculia?

Again as with most aspects of the spectrum, the exact mechanism is unclear. Thought to be related to ADHD, dyslexia and dyspraxia, dyscalculia seems to result from dysfunction in the intraparietal sulcus (an area thought to be involved in processing symbolic and numerical information) and the frontal lobe of the brain. The frontal lobe in particular contains most of the dopamine neurons of the brain which are involved in attention, planning and short term memory- all of which are important functions in comprehending numbers. As discussed in many previous posts, dopamine levels are dysregulated in the autistic brain which could explain why autists may be more prone to these types of learning disabilities.

Is there anything that can be done to help manage it?

As with most disabilities, early detection and intervention are key to helping those with dyscalculia cope with their struggles. There have been very few targeted programs specific to dyscalculia but in recent years a number of digital programs have been created to help improve basic numerical abilities. The gold standard one to one tutoring is also a useful option to help improve these skills through repetition and targeting areas of particular difficulty. Interestingly, there was a study conducted in 2014 where electrical stimulation of the left side of the posterior parietal lobe of the brain (an area involved in spatial reasoning and planned movements) improved numerical abilities in patients. As many as 43% of autists may have abnormalities in their parietal lobe, so further research into this region could provide us with new ways to manage dyscalculia in the future.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

Autism in Heartbreak High

Greetings Earthlings! 🙂

Leading on from my previous post about Netflix’s film ‘I Used to be Famous‘, this week I’d like to talk about another new Netflix series that has an autistic character- the reboot of the Australian comedy-drama series ‘Heartbreak High’.

So what’s the show about?

The show centres on a group of teenagers in the fictional Hartley High School in Australia after a graffitied “sex map” has been discovered on a wall detailing all of the sordid details of the students sex-capades. Following its discovery, the principal puts the students in a mandatory sex education class called ‘Sexual Literacy Tutorials – or “SLTs” (which inadvertently sounds like ‘sluts’) in an attempt to guide the students and calm the PR storm brewing outside.

You can see a trailer for the show here:

Now one of the great things about this show is that it prominently features an autistic character called Quinni, played by autistic actor and activist Chloe Hayden. Quinni is an emotionally intelligent, vivacious and bubbly teenager with ADHD, who loves bright colours, art, stickers, crocs and fantasy novels (one of her specialist interests). Quinni is also a lesbian, which marks one of the first times I’ve seen an LGBT autist in a fictional show, which is quite surprising given that many on the spectrum identify as LGBT+. It was refreshing to not have the classic asexual wallflower that is often depicted on screen. The real twist is that there is actually an asexual character in the show but he wasn’t autistic!

The writers worked very closely with Chloe to create a genuine picture of autism for the audience (she pretty much got to write all of her character). To the untrained eye it is not immediately obvious that Quinni is on the spectrum, she just seems like a chatty, quirky teenage girl. We don’t find out she is autistic until she blurts it out to her annoyed date after seemingly ignoring her attempts at conversation all evening as she was struggling to concentrate due to noise sensitivity in the crowded restaurant. The response she gets is one that all high functioning autists can relate to- questioning, doubtful, comparing us to stereotypes/media portrayals from neurotypical actors etc. This scene was added as the writer’s asked Chloe what happens when she tells people about her diagnosis which you can see below:

As the series progresses we get to see her navigate the rollercoaster of her first relationship. While it starts out sweet with Sasha being considerate of her needs, a typical selfish teenager, Sasha starts coddling her and feeling responsible for Quinni rather than understanding her needs:

The relationship ends in tears when Sasha becomes dismissive of her need for routine and ruins a much planned and anticipated meeting with Quinni’s favourite author for her, triggering a meltdown and shutdown, with Quinni retreating into herself, not speaking for days on end- a sad reality that autists may face.

Personally, I wasn’t the biggest fan of the show (in my opinion it was a little bit too “woke” and the broad diversity of the characters seemed a bit forced), but it is a genuine portrayal of the reality that teenage autistic women face every day and is one of the first times that I’ve seen something of myself in an autistic character on screen in a long time. We need to see more Quinni’s on our screen to properly educate people about the realities of living with autism, and to give the next generation of autists someone to relate to, something that so many of us were lacking in our developmental years.

Hope you enjoyed this post dear Earthlings!

Have a lovely weekend! 🙂

Aoife

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