Autism and Textures

Greetings Earthlings! 🙂

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 assessment 😛 ), 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! 😛

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 to reactions like these…:

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

It’s not all negative though- you can learn to adapt and condition yourself to stimuli 🙂 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 😛 ) until the glass was empty- I now drink pints of water daily without issue! 🙂

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

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! 🙂

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! 🙂 😉

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! 😛 😉

Image result for nasty taste gif

Have a good week everyone! 🙂

Aoife

March 13, 2017 12

Autism on Screen- Snow Cake

Greetings Earthlings! 🙂

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! 😛 ) ‘Snow Cake‘.

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 ‘Rain Man’, but “Rain 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!”

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.

Image result for snow cake

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! 🙂

Aoife

March 10, 2017 5

Discussion:Women & Autism

Greetings Earthlings! 🙂

Today, I’m going to discuss a very important issue within the autistic community- gender bias and the misdiagnosis of women with autism.

If I asked you to close your eyes and picture a person with autism, the majority of you will have pictured a man (most likely Dustin Hoffman! 😛 ).

The current ratio for male to female diagnosis of autism is estimated at 4:1 as the condition is thought to be rarer in women; however, many experts now believe that this figure may be as low as 2:1.

So why the discrepancy?

Did you know: Women with autism present differently to males on the spectrum?!

Yep- as neurotypical men are from Mars and women from Venus, so too are autistic men and women from entirely different planets (maybe Krypton and Daxam for the DC nerds out there 😉 )!

So how do women with autism differ from men?

For starters, several neurobiological studies have shown distinct anatomical differences between the male and female autistic brain (which I will explore in a separate post at a later stage 🙂 ). Girls with autism are thought to have more active imaginations than boys and participate more in pretend play, often creating elaborate fantasy worlds (I had a particular penchant for this. My sister and I created an elaborate world for our teddies each night, so elaborate that our star couple had their own imaginary portable mansion when we went on holidays!! 😀 ). Reports also indicate that women have lower levels of restrictive and repetitive behaviours than men.

Evidence has also shown that women are better at recognizing emotions than males, almost as well as their neurotypical peers in fact, and demonstrate signs of better attentiveness in social situations.

As a gender, women are more socially inclined than men, and so female autists feel a greater need to make an effort socially. It is expected that women should be more social than men when it comes to communication, and as a result, we are often held to greater social standards. I can’t count how many times a teacher/my mother pulled me aside to advise or chastise me for my social ineptitude! 😛 It was thought that I struggled, not because something was wrong, but that I simply didn’t try hard enough socially. Had I been a boy this would not have been the case.

One of the biggest differences between men and women with autism is the tendency among women towards social mimicry. Girls are particularly adept in masking their symptoms through observation of their peers, obscuring them from the view of parents, teachers and medical professionals.

I’m particularly guilty of doing this. For example, when someone asks ‘How are you?’, I honestly don’t know how to respond! Should I just say fine? Should I reciprocate the sentiment? Should I detail the many ways my life sucks at present?! Three of the simplest words in the English language and I struggle to respond! I eventually developed a mental phrase card in my head for common questions like these so that I would have a standard answer when called for, and 90% of the time you pass for a functioning human being! Other times you get caught off guard and situations like this happen 😛 :

My life is full of these little social coping mechanisms, which I’ll expand on separately at a later stage 🙂

Finally, as previously discussed, when it comes to specialist interests, female autists tend to have interests resembling those of their neurotypical peers (horses, books, soap operas, boybands etc.), which can additionally hide them from view. Psychologists have also noted a ‘mothering’ tendency among peers of autistic girls, taking autists under their wing and adopting them into a social group. This further creates an illusion of social functioning for teachers, allowing these women to further slip beneath the radar.

As a result of all these differences, women are diagnosed much later than men, (men on average are diagnosed in childhood (~7 years); women as teenagers or adults) if at all.

But why it it only now that these gender differences are emerging?

Gender bias in autism can trace it’s lineage to the original observations of both Leo Kanner (described autism) and Hans Asperger (described Asperger’s syndrome) in the 1940’s. In Kanner’s work, ‘Autistic Disturbance of Affective Contact’ (1943), Kanner observed a group of 8 boys, but only 3 girls with autism. Hans Asperger on the other hand, exclusively observed groups of boys, believing that AS was uniquely male! As a result, AS was not described in women until the 1990’s!!

I know!

Consequently, the diagnostic criteria for autism has been largely based on the male model of the condition, and as such, many women like me have slipped under the diagnostic radar.

Due to our inherent talent for social mimicry, women with autism unknowingly find themselves hidden from view. The warning signs that are obvious in males are not always visible, and as a result thousands of women go un-diagnosed, or worse still are misdiagnosed.

Mental health issues such as OCD, eating disorders, ADD, bipolar disorder, anxiety and depression are frequently linked with ASD’s and are particularly prevalent among women.
Experts believe that women with autism tend to internalize their autistic symptoms, leading them to exhibit greater depressive symptoms and experience higher levels of anxiety than male autists.

Women are frequently mis-diagnosed with mental health issues, whilst the underlying root ASD goes unnoticed.

The internet is filled with stories of these women who spent years in mental anguish without receiving the one diagnosis they needed. I recently came across an article where it took “10 years, 14 psychiatrists, 17 medications and 9 diagnoses” before a 21 year old girl got her autism diagnosis! You can read the article here: (https://spectrumnews.org/features/deep-dive/the-lost-girls/).

Researchers and clinicians have in recent years begun to adapt the diagnostic criteria to better serve autistic women, but there is much work still that needs to be done.

‘Rain Man‘ has dominated for too long- we need now to focus on “Rain Woman”.

Aoife

March 6, 2017 29

Autism on Screen- My Name Is Khan

Greetings Earthlings! 🙂

In the next part of my autism on screen series, I’m going to explore the portrayal of autism in the Indian drama film ‘My Name Is Khan‘ (2010).

My Name Is Khan film poster.jpg

A dual Hindi and English language film, ‘My Name Is Khan‘ follows Rizwan Khan, a Muslim man with Asperger’s syndrome, who set’s out on a journey across America to tell the president that he is not a terrorist following a sectarian attack on his family in the wake of the events of 9/11.

Check out the trailer below! 🙂

So how does this film measure up in it’s portrayal of the realities of AS?

The film opens with a disclaimer stating that the film makers have endeavored to depict AS as authentically and sensitively as possible, however, as this is a work of fiction, they acknowledge that certain creative liberties were taken in the portrayal of autism- so as with ‘Rain Man‘, take the film with a grain of salt!

That being said, I found this film to be generally quite accurate from a symptomatic perspective. Granted, Khan appears slightly weirder than the average person with AS and many of his symptoms are exaggerated, but overall I felt that this was a solid onscreen portrayal of autism.

In particular I felt that this film gave a good representation of repetitive behaviors and sensory sensitivity.

Throughout the film, Khan can be seen fiddling with some stones in a repetitive manner.

autism stones my name is khan aspergers syndrome repetitive behvaiour

I may not carry stones around with me, but I am constantly fiddling with my jewelry in a similar manner. It’s a compulsive action- I have this constant need to reach out and feel my chain between my fingers. There’s something incredibly soothing about the motion, especially when you’re particularly stressed. Actions such as these are referred to as stimming or self stimulation. I’ll dedicate a post to stimming at another stage 🙂

As regards sensory sensitivity, I thought that the film presented more of a normalized and subtle reaction to sensory stimuli than most films featuring autism, particularly in relation to Khan’s sensitivity to the colour yellow (there’s a particularly funny moment where he changes direction on the street to avoid looking at someone wearing a yellow top!).

yellow my name is khan

When I first watched this film, I thought that this had to be an exaggeration, but in actual fact, as I mentioned in the last post, boys with autism really struggle to process the colour yellow! Scientists think that this may result from a sensitivity to luminance in autists. Alternatively this may occur as yellow is one of the most heavily sensory loaded colours, as it engages multiple colour detection cells (called cones) in the eye.

Comparing this film to ‘Rain Man‘, there is quite a difference in how autism is portrayed. There was a far greater focus on everything that is good about Khan rather than areas of disability in his life, which can often be exploited in film for dramatic effect. Unlike ‘Rain Man‘, modern films about autism, such as this, have the added benefit of over twenty years of research and observation of the autistic condition, leading to more accurate depictions/attitudes to difference on screen.

Unfortunately however, Khan is depicted as quite intelligent (even called a genius), with superb memory and a savant-like ability to fix any mechanical item known to man, further promoting the stereotype of the autistic savant. These traits however, are somewhat muted in comparison to ‘Rain Man‘, giving a slightly more realistic portrayal of autism.

So there we are- hope you all enjoyed this piece 🙂 I would highly encourage you all to watch this film at some stage. Autism aside, this is an amazing film- one of the best I’ve seen in a long time! In the latter half of the film, you start to forget that Khan is in any way different, finding yourself swept up in this powerful story of love, loss and acceptance. Having watched only the trailer to re-jog my memory, I really want to see this film again myself! 😀

Weekend plans sorted! 😉

Aoife

March 3, 2017 2

Autism 101-Sensory Processing

Greetings Earthlings! 🙂

So today I’m going to briefly introduce you to the issue of sensory processing for people on the spectrum. This is a very broad topic, but I’ll expand on the issues in more detail at a later stage 🙂

Many individuals on the autistic spectrum struggle to process every day sensory information. Sounds, textures, smells, lights, even colours (boys in particular struggle to process the colour yellow) can overload the nervous system and greatly upset us, effect our behavior or even trigger a meltdown.

But why?

In autism, our senses can be either hyper or hypo sensitive (sometimes even both) to stimuli at different times. Our senses are heightened- smells are stronger, sounds are louder. As a result of this, stimuli reverberate all the more intensely in our brains.

Think of the brain as a computer server at exam time where everyone is logging in at once. Too much information has been entered into the system, but the server can only cope with so much. The entire system becomes overwhelmed and the server crashes.

Here’s just a quick video simulation of sensory overload.

Warning for those on the spectrum– this video contains flashing lights, bright colours and loud, sudden noises

For me personally, I have many (mild) issues with sensory processing. Smells, tastes and textures are a daily struggle. For example, I don’t think I’ll ever be able to eat a salad as the smell alone makes me want to throw up- I’m dreading what pregnancy may one day bring! 😛 😉

Loud or irritating noises, (especially repetitive ones), too can be a challenge. Don’t get me started on the shock I get when a passing bus makes that giant hiss/woosh sound or a car honks the horn unexpectedly!! 😛

Most days, you’re lucky and the offending stimulus passes quickly, but other times it can get the better of you. I recently had a near meltdown on holiday from a cocktail of excessive heat, hunger, exhaustion and social frustration.

Top Tip– Keep on top of your hunger/thirst. I’ve discovered this past year that an excess of either will make me act really loopy! 😛

When you’re hit by sensory overload, it feels as though your head is caught in a vice grip. Your mind is screaming, unable to focus on anything else but the source of discomfort.

The worst part of it I find is coming across as a complete basket case when overloaded. You don’t get the most sympathetic of looks when you complain about a persistent noise- few can understand how it’s making your brain hurt.

So what does science have to say about sensory processing?

Sensory integration involves three basic sensory systems:

The tactile system (touch)- comprises a series of nerves passing information from the skin to the brain
The vestibular system (sound)- comprises a series of structures in the inner ear involved in movement detection
The proprioceptive system-a series of receptors in the muscle (proprioreceptors) which feed information to the brain about the body’s position

These three systems share a close but complicated relationship which allow us to experience, process and respond to different stimuli. Dysfunction in this network can cause hyper/hypo sensitivity, in addition to problems with coordination, behavior and academic issues.

Evidence from brain imaging studies has also shown that autists experience stronger responses in the brain to sensory stimuli in areas that process sensory information and the amygdala- an area that is involved in attention, emotional reactions and threat response.

But why is this?

Several studies have found evidence of hyper-excitability and hyper-connectivity in the autistic brain.

Evidence shows that in many cases of autism, the neurons located in the sensory cortex of the brain are more sensitive and excitable than others. 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.

The autistic brain has also shown signs of hyper-connectivity, where regions of the brain are excessively connected- like an overloaded plug!

This amplifies memory formation, sensory processing and causes an autist to be hyper-emotional, which can make the world painfully intense. Scientists have theorized that autists prefer safe, controlled and predictable environments as a coping mechanism to actively avoid this pain.

Finally, studies have indicated that sensory issues, in addition to a number of other autistic behaviors, may be linked to neurotransmitter (chemical messengers between body and brain) levels in the body. As previously discussed, some neurotransmitters are dysregulated in autism. Evidence suggests that in cases of autism, there are higher levels of excitatory neurotransmitters, and lower levels of inhibitory (i.e. calming) neurotransmitters. These high levels of excitatory neurotransmitters cause neurons to fire excessively, which can influence sensory perception and processing.

I’ll expand a little bit more on the individual sensory issues at a later stage 🙂

Enjoy your week everyone 🙂

Aoife

February 27, 2017 42

Discussion-Neurodiversity

Greetings Earthlings! 🙂

Today I’m going to discuss the movement of neurodiversity within the autistic community.

Originating in the late 1990’s, neurodiversity is a concept which suggests that neurological conditions such as autism, are simply a variation in thinking or wiring, rather than a disease that needs to be cured.

Think of iPhones and Windows Phones- both perform similar functions, but each have different circuitry.

Neurodiversity advocates that neurological differences should be considered a separate social category (such as sexual orientation, gender and ethnicity) and respected as such.

The movement is represented by this symbol:

Autism_spectrum_infinity_awareness_symbol.svg.png

^^^ These colours make my brain happy 🙂 😉

Further to this, neurodiveristy classifies people as being either ‘neurotypcial’ (exhibit “normal” cognitive functioning) or ‘neurodiverse’ (autistic).

In a nutshell- neurodiverse people are wired differently, so we think differently; BUT, this difference is the same as any other genetic variation- like having blue eyes or brown.

You follow? 🙂

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However, this movement is seen as controversial and problematic in some circles as this broad term covers both low and high functioning forms of autism. It is thought that the concept of neurodiversity is skewed in favour of higher functioning and milder forms of autism.

This is a tricky one, but not necessarily relevant.

Let’s look at the case of Iris Grace, an autistic child artist.

Iris at 7 years old, is world-renowned for her astonishing and mesmerizing paintings, however, Iris has severe autism. Indeed, she struggles greatly with speech and communication, but her paintings are truly the product of a gifted and neurodiverse mind.

You can see Iris in action below:

Neurodiversity is central to one of the biggest discussions in the autistic community- the search for a cure.

Now if we consider neurodiversity to be a regular genetic variation, this begs an important question- should we be seeking a cure for autism?

Think of the Windows Phone again. Sure it’s not as slick as the iPhone and doesn’t have the same range of apps, but you wouldn’t try to change it very much would you? Updates can be installed to improve the model, but ultimately we accept that a Windows Phone will never be an iPhone. We see them as a separate smart phone category- individual in their own right.

Ironically, I’m a Windows Phone girl in real life! 😛

(^^^Update- Withdrawal of apps has since forced me to go Android 😦 )

If we can accept diversity in the world of electronics, why then do we seek to expunge it from the human race?

The autistic mind is wonderful and unique in its own right. With it comes new insights, quirks and ideas, unique gifts and talents. If we endeavor to cure the autistic community, do we risk the destruction of this uniqueness?

Personally, I would not wish a cure for myself. Don’t get me wrong, there are indeed times when life would be much easier if I could be just like everyone else, but I wouldn’t have my brain any other way.

If I had to pop a camouflage pill everyday to pass for “normal”, how could I still be me? If you took away my autism, would I still see the world as a source of infinite curiosity? Would I still have the same talents and interests?

A family member asked me shortly after my diagnosis, what was I going to do now? What was my plan- as if I had some terrible disease! 😛

Neurodiversity challenges us to rethink our perceptions of autism. It should not be seen as something to be cured, but managed with love and support.

Leading autism expert Simon Baron-Cohen once said that:

“having autism [is] like being a fresh water fish in salt water. In that environment, [we] are disabled. In the right environment, the disability reduces and [we] not only blossom but can fulfill [our] potential.”

It is not autism that needs to be cured, but our attitudes towards it.

And yes for those of you wondering- he is the first cousin of this guy 😉 :

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Freshwater and saltwater fish, Windows Phones and iPhones, neurotypical and neurodiverse- these are all natural variants.

What makes one more desirable than another? Why should one be changed while the other stays the same?

At the end of the day, “normal” is subjective.

Autism is my normal-why would I ever want to change that?

No cure? No cure needed.

I may not want to change my brain, but hopefully I can help to change people’s perceptions of autism with this blog.

Autists may think in black and white, but autism itself is a spectrum of colour 🙂

Aoife

February 6, 2017 16

Discussion-Emotions and Empathy

Greetings Earthlings! 🙂

Today I’m going to talk about one of the most prominent stereotypes for people with autism- that we don’t feel emotion.

We struggle to empathize, and as such, we are often perceived to be emotionless robots.

Nothing could be further from the tru-

‘Kill….Aoife must KILL…!’

So sorry about that… I don’t know what just happened! Now where was I?

Ah yes- murder…I mean emotions! 😉

The notion that autists are incapable of experiencing or showing emotion is entirely false.

In reality we feel too much, so much in fact that we have difficulty processing what we are feeling.

When I’m feeling something, I have a tendency to get overwhelmed by the emotion. Where a normal person may demonstrate no physical response to their feelings, I will likely dissolve into tears.

This may sound normal enough in certain emotional situations…but not for all!

Exhausted? Tears!

Frustrated by maths homework? Tears!

Holding a puppy? Tears!

Just hearing the Disney overture? Tears!!!

The smallest of emotions can completely trigger the waterworks because I simply feel the emotion on a much greater scale. Going to musicals can be a real problem- from the moment I hear the first note I have to catch my breath and swallow hard to keep the floods at bay! 😛

As you can imagine, I’ve spent much of my life as a blubbering mess, but you gradually learn to get a better grip on your emotions 🙂

This past year in particular must be a new record for ‘least amount of time spent crying for no good reason in public‘! 😛 😉

Advice for friends and family: While this behavior is normal, try not to be too dismissive of it. With this emotional hypersensitivity can come a lot of mental anguish. I was branded a drama queen so often that when I was genuinely suffering, very few noticed.

In addition to emotional processing, autists can often struggle to identify and/or describe the emotion that they are feeling.

This is known as alexithymia.

You find yourself gripped by emotion, knowing that you feel something but haven’t the slightest clue what that something is! It can take days, months, sometimes even years to pinpoint what the emotion is in my experience.

Alexithymia makes it difficult for us to not only identify or describe our own emotions, but also to distinguish and appreciate the emotions of others. This is why we often struggle to show empathy. We are not incapable of empathy (scientists have found our emphatic response to equal that of normal peers in areas of moral dilemma, showing even greater responses at the thought of harming others), but we find it hard to correlate your emotions with our own.

For me personally, I often find that in order for me to effectively empathize, I must have firsthand experience of the emotion.

Certainly this has been my experience with grief.

Growing up, I was quite fortunate in that I didn’t lose anyone close to me. As a result, I never really understood how to show empathy or relate to someone going through this experience. Sure I had been to my fair share of funerals, but I never had to interact with mourners.

This caused a lot of problems as a teenager at school…

Tragedy struck, and I did not respond appropriately. I didn’t know the parties involved and as such I carried on as normal with my schoolwork, much to the chagrin of my peers. I knew that the situation was sad yes, but I felt no impact. To my mind I saw no reason to stop the world.

I was branded heartless and widely criticized by teachers and pupils alike, all because I simply couldn’t understand what I had never felt.

It took the death of my dog Oscar to help me appreciate how others felt. For much of my teenage years, I felt as though he were my only real friend, so naturally I was devastated when he died.

Okay, I know he wasn’t human, but that didn’t diminish my experience of grief.

Now when I see other’s grieving, I struggle not to cry to seeing them in pain. Even watching old films from my childhood that never made me cry in the past now leave me in floods of emphatic tears!!

But even with this newfound understanding, I still struggle to convey empathy.

I can see that you’re upset, but I’m never sure of what the appropriate response should be. Do I hug you, hold your hand, touch your arm etc.? One person may want me to hold their hand, another could shove me if I try to comfort them in the same way.

It’s extremely confusing!

I want nothing more than to take your pain away, but I just never know how to show you that.

Sometimes it’s just easier to do nothing rather than the wrong thing.

We may appear cold and aloof, but it’s a very different story on the inside (like a reverse baked Alaska! 😛 ).

Proof if ever there was that you can’t judge a book by it’s cover! 😉

Aoife

February 3, 2017 23

Autism 101-Lesser known ASD’s

Greetings Earthlings! 🙂

Today’s post is going to be short and sweet exploring two of the lesser known ASD’s:

Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
Childhood disintegrative disorder (or Heller’s syndrome)

I know… these are a bit of a mouthful, but once you get past the names they’re not that difficult to understand 🙂

Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS):

As discussed in my Intro to the Spectrum, a pervasive developmental disorder impairs normal growth and development of the brain resulting in a wide range of effects (i.e. autism). PDD-NOS is basically a catch all term to describe individuals who are on the spectrum, but do not fit the criteria for specific ASD’s.

So if you had some of the traits of Asperger’s syndrome for example, but didn’t fully fit the bill, you may be given a diagnosis of PDD-NOS.

This is often referred to as atypical autism.

Childhood disintegrative disorder/Heller’s syndrome:

Childhood disintegrative disorder (CDD) is a rare ASD, estimated to be 60 times less prevalent than classic autism. In comparison to other ASD’s, this low functioning form of autism is quite unusual in it’s late onset.

Children with CDD appear to develop normally before suddenly showing signs of developmental delay around 3-4 years of age. In some cases, there are even reversals in development with loss of speech, motor skills and social function- as if someone hit the rewind button in your brain.

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This is known as regressive autism.

Discovered 35 years prior to autism, to this day, doctors remain baffled as to the cause of this condition.

So there we have it- not quite as complicated as the names suggest 😉

As this is a little more clinical than some of my other posts, I’d like to end on an encouraging note.

Last year, some of you may have come across this viral interview with actor Channing Tatum:

In the video, Channing is interviewed by Carly Fleischmann- a remarkable young woman with non-verbal autism. As a child, Carly was diagnosed with autism, cognitive delay and oral-motor apraxia (the inability to properly coordinate oral movements for speech). At first, such a diagnosis appears devastating, but in this video, Carly proves an ASD diagnosis is not the end of the world.

Through years of persistent therapy and hard work, Carly found ways to communicate by typing with one finger. Although still confronted with the serious challenges of autism, in this video, Carly achieves her dream of becoming the world’s first autistic, non-verbal chat show host! 😀

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When a diagnosis of autism is given, it can be difficult to remain positive. Unlike Dante in Inferno however, we need not abandon hope.

It very much exists.

Whatever your spectrum diagnosis may be, Carly’s story shows that we can succeed in spite of our difficulties 🙂

Aoife

Abbreviations: ASD- Autism spectrum disorder

January 30, 2017 3

Autism 101- Specialist Interests

Greetings Earthlings! 🙂

Today I’m going to expand on the topic of specialist interests (SI’s).

SI’s are one of the defining features of Asperger’s syndrome in particular. Hans Asperger originally described us as ‘little professors‘ due to our ability to talk about our interests in great detail- often droning on in lengthy lectures, completely oblivious to our bored audience….

….so I’ll try my best not to bore you today 😛 😉

As discussed in the previous post, specialist interests are subjects which autists are intensely preoccupied with. These are generally associated with higher functioning forms of autism, but have also been noted in lower forms. Interests can be random items (e.g toilet brushes and deep fat fryers- I have genuinely come across these examples in a research paper!), subjects that are unusual to focus so intently on (dinosaurs, trains, Star Trek etc.) and finally topics that overlap with the hobbies of normally developing peers (horses, music, gaming etc.).

Women in particular tend to have SI’s akin to those of their peers, which can make it harder to diagnose them.

This would have been my experience of SI’s. My most intense interest growing up was that of Harry Potter. It would have been seen as perfectly normal to be ‘potty about Potter’ as a teenage girl during the noughties, but few would have shared my intensity.

This intensity is the major difference between normal ‘fandom’ and SI.

Unlike fandom, your interest can entirely consume you. It’s like an addiction- you are hooked on your interest. It’s not a case of want, but you physically HAVE to get your fix. If you don’t get it, your brain feels like it’s going to explode.

If I didn’t get to see the latest Harry Potter film at the first possible showing, it literally felt like the end of the world. I once made a phone call to my mother after seeing gameplay footage for Harry Potter and the Chamber of Secrets to say that I needed the game NOW (why Aoife!)…even though I knew it was under the tree for Christmas!

But I just HAD to have it in that moment!

Oh but when I got that game- what a feeling!! Even better when I got to experience TWO different versions of the game on both PC and PS2!!!

Talk about shooting up on dopamine! 😀

It’s a little difficult to explain the feeling in words. It’s not just a sense of happiness or excitement, it’s like the atomic bomb version of Beatlemania has gone off in my head- if that makes sense?

Let me try to explain the feeling with gifs, I think these sum it up better:

If you combine all of these at once- that’s what it’s like in my brain.

Kind of a miracle that it hasn’t full on exploded yet 😛

Your interest is more than just obsession- it’s compulsion. Every time that I saw a still from the Harry Potter films in a newspaper or magazine, I was compelled to cut them out to add to my collection. It didn’t matter that I had the same picture six times already, I had to have it! If I didn’t get it, I would genuinely torture myself about that one lost picture, or missed TV special for years afterwards! Even now the residual memory of those missed moments still bother me! 😛

As with all addictions however, you can take things a little too far to get your hit…

One of the most memorable examples of this was my dedication to reading the latest Harry Potter books. Determined to be the first to finish the book, I would read in the car! This doesn’t sound too extreme at first….however, I can get motion sick from looking down while travelling in the car… but I didn’t care!

I read until I threw up and then read some more!!

In addition to this, I was also caught sneaking into my mothers room in the dead of night to nab the Half Blood Prince from her after the midnight opening! 😛 Luckily, we had the sense to buy two copies for the Deathly Hallows midnight release 😉

Such are the lengths we are willing to go to for our specialist interests. You become so intensely focused that you are often blinded as to the lows to which you sink…

penny-needs-help-for-her-computer-addiction-on-the-big-bang-theory

In addition to subjects, people can often become SI’s- especially in women. I’ve definitely been guilty of this at times.

You connect with a person, and like other areas of interest, you want to know everything about them- even the things that are socially unacceptable to ask! When you spend time with that person, it’s never enough. If you see them hanging out with other friends on social media, you feel a pang of regret/jealousy that you weren’t there- as genuinely irrational as you know your feelings to be. I suppose it’s like any other interest, every missed moment with your friend feels like a missed concert for your favorite band- a one off event that can never be recaptured.

You know you’re obsessing and that you shouldn’t feel like this, but you just can’t seem to stop yourself.

Even worse when you inadvertently cling on so tightly that you end up smothering your SI…We don’t mean to act like crazy people, but sometimes it happens.

Word of advice to human SI’s: Just wait it out. We’ll move on to our next interest before long. Just try to understand and love your friend as they are 🙂

So why are we so inclined towards these interests?

Scientists are of the opinion that SI’s reflect some of the heightened abilities unique to autism such as systemizing- the drive to explore, analyze or construct a system. SI’s are also thought to correlate to the severity of social impairment in individuals with autism, serving a role in reducing stress and anxiety.

For me personally, I find that SI’s provide a source of comfort. Life can be pretty overwhelming for people with autism, and sometimes we need to escape. In my own life I have found that some of my more intense interests were born of the flames of turbulent times.

When I was 11, we sold my childhood home and I was completely knocked out of sync. This simple change combined with the joyous trials of puberty had a devastating effect on me. My world was, to my mind, spinning out of control, and I wasn’t coping very well. Around the same time, the Hogwarts Express was just leaving the station, and I jumped on board to escape. The books, the films and the games transported me to another world away from all of my problems. Harry Potter gave me a sense of control, an oar to navigate the rapids of life- which is kind of ironic given the intense hold that SI’s can have over us! 😛

For any parents out there reading this, don’t worry too much about our SI’s. This is perfectly normal behavior! 🙂 And if you’re sick of hearing about your child’s subject- they’ll move on eventually 😉

Top Tip- Experts in the area recommend using SI’s to encourage your child in other areas they may struggle with. I really struggled to study for my exams when I was a teenager, so my mother encouraged me through an SI- gaming. For every hour of study I managed, I was awarded with an equal amount of gaming time. Before long, I was studying without any incentive at all!! 🙂

Have a good weekend everyone! 🙂

Aoife

January 27, 2017 21

Autism 101- Asperger’s Syndrome

Greetings Earthlings! 🙂

In continuation from my previous post, I’d like to introduce you properly to Asperger’s syndrome or AS. More and more frequently are we hearing of the condition, but very rarely is it explained to us. I myself knew relatively little about the disorder upon diagnosis, and that was with a degree in physiology!

So what exactly is Asperger’s syndrome?

Asperger’s syndrome is a form of high-functioning autism. As with all ASD’s, the normal development of the brain is impaired in AS, however, the symptoms are considered less severe. For example, the social communication difficulties experienced by those with AS are much milder than other ASD’s. We may struggle to communicate our intentions, to empathize or to make eye contact, but much of this can be learned and improved with time 🙂

Unlike classic autism, individuals with AS show relatively normal intelligence and language skills. AS is in fact often associated with higher IQ’s, and in some cases savant skills (mathematical genius, eidetic memory, musical/artistic genius etc.).

Stereotype alert!!!- The majority of Hollywood portrayals of autistic individuals depict us as having savant skills. This is a RARE condition affecting between 0.5 and 10% of autists. (So no- I can’t count cards in Vegas with you like ‘Rain Man‘ 😛 ).

Motor development can also be affected in AS. In comparison to my peers, it took me a lot longer to hit some of my finer motor milestones (nearly 3 years to master shoelaces for example). Additionally, people with AS are often quite clumsy- something that I may know a thing or two about…

It’s gotten to the stage where I fall down the stairs so often that my family rarely come to my rescue (I’ve learned to fall with style sustaining minimal injury)! I’m also quite adept at falling over my own feet…the worst fall of my life came after tripping myself up, and not letting go of the Alsatian I was holding…

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…at least we were still in the driveway! 😛

Unusual use of language is also associated with AS. This doesn’t mean that we create our own language or anything weird, but that we have a tendency towards unusual turns of phrase.

I, for example, am particularly fond of using big words- ruminate, cornucopia and ethereal are particular favorites! In my head I can’t see why you wouldn’t use a fancy word like ephemeral or fleeting instead of temporary! 😉 Although this did get me into trouble once with my supervisor for using the word ‘multitudinous’ in a research paper…

Restrictive and repetitive behaviors (like OCD) are additionally found in cases of AS.

These can manifest in a number of ways. There is a tendency towards routine in AS for example- we don’t like change and the uncertainty it brings. In a world that doesn’t always make sense, routine offers stability and control.

One of the most striking features of AS is our tendency towards having a specialist interest. These are intense areas of interest in which we accumulate mountains of information about a single molehill! If you stumble upon one of my interests in conversation, advanced warning- you could be there a while! 😛 😉 I’ll write a separate post discussing specialist interests in detail on Friday 🙂

So there you have it- a quick overview of Asperger’s syndrome! 🙂

These are just some of the typical characteristics associated with AS. If I were to fully explore the symptoms today, this post would likely be the length of a book! But I’ll do my best to break everything down for you as I go along 🙂

Aoife 🙂

Abbreviations: ASD- Autism Spectrum Disorder, AS- Asperger’s syndrome, OCD- Obsessive compulsive disorder

January 23, 2017 35

Tag: aisforaoifenotautism

Autism and Textures

Autism on Screen- Snow Cake

Autism on Screen- My Name Is Khan

Discussion-Neurodiversity

Autism 101-Lesser known ASD’s

Autism 101- Specialist Interests

Autism 101- Asperger’s Syndrome

A Is For Aoife Not Autism