Levels of Autism

Greetings Earthlings! 🙂

Leading on from my previous posts about the different forms of autism (lesser known ASDs; Asperger’s Syndrome (AS); Broad Autism Phenotype (BAP) etc.), I’d like to talk about some changes in the classification of autism that have taken place since the introduction of the all encompassing ASD in 2013.

To recap- an autistic spectrum disorder (ASD) is an umbrella term to describe a range of neurodevelopmental disorders (such as AS, classic autism, PDD-NOS etc.).

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In 2013, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders or DSM-5 as it is more commonly known, changed the previous diagnostic criteria to effectively subsume all previous separate diagnoses under the one term- ASD. As such, these separate diagnoses no longer exist in the eyes of psychologists.

However, in using the umbrella term without these separate diagnoses, it is difficult to determine levels of functionality among autists.

So how do we break it down?

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Autism is now classified using 3 different levels:

  • Level 1 Autism: Requiring Support- These autists have noticeable issues with socializing and communication skills. This level is characterized by:
    • decreased interest in social interactions or activities
    • capable of social engagement but may struggle with conversational give-and-take
    • difficulty with planning and organizing
    • struggles with initiating social interactions, such as talking to a person
    • obvious signs of communication difficulty
    • trouble adapting to changes in routine or behavior
  • Level 2 Autism: Requiring Substantial Support- Symptoms for these autists are similar to level 1, but more severe as they often lack both verbal and nonverbal communication skills which can make daily activities difficult. These autists may also exhibit a number of behavioural problems
  • Level 3 Autism: Requiring Very Substantial Support- This level is where you will find the most severe cases of autism. These autists experience extreme difficulties with communication and also exhibit more signs of restrictive and repetitive behaviours than may be observed in the other levels.

The behaviours at each level can be broken down a little further than this, but these are the nuts and bolts of how autism is classified under this system.

Until recently, these updates have mainly applied to the American classification system, however in the last few weeks the global updated version of the “International Classification of Diseases” (ICD-11) now mirrors it’s US counterpart, dissolving all separate diagnoses of autism in favour of the all encompassing ASD.

So how do I feel about the dissolution of my own diagnosis?

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In many ways, this new classification system is a good thing as it will greatly benefit autists who experience greater challenges. It also allows clinicians more flexibility in that the clinician determines if a patient is on the spectrum using their best judgement rather than the patient fitting a specific combination of traits/reaching a set number of traits, which may benefit borderline/masking autists who are highly functioning enough to pass just under the diagnostic radar.

However, I am concerned for higher functioning autists. I would classify as Autism 1 under the new system, however, whilst I fit some of the bill for this level in my childhood, it does not describe me as well as my original diagnosis. In fact instead of benefiting an aspie, to my mind, it could in fact disable them further as the very word ‘autism’ infers a greater level of need than Asperger’s Syndrome.

Yes AS is a form of autism, but it is worlds apart from many of the lower functioning forms. If an employer for example were to hear the word’s ‘autism level 1’ or ‘high functioning autism’ rather than Asperger’s, this could have a serious disabling effect in their perception of the autist before them. Indeed, in recent years we have become a more inclusive society and are better educated about the spectrum, but for many the ‘A word’ still rings trouble.

On the other hand, the vagueness as to what classifies as support is concerning for autists at each level. Sure, this generalized approach widens the spectrum net, but we also cannot ignore the finer details and traits that ultimately determine the needs of the autist- every case is unique after all.

Hope you enjoyed this post dear Earthlings- enjoy the weekend! 😀

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- would I still love Harry Potter?! 😛 😉

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

 

 

 

 

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)

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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

 

 

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:

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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!

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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! 😉

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