“You Don’t Look Autistic!”

Greetings Earthlings! 🙂

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 😛

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? 🤨

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 😎

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 don’t know how hard some of us have to work on our social skills behind closed doors. Eye contact isn’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 🙂

Hope you enjoyed this post and have a lovely bank holiday weekend dear Earthlings! 😀

Aoife

The Problem with High Functioning Autism

Greetings Earthlings! 🙂

This week I’d like to discuss the term “high functioning autism”.

You may be surprised to hear that the term “high functioning” is quite controversial within the autistic community. In fact a recent study strongly supports discarding the term “high functioning autism” completely.

So why is the term controversial?

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Firstly, let’s quickly remind ourselves of what constitutes high functioning autism:

High functioning autism (HFA) is a term used to describe autists with strong language skills and an IQ of over 70 ( i.e they do not have an intellectual disability). 

Herein lies the problem- the term uses IQ as a predictor of functionality and does not take into account the day to day struggles of the average autist. An autist deemed to be low functioning may not encounter challenges in their daily life, but may struggle academically.  Similarly, an autist may excel academically, but something so trivial as writing an email may prove challenging. In many of the films I’ve reviewed, the autistic character is described as high functioning, but yet they are incapable of living an independent life.

Moreover, functioning levels often fluctuate from year to year, improving or dis-improving depending on circumstances and levels of support- there’s even evidence to suggest that, as with many things, autism can get worse with age! Levels can even fluctuate day to day where something as simple as lack of sleep can impact upon functioning. As a result of this, many autists deemed “high functioning” do not get adequate support for their needs.

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Researchers have found in a recent study that there is a serious gap between an autists cognitive functioning (IQ) and their adaptive behaviours (i.e. their ability to adapt to their environment). The average results show that autists with higher IQs scored 28 points lower than their IQ in adaptive behaviour scales, suggesting that IQ is a weak predictor of daily functioning.

You can read more about the study here:

Large study supports discarding the term ‘high-functioning autism’

Technically speaking, within the medical community the term “high functioning” is considered an informal term and is not in itself a definitive diagnosis, further fueling efforts to banish it.

However, I personally feel that removing the term could be problematic. In my case, both my IQ and functional abilities are high- I breezed through college, have an active social life, hold a job and live independently. To say that I am simply autistic to a person who doesn’t know me very well can skew their expectations and perceptions of me- especially in the workforce. Granted, public understanding of the spectrum is improving, but still the ‘a’ word can place you into a predefined box in people’s minds.

I worry that our move towards a more generalized view of the spectrum may effectively disable the truly high functioning. Recall how autism is divided into levels. Asperger’s syndrome has been swallowed up by level 1 autism, where autists have noticeable issues with socializing and communication skills. This level is characterized by:

  • decreased interest in social interactions or activities
  • capable of social engagement but may struggle with conversational give-and-take
  • difficulty with planning and organizing
  • struggles with initiating social interactions, such as talking to a person
  • obvious signs of communication difficulty
  • trouble adapting to changes in routine or behavior

where autists are vaguely classed as “requiring support”.

On paper, I fall under this definition, but it does not describe me as well as Asperger’s syndrome or the term ‘high functioning’. This definition paints an entirely different picture for people to that of my reality (for starters the only support I require consists mainly of a good bra, sugar, a hug and a box of tissues for unexpected meltdowns 😂). Were I to have been diagnosed earlier in life, this definition may well have held me back.

For many autists, indeed the term high functioning can be tricky, but I do not believe it should be abandoned completely. Yes, it is time to reevaluate our classification of autism to better define functionality levels across the entire spectrum, but perhaps there’s a better way to go about it.

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Hope you enjoyed this post dear Earthlings! 😀

Have a lovely weekend!

Aoife

Autism- Breaking the Mould

Greetings Earthlings! 🙂

In the last couple of days an audition video from America’s Got Talent has gone viral featuring Kodi Lee- a blind, 22 year old autist with an amazing gift for music. If you haven’t seen the clip yet, check it out below (such an amazing voice!):

After watching this video, it’s got me thinking about our tendency to put people on the spectrum into boxes. We’re constantly talking about tolerance, acceptance and equality in the world today, but still we can be quite quick to write people off.

“You’re autistic”- this is you label, this your box, this is what we expect of you.

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Having Asperger’s is just one aspect of me. It influences quite a lot of my quirks, but it is still only one piece of my jigsaw. This one word will not tell you about my talents, my interests, my active social life. It reveals a part of me, but not the whole.

My entire life I’ve never been one to conform, and autism is no exception. I refuse to fit into any particular mould- I’d much rather be an abstract painting, entirely unique.

Moulds are for bread and fondant 😛

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Something that really saddens me is that when a parent hear’s the word autism, there is a tendency to let go of the mental picture that they have for their child’s life. They mourn the loss of a “normal” life (whatever that is!). They worry that their child won’t make friends, will struggle in school, that they won’t achieve their dreams.

Life does not always run smoothly, and rarely fits the picture we first imagine. I never thought I would still be single in my late twenties, but that’s life. Some might think that I would scrap that picture of finding love from my mind after I got my diagnosis (as so often autists struggle romantically), but why would I? Sure it can make it difficult to read romantic situations, but it doesn’t mean I won’t find love one day. There’s no real reason that I can’t break the mould.

And sometimes in life, the picture has to completely change to give birth to something greater. For example, there is some evidence that there may be a hidden portrait underneath the Mona Lisa. Leonardo da Vinci had to let go of this original picture in order to create a masterpiece (one which he spent years editing I might add).

Our lives are like the creation of the Mona Lisa- the picture is always changing. An autism diagnosis may alter the projected picture, but it doesn’t mean that one day it won’t become a masterpiece.

The pictures we have in our heads for our lives/our children’s lives are not finite. We don’t have to let go of our dreams for the sake of one word. Look at how Kodi is breaking the mould- with one look you might think you know his story, but when he opens his mouth he paints you a brand new portrait. And let’s not forget Susan Boyle (a fellow aspie), one audition changed her life forever. Everyone laughed when she came on stage, but now she’s living her dream! (Side note- can’t believe this was 10 years ago…feeling old!👴).

And let’s not forget how non-verbal Carly Fleischmann has become a talk show host!

The world is full of stories of incredible autists breaking the mould, challenging our preconceptions of what we think autism is. As I am repeatedly saying, no two are the same, so why do we insist on these moulds?

Give us the freedom to be who we are, lend us a blank canvas and we’ll paint you a picture you could never have imagined 🙂

Hope you enjoyed this post dear Earthlings! 😀

Have a wonderful weekend! 🙂

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Aoife

 

Happy Easter! :)

Greetings Earthlings! 🙂

Just taking this opportunity to wish you all a very happy Easter! 🙂

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Hope you all have a great weekend!

Try not to eat too much chocolate now! 😉

Aoife

Making Assumptions about Autism

Greetings Earthlings! 🙂

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 😛 :

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! 😀

Until next time!

Aoife

Autism and Climate Change

Greetings Earthlings! 🙂

I know what you’re all thinking, she’s lost it- what on earth has autism got to do with climate change?!

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Well, nothing really, but what I’m referring to is the impact of the recent Lancet report about the need to change our eating habits to stave off climate change and it’s potential impacts for the autistic community. If you’ve been living under a rock and haven’t heard about the report you can check out the paper here:

https://linkinghub.elsevier.com/retrieve/pii/S0140673618331799

or alternatively here’s a handy little summary news report:

https://www.irishtimes.com/business/agribusiness-and-food/meat-consumption-must-drop-by-90-to-avert-climate-crisis-report-warns-1.3760363

The bottom line of the report- we need to reduce our meat consumption by 90% and significantly increase our consumption of fruits, vegetables, nuts and beans to achieve our daily recommended caloric intake (18 times as much dry beans, soy and nuts in fact! 😲)

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As a scientist, I’m all for finding ways to reverse the impact of climate change,  however, I have found this report quite infuriating!

I haven’t really talked about food too much as an issue on this blog (mainly because it’s a subject that’s going to take some time to write about!), but food issues are perhaps my biggest struggle. Troubles with textures, tastes, smells- it can be a nightmare sometimes; but if the Lancet report is to be taken seriously, my nightmare has only just begun!

I’m a real meat lover, and vegetables for me mainly consists of baked beans and the old Irish favourite potatoes (some stereotypes are based in fact after all! 😛 😉 ). If this report is to be seriously considered, this would restrict my daily intake of chicken (my staple) to 29g or the equivalent of one and a half chicken nuggets. Worse still for my beloved potato the Lancet recommends 50g or 39 calories of potatoes per day- roughly a quarter of a medium-sized potato!

So basically if we start to crack down on these foodstuffs, I’ll be living on fresh air and sugar- I’ll have a killer figure for sure, albeit with a side of diabetes 😛

What I am most concerned about is the larger autistic community. My food issues are mild in comparison to other autists-what about the poor struggling parents who’s child will only eat the same meal day in day out, or will only eat McDonalds or foods of a particular colour? Has no one stopped to consider the struggles that these recommendations will bring?

Don’t even get me started on the implications for those with food and nut allergies, of which a high percentage of the autistic community suffer from!

The agricultural industry in Europe is responsible for a mere 10% of our carbon footprint whereas our energy consumption stands over a whopping 80%! Why must our food habits change when our energy consumption is so staggeringly high?

It beggars belief that the medical community would think that such a radical overhaul of our eating habits is our best option in the fight against climate change.

What we really need are cleaner fuel alternatives, better range of and services for hybrid cars, and better public transport systems for rural communities (a huge issue here in Ireland- if you don’t have a car, rural life is extremely isolating. Where I live one would have to walk for 45 minutes to get a bus to the nearest town!) to cut down our carbon footprint. Or if someone could invent apparition from Harry Potter that would also work pretty nicely too 😛 😉

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Hope you enjoyed this post dear Earthlings! 🙂

Have a wonderful weekend!

Aoife

Merry Christmas!

Greetings Earthlings! 😀

I’d just like to take this opportunity to wish you and yours a very Merry Christmas and to wish you every happiness for 2019 to come! 🙂

As we come to the end of another year I’d just like to thank you all for your continued support and readership. I really appreciate your kind comments and that you’ve stuck with me for this long 🙂

Who’d have thought 2 years ago that you’d all still be here listening to my ramblings! 😂

I’ll be taking a break for a couple of weeks over Christmas, but I’ll be back again in the new year!

Wishing you all the very best for the festive season! 🙂

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Aoife

Autism Profiles: Anne Hegerty

 

Greetings Earthlings! 🙂

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’ve  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 of  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! 🙂

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 😛 ) 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…😬

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, I have Asperger’s, I suffer from idiots!” 😂

Love this woman! 😀

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 🙂

Have a great weekend Earthlings! 🙂

Aoife

Autism and Robots

Greetings Earthlings! 🙂

Today I’d like to briefly discuss a somewhat unusual topic- robots and autism.

Yes, I know what you’re all thinking, Aoife has finally lost it- but just before you call in the men in the white coats, let me tell you about the clinical benefits of using robots for children with autism! 🙂

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Recent technological advances in the field of robotics offer great possibilities in the treatment of autism. As interactive robots are increasingly becoming more human like, this technology can be used clinically to help teach social skills to children with autism.

Whilst the research into the therapeutic benefits of robots is in it’s infancy, several schools across the globe have begun to use social robots reporting very positive results 🙂

So how do these robots work?

The robots engage autists with a specially tailored curriculum. For example, the robot makes a sad face or starts laughing and the child has to say what the robot is feeling, or when interacting with the robot if they do something that could hurt a real person, the robot will cry out so that the child can learn that this  behaviour is not appropriate.

It’s really cool! 😀

You can check out Milo below- one of the many models of social robots helping kids with autism worldwide (try not to let  him creep you out though, Kaspar the robot is way freakier….might have further to go in making these robots more approachable in my opinion 😬).

The benefits of using this technology currently include improved:

  • Engagement
  • Eye contact
  • Vocabulary
  • Attention
  • Self-motivation and regulation
  • Emotional recognition and understanding, and
  • Improvements in appropriate social behaviour

And all of this within just 1-4 months of using a robot like Milo! 😲

All in all the technology looks really promising in the treatment of autism, even if a few tweaks may be needed to improve the appearance of these robots 🙂 😛

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Aoife

 

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