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.

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

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

Aoife

February 6, 2017 16

Discussion-Emotions and Empathy

Greetings Earthlings! 🙂

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

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

Nothing could be further from the tru-

‘Kill….Aoife must KILL…!’

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

Ah yes- murder…I mean emotions! 😉

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

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

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

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

Exhausted? Tears!

Frustrated by maths homework? Tears!

Holding a puppy? Tears!

Just hearing the Disney overture? Tears!!!

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

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

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

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

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

This is known as alexithymia.

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

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

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

Certainly this has been my experience with grief.

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

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

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

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

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

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

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

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

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

It’s extremely confusing!

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

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

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

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

Aoife

February 3, 2017 23

Autism 101-Lesser known ASD’s

Greetings Earthlings! 🙂

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

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

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

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

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

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

This is often referred to as atypical autism.

Childhood disintegrative disorder/Heller’s syndrome:

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

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

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This is known as regressive autism.

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

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

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

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

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

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

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

It very much exists.

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

Aoife

Abbreviations: ASD- Autism spectrum disorder

January 30, 2017 3

Autism 101- Specialist Interests

Greetings Earthlings! 🙂

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

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

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

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

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

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

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

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

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

But I just HAD to have it in that moment!

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

Talk about shooting up on dopamine! 😀

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So why are we so inclined towards these interests?

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

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

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

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

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

Have a good weekend everyone! 🙂

Aoife

January 27, 2017 21

Autism 101- Asperger’s Syndrome

Greetings Earthlings! 🙂

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

So what exactly is Asperger’s syndrome?

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

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

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

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

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

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…at least we were still in the driveway! 😛

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

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

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

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

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

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

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

Aoife 🙂

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

January 23, 2017 35

Autism 101- Intro to the Spectrum

Greetings Earthlings! 🙂

Apologies to anyone who got an email yesterday- my computer had a moment and hit publish with only two lines written! 😛

Today I’m going to discuss some of the basics of autism to better acquaint you with the condition. As a scientist, I’ve read my fair share of research papers on the subject…

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…so I’ll try my best to break it down! 🙂

Autism is defined as a pervasive neruodevelopmental disorder.

“What on earth is that?!”

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This simply means that autism is a disorder that impairs the normal growth and development of the brain resulting in a wide range of effects throughout the body.

Simple enough 🙂

Autism is thought to impair the development of the brain in areas associated with social interaction and communication, however, some studies suggest that the disorder may in fact affect the entire brain.

So how do these impairments manifest?

Typically, people with autism show deficits in three main areas:

Social communication
Social interaction
Social imagination (this basically means that we struggle to predict the reactions of others, understand abstract ideas, imagine situations outside of daily routine etc).

These are known as the ‘triad of impairments’. There is also a fourth area of impairment describing struggles with sensory processing (touch, sound, light etc.), but ‘tetrad’ doesn’t quite have the same ring to it!

Each autistic person has their own unique blend of symptoms ranging from mild to severe (there’s FAR too many to detail in this post alone). No two individuals with autism are the same.

Forget about the stereotypes- if you’ve met one, you’ve met only one.

Here’s a little schematic I threw together showing how symptoms can vary using academic ability as an example:

Such variations led to the catch-all concept of the autistic spectrum.

Everyone exhibits some autistic traits (my friends have remarked that the more traits I describe the more they think they have autism! 😛 ), but it is when you exhibit a high number of these traits that you are diagnosed with an autism spectrum disorder (ASD). For example, the average person scores ~15-17 out of 50 on the autism-spectrum quotient test, whereas the average autist scores 35 (I scored 38…!).

There are currently four separate ASD’s listed on the spectrum– Asperger’s syndrome (yours truly!), autistic disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (PDD-NOS). I’ll write separate posts about these in due course 🙂

So what actually causes autism?

In truth- we don’t know for sure!

Most evidence points to a genetic cause as autism can be hereditary, but there has been no one autism gene isolated. As autism operates on a spectrum, it’s likely that there are numerous factors at play in each ASD. The current thinking is that lot’s of smaller gene mutations combine to cause autism. Like the X-men launching an attack! 😉

As interesting as the science of autism is however, it can’t really explain the experience.

The easiest way to explain it I find, is to consider Supergirl.

Supergirl is an alien from the fictional planet Krypton. The elder cousin of Superman, she arrives on Earth as a teenager, a stranger in a strange land. She looks like a human, talks like human and for the most part acts human, but Supergirl does not see the world as a human does; she perceives the world as a Kryptonian. When she first arrived on Earth, Supergirl had to learn to blend in. She would have struggled to learn our customs, sayings and social ways, all the while concealing her true alien self lest she be ostracized, just as I’ve had to do.

That’s what autism feels like- being an alien from another planet. What’s normal for you seems weird to the rest of the world. Social rules confuse you, you interpret things differently and find yourself spending much of your time hiding your quirks from sight.

As I’ve discussed in previous posts however, the autistic experience, while different, is not necessarily bad. With different perspectives and brain chemistry come different abilities. Like Supergirl, many of us have unique gifts and talents to share.

I can’t say that I have laser eyes or the ability to fly like her, but I am pretty handy with a set of knitting needles creating patterns off the top of my head! 🙂 Knitting was a struggle for me at first- I was the WORST in my class for years, but one day it just clicked! Something I was once terrible at could now be considered a superpower of sorts!

sgsd

This is one thing that I’d like to emphasize in these blogs- struggle. You’ll find that I will never use the word ‘can’t’ in relation to autism.

In these posts, I want to highlight that yes, autism is a struggle- life can be bloody hard at times; but just because we struggle, does not mean that we are not capable, or that we should be treated as such.

I have struggled with many things in life- learning to drive, knit, dance, tying my shoelaces etc.Yes, indeed I struggled, but that didn’t mean I wasn’t capable, it just took me a little bit longer. Like Supergirl, the struggle passes and you learn to adapt.

The hardware in our brains may be a little different, but with software updates, patches and a little patience, we can learn to function as well as any other computer 🙂

Aoife

PS- For the budding writers out there struggling with writers block as I did this week, shopping helps! 😉

January 20, 2017 15

Tag: autistic experience

Discussion-Neurodiversity

Autism 101-Lesser known ASD’s

Autism 101- Specialist Interests

Autism 101- Asperger’s Syndrome

Autism 101- Intro to the Spectrum

A Is For Aoife Not Autism