What I Wished I Knew About Autism

Greetings Earthlings! ๐Ÿ™‚

This week I’d like talk about some of the things I wished I had known about autism when I was first diagnosed. There’s so much to learn about the autistic spectrum, but here are just a selection of things I personally wish I had known:

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Autism is neurological not psychological– This is something that really stems from a lack of proper education about autism in the world. Because autism is so behaviour orientated, there is often a lot of onus on the psychology of the condition, and as such, people can be very dismissive of it. “If you just did this..”, “if you just tried to fit in…”- it’s not that simple. The autistic brain is wired completely differently to the neurotypical brain. There are chemical differences, differences in multiple structures in the brain, even differences in the number of brain connections. Behavioural changes can be made and coping strategies developed, but we need to be aware of the biological aspect- you can’t just swap out your brain for another. I wish I had understood that my own brain was hardwired to drop me into unfortunate situations growing up!

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Autism is a different way of thinking– The autistic brain is built differently, so therefore it thinks differently. It doesn’t mean that autistic thinking is not “normal”, just different.ย 

Autism is a spectrum- I know this one may seem silly as we’ve all heard of the autistic spectrum, but I wished I had known what being on the spectrum really meant. I had often heard the phrase “oh so-and-so is on the spectrum”, but took it to be a catch all term for people who were a bit odd, didn’t quite learn like everyone else, didn’t quite act like everyone else- basically people who weren’t quite “normal”. I never understood the minutia of the spectrum, that there were high functioning and lower functioning forms of autism. I wish I had known that traits were highly variable, that not everyone with autism is the same and that every case is unique. Perhaps if I had known this, I would have been far more understanding and less dismissive of my fellow autists growing up.

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Autists do experience empathy– We just may not be the best at expressing it. In fact as I’ve previously discussed, research suggests that we feel emotions on an even greater scale than neurotypicals.ย 

Autists want love– Asexuality is often thought to go hand in hand with autism. As I’ve previously discussed, most autists want to be loved, we’re just not sure how to communicate that or navigate the complexities of romantic relationships. Yes, there are a number of asexual individuals on the spectrum (as there equally are in the neurotypical population), but as with the spectrum of autistic traits, there is also a spectrum of sexuality.ย 

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That I wasn’t alone– For much of my life I felt like I didn’t fit in, like the world just didn’t understand me. I was always saying or doing the wrong thing, regularly subjected to looks of disappointment and dismay followed by lectures about my behaviour. When I would meltdown, I was ridiculed or punished as I sat there baffled by my own reactions, unable to explain to myself or others what had happened. Everything changed once I got my diagnosis; suddenly my behaviour was not so abnormal after all. There were articles, books and blogs filled with thousands of similar stories to mine. There was a name, an explanation, a community- I never have to feel alone again.

That I was “normal” (whatever that means) – As a result of being undiagnosed and misunderstood, I was constantly berating myself for not conforming to the accepted “norm”. The world told me that I was weird, that I was “wrong”, where nothing I ever seemed to do outside of academics seemed to be “right”. Had I truly known and understood that there is no such thing as “normal”, had I, and the world, known that being autistic is “normal” for millions of people, my life could have been so much simpler.

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Hope you liked this post dear Earthlings! ๐Ÿ™‚ย 

Enjoy the weekend!ย 

Aoife

My Autistic Fight Song- Rosie Weldon

Greetings Earthlings! ๐Ÿ˜€

As many of you may know, I love to read, and so I was delighted to be offered the opportunity to read an advanced copy of ‘My Autistic Fight Song‘ by Rosie Weldon.

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This enticing memoir charts Rosie’s journey through higher education, her autism diagnosis and her struggles in the workplace as she strived to achieve her dream of becoming an accountant.

You can find a trailer for the book here on Rosie’s Youtube Channel:

 

So what did I make of the book?

Reading this book was a very interesting experience for me as someone who has yet to engage with another female autist in the flesh. I’ve read many abridged accounts and watched many interviews with other female autists, but this was the first time I really was given a raw insight into the mind of someone other than myself.

In some ways I could have been reading my own story. My experience of autism has been significantly milder, but yet many of our experiences align. Both diagnosed in our twenties, both encountered challenges with social anxiety, both found comfort in music, Harry Potter and the confines of a secluded bathroom stall. It was fascinating to see into Rosie’s thought process, her thinking so often mimicking my own- growing up, it would have been nice to have come across this book to let me know that I wasn’t alone, that I wasn’t so different after all.

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Perhaps most interesting was Rosie’s experiences of the workplace. As I have discussed previously, only a small percentage of autists find full time employment. Rosie’s perseverance in the face of adversity in the workplace was inspiring. She was fiercely determined not to be another statistic, and this determination made her dream of being an accountant a reality.

It was also most heartening to see the support that Rosie received from her employers along the way- they did not see her autism as a challenge and instead found ways to work within her comfort zone, such as moving noisy machines to a different room. Having struggled in the workplace myself in a role where I was not adequately supported, I’m glad to see that not all employers see autism as a burden.

For anyone looking for an insight into the mind of a female autist, “My Autistic Fight Song” is the perfect bedtime read ๐Ÿ™‚

Rosie also has her own blog where she talks about autism which you can check out here: https://www.rosieweldon.com/

If you’d like to read ‘My Autistic Fight Song‘, the book will be available to buy from April 1st (conveniently timed for Autism Awareness Month) ๐Ÿ™‚

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Hope you enjoyed this post dear Earthlings! ๐Ÿ˜€

Enjoy the weekend!

Aoife

Greta Thunberg and Autism

Greetings Earthlings! ๐Ÿ˜€

So this week I’d like to discuss an inspirational young autist that I’ve been meaning to write about for some time- climate activist Greta Thunberg.

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For those of you who’ve been living under a rock (and I mean, seriously living under a rock, this girl has been all over the news ๐Ÿ˜› ), Greta is a Swedish teenager who began striking from school on Fridays outside the houses of parliament in Stockholm for action against climate change in 2018 at just 15 years of age. Greta rationalized that the impending climate crisis means no future for her generation, so why should she go to school to prepare for a future that would not exist?

Since she began striking, Greta’s actions have spawned an international movement known as ‘Fridays For Future‘ where students the world over are striking from school for climate change action. She was even nominated for the Nobel Peace Prize for 2019.

What a girl!

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In recent months however, attention has focused on the fact that Greta has Asperger’s syndrome (I’m in good company!). In her viral Ted Talk, Greta speaks of how learning about the climate crisis at 8 years old led to her diagnosis. Unable to process the inaction of the world, Greta became withdrawn, depressed and stopped eating, which led her to be diagnosed with OCD, selective mutism and Asperger’s Syndrome. As Greta so eloquently explained in her talk, thisย means that she only speaks when necessary. Now, in the midst of the climate crisis, is one of those moments.

You can see her viral TEDx Talk here:

 

 

Like me, Greta does not see Asperger’s as a disability, but as a gift, calling it her “superpower”. She recently discussed this on the Ellen DeGeneres show where she talked about how autists are important in a crisis such as global warming as we are different, and we need to think differently to find solutions. Her tenacity, her passion and her black and white, no nonsense speeches (all autistic traits), truly are superpowers in her fight to save the planet.

 

Greta Fun Fact-ย her mother represented Sweden in the 2009 Eurovision Song Contest ๐Ÿ˜€

However, the media have recently begun to turn on Greta because she is neurodivergent. A guest on Fox News recently described her as “mentally ill” sparking much discussion about the state of her mental health. As is often the case, once people hear the ‘a’ word, they automatically assign you a box…

Just a reminder– autism is NOT a mental illness; it’s a neurodevelopmental disorder. We may be greater disposed to having issues with our mental health due to higher stress levels, but an autism diagnosis is not synonymous with mental illness.

Whilst I would echo some journalists concerns about the strain of her current international exposure (fellow aspie Susan Boyle had to check into rehab for exhaustion after her viral appearance in Britain’s’ Got Talent), ultimately what Greta needs is action. Saving the planet is her specialist interest, and as I’ve discussed previously, we are consumed by our passions. She will stop at nothing or for no one to save the world.

Without a doubt, Greta is an extraordinary girl, and really shows that you should not allow yourself to be limited by your diagnosis. Indeed, there are people out there vehemently trying to write her off, but the rest of the world is listening.

Hope you enjoyed this post dear Earthlings! ๐Ÿ˜€

Have a lovely weekend!

Aoife

Autism on Screen- Glee

Greetings Earthlings! ๐Ÿ™‚

This week I’d like to talk about autism in the popular multi-award winning, musical comedy-drama show ‘Glee‘.

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In case you’ve been living under a rock or have forgotten all about ‘Glee‘, ‘Glee‘ focused on a high schoolย show-choirย comprised of a group of misfits as they strive for fame and acceptance.

As I’ve been binge watching it on Netflix in recent weeks, I’ve discovered something that I missed when I initially watched the show, there was a character with Asperger’s syndrome in the choir room all along- Sugar Motta.

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Sugar Motta was introduced during the third series of the show as a girl with “self-diagnosed Asperger’s syndrome” which she claimed entitled her to say whatever she wanted and gave her carte blanche to be brutally honest with everyone.

Here’s a quick video with some of her moments from the show’s run:

So how does the character’s portrayal of Asperger’s fare?

Looking through the archives, the show received a great deal of backlash at the time for their use of Asperger’s as a punch line. Most people have argued that Sugar is not on the spectrum and is just a spoiled brat who uses Asperger’s as a means to get her own way, but in terms of traits the show wasn’t that far off the mark for a girl on the spectrum, albeit a brief glimpse. The brutal honesty, the inability to accept that she cannot sing (so much so that her rich father set up a rival glee club where she could be the star) or any criticism for that matter, and her high level of social functioning can be true for some female autists.

After a couple of episodes the character’s diagnosis is no longer mentioned, nor are her traits showcased. It’s no wonder really that I never spotted her Asperger’s when I watched the show originally as the character was relegated to the background of the show by the time I received my diagnosis in 2014.

All in all, I’d have to agree with the critics that the character doesn’t really have Asperger’s, or at the very least is a pretty poor depiction of the autistic experience.

Hope you enjoyed this post dear Earthlings! ๐Ÿ˜€

Until next time!

Aoife

“You Don’t Look Autistic!”

Greetings Earthlings! ๐Ÿ™‚

After reading a write in to an advice column in the newspaper this morning, the parent of a recently diagnosed child rationalized that the diagnosis didn’t make sense as their child was doing well in school, popular and “good socially.”

I found this particularly annoying as this type of attitude is something that we high functioning autists encounter all the time.

“You don’t look autistic?!”

“You’re normal!”

“You can’t be autistic!”

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These are some of the most common phrases I hear when I talk to people about my diagnosis, as do many high functioning autists. Whilst this is a great compliment to my upbringing and acting skills, this kind of reaction can be quite damaging for autists.

First things first- no one looks autistic ๐Ÿ˜›

It’s a neurodevelopmental disorder, how are we supposed to look? Unless you have eyes like an MRI or some type of X-ray vision, you won’t physically see our neurological differences! Roughly 1 in 68 people are autistic- that’s 1 person per double decker bus, 1 person per carriage on the average train, and 3 people on the average international flight. Would you say that you’ve seen someone that “looked” autistic every time you’ve used these transport services? ๐Ÿคจ

We’re everywhere, looking exactly the same as you do.

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^^^ Sorry couldn’t resist giving my favourite musical a shout out- 10 points if you get the song reference ๐Ÿ˜Ž

With autism, it’s very much a case of “don’t judge a book by it’s cover”.

With the increased generalization of the spectrum, from the outside, our books look alike, each with the same rainbow-coloured ‘autism’ cover on display. The stories inside however are very different. There may be similar themes, experiences and symptoms between books, but ultimately each is unique.

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Contrary to popular belief, just like the child in the advice column, many high functioning autists have an active social life. In college I was at every party going and the last one on the dance floor- had you seen me, would you have said I was autistic? Appearances can be deceptive, you donโ€™t know how hard some of us have to work on our social skills behind closed doors. Eye contact isnโ€™t natural for me, but with practice and forcing myself out of my comfort zone, no one would be any the wiser when chatting to me now. I’m a social butterfly who doesn’t outwardly appear autistic, but I have a piece of paper and an autism spectrum quotient score that say otherwise

No, I do not “look” like the stereotypical image of autism, but it doesn’t mean that I’m not riding that spectrum.

This attitude towards autism’s outward appearance could in fact be quite detrimental. If we don’t recognize that a person is autistic when they don’t fit the preconceived mould; they may languish for years without adequate understanding and supports for their needs. This is especially true for females on the spectrum who have learned the art of social masking, often flying under the radar of male centered diagnostic criteria.

As I have discussed many times before, autism is a spectrum, everyone is different and therefore their traits will be different. Don’t judge us by the ‘autism’ cover adorning our story, delve deeper into the book and you may be surprised at what you’ll learn ๐Ÿ™‚

Hope you enjoyed this post and have a lovely bank holiday weekend dear Earthlings! ๐Ÿ˜€

Aoife

Autism and Eating Disorders

Greetings Earthlings! ๐Ÿ™‚

This week I’d like to talk about a very common issue, particularly for women with autism- eating disorders.

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As discussed previously, mental health issues are quite prevalent among the autistic population. Because of this, many autists can go un-diagnosed as co-morbid mental health issues often mask the root autism diagnosis. This is particularly true of eating disorders for female autists where doctors will diagnose an eating disorder, but due to social masking tendencies will often overlook their autistic traits.

In fact this should really be one of the first things that doctors should assess when patients present with eating disorders as numerous studies have shown that there is a higher prevalence rate of autism in patients diagnosed with eating disorders (up to 20%). Evidence indicates that patients presenting with anorexia nervosa, bulimia nervosa and binge eating disorder (BED) have greater numbers of autistic traits than the general population.

Autistsย will often not benefit from conventional treatment for disordered eating so it is critical that it is identified early.

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So why are eating disorders so prevalent for those on the spectrum?

The reasons are varied, but tend to be either psychological or sensory related:

Psychological:

Some people on the spectrum develop eating disorders as a means to fit in, to attain the kind of figures that they see in magazines and perceive to be “perfect” or “normal”. Others develop eating disorders as a means of control, where the routine and rigidity can be a source of comfort to an anxious mind running on overdrive (interestingly this may have a scientific basis as starvation decreases levels of serotonin, which is heavily involved in anxiety and is often elevated in autism). Moreover, if exercise or particular foods become specialist interests, an autist may obsess and inadvertently develop a disorder as a result.

In some cases an eating disorder may be a simple matter of mind blindness where an autist simply does not understand that their eating behaviours are abnormal or dangerous.

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Sensory:

Sensory issues are commonplace for autists both with and without an eating disorder. An autist may be sensitive to different tastes, textures and smells which can make for a very restrictive diet depending on the severity. In some cases, eating may be so stressful that they may not eat very much at all to avoid an unpleasant sensory event.

For further information about autism and eating disorders you can check out the link below for advice and support:

https://www.bodywhys.ie/understanding-eating-disorders/key-issues/autism-eating-disorders/

Hope you enjoyed this post dear Earthlings! ๐Ÿ™‚

Enjoy the weekend!

Aoife

Making Assumptions about Autism

Greetings Earthlings! ๐Ÿ™‚

I had intended to write a different post this week, however, after watching the most recent episode of ABC’s acclaimed ‘The Good Doctor‘ (a TV show that follows a surgical resident with autism), I’d like to talk a little bit about making assumptions about an autist and their abilities.

Just in case any of you are fans and are not up to date look away now *spoiler alert.*

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*Spoiler* In recent episodes, the new chief of surgery has made the decision to remove Shaun (aka the ‘Good Doctor’) from the surgical program following a minor social miscommunication with a patient, and place him in pathology, refusing point blank to get to know him or give him his job back. Naturally, this did not help Shaun’s mental state and need for routine, which ultimately led to the mother of all meltdowns and his subsequent firing from the hospital.

It was a nice bit of acting by Freddie Highmore if you’d like to see a clip following his firing:

Spoiler over!

Now it’s not often that I really feel a connection with Shaun (as we are very different in a lot of ways- no two autists are the same after all!), but this episode got me right in the feels.

Shaun’s predicament was one that I knew all too well. Shortly after my diagnosis I encountered a similar scenario in my career where assumptions were made about my abilities. Once the ‘A’ word was on the table, my employers opinion of me changed overnight, but alas, not to my benefit. Suddenly I found myself adrift in career limbo because someone jumped straight to the conclusion without stopping to discuss.

This is something that we’re all guilty of, not just employers. We hear the word ‘autism’ and suddenly our brain paints a picture. We see traits that may not be there, we imagine difficulties that may not even exist, we make assumptions on a persons character, interests, idiosyncrasies etc. based on what we know of autism without first taking time to see the person in front of us.

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I’m worn out trying to tell people that no two autists are the same! Yes, there are similarities and common traits, but just because John hates to be touched, doesn’t mean that Mary automatically hates hugs. She may love them- but if the assumption is made you’ll never get to find out.

We cannot make assumptions on an autists ability. We need to educate ourselves, get to know a person, take time to see the person beyond the diagnosis. What I need is different to what Shaun the ‘Good Doctor’ needs; who I am and what I can do are worlds apart from him. Shaun is a skilled surgeon that sometimes struggles with communication, I’m an outgoing sciencey-artsy type who never shuts up, yet most people on hearing the word ‘autism’ would tar us with the same brush.

When it comes to autism, you can never judge a book by it’s cover-but especially don’t make an assumption as stupid as this one ๐Ÿ˜› :

https://www.betootaadvocate.com/uncategorized/i-took-my-autistic-mate-to-the-casino-and-lost-17000-in-ten-minutes/

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Hope you enjoyed this post dear Earthlings! ๐Ÿ˜€

Until next time!

Aoife

Autism and Mental Health

Greetings Earthlings! ๐Ÿ™‚

Did you know– autistic children have higher levels of depressive symptoms and are 28 times more likely to have thoughts of suicide than their neurotypical counterparts? ๐Ÿ˜ฒ

bitmoji1256098968In recent years our awareness of and willingness to tackle mental health issues has increased significantly, however, the autistic community is often forgotten in our discussions.

Mental health issues such as OCD, anxiety, depression, eating disorders, ADD, psychosis, personality disorders and bipolar disorder are frequently co-morbid with ASD diagnoses, but aside from OCD and anxiety, you will rarely hear about these other issues in relation to autism. In fact, such mental health issues can even obscure ASD diagnoses in higher functioning autists as clinicians often diagnose the co-morbid condition without seeing the underlying ASD.

This is a particularly big issue for women on the spectrum as experts have found that we tend to exhibit greater depressive symptoms and higher anxiety levels than our male counterparts as we tend to internalize and ‘mask‘ our struggles. Moreover due to differences between male and female presentation of ASD’s and male bias in the development of the diagnostic criteria, women with autism are often misdiagnosed as having mental health issues, but the root ASD continues to evade.

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But are there any scientific reasons why mental health issues are so prevalent among autists?

A recently published study has suggested that perhaps the gut may influence an autists mental health. As gastrointestinal issues are often co-morbid with an ASD diagnosis, and as the microbes that live in the gut can have an influence on the brain and behaviours, it has been proposed that perhaps a “dysbiosis” or imbalance in gut microbes may have an influence on an autists mental health ๐Ÿ˜ฒ

Interestingly studies have also identified an overlap between the genes that cause schizophrenia, bipolar disorder and autism wherein certain points on these genes encode proteins that are involved in the formation and strength ofย synapses (which act as chemical bridges between neurons) suggesting that these disorders may act through a similar neurological pathway. Moreover, dysregulation of neurotransmitters (biochemical messengers in the brain) has also been implicated in depression, anxiety, bipolar disorder, ADHD and autism (as we have discussed in multiple previous posts) indicating further neurological overlaps.

In short, it seems that the biological basis of both autism and mental health issues are intertwined, which could explain why so often the two walk hand in hand.

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Hope you enjoyed this post dear Earthlings! ๐Ÿ™‚

Until next time!

Aoife

 

 

Autism Profiles: Anne Hegerty

 

Greetings Earthlings! ๐Ÿ™‚

This week I’d like to discuss a celebrity with autism that has been featuring in the news a lot lately- Anne Hegerty, better known as the Governess on the ITV quiz show ‘The Chase‘ in the UK. Anne is an elite quizzer, one of six, whom challengers head off against to win large sums of cash for their team.

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As an avid fan of quiz shows I’veย  been fascinated by Anne and her brain for some time, and even more so after I read about her diagnosis of Asperger’s syndrome at the age ofย  45. Before her diagnosis, Anne was on the brink of homelessness and struggling to “keep it all together”. However, following her diagnosis, she was introduced to the world of elite quizzing by her social worker and the rest is history! ๐Ÿ™‚

Most recently, Anne has been appearing in the news due to her participation in the ITV reality show ‘I’m a Celebrity, Get Me Out of Here!”. For those of you unfamiliar with the show, a group of celebrities (although the term is often used loosely these days due to the decreasing calibre of celebs willing to participate ๐Ÿ˜› ) are deployed into the Australian jungle for a few weeks and the public votes to subject their chosen celeb to ‘bush-tucker trials’ to win their campsite meals and luxuries. These trials are torturous ordeals where the celeb is often exposed to creepy crawlies, may have to wade through slime/crocodile infested waters, could be buried alive (with unknown nasties) and may even have to eat a range of unpleasant jungle critters- meals often including some “unsavory” parts of the kangaroo/crocodile anatomy…๐Ÿ˜ฌ

As you can imagine, this is not exactly the most hospitable of environments for the average autist!

In fact, Anne broke down in tears on the first night in the jungle as she struggled to adjust to life outside her comfort zone, and was very close to saying she couldn’t do it.

But Anne has persevered, and even powered through some disgusting bush-tucker trials which you can see in the links below (I know I wouldn’t be able for them!):

She has been widely praised during the shows’ run for talking openly about her diagnosis with her camp mates and raising awareness about the every day challenges of living with Asperger’s.

Here she is opening up about her struggles in the jungle:

You can see her chat a little bit more about her life with Asperger’s here on the ITV chat show ‘Loose Women‘.

I’d just like to finish this post by wishing Anne the best of luck in her remaining time in the jungle (she’s one of the favourites to win) and to conclude with a fantastic quote from her about having Asperger’s syndrome:

“People say to me, ‘I understand you suffer from Asperger’s’ or ‘you suffer from autism’, and I’m like, ‘no, Iย haveย Asperger’s, I suffer from idiots!” ๐Ÿ˜‚

Love this woman! ๐Ÿ˜€

It’s such a pleasure to witness to a real aspergirl showing the world that one should not be defined by a diagnosis, but by the strength of your actions ๐Ÿ™‚

Have a great weekend Earthlings! ๐Ÿ™‚

Aoife

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