“You Don’t Look Autistic!”

Greetings Earthlings! πŸ™‚

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 πŸ˜›

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 πŸ™‚

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

Aoife

The Problem with High Functioning Autism

Greetings Earthlings! πŸ™‚

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 aΒ 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).Β 

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.Β  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 β€˜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.Β Asperger’s syndrome has been swallowed up by level 1 autism, whereΒ 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 πŸ˜‚). 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! πŸ˜€

Have a lovely weekend!

Aoife

Ask an Aspie

Greetings Earthlings! πŸ™‚

Have you ever had any burning questions about autism that you’d like answered?

Is there any aspect of autism that you’d like to know more about?

For the past 18 months, you’ve listened to my ramblings about life on the spectrum, but now I’d like to turn it over to you guys! πŸ™‚

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For some time now I’ve been meaning to start a series called “Ask an Aspie” to allow you the opportunity to ask me questions/address the spectrum topics that you want to know more about πŸ™‚

So write me a comment or send me an email and let me know what YOU want to know most about! πŸ˜€

Enjoy the weekend Earthlings! πŸ™‚

Aoife

Autism and Travel

Greetings Earthlings! πŸ™‚

Following a recent trip to Amsterdam a very wise friend suggested that I discuss the subject of autism and travel in this weeks blog πŸ™‚

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We all love nothing more than a nice trip away for a new adventure or some much needed R and R. For autists however, travelling overseas, (like life in general πŸ˜› ), can be very stressful.

The crowds, the smells, lack of sleep, ear popping, travel sickness, the stress of beeping going through airport security knowing that random people may invade your personal space- it’s a lot to process!

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So how might one navigate some of these difficulties?

  • Pack plenty of snacks– one of the trickiest aspects of travel I find is to find “Aoife friendly” food. If you’re travelling long hours without something decent in your stomach, it can be very difficult to stay sane. Eating healthier snacks may also help you avoid some travel sickness.Β Aoife’s Top Tip– the discovery of Belvita Breakfast Biscuits has made my life sooooo much easier!
  • Sleep/Caffeine– I know it’s not the easiest of tasks, but try to get as much sleep as possible before/during a flight. Nothing frays my temper quicker than sleep deprivation. Caffeine is also useful to help get you through the slumps- or Diet Coke if you like me have sensory issues with hot drinks πŸ™‚
  • Vigilance with metal– To avoid any unexpected pat downs, be sure to double check your pockets before security (you wouldn’t believe the things security have found in my granddad’s pockets- drill-bits to name but one memorable example! πŸ˜› ). Be sure to also double check your hair clips and jewelry- real metals such as silver and gold won’t set the alarm off πŸ™‚
  • Neck pillows- there’s a lot to be said for a good neck pillow on a flight! These can really help to make an autist more comfortable in the cramped confinings of a plane
  • Noise Cancelling Headphones/earplugs– These can be quite useful to help decrease the volume of your surroundings, and can also help to decrease the pressure round your ears in my experience. However, on my flight this week I learned that the use of large headphones is now forbidden for take off and landing- so you may need to check this out with your airline

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In addition to this, airports are beginning to realize the importance of creating an autism friendly environment. Shannon Airport here in Ireland for example has established Europe’s first airport sensory room in the departures lounge. You can check it out here:Β http://www.shannonairport.ie/gns/passengers/prepare/autismandspecialneeds.aspx

Shannon airport have also implemented a customer care program for autists where special caps and wristbands are assigned so that airport staff can readily recognize and help an autist appropriately.

It’s only a matter of time before other international airports begin to follow suit πŸ™‚

Happy travelling Earthlings! πŸ˜€

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Aoife

Inside the Autistic Brain

Greetings Earthlings! πŸ™‚

Today I’m going to dive into the physiology of the autistic brain to explain what’s actually going on at the neurological level. I’ve touched on aspects of the science in previous posts, but I wanted to give you a quick overview post where the main points in the one place πŸ™‚

So let’s get down to some science! πŸ™‚

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Hyper-connected Neurons:

Scientific evidence suggests that neurons in the autistic brain are hyper-connected. Specifically, studies indicate that autists have too many synapses in the brain. The synapse is basically a gap or a junction between two neurons where chemical messengers (neurotransmitters) carry information like a ferry from one neuron to the next. It looks a little bit like this:

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During normal brain development, about half of the synapses we are born with are “pruned” off. In autism, this process is slowed down, and so autistic children have an excessive amount of synapses compared with their neurotypical peers. As these connections are essential to communication between neurons, this can greatly effect how the brain works and processes information.

Dysfunction at the Junction:

In addition to possessing an excessive number of synapses, communication at these neuronal junctions is also impaired in the autistic brain.

Animal studies have indicated that synapses function differently in the autistic brain as a result of genetic mutation. Mutations cause certain proteins to be absent in autism- proteins that are essential to the normal functioning of the synapse. As a consequence of this, the transmission of information between neurons is affected, resulting in a number of social and behavioral issues.

Think of physical junctions on a busy road- if something goes wrong at the junction, a chain of chaos will ensue!

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Hyper-excitable Neurons:

Research shows that in many cases of autism, neurons in certain regions of the brain are more excitable than others. This means that these neurons are more sensitive to stimulation. For example, the neurons located in the sensory cortex of the brain (which processes sensory information such as smell), are more sensitive and excitable than other neurons. This is kind of like how a person can be more ticklish in some parts of the body than another- the nerves in the underarm are more excitable than those of the arm.

This sensitizes the autistic brain to all kinds of stimuli as discussed here.

Dysregulated Neurotransmitter levels:

As previously mentioned, information travels across the synapses in the brain via chemical messengers known as neurotransmitters. In the autistic brain, the levels of these neurotransmitters are dysregulated- or out of sync. Research indicates that individuals with autism tend to have higher levels of excitatory neurotransmitters (e.g. glutamic acid) and lower levels of calming neurotransmitters (e.g. GABA, serotonin) causing neurons in the autistic brain to fire excessively. In addition to this, levels of the neurohormone (a chemical that acts as both a hormone and neurotransmitter) oxytocin, which plays an influential role in trust and social behaviours, are also out of balance. Moreover, dopamine (a neurotransmitter which can both calm and excite) is also dysregulated in autism. Together, the action of biochemicals like these influences a number of autistic behaviours and issues such as ADHD, mood, appetite, sleep, anxiety, sensory processing, social behaviours, learning, memory and emotional responses.

Male vs Female Brain

Perhaps one of the most fascinating Β things that I have discovered about autism are the anatomical differences between the brains of the male and female autist. Brain imaging studies have revealed that autistic women have brains that are anatomically similar to neurotypical male brains, and the brains of male autists share anatomical similarities to those of neurotypical female brains.

In short- this indicates that men with autism have feminine brains, and women with autism have masculine brains!!!

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I know!!!!

It sounds weird, but it makes a world of sense. Oftentimes I’ve felt like I had a male brain growing up- my tomboyish interests, my fashion sense, my preference for male company, my inability to walk in heels; it all fits!

Strange but true! πŸ™‚

There we have it Earthlings- hope you enjoyed this brief insight into the physiology of the autistic brain πŸ™‚ There is no clear mechanism through which autism acts, these are just some of the likely pathways involved. I’ll explore other possible mechanisms in a later post.

Have a good week everyone! πŸ™‚

Aoife

 

Autism on Screen- Adam

Greetings Earthlings! πŸ™‚

Today we’ll be taking a look at the representation of Asperger’s syndrome in the 2009 (although filmed in 2005) romantic drama film ‘Adam‘ starring Hugh Dancy and Rose Byrne.

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Adam‘ focuses on the relationship between Adam, a man with AS, and Beth, his neurotypical next door neighbour, as they embark on a romantic relationship. The film charts their relationship from unorthodox origins (Adam unwittingly asks Beth if she is aroused one night when struggling to read her emotions) to (**SPOILER ALERT**) strained ending, as both parties endeavor to better understand the other.

Check out the trailer below:

So how does ‘Adam‘ rank in it’s depiction of autism?

Scientifically speaking, ‘Adam‘ presents the audience with many of the classic characteristics of AS, providing insight into the emotional, sensory and social issues which many of us deal with on a daily basis, such as Adam’s struggles with job interviews.

One of the finer details in the film that stood out for me was how Adam separates different foods on his plate so that nothing is touching. This can be seen in the screenshot below:

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I remember reading ‘The Curious Incident of the Dog in the Night-Time‘ by Mark Haddon as a teenager and identifying with how Christopher does not like his foods to be touching as ‘Adam‘ demonstrates here.

For me, certain foods that touch contaminate flavours and textures so I often endeavor to separate them on my plate. It’s a logical thing- I’m not crazy, I swear!!! πŸ˜› πŸ˜‰

Ironically, I never put two and two together about having AS myself! πŸ˜›

The film is flawed however, in that the character of Adam is a highly intelligent electronic engineer with a photographic memory, further perpetuating the rare savant stereotype…

Dear film makers/screenwriters-enough with the savant skills already! It’s been done to death! πŸ˜›

In addition to this, there is one slightly insulting moment in the film wherein Adam is not considered “dating material” in Beth’s social circle. Granted, Beth largely ignores the advice of friends and family to pursue a relationship with Adam, buuuut (* *SPOILER ALERT**) ultimately agrees that they are from two different worlds and cannot make the relationship work.

Indeed, relationships can be hard for us, but that does not mean that we are incapable of making them work (I know several neurodiverse-neurotypical romantic pairings). One of the biggest problems in the relationship between Adam and Beth is that Adam is unable to tell Beth that he loves her. Believing that Adam sees their relationship practically and not emotionally, Beth makes the decision to break up with him as a result.

As previously discussed (Discussion: Love and Romance), saying ‘I love you’ can be quite difficult for an autist, but that does not mean that love isn’t there. I may struggle to say the words to the ones I love, but love them I do.

In watching the film, it’s obvious that Adam loves Beth, he just has a different way of showing her- something that parents, friends and significant others alike should be aware of. We do love you, it’s just hard for us to show it sometimes πŸ™‚

All in all, ‘Adam‘ is a quirky affair that balances both the positives and negatives of life on the spectrum to give a relatively (we’ll let the high IQ/memory slide this time) realistic insight into the autistic experience πŸ™‚

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Aoife

Social Awkwardness & Autism

Greetings Earthlings! πŸ™‚

Soooo today we’re going to talk about perhaps one of the biggest banes of my life- social awkwardness! πŸ˜›

I’m not going to lie- social awkwardness is not fun. The constant fear of saying the wrong thing or not knowing what to say, the burning sensation in your face that’s never far away (huzzah for unintentional rhyming! πŸ˜€ ).

This article sums up the feeling pretty nicely through gifs’ s:

http://mashable.com/2013/08/15/awkward-gifs/#N36QeeXevGqn

Sitting awkwardly by yourself waiting for friends to arrive in a pub, tapping your glass and constantly sipping just to look like you belong, the pitying glances of bar staff when they see you at a table alone-the awkwardness can be all consuming.

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I can’t tell you how many times I’ve wanted to run from/avoid social encounters because of this awkward feeling.

Awkwardness is worse still when you’re hit by memories of previous awkward encounters! It’s a real domino effect- one awkward memory brings dozens more to the surface until you’re drowning in the red hot embarrassment of a cringe attack! πŸ˜›

I am constantly haunted by memories of my social awkwardness, buuuut as time goes on, you eventually learn not to dwell on your social failings πŸ™‚

It’s a struggle yes, but you can push through the awkwardness. Over the years I’ve devised ways to navigate the rapids- making self deprecating jokes, keeping a mental list of backup topics for awkward silences, chugging a drink you’ve been bought (but don’t like) while your friend is in the bathroom so they don’t see your disgusted facial expressions πŸ˜› πŸ˜‰

Social awkwardness may be a pain, but ultimately you can’t let the fear of getting wet keep you from swimming the social seas πŸ™‚

Who knows-you might even put your awkward stories to good use in a blog some day! Comedy is tragedy plus time after all! πŸ˜› πŸ˜‰

But is there any scientific reason for our social awkwardness?

Remember oxytocin?

Scientists have linked gene variations in the oxytocin receptor (which allows oxytocin to bind and interact with the body) to autism. Evidence indicates that people with autism have a specific variation in the oxytocin receptor (rs53576) which makes it more difficult for them to empathize, read facial expressions and social situations- predisposing us to social awkwardness.

In addition to this, psychologists have suggested that social awkwardness is all about perception. Awkwardness is thought to be influenced by the individuals perception of how a social situation should play out versus reality. If a social interaction does not go as planned…then the awkward turtle swims into view!

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This is a particularly interesting hypothesis. Oftentimes I find myself feeling awkward when silence falls in social settings as I perceive conversational silence to be awkward….aaaand then I tend to ramble on nonsensically to fill that silence! πŸ˜›

In reality, the silence may not in actual fact be awkward. Companionable silence is perfectly natural; the awkwardness I feel may inadvertently be of my own creation!

So it seems that perhaps social awkwardness in autism comes from the disparity between perception and reality in social interaction.

Social awkwardness is also thought to ironically help people improve their social skills! It has been theorized that social awkwardness acts as a warning system to help us to recognize that we have made social mistakes so that we will not repeat them in the future.

Seeing as autists struggle with social communication and interaction, it stands to reason that we often feel awkward so that we might improve our social skills in the future.

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So social awkwardness may in fact serve a purpose in autism! πŸ˜‰

Enjoy the weekend everyone! πŸ™‚

Aoife

Autism and Textures

Greetings Earthlings! πŸ™‚

Today I’m going to talk about something that you may not be aware of in relation to autism- the issue of texture sensitivity.

During my assessment, I was asked by the psychologist if I had any issues with textures. Caught off guard (as I was unwittingly hoodwinked into attending the assessmentΒ πŸ˜› ), I quickly answered no, only to realize hours later that in actual fact, textures influence my life hugely!

In all previous conversations about autism, I had never heard anything about textures, but these are in actual fact a common source of sensitivity for autists.

Rough seat belts, itchy labels and materials, even bras can be extremely irritating to the hypersensitive autist.

There was absolute war between my mother and I when I would refuse to wear a bra as a child! The sensation of the garment against my skin weirded me out and I found it extremely uncomfortable. I would even try wearing it over my thermal vest to place a barrier between me and it, buuuut it didn’t very work well…I was constantly fidgeting! πŸ˜›

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Weird textures completely freak me out- cornflour (a particular pet peeve), some fruits and veg, yogurts (or most foods) with lumps in them and nail files to name but a few.

Encounters with such textures can lead toΒ reactions like these…:

(Fun fact about me- I genuinely shake my head like a dog when I shudder! πŸ˜› )

It’s not all negative though-Β you can learn to adapt and condition yourself to stimuli πŸ™‚ I never drank a glass of water until I was 11 years old as it felt really weird to me compared with other more flavorful drinks. I gradually conditioned myself to it by taking one gulp water followed by one gulp juice (my family found this hilarious πŸ˜› ) until the glass was empty- I now drink pints of water daily without issue! πŸ™‚

Pleasant textures on the other hand pose an entirely different sensory experience, lighting up my brain like a Christmas tree! πŸ™‚

The creamy texture of ice cream or chocolate melting in my mouth, the strangely irresistible and soothing feel of metal against my skin or the drug-like euphoria that comes from stroking a fluffy puppy-sheer bliss! πŸ™‚

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As my sister remarked as I was writing this piece, it’s easier to list the textures that I do like than those I don’t! πŸ™‚ πŸ˜‰

So what’s the scientific reason for this sensitivity?

As we have discussed in previous posts (Autism 101-Sensory Processing;Discussion-Trust, Intimacy and Sexuality), people with autism are hypersensitive to the sensation of touch. Dysfunctions in brain areas involved in sensory integration, in addition to hyper-connected and hyper-excitable neurons within the autistic brain, can greatly influence our responses to texture.

MRI studies of autistic brains also suggest that there is an exaggerated response to unpleasant stimuli in particular within the limbic system- a set of structures involved in such processes as emotions, behaviours and motivation.

It may seem like we’re consciously overreacting to certain textures, but our response is entirely neurological- so try to keep that in mind next time you see us pull a weird face after encountering an unpleasant texture! πŸ˜› πŸ˜‰

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Have a good week everyone! πŸ™‚

Aoife

Autism on Screen- Snow Cake

Greetings Earthlings! πŸ™‚

In continuation from the previous post, today I’m going to have a look at a female character with autism in the 2006 indie romantic-comedy drama (that’s a LOT of genres! πŸ˜› ) Β ‘Snow Cake‘.

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As discussed in my last post, gender bias is often an issue when it comes to women on the spectrum. Autism is viewed as a predominantly male condition, and as such this is reflected in Hollywood portrayals of autism.

We’ve all heard of β€˜Rain Man’, but β€œRain Woman” is rarely seen.

Snow Cake‘ is a really interesting example of this seemingly rare portrayal of autistic women on screen.

Starring Sigourney Weaver and the late Alan Rickman, ‘Snow Cake‘ explores the unusual relationship between Linda (a woman with high functioning autism) and Alex- a man who comes to visit Linda after her daughter Vivienne is killed in a car accident in which he was involved. Feeling guilty that he survived the accident, Alex set’s out to meet Linda and bring her some gifts that Vivienne had bought prior to her death, finding himself reluctantly drawn into her world.

You can view a trailer for this film below:

Before I get into the discussion of this, there is one line in the film (that can be seen in this trailer) that stands out for me:

I know all about autism- I’ve seen that film!”

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Granted, this line was likely included as a slight from the screenwriter, (a parent to an autistic child), towards public perceptions of autism, buuuutttt it does reinforce the importance of not believing everything Hollywood tells you of autism- something that one need bear in mind as to the portrayal of autistic women in this film in particular.

In terms of scientific portrayal of autism, the film gives a fairly accurate depiction of the symptoms.

BUT!

There is one major flaw…

Linda displays mostly male characteristics of autism!!

This is a common problem in on screen portrayals of autistic women as much of the information available to actors refers to male experiences of autism. For example, Diane Kruger was advised by a man with autism for her portrayal of Asperger’s syndrome in the series ‘The Bridge‘. When AS was featured in an episode of ‘Grey’s Anatomy‘ many years ago, a behind the scenes featurette revealed that the actress based her performance on a boy she knew with autism!

For her role in ‘Snow Cake‘, Sigourney Weaver conducted a lot of research into the role and was actually coached by a woman with autism- Ros Blackburn. Aside from her endearing eccentricities however, the character of Linda does not differ greatly from other films featuring male characters.

The problem here may lie in the script for the film, as screenwriter Angela Pell is mother to a boy with autism, and her writing would have been heavily influenced by her experiences.

However, the film does provide a good reflection of the reality of autism in that Linda is not a savant or overtly intelligent as is often over-represented.

In addition to this, Alan Rickman interestingly chose not to research autism ahead of filming in order to accurately reflect the reactions and frustrations that an outsider would experience in an encounter with an autistic individual, adding a further dimension of realism to the film.

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All in all, gender issues aside, ‘Snow Cake‘, while not the most riveting of films (wasn’t my cup of tea) does paint quite a realistic picture of life with autism.

Happy Friday everyone! πŸ™‚

Aoife

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