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

Talking to your Child about Autism

Greetings Earthlings! 🙂

Continuing on from my post discussing if you should tell your child that they have autism, this week I’m going to discuss how to talk to your child about their diagnosis.

When should I tell my child they are autistic?

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As with autism, the answer to this question is entirely individual. Some higher functioning autists may be ready for this information at a younger age than others, or may even be so high functioning as to not need this information during their formative years (as in my case- though in hindsight it would have helped a lot!). Timing can also vary with the age of diagnosis. Girls for example are often diagnosed much later in life than boys with autism.

In general, many experts recommend telling your child around the time they start to become self aware of their differences to their peers- roughly around 6 years old, but this awareness will vary among autists. I, for example, always felt that I was different to my peers, but I never openly questioned it until after I had received my diagnosis in my 20’s.

How do I tell my child they are autistic?

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As with when, there is no right or wrong way as to how you talk to your child about autism (just maybe don’t spring it on them out of nowhere the way my parents did 😛 ), but here are some tips and tricks that may help you:

  • Pick your moment– be very careful with you timing. Make sure that your child is content and calm in a familiar place, things will be much harder if they are anxious
  • Don’t rush– Ensure that there is plenty of time to talk things through with your child. They will have questions and may need extra time to process what you are saying
  • Keep it simple– There will be plenty of time to introduce them to the world of neurodiversity as they grow. Just introduce them to autism one toe in the water at a time. Top Tip– There are a lot of useful kids TV shows (such as Sesame street and Arthur)  and books explaining autism in an age appropriate way which could help this conversation 🙂
  • Emphasize that this is a good thing– Whilst an autism diagnosis can be difficult to process initially, ultimately it is a good thing. Your child will get the help and supports they need to thrive, they will better understand themselves and be understood. However, the black and white autistic mind deals in good and bad. Sometimes an autist cannot perceive the difference between a little bit bad and plain bad which can cause great distress (à la 6 year old Aoife who thought she had to leave home as she could not be good! 😛 ). Highlight the importance of difference and make it clear that this is not a bad thing for them- different, but not bad 🙂

How do I explain autism to my child’s siblings?

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In much the same way as you would tell a child they are autistic, sit them down and have a casual chat about their sibling (or even friend- awareness in the community is crucial to changing societies attitudes for future generations of autists 🙂 ). Depending on the age of the child, what you tell them can vary to suit. Show them videos, give them a book, tell them a helpful analogy (I do love my Supergirl one!) etc to help them understand. Explain that their friend/sibling works a little bit differently and that they don’t always mean to say or do certain things, but we must love and accept them as they are 🙂

Hope you found this post useful Earthlings!

Enjoy the weekend! 🙂

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

 

Should I Tell My Child They Have Autism?

Greetings Earthlings! 🙂

So today we’re going to discuss a very important question when it comes to growing up with autism- should autists be made aware of their diagnosis?bitmoji185739333

Now this question is a little bit tricky.

On one hand, we have the parents who do not want their child to know at all; they want their child to grow up as “normally” as possible so that they may never be held back by the autistic label.

In a sense, part of me would agree with this approach. In a lot of ways, growing up undiagnosed was a blessing in disguise. I was never treated differently (well, by teachers at least- children are another kettle of fish!) and I grew up to be a “normally” functioning adult with a job and friends, never held back by the autistic label.

Buuuuuuutttttttt…

Whilst I can appreciate a parents desire for their child to thrive, the decision not to tell a child about their diagnosis ultimately amounts to sticking your head in the sand.

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We cannot ignore autism and pretend that it’s not happening. There needs to be interventions, strategies and most importantly, understanding.

We don’t just grow out of autism, we need to cultivate an environment so that we can grow around autism. Without self awareness, this will ultimately make life difficult for your child.

What if they found out some other way that they were autistic? If they overheard a teacher, accidentally caught sight of their notes or were taunted by another child? How would you feel if your parents kept something like this from you?

At the end of the day, your child needs to know about their diagnosis; maybe not today or tomorrow, but when the time is right, they will need to know.

Yes, there were some advantages to getting a later diagnosis, but ultimately, life would have been so much simpler for both my parents and I had we known that I was on the spectrum. We would have known how to manage meltdowns, my peers would have understood me better, I wouldn’t have tortured myself for being different- I would have understood and learned to better accept and love me all the sooner.

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So don’t worry about holding your child back, or upsetting them; take a deep breath and find a way to tell them- they will thank you for it in the end 🙂

Aoife

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