Does Autism Make Me A Bad Person?

Greetings Earthlings! 🙂

So today I’m going to share with you something that I’ve been musing on a lot lately:

“Does autism make me a bad person?”

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When it comes to autism, there is a very fine line between bad behaviour and autistic behaviour.

To an outsider, meltdowns appear like temper tantrums. Inappropriate statements and behaviours seem to hint at a naughty child.

It can be very hard to discern the difference.

As a child, I spent much of my time being branded as naughty. Growing up in an Irish household, I was no stranger to the dreaded wooden spoon…

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I was notorious for my “temper tantrums”, I always seemed to say and do the wrong things, and I consistently found myself fighting with those around me. In short, I was a nightmare!

Worse still was the nightmare I lived on the inside.

I never could understand why I said or did bad things back then. My sisters never seemed to find themselves in the trouble that I always did. Something simple would just set me off like a rocket and there would be no turning back. After the smoke had cleared, sitting in a pool of tears surrounded by the wreckage of a meltdown, I felt like the worst person in the world.

“Why did I say that?”

“Why did I throw lego at my parents?”

“Why was I so violent?”

I was always left shocked and appalled my behaviour, crying for hours afterwards at the consequences I faced.

Oftentimes I felt as though I were little more than a criminal. My parents even threatened my bad behaviour with the police on a number of occasions- once going so far as to put my PJs in a plastic bag after telling me that they were coming to take me away! 😛

I tried so hard to behave, but I never could seem to keep it up for more than a few weeks. As I’ve told you before, I even tried running away because I couldn’t be good and felt obliged to leave.

But none of this behaviour was ever intentional.

Autists have no control over meltdowns; the brain is completely overwhelmed. In this state, literally anything can happen. Like Elvis, any trace of rationality has left the building. I’ll explore meltdowns next week in greater detail.

My tendency towards mimicry and my twisted sense of logic also impacted my bad behaviour.

I graffiti-ed a desk in school after perceiving previous samples around me to be the norm, I practiced swearing like a sailor and flipping the bird (I struggled with the dexterity of it) before secondary school to blend in – I even forced the habit of chewing pens as I thought that I needed a “bad” or “cool” habit when I went there!!!! Don’t ask me how I rationalized that one! 😛

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Not good for your teeth kids!

Over the years I’ve better learned to control and prevent public meltdowns and restrict my social faux pas’, but on occasion I will wind up in a spot of bother just like everybody else.

Autism has huge influence over my behaviour, but do my actions make me a bad person?

This is a tricky one.

I’m not perfect. I often say or do things that can rub people up the wrong way, but for the most part, I don’t intend to do people wrong. Having been wronged many times in my own life, the thought of hurting another person greatly upsets me. When I unintentionally put my foot in it, I’ll torture myself for hours, weeks, even years afterwards for my missteps.

But I’ll always try my hardest to make amends and be better.

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Even before I received my diagnosis I made serious efforts to try to modify my negative social behaviours. I oftentimes find that I overcompensate with my friends for fear of being perceived as bad like my childhood all over again. I’ll proofread your project at 2 in the morning, I’m always baking and making gifts, I even overcompensate with emojis for fear of the wrong sentiments coming across. I forever spend my days worrying how others may take me up wrong.

I’m constantly in a state of high alert that I’ll do something bad. In many ways I’ve spent much of my adult life trying to be the sort of person that I couldn’t seem to be as a child, as if by being good now somehow undoes the wrongs, or acts as a safety net in case I meltdown or lodge my foot in my mouth.

Yes, there are times in my life when I can be bad, say or do the wrong things or lose control; but that doesn’t make me bad. Autism can make me act badly sometimes, but it doesn’t mean that the person is bad.

I’m by no means Mother Teresa, but I’d like to think that I’m a good person 🙂

That being said, just because a person is autistic, does not mean that they are entirely blameless if they act badly. Indeed, much of my poor behaviour as a child can be attributed to autism, but there were also times where I knowingly chose to be bad, just like any other child.

Autism can’t always be used as an excuse for my actions.

Some psychologists for example, have theorized that Hitler likely had Asperger’s syndrome, but we couldn’t give him a free pass now could we?

Autism is a spectrum– there are both good and bad among us. We are human, we make mistakes- we just tend to make a few more of them than others 😉

Having autism doesn’t make a person bad, it merely makes us human 🙂

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Aoife

Vaccines and Autism

Greeting’s Earthlings! 🙂

Yep…I’m going there today- the autism vaccine controversy.

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This issue has been thoroughly debated by scientists in recent years, so I’m going to discuss this once, and once alone.

In 1998, the now completely discredited scientist Andrew Wakefield published this paper in The Lancet:

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Notice the word ‘RETRACTED’ in bold red letters.

In this paper, Wakefield suggested that the MMR (measles, mumps and rubella) vaccine is linked to inflammatory bowel disease and autism.

This is what I like to call:

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Subsequent to the publication of this paper, serious conflicts of interest and falsified data were discovered. This led to the paper’s ultimate retraction and Wakefield was struck off the medical register in the UK. Countless studies have endeavored to replicate the results of Wakefield’s work, but none have succeeded, proving that there is no medical link between the MMR vaccine and autism.

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Here are the real facts about the case:

Wakefield’s work had multiple conflicts of interest:

  • When the paper was first submitted for publishing, he failed to disclose that he was in receipt of funds (~£435,000 or $674,000) from lawyers acting on the behalf of parents that believed the MMR vaccine was harmful!
  • During the course of his investigation, Wakefield filed a patent for a new measles vaccine, standing to gain financially from the downfall of the currently available vaccine
  • Patients were recruited to the study through anti-MMR campaigners

Several ethical codes were broken by Wakefield when conducting his research:

  • Wakefield unethically collected blood samples from children at his son’s birthday party (reportedly for £5 a pop)
  • Patients were subjected to unnecessary invasive procedures such as lumbar punctures and colonoscopies without prior ethical approval
  • The company that Wakefield sought to establish following the paper’s publication was to be headed by the father of one of the patients included in his study
  • Wakefield further tested out his new measles vaccine on a child without recording it in his medical notes or discussing it with the child’s GP
  • Most serious of all- Wakefield falsified and manipulated his findings!! It was discovered that Wakefield had either misrepresented or altered medical histories in ALL cases described in the study!

Aside from evidence tampering, the design of the study was quite poor. Wakefield’s research examined a very small patient cohort (only 12 children) using case reports- one of the weakest forms of medical research. Large scale studies examining hundreds of thousands of cases have not established a link between the vaccine and autism.

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Of the 12 children examined in the study, 5 showed signs of developmental delay prior to receiving the MMR vaccine, and a further 3 patients did not in fact have autism.

But what of other research in this area?

Studies which are often cited in the MMR controversy suggest a link between thimerosal, (a mercury containing compound), in vaccines and autism- a link which has been largely refuted. Additionally, thimerosal has been removed from or reduced to trace amounts in currently available vaccines- but autism rates still continue to rise.

Studies have also been conducted to explore the impact of the anti-vax movement on autism rates. These studies compare autism rates in those who did and those who did not receive the MMR vaccine. The result- no difference in autism rates between both groups!! 

Furthermore, following the publication of his paper, Wakefield proposed that 3 separate vaccines for measles, mumps and rubella was a safer alternative to the combined vaccine.

But did he have a point?

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Nope- in countries where the practice of giving 3 separate vaccines at 3 separate stages was adopted, autism rates continued to rise regardless.

So there we have the facts about the MMR vaccine controversy. If you’re still a little bit skeptical, I’ll leave you with one final thought:

Wakefield has repeatedly refused to deny or replicate the findings of his study. If there was nothing to hide, then why not prove his claims?

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Aoife

Impulsivity and Autism

Greetings Earthlings! 🙂

In continuation from the previous post exploring curiosity and autism, today we’re going to take a look at impulse control in autists.

Many people with autism report issues with impulsivity.

All my life I’ve struggled with this issue. Too often I’ve felt like Didi in ‘Dexter’s Laboratory’, dying to know what the button will do and being unable to keep myself from pushing it! 😛

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As a child I was highly impulsive. I never knew when to stop eating, would impulsively give up on a book halfway through in favour of another (at one point I had 9 books on the go!)  and when overwhelmed I would often try to run away.

During one particularly interesting meltdown I began to impulsively throw all items that my mother had given me out of my bedroom window (which is a storey high I might add), whilst my sisters in the room below gleefully retrieved them, each determined to claim ownership…Clear example of black logic at work! 😛

So why do we struggle with impulsiveness?

Impulsivity in autism can be explained by deficits in what is known as executive functioning.

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Don’t worry- it’s not as complicated as it sounds! 😛

Executive functioning is simply a broad umbrella term referring to the mental processes involved in cognitive, physical and emotional self control. Examples of executive functions include planning, memory, cognitive flexibility (the ability to adapt thinking to new and unexpected situations) and most importantly response inhibition– aka the ability to suppress unnecessary or inappropriate actions.

But what causes these deficits in executive functioning?

Many autists also suffer from attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD), both of which have an effect on executive functioning and impulsivity. I’ll explore these disorders at a later stage 🙂

Experts believe that ASD’s share a common genetic basis with ADD and ADHD, indicating that genetic mutation may be at the heart of these deficits in executive functioning.

Impulse control can be quite challenging at times (it’s a real struggle not to run squealing to every single puppy I encounter for a cuddle! 😛 😉 ) but as I always say, it is by no means a cause for despair. You will eventually learn control with time 🙂

Granted I can still be quite impulsive at times- feeling the urge to curl up asleep on the floor like a dog in company (an urge I feel quite a lot! 😛 ), wondering what it would feel like to step on hot ash/coals or wanting to draw designs all over my face with makeup; the difference being that now I am able to choose whether to ignore or act upon an impulse 🙂

Well…for the most part! Still haven’t fully cracked compulsive eating…or maybe I just don’t want to! 😛 😉

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Enjoy the weekend everyone! 🙂

Aoife

Curiosity & Autism

Greetings Earthlings! 🙂

Today I’m going to explore an aspect of autism that’s not widely discussed- curiosity 🙂

Many people find that curiosity is in fact diminished among members of the autistic community because of our preference for routine. In my experience, the opposite is true.

To quote Albert Einstein, who is widely believed to have been on the autistic spectrum:

“I have no special talent. I am only passionately curious.”

Passionately curious.

That’s how I would describe my insatiable sense of curiosity about the world.

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Throughout my entire life I have been driven by my desire to acquire knowledge. The words who, what, when, where, why and how are rarely ever far from my lips. For me, it’s more than just a desire, it’s a need.

I need to know how the world works, I need an encyclopedic knowledge of those I care about, I need to know why did the chicken really cross the road??!!

If I had had Google as a child I would have been a nightmare! 😛

If I don’t get the answers I crave, it drives me insane, getting under my skin like an itch I can’t scratch. A friend recently told me she had news for me right at the exact moment I lost my WiFi signal! I nearly screamed with frustration over the next two hours trying to reconnect long enough to find out what her news was!!

Curiosity does have its uses though when it comes to the likes of science, motivating you to stick with the building blocks that will one day lead you to understand entire systems.

Buuuuuttt…as we all learned from ‘Alice in Wonderland’, curiosity can sometimes get us into a spot of bother…

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Many autists have issues with impulse control (which I will explore in detail on Friday 🙂 )  and as such, in my experience, curiosity can be impulsive.

For instance, I scorched the kitchen door as a child when I set fire to a drawing with a candle out of curiosity…

Another such incident (which I have no memory of but have been assured happened 😛 ), saw my younger cousin and I trap my kitten between two buckets until my horrified mother caught us in the act!

The only explanation that I can offer for my behaviour based on similar experiences is that I was interested to know what would happen! 😛

Thankfully in this instance, curiosity did not kill the cat! 😉

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Curiosity can also be an issue in social situations. Countless times I’ve landed myself in hot water for asking inappropriate questions, often unintentionally coming across as nosy. As with all things autism however, with time, you learn to reign in your curiosity and channel it towards something more positive, like keeping up with the latest research 🙂 (even if the unasked questions do irritatingly press on the brain 😛 )

But why am I so curious?

Unfortunately, I don’t have much to offer in the line of concrete scientific explanation I’m afraid. There doesn’t appear to be much research in this aspect of the autistic experience.

However, in terms of the general science of curiosity, the neurotransmitter dopamine plays an important role. Curiosity activates brain regions associated with pleasure and reward through the activity of dopamine, giving us that pleasurable feeling of satisfaction when our curiosity is quenched. Many addictive drugs operate through this pathway, so you could say that I’m addicted to learning! 😉

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In autism, dopamine levels are dysregulated, which may influence curiosity as a result. Moreover, increased activity in the midbrain is associated with curiosity. Brain analyses of autistic individuals reveal structural changes in this region, suggesting that perhaps these changes contribute to and account for differences in curiosity levels among autists.

Stay tuned for Friday’s post where we’ll be putting impulsivity under the microscope! 🙂

Aoife

Social Awkwardness & Autism

Greetings Earthlings! 🙂

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

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! 😀 ).

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! 😛

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 🙂

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 😛 😉

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

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

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! 😛

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.

So social awkwardness may in fact serve a purpose in autism! 😉

Enjoy the weekend everyone! 🙂

Aoife

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! 🙂

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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! 🙂 😉

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! 😛 😉

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Have a good week everyone! 🙂

Aoife

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! 😛 ).

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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?!

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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 😛 :

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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!!

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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”.

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Aoife

Discussion: Love and Romance

Greetings Earthlings! 🙂

In continuation from my previous post, today I’m going to expand a little bit more on the social problems autists experience in romantic situations.

We’ve already explored some science on the subject, so now I’m going to try and clue you in a little bit on what it’s like inside my head 🙂

As a person with autism, my life is often governed by rules- don’t tell lies, never go over the speed limit, don’t put raisins in a scone (a serious crime against cake! 😛 )!

Hence when it comes to socializing, things start to get tricky. Even trickier in matters of the heart. Rules exist when it comes to love, but these rules are in a constant state of flux- and I just can’t seem to keep up! 😛

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Social rules are a cornucopia of contradictions- a source of constant frustration for the black and white autistic mind.

Opposite’s attract, but birds of a feather flock together. Absence makes the heart grow fonder, but out of sight is also out of mind. Treat them mean to keep them keen,  but do unto others as you would have them do unto you.

It’s enough to make your brain explode!

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The majority of autistic people want to love and be loved as much as anyone else, however, when the goalposts keep moving and the game keeps changing, it can be extremely difficult to navigate the battlefield of love.

Growing up, love always seemed so easy on screen. Boy meets girl, boy asks girl out on a date- both know where they stand and so relationships blossom.

Easy peasy right?

Wrong! 😛

Boy was I in for a shock when I got smacked with the reality stick! I was in no way prepared for the games that teenage boys play with your mind and heart.

Wide eyed and innocent, I believed the boys who said they fancied me, I believed the so called friends who encouraged me- but all along I was being set up for a fall. It was all just a game to mess with the weirdo who’d never been kissed, and I never saw it coming.

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In hindsight when I see pictures of my atrocious hair cut at the time, I really should have seen through them! 😛

I was in for an even bigger reality check when it came to night’s out.

People grabbing you on the dance floor, stinking of booze and cigarettes, expecting you to just fall into their arms! Whatever happened to chat up lines, buying someone a drink, or even just learning their name? I struggle with things as innocent as hugs, how was I meant to cope with this invasion of space, not to mention the sensory fallout?!

This wasn’t the path to romance, this was carnage! 😛

If you are one of the lucky few who can get past this awkward stage to forge a real connection, communicating one’s feelings can be a real struggle for an autist. Saying the words ‘I love you’, even to family members, does not come naturally for me. I can tell my dogs I love them a thousand times a day, but ask me to say it to my parents and I freeze. It’s not that I don’t love them, I just can’t seem to get the words out…

Advice for family and significant others (SO): Don’t take this struggle personally. Your child/SO does really care about you, they just struggle to show it 🙂

Psychologists are of the opinion that we don’t see a need to repeatedly tell people that we love them, and hence we don’t say the words. Personally, I’m not sure that I’d agree with this explanation. I do want to say the words, they just won’t come out. In their absence, I’ve learned to do what I can through action to show people I care- a cake or a knitted present say more than I ever could 🙂

When it comes to romantic situations, this struggle for words is multiplied tenfold! With so many conflicting rules about showing affection or revealing your feelings, as with empathy, sometimes it’s easier to stay silent. I weigh up all the options, assess every social rule, turn myself upside down and inside out over my feelings- and then do absolutely NOTHING about it by default! 😛 Painful as it is, sometimes it just feels like the easiest option. There’s no drama, no outright rejections, no awkward moments…but also no requited love! As a result, I’ve landed myself in the friend-zone more times than I can count! 😛

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Over the years I’ve become a little more assertive in this regard. I eventually work up some bit of courage to communicate my emotions, but it’s still a real struggle to get there. I frequently undergo these periods of hyper-analysis prior to opening my mouth!

Advice for SO’s/potential SO’s: Be direct and let us know how you feel. We can’t read between the lines, we struggle to comprehend the rules of love and fathom the games- the direct approach is the way to go. The object of your affections may seem aloof, but they might simply not know how to act on their emotions. Just ask them out- their answer may surprise you 🙂

If my future husband happens to be reading this- when you meet me, no games please! 😛 😉

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Happy Valentine’s Day everyone! 🙂

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Aoife

Discussion-Trust, Intimacy and Sexuality

Greetings earthlings! 🙂

As we are approaching Valentines Day, I thought it would be interesting to explore the romantic side of autism a little bit.

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When it comes to romance and the spectrum, this is what most people think of:

Prior to my diagnosis, I too would have pictured this scene.

Asexuality, or lack of sexual attraction/interest, is often associated with autism. However, whilst asexuality occurs more frequently in the autistic community compared with the neurotypical population, one size does NOT fit all.

Stereotype Alert!!! The majority of people with autism are not asexual- we want to experience love just as much as the next person!

In fact, studies have shown no marked differences in sexual interests and behaviours when compared with neurotypicals…we’re just a little bit worse at the whole initiation/communication side of relationships! 😛

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Our social struggles can make it quite difficult to convey our intentions and feelings in romantic situations. As previously discussed (see empathy), we struggle to identify our own emotions to ourselves, let alone convey them to another person!

According to Asperger’s expert Tony Attwood, there is a tendency among adolescents with AS to seek out the relationship advice we are lacking from rather unreliable sources… Males tend to derive their information from pornography, while girls turn to soaps, rom-coms and books, failing to recognize that these works are not reflective of the real world.

You may think that surely we would be able to tell fact from fiction…. buuuutttt, this is a fairly accurate description. I’ve be been burned this way in the past! Let’s just say that I attempted to apply something I read in a book to reality…and it backfired…spectacularly! 😛

In addition to these social struggles, the sensation of touch can also be an issue for many people with autism in romantic entanglements. Studies have shown that gene mutations associated with autism can cause hypersensitivity to the sensation of touch. As a result, we oftentimes shy away from physical contact, which can give the impression of romantic indifference.

Advice for friends, family & significant others: If we brush off your touch, it’s generally nothing personal. Just be patient. We can learn to condition ourselves to touch over time 🙂

In my own experience, trust can be especially important when it comes to physical intimacies.

Thankfully, I’m not particularly sensitive to touch, but I don’t like people I don’t trust having physical contact with me.

For example, contrary to common autism stereotypes, I very much enjoy a nice hug- but only if I trust/feel comfortable around that person.

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I’ve always felt that hugs are an intimate experience, so for me to hug someone that I don’t like or trust feels wrong. Over time I’ve conditioned myself to accept unwanted hugs to uphold social etiquette, but my heart’s not in the action.

Many people with autism have issues with trust. In a world that doesn’t make sense , it can be very hard to discern what is trustworthy from what is not. Where black and white thinking is concerned, one bad experience can ruin your trust in an instant.

But ruins can be rebuilt- it just takes a little bit of time 🙂

 

Considering all these challenges that we face in the pursuit of love, might there be any underlying biological factors contributing to our romantic ineptitude?

Few studies have explored sexuality and relationships in autism, however, from my reading of the research one hormone stands out from the crowd- oxytocin.

Oxytocin, also known as the ‘love’ or ‘cuddle’ hormone, has been linked to autism in a number of studies. Research has shown that levels of oxytocin are dysregulated in individuals with autism.

This is basically a fancy science term meaning that our oxytocin levels are out of sync! 😛 😉

Oxytocin is thought to contribute to a human’s ability to effectively socialize. For example, studies correlate oxytocin levels to degree of social functioning where low oxytocin levels are linked with diminished social functioning and high oxytocin concentrations are associated with augmented social functioning.

Evidence suggests that levels are lower in cases of autism, with the lowest concentrations in low functioning forms and higher concentrations in high functioning cases.

Oxytocin is perhaps best known for it’s role in the formation of emotional bonds, as it is released when we cuddle up to or bond socially with a person. Research suggests that it even plays an important role in emotional bonding with man’s best friend, with levels rising in both owner and pet after several minutes of stroking! 🙂

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Oxytocin has further been shown to increase trust in humans, so it stands to reason that lower oxytocin levels present in autism can make it harder to trust, interact with and connect with a person romantically.

Moreover, recent studies indicate that oxytocin also plays an important role in the strengthening of negative social memories. It appears that following a stressful social encounter, such as bullying or romantic rejection, oxytocin activates a part of the brain which causes the memory to intensify, promoting anxiety and fear in similar situations.

Seeing as oxytocin is dysregulated, this could also explain why autists find romantic situations difficult. I’ve certainly found that previous failures in this area have made me quite hesitant to reveal my feelings to guys for fear of reliving those moments!

Autism, like love, is truly complicated 😛

In keeping with my Valentine’s theme, I’ll discuss love and the spectrum in greater detail on Monday! 🙂

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Aoife

 

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:

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^^^ 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.

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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

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