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Autism 101- Meltdowns

Greetings Earthlings! 🙂

Leading on from Friday’s post, I’d like to place the autistic meltdown under the microscope today.

So what exactly is a meltdown?

To an outsider, meltdowns appear like temper tantrums. You see a petulant, naughty child that didn’t get their way. Screaming, throwing things, violent behaviour- it seems like a tantrum, but the reality is very different.

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Meltdowns are described as a temporary loss of behavioural control in response to an overwhelming situation or stimulus. This can manifest physically (lashing out, kicking, biting etc.), verbally (shouting, crying, screaming) or both.

So what’s happening in the brain that causes these outbursts?

The human body increases secretion of what are known as stress hormones (e.g. adrenaline, cortisol) in response to a stressful situation. Studies have shown that autists have higher levels of these stress hormones than their neurotypical peers.

When a stressful situation passes, stress hormones should return to normal levels. In the case of autism however, these hormones persist in the body for some time afterwards. The autist is left with residual levels of biological stress which make us more susceptible to stress related outbursts.

Release of stress hormones is controlled by the hypothalamic–pituitary–adrenal axis or HPA axis, a complex interconnecting network that comprises the hypothalamus, the pituitary gland and the adrenal gland (i.e. HPA). This system controls how the body reacts to stress. Research suggests that this system is hyper-reactive to stress in the case of autism.

In particularly stressful or harmful situations, our bodies enter a heightened state of physiological stress which triggers the “fight or flight” response. High levels of stress hormones such as cortisol and adrenaline increase the release of glucose (to give a burst of energy) and increase blood pressure (to divert blood to the muscles) in order to prepare you to either fight the danger or run away from it.

This response is triggered in the case of a meltdown.

Excessive stress hormone release pushes the brain over the edge. The brain thinks it’s under attack and instructs the body to protect itself at all costs. The autist is in instinctual fight or flight mode at the mercy of their stress hormones.

Meltdowns manifest differently from person to person. When I would meltdown, it appeared as though I were throwing temper tantrums as I stood and fought my corner; other times I would run away from my trigger somewhere quiet. Sometimes I fought and then ran away.

 

My parents tried everything to get me to control my “tantrums”. Taking away toys, sending me to my room, bribery, guilt, you name it!

Bribery was perhaps one of the more successful tactics they used. My meltdowns were at their worst around the age of 6, so my mother implemented a sticker reward system. If I behaved myself, I got a sticker for the day on the calendar. At the end of the month if I had a full set of stickers I would get a present.

It didn’t really work though…I only managed maybe two months without incident, and I doubt that they were consecutive. I still think fondly of that hard earned Monkees greatest hits tape (such a Hipster child! 😛 ) and Hula Hair Barbie! 😉

Anyone else remember her?

One year, I was even asked to give up losing my temper for lent!!! 😛 I lasted about 4 weeks, had a meltdown and subsequently felt like the worst person in the world for letting Jesus down!

It seemed biology had a different plan- how naive we were! 😛

So what does a meltdown look like for me?

I like to classify the severity of a meltdown on a scale from 1 to 3:

Stage 1: These are very mild and normally pass within a few minutes. Usually these entail getting a little bit overwhelmed and starting to cry unexpectedly- often mid sentence! Think of these moments as opening the steam valve to cool the system 🙂 Maths classes for example triggered many of these mini meltdowns- I wouldn’t understand a concept or problem, get frustrated, aaaannnnd suddenly find myself choking back tears while my exasperated maths teacher attempted to break things down for me (or if this happened mid-homework I’ve been known to throw my book at the wall 😛 ).

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Stage 2: This type of meltdown is a little more intense spreading out over several minutes, hours, and if particularly overwhelmed, on and off again over days. A situation, rumination or accumulation of stress tends to set these guys off. If wound particularly tightly, something very simple may tip the scales in this case- “You don’t want to play with me? FINE!” **Core meltdown activated**! Tears flow, your chest gets tighter and breathing can be difficult. This tends for me to be a “feeling” or cathartic stage. You’re in overload and need to feel, think and process the triggers until the storm passes.

TIP: I find that reasoning and music (songs that relate to the emotion or trigger) often work well to calm you and speed up the process. Hugs are also greatly appreciated as deep pressure calms and eases stress 🙂

In this stage I find that shutdowns can also happen, wherein I struggle to speak, think and even act (an experience I’ll delve into further on Friday 🙂 )

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Stage 3: Enter the dragon! These are full scale, out of control meltdowns. Fight or flight is triggered and you are working on autopilot. The brain has been pushed too far and launches all out war. These tend to be brief, (gradually abating to a stage 2 meltdown when the adrenaline wears off), but are highly destructive. You can literally say or do anything in this heightened adrenal state. Your mind believes it’s at war and will act accordingly to protect itself. Reason is useless; scolds are futile. The real Aoife is locked outside her brain, banging on the door desperately trying to re-enter the cockpit. I’m aware that I’m out of control and want it all to stop, but am powerless to do so. Nothing can be done but wait until the door is unlocked once more.

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TIP: Anger and attempts at restraint are useless in this situation, it only fuels the fire. Remaining as calm as possible until the mist passes is key.

I know these can sound a little scary, but they do decrease in frequency with time and stress management. It takes a significant stressor to trigger a stage 3 for me anymore 🙂 Happy stage 1 meltdown’s, like hearing the Phantom of the Opera overture, can even be quite amusing! 😛 😉

Meltdowns are tricky, but easily managed when you understand them for what they are. In the years leading to my diagnosis, without knowing it, I developed methods to help ease these passing hurricanes. Deep breathing, writing out my emotions, hugging a pillow or giant teddy, talking, and praying, but most importantly music. Music is key for me personally. The melodies, the riffs, but especially the lyrics; they soothe my soul. They verbalize the emotions I’m struggling to identify and process, guiding me safely past the storm 🙂

A meltdown is not a tantrum; it is not attention seeking behaviour; believe me- no one wants it to stop more than I do.

It is a biological response to excessive stress. We have no control over it. Punishments and judgments will only make things worse. Growing up would have been so much easier had my friends, family and (most importantly) I understood this.

Love, support and understanding are critical to meltdown management.

So try not to judge that kid crying hysterically in the corner at a party- there may be far more to it than you realize 🙂

Aoife

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! 😛

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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

 

 

Autism 101- Coordination

Greetings Earthlings! 🙂

Today I’m going to talk to you about coordination difficulties and the spectrum.

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Did you know: Roughly 80% of autists have issues with motor coordination?

And I am no exception! 😛

To be honest, I needn’t even write anything for this post- a host of gifs would fairly accurately sum up my experiences of coordination! 😛

I drop things more easily, I fall over a LOT, bump into things, walk sideways into people I’m walking alongside, fumble a little longer with buttons, laces, hair clips etc. People have often thought I’ve been drunk on nights out (although I don’t drink) when coordination trouble presents itself- giddyness has a habit of rendering me less coordinated for some reason! 😛

These incidents happen so often it becomes another part of daily life- you trip over your feet for no reason, laugh and keep walking! 😛

You might think I’m exaggerating but it happens all the time! Even my dogs have noticed- I once fell flat on my face on a walk and my normally attentive German Shepherd just stood and laughed, waiting for me to get back up! 😛

I’ve always been a little slower than my peers when it comes to mastering my finer motor skills. From my very first skip I’ve struggled with my coordination issues.

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My mother often reminds me of how I used to screw my face up in concentration after dance classes in my attempts to master the skill. I would try and try and try to skip around the room, but kept falling over my own two feet!

Don’t get me started on the struggle to add in a skipping rope! 😛

But nevertheless, each time I fell, I got back up again and persisted until I mastered it- and then you couldn’t keep me from skipping!

This has always been my experience of coordination. I struggle a little bit longer than my peers to develop my motor skills, but with persistence, master them I will. Tying my shoelaces, riding a bike, learning to drive, knitting- all these skills took time to master, but I got there in the end 🙂

Now if I could just master walking in heels, I’d be flying! 😛 😉

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Top tip– Keeping on top of sleep, thirst and hunger can really help to keep your coordination in check. In addition to acting loopy if I fall victim to these, I find that my equilibrium can also be affected.

But what do scientists have to say about these coordination issues?

The underlying cause of these issues is poorly understood, however, recent studies suggest that motor coordination issues in autism are likely linked to abnormal neural connections in the brain. Remember the synapse (or connecting junction point between two neurons) which we discussed last week? Autist’s have an overabundance of these bad boys compared with normally developing peers.

So how does the synapse affect motor coordination?

Motor learning and control is influenced by a specific group of neurons known as purkinje cells. Purkinje cells, (located in the cerebellum- an area heavily involved in motor control), receive signals from climbing fibers- a type of neuron which carries information from the body to the brain. These climbing fibers detect changes or disturbances in our environment, such as changes in space or the position of nearby objects, and relay this information to the purkinje cells. Purkinje cells then emit inhibitory signals at synapses so to modify motor movements accordingly.

In autism however, the efficacy of purkinje cells to influence motor change is greatly reduced.

Normally, each purkinje cell receives input from a single climbing fiber. Autists have too many synapses connecting the brain, and so the purkinje cell receives signals from multiple climbing fibers. This confuses the purkinje cell, which in turn alters the efficacy of corrective signals. Like a game of Chinese Whispers, the more people involved (i.e. synapses and climbing fibers), the more the message get’s lost in translation.

To give an example, if you were walking along and someone threw a ball at you, climbing fibers will alert the purkinje cells to tell the body to move out of the way. In autism….well, the signal to do this get’s scrambled on route to the brain, aaaaand… you’ll likely get hit in the face! 😛

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^^^^Story of my life right here! 😛

At the end of the day, whilst coordination problems can be incredibly frustrating, persist and you will get there 🙂

Never give up- ride that bike, drive that car, skip like there’s no tomorrow!! Autism only limits us if we allow ourselves to be limited 🙂

Aoife

Autism on Screen- Sesame Street: Meet Julia

Greetings Earthlings! 🙂

Earlier this week, popular children’s TV show Sesame Street officially debuted a new puppet with a twist- a puppet with autism! 😀 The character of Julia was introduced as part of Sesame Street’s autism initiative, first appearing on Monday to rave reviews from fans, experts and parents everywhere.

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Whilst only making the news in recent months, Julia has in actual fact been around since 2015, having first appeared in an online storybook about autism as part of ‘Sesame Street’s’ autism initiative- ‘Sesame Street and Autism: See Amazing in All Children’.

The creators of Sesame Street established this initiative in 2015 in order to promote better understanding of the condition after a study revealed that children with autism are more than five times more likely to be bullied than their peers!! This initiative was developed in partnership with autism workers, advocates, parents and autists themselves in order to ensure that the topic is handled in the best possible way.

You can find out more about the initiative here:

http://autism.sesamestreet.org/

It’s a nifty little website providing videos for kids, videos for parents, daily routine cards and loads of other useful materials for children and adults alike 🙂

So what is Julia actually like?

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Julia first appears onscreen quietly painting with her friends Elmo, the fairy Abby Cadabby and Alan. When Big Bird comes on the scene, Julia largely ignores him, completely engrossed in her painting. The other puppets are engaging in finger painting, but Julia makes noises of disgust and uses a paintbrush instead, with Abby remarking that Julia hates the feeling of paint on her fingers.

With their paintings finished, Abby gives Julia’s painting huge praise (it was easily better than Abby and Elmo’s efforts), remarking that she is very creative- casually demonstrating the talents that autists possess without veering into savant stereotypes. Big Bird tries to hive five Julia for her efforts, but still she ignores him, making no eye contact. When Julia hops off to play tag with the other puppets, Big Bird questions whether Julia likes him or not. This leads Alan to explain autism to Big Bird so that he understands that Julia does things a little differently, “in a Julia sort of way“- but she’s also lots of fun! 🙂

Later in the episode, Julia hears nearby sirens and covers her ears in response to the noise, needing to go somewhere quiet for a bit, subtly demonstrating how an autist can struggle with sensory sensitivity. Julia also carries around Fluster, a rabbit toy which she strokes to help her calm down, showing the audience ‘stimming’ in action.

The primary focus of this segment is to demonstrate that although Julia has autism, she can play and be your friend just like everyone else. After Big Bird remarks that Julia is not like any friend he’s ever had before, Elmo and Abby point out that none of them are exactly the same, bird, monster, fairy- they are all different, but are friends regardless. Julia talks a little differently, repeats sentences, flaps her arms when she gets excited- but she’s just another playmate, however different, at the end of the day 🙂

You can watch Julia’s debut in full in the video below  🙂 :

My school life would have been so much easier had other children been better able to understand and accept me as the other puppets accept Julia, but with initiatives like this at work I have great hope for the next generation 🙂

This episode was handled both sensitively and intelligently to provide children everywhere with an insight into autism. All behaviours are explained, little is left for the audience to guess at. Julia is different to the other puppets yes, but the episode normalizes her differences so that when children encounter real people like Julia, they will be treated with acceptance and understanding 🙂

Here’s a behind the scenes look at how the character was brought to life:

Fun Fact: Julia’s puppeteer (who can be seen in this video thumbnail) is a mother to an autistic son in reality!

This was a pleasure to watch and I look forward to seeing all of Julia’s future adventures in the show! 🙂

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Aoife

Inside the Autistic Brain

Greetings Earthlings! 🙂

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

So let’s get down to some science! 🙂

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Hyper-connected Neurons:

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

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

Dysfunction at the Junction:

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

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

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

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Hyper-excitable Neurons:

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

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

Dysregulated Neurotransmitter levels:

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

Male vs Female Brain

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

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

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I know!!!!

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

Strange but true! 🙂

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

Have a good week everyone! 🙂

Aoife

 

A Siblings Perspective of Autism

Greetings Earthlings! 🙂

Going to shake things up a little bit today with an interview!

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When it comes to experiences of living with autism, we hear most frequently from parents and those with the condition themselves. Oftentimes we forget that siblings of children with autism are also living the experience. So today I’m going to interview my sister Órlaith about her experiences of growing up with a sibling on the spectrum 🙂

What am I getting myself into….

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Over to you then Órlaith! 🙂

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Hello everyone! I’m Órlaith, Aoife’s younger (but not youngest!) sister. She’s roped me in today to talk about how life was growing up oblivious to the fact that Aoife has autism… and to provide some lovely anecdotes about some of her finest moments… Muahaha… So let’s get started!

Aoife: Growing up oblivious to the fact that I was on the spectrum, did you ever feel that something was different about me? Did you ever think my behaviour odd?

Where do I start! We always knew that there was something different about you. If you ask mammy I’m sure she will tell you you were born different. I suppose the most stand out things though were your spectacular “temper tantrums”, fantastic lack of tact, and your…amm… preference for always telling the truth…

I never really understood why when you got mad things really escalated like they did, I always thought it was not usual. Aoibhlinn (our other sister) and I would have had our moments but they were nothing compared to yours! Of course now with hindsight it’s easy to see that they were actually meltdowns that you weren’t really in control of but at the time it seemed very odd.

The tact and the truth telling always went/go hand in hand, it definitely wasn’t the norm for someone (in Ireland anyway), to tell you exactly what they think, no sugar coatings. That always struck me as odd. I’ll always appreciate being told that I look terrible… 😛

Looking back on it now, even when we watch old videos of you when you were about 5, it’s so obvious you have autism!

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Aoife: Did friends or other children ever pass comment to you about my “uniqueness” (for want of a better term)?

They did from time to time, which was never easy to hear because it’s your sister that people are talking about.  

Aoife: Did you ever find it hard to relate to me versus Aoibhlinn or other children?

Nah brah, I got your back jack! 🙂 Like, you often took managing but I never had a problem connecting with you, probably because we always liked the same things. And I dunno, you seem to like me or something so I think that helps 😛

Aoife: How did you feel around me when I would have a meltdown? What did you make of my meltdowns?

In general, the initial reaction was “Oh lord she’s at it again”, I think we all just got used to you and thought you were just being dramatic (see that time you threw everything out the window 😛). I’m a pretty anti-confrontation person anyway so when your blow-ups really blew up I really hated it and wanted you to just calm down and see reason, but I now know that when you’re in the middle of a meltdown you can’t see reason! Just having a, what we call, “Aoife Moment™”.

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Aoife: Growing up, even though you’re younger than me, did you ever feel responsible for me, as if you were my big sister?

Now that you mention it, I guess I did. Without being aware that you had autism and that you had to basically be taught how to behave in social situations, I think that I always felt like I had to show you how things work in the world and make you more “streetwise” because those things didn’t come naturally to you. You often don’t see the danger in things so often I feel a bit “big sisterly” and want to try and guard you and take you out of “Aoifeland” (for those who don’t know, this is the magical place Aoife goes to in her head when she zones out and falls down the stairs, spends hours looking at the ceiling, etc.). I still feel like I’m teaching you things every day, so I guess that changes the dynamic, dammit Aoife you’re meant to be teaching me! 😛

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Aoife: What did you know/feel about autism before I was diagnosed?

A hell of a lot less than I know now! Not a whole lot to be honest, I think I thought it was something that’s a lot more of a big deal than it is. I didn’t know how prevalent it is in people, which was a huge eye opener!

Aoife: Did you ever resent me for being different/my behaviours/social faux pas etc.?

A bit because you could have an “Aoife moment” and say something embarrassing about me 😛 Often you could have an embarrassing moment and, sure, that’s annoying, but on the up side, your social faux pas have led to some entertaining moments (“Mammy why is that man so smelly?” (Delany 1994) Oh and let’s not forget your amazing sense of tact, it would be nice to not be insulted all the time, not that you mean to be insulting (I think…… 😛 )

Aoife: How did you feel about/react to my diagnosis?

I wasn’t in any way surprised because as we already talked about, there was always something odd about you! I think it was a good thing for you because it gave you a huge awareness and understanding about yourself and who you are, and that you’re not JUST an oddball, you’re an oddball with Autism! 😉

Aoife: Thanks for that then Órlaith! I bid you adieu! 🙂

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So there we are now Earthlings, I hope you enjoyed this post!

Enjoy the weekend everyone! 🙂

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Aoife (and Órlaith 🙂 )

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

Celebrities with Autism

Greetings Earthlings! 🙂

Today we’re going to take a look at some famous people who you may not realize are on the spectrum.

Susan Boyle

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After achieving viral fame in 2009 for her powerful voice and quirky personality in ‘Britain’s got Talent‘, the Scottish songstress was diagnosed with Asperger’s syndrome in 2012. Boyle had in fact spent her entire life believing that she was brain damaged following oxygen deprivation at birth!

If you have a spare hour, I’d highly recommend checking out her documentary ‘There’s Something About Susan‘ where she talks about her diagnosis 🙂

Dan Aykroyd

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Whilst never formally diagnosed, actor and comedian Dan Aykroyd of ‘Ghostbusters‘ and ‘The Blues Brothers‘ fame believes he has a touch of Asperger’s syndrome. Having read about the condition, Aykroyd self diagnosed with AS based on certain symptoms and autistic traits he possesses, in addition to his intense childhood obsessions such as ghosts.

Daryl Hannah

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That’s right- Daryl Hannah, the sexy siren from ‘Kill Bill‘ and ‘Splash‘ has been quite vocal in recent years about her childhood autism diagnosis. So little was known of autism at the time that it was recommended that Hannah be medicated and institutionalized! Hannah suffers from debilitating shyness resulting in her withdrawal from the silver screen in recent years, but has learned to cope with her symptoms better in adult life 🙂

Courtney Love 

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Controversial ‘Hole‘ singer and widow of ‘Nirvana‘ front-man Kurt Cobain, Courtney Love was diagnosed with mild autism as a child at the age of 9 according to her biography ‘Courtney Love: The Real story‘.

Other spectrum celebs include actor Paddy Considine, the late socialite and TV personality Tara Palmer-Tomkinson, world renowned autism spokeswoman and animal behaviorist Temple Grandin and indie singer-songwriter Ladyhawke.

In addition to this list of confirmed autistic celebs, there are a number of other famous people whom psychologists have speculated are on the spectrum.

Albert Einstein

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Considered by many to have been one of the greatest scientists of all time, Albert Einstein is widely believed by experts to have had had many of the traits associated with AS. Einstein reportedly didn’t speak until he was 4, obsessively repeated sentences and was a loner as a child.

Several other renowned scientists and inventors such as Issac Newton, Charles Darwin, Michelangelo and Benjamin Franklin  were also thought to have had some form of autism

Fun Fact:  Microsoft’s Bill Gates is often cited as an example of AS by experts as he exhibits many autistic traits, BUT he has never in fact been officially diagnosed as such!

Wolfgang Amadeus Mozart

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Many biographical accounts of renowned composer Wolfgang Amadeus Mozart have made reference to his peculiar behaviours such as frequent facial grimacing, repetitive movements of hands and feet, mood swings and impulse control- traits that are often associated with ASD’s.

Numerous other musical legends that are also believed to be on the spectrum include Michael Jackson, James Taylor and Ludwig Van Beethoven.

Tim Burton

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Famed for his dark and eccentric film making, Tim Burton has been informally diagnosed with AS by his former long term partner Helena Bonham Carter following research into autism for a role. After watching a documentary about autism, Burton told Carter that “That’s how he felt as a child”, leading Carter to an “a-ha moment”!

Many experts have suggested that creative writers and directors such as as Mark Twain, Stanley Kubrick, Jane Austen, Woody Allen, Hans Christian Anderson, Andy Warhol and Alfred Hitchcock may indeed have some form of autism.

Looking at all of these amazing individuals, we would all do well to recognize that an autism diagnosis by no means should keep you from achieving great things 🙂

Aoife