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

Supporting a Child with Autism

Greetings Earthlings! 🙂

For a change today, I’d just like to write a quick post for all of the autism parents out there.

I recently received an email about special needs parenting and it got me thinking about ‘autism parents’. How they must be feeling, the difficulties they face, the struggle to understand, teach and support their child. They really should be called ‘awesome parents’- I certainly didn’t make life easy for mine! 😛

Autism is not the easiest of diagnoses for a parent to hear, but there are many simple ways that you can support your child. Granted, I’m not an autism parent, but as someone who has been on the other side of the fence, I’ll do my best to give you my top tips to support and encourage your child 🙂

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Educate yourself– Read, read read! Understanding is key to helping your child. A mechanic can’t help your engine if he doesn’t know how it works first.

Don’t believe everything you read–  You’ll quickly learn that one size does not fit all when it comes to autism. Each case of autism is different, every autist will have different needs and experiences to the next. The advice and experience of others can be useful, but remember to take everything with a pinch of salt.

Try to put yourself in their shoes– The world is often alien to us, we don’t always fit in or understand it’s ways. We don’t mean to act weird or meltdown and cause trouble, but oftentimes our brain has other ideas. Try to understand how we see the world before you judge us too harshly 🙂

Know their limits, but don’t limit them– This can be a challenging balance to strike. As I have discussed previously, we should endeavour to understand the capabilities of autistic children, but we must not use autism as an excuse– explanation yes, but never excuse. When we repeatedly excuse an autists behaviour, or tell them they “can’t” do something, we keep them from reaching their potential. For example, as a child, I could not seem to master the humble skip. Had my parents told me to give up due to my coordination difficulties, I would never have overcome this struggle- and would have looked pretty stupid in school shows where such simple choreography was the cornerstone of many a dance number! 😛 😉

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Never underestimate the power of small victories– whether it’s getting your child to wear a bra, tie their shoelaces or a mastered skip, sometimes it’s the little steps that can have the greatest impact. Had I not overcome my seemingly left feet, I would not have discovered a love of dance, never danced on stage or gone out to clubs. Without this small victory I would never have gone on to help choreograph my school play or even teach dancing to kids as a teenager! The victories seem small, but they just may be the tip of the majestic iceberg lurking underneath 🙂

Accept the A-word– Acceptance is at the heart of supporting a child with autism. Without this, they can never truly fulfill their potential. There’s no use in burying your head in the sand. We won’t grow out of autism, we need to accept and grow around it.

Always remember:

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So there you have it Earthlings- my top tips for supporting a child with autism. However, like I said, I can only speak from my experiences of autism, so here are some other helpful advice links on more specifc ways to support autistic children:

At the end of the day Earthlings, armed with a little bit of knowledge, understanding and most importantly love- there’s no better way to support your child 🙂

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Aoife

Accepting your Autism Diagnosis

Greetings Earthlings! 🙂

To kick off the new year I’m going to expand a little bit on something I’ve touched on briefly in the past- coming to terms with your autism diagnosis.

As I’ve stated many times, getting my Asperger’s diagnosis was one of the best things that could have happened to me. Two little words clarified a lifetime of questioning, confusion and misunderstanding.

My entire life finally began to make sense.

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Whilst this diagnosis was indeed a welcome one (in spite of the way my diagnosis was sprung on me 😛 ), I struggled to come to terms with it for some time afterwards. As an adult, the diagnosis shouldn’t have changed anything- Asperger’s syndrome explains me, but it does not define me.

However, just because the shoe fits does not mean that you will break it in overnight.

Logically, there was no issue in being diagnosed; the emotional aspect on the other hand was much tougher.

Getting my diagnosis was like seeing myself for the first time in a mirror. It felt like I had made a revolutionary discovery, and yet  somehow, I was ill at ease. The more I read about Asperger’s, the more self conscious I became of my mannerisms and behaviours. I was hyper-aware of everything that I did.

I knew and accepted that Asperger’s didn’t define me, however, I felt compelled to define it. I talked about Asperger’s incessantly possessed by the niggling urge to explain every single thing I did for fear of being misunderstood. As a friend recently told me, she barely knew my name before I had filled her in about my diagnosis! 😂

There were times when I felt as though I were beginning to disappear behind the smokescreen of the diagnosis, constantly questioning what was me and what was just Asperger’s.

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It took me over two years to learn to fully relax and embrace my diagnosis- somewhere along the way it just clicked. I no longer feel this need to go on about it. Indeed, there are times when I want to talk about it (for example in this blog), but I am also perfectly content to keep people guessing 😉

Asperger’s is a big part of my life, but it’s not the whole picture 🙂

Here’s just a couple of things that helped me on my journey towards acceptance:

  • Talk about it– Real original- I know, but if it ain’t broke don’t fix it!
  • Try CBT– Now I know that I’ve said CBT wasn’t particularly useful for me from a management perspective, buuuuuut cognitive behavioural therapy did help to increase my knowledge of autism and better understand who and why I am 🙂
  • Write it out– I know I’ve said it before, but writing can be so cathartic. It really helps to verbalize what you can’t describe, especially if you have alexithymia. My laptop is full of mini essays from deflating my overly full skull at 3am! 😛
  • Read – Whilst this may have partially fueled my hyper-analysis, it also allowed me to better understand and accept myself. The more I learned, the easier it was to accept and embrace my quirks. Just maybe steer away from some of the novelizations of autism- these don’t always paint the most realistic of pictures 😛

Learning to accept an autism diagnosis (as cheesy as it sounds) is a journey. There may be twists and turns and many a speed bump along the way, but you will one day reach your destination 🙂

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Aoife

 

Autism Management- Cognitive Behavioural Therapy (CBT)

Greetings Earthlings! 🙂

Today I’d like to briefly examine one of the most commonly recommended therapies for autism management- cognitive behavioural therapy or CBT.

So let’s all lean back in our chez long as we dive in! 🙂

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First off, what exactly is CBT?

Originally designed as a treatment for depression, CBT is a form of psycho-social intervention (i.e. counselling/psychotherapy) that is widely used to help improve mental health. Unlike other forms of therapy, CBT focuses on developing coping strategies to target our problems and to change unhelpful patterns in emotions, attitudes, negative behaviours,  and thought patterns.

In other words- CBT aims to change negative ways of thinking or cognitions in order to improve behaviour.

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As a result, CBT is widely used to treat anxiety, depression, eating disorders, OCD and a range of other psychological issues- many of which are co-morbid with an ASD diagnosis. It’s thought that CBT can be a particularly useful tool to treat anxiety and to help develop emotional recognition in autists.

CBT was personally recommended to me following my initial diagnosis in order help me to better understand autism and to conquer my social anxiety.

So what did I make of it?

Well, being honest (as we aspies must be 😛 😉 ), my opinions are slightly mixed regarding CBT. Whilst initially I found it helpful as it taught me a lot about autism and the reasons behind my behaviours, after a time, I felt that I didn’t really need it- especially given that I was in my twenties and had already overcome many of the challenges associated with ASD’s. In many ways, simply knowing and understanding Asperger’s Syndrome was enough to assuage much of the mental anguish I had inflicted on myself for being different 🙂

Nevertheless, I did find it beneficial to have a neutral party to talk to in those first initial months post diagnosis. It’s quite a lot to take on board, so it was nice to have that outlet to help guide me through the fog.

All in all, I felt that perhaps CBT may be better suited for a younger person with autism in helping them to develop lifelong coping mechanisms that will enable them to thrive. Had I better understood myself earlier in life through CBT intervention, many things could have been so much simpler 🙂

So if you think CBT may help you or your child, why not give it a try- get out your phone, book an appointment and take a seat on that couch (it’s surprisingly comfy 😉 )

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Enjoy the weekend everyone! 🙂

Aoife

Discussion:Women & Autism

Greetings Earthlings! 🙂

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

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

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

So why the discrepancy?

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

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

So how do women with autism differ from men?

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

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

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

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

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

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

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

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

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

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

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I know!

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

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

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

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

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

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

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

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Aoife

 

Getting Diagnosed

Greetings Earthlings! 🙂

In continuation from my previous post, you may ask how I came to be diagnosed. I survived in (relatively)blissful ignorance for 23 years, what changed?

The truth? I was tricked!

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By my own family no less!

I had been led to believe that I was attending a counselling session to work on my (mild) social anxiety issues. How very wrong I was…

I suppose I should have guessed that something was up when my mother joined the session (to provide a ‘developmental history’ or record of my behaviors growing up). There was no logical reason for her to be there, I was over 18 after all.

Eyebrows were raised and faces were pulled as I was confronted with what seemed like an unusual combination of questions, such as “do you have any issues with textures?”; but still my naivety persisted to the very end of the session. It wasn’t until the psychologist asked me if I would be surprised to learn that I scored highly on a test for Asperger’s syndrome that the penny finally dropped!

Needless to say I was not impressed when I found out that I had been hoodwinked…

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….but ultimately it turned out to be a good thing! 😛 🙂

My mother had guessed a few years previously that I was on the spectrum, but as it wasn’t impacting my life hugely, she reckoned that ignorance was bliss. It wasn’t until my social anxiety became an issue during my life as a post-grad that my family felt it was finally time to tell me.

Throughout my life, I had always struggled socially. I would drift from group to group, friend to friend, frequently choosing my own company in the schoolyard. Oftentimes I spent my lunchtimes sitting in a bathroom stall waiting for the bell to ring so that people wouldn’t stare at the lone wolf walking around by herself. Knowing that wolves are pack animals I tried to find a group where I belonged, but I always felt like the odd one out, or ended up saying something that alienated myself.

In my head isolation often seemed easier.

During my undergrad in college however, I finally became a socially functional member of society. I had groups of friends, I was involved in art society, I went out several times a week. To an outsider I seemed normal, and for the first time in my life, I suppose I too began to feel like I fit in. Women on the spectrum are known for their ability to socially mimic their peers- the chameleons of the human race. I guess I finally learned how to make my skin change colour.

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But as things must, change came knocking as graduation loomed, and I was thrown off course.

My post-grad plans fell through, I was cut off from my regular social life and I suppose I gradually began to regress. When I finally launched post-grad plan B, I naturally assumed that things would return to normal, but this proved quite difficult. I struggled to connect with my new peers and always seemed to rub them up the wrong way, no matter how hard I tried. It was like being back in school again. On nights out I reverted to being a quiet mouse in the corner, always feeling awkward and out of place.

I remember one night in particular where I almost had a panic attack in a bar. Everyone in the group was dancing and I wanted nothing more than to dance too, get back to my old self. I tried to move my body, but it refused to obey my brain. I managed a single jerk of my arm, nothing more, and it terrified me. Feeling everyone’s eyes on me I ran for the bathroom to try to catch my breath. My social attempts over the next few months produced similar results.

At the same time, the high pressure environment of the lab was taking it’s toll. Exhaustion, hunger, frustration of repeated failed experiments- I found myself frequently bursting into tears at the slightest provocation. A simple loud bang once sent me into meltdown! It was my dexterity however, which ultimately influenced my mother to seek a diagnosis. I was struggling greatly with some of the finer dissection work in my experiments and I was on thin ice.

Blissful ignorance aside- I needed to be diagnosed.

And so led to the grand deception that brought me to a psychologists office for diagnosis, and I’ve never really looked back! 🙂

Since the diagnosis, I’m the happiest I’ve ever been. Never before had I felt this comfortable in my own skin, this content to simply be me. No longer did I berate myself for my social shortcomings, but learned instead to understand and embrace my awkwardness.

As much of a shock as the diagnosis was at the time, it truly was one of the best things to ever happen to me. Cheesy as it is to say- it is always darkest before the dawn! 🙂

 

Aoife

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