The Problem with High Functioning Autism

Greetings Earthlings! 🙂

This week I’d like to discuss the term “high functioning autism”.

You may be surprised to hear that the term “high functioning” is quite controversial within the autistic community. In fact a recent study strongly supports discarding the term “high functioning autism” completely.

So why is the term controversial?

bitmoji-20190710074854

Firstly, let’s quickly remind ourselves of what constitutes high functioning autism:

High functioning autism (HFA) is a term used to describe autists with strong language skills and an IQ of over 70 ( i.e they do not have an intellectual disability). 

Herein lies the problem- the term uses IQ as a predictor of functionality and does not take into account the day to day struggles of the average autist. An autist deemed to be low functioning may not encounter challenges in their daily life, but may struggle academically.  Similarly, an autist may excel academically, but something so trivial as writing an email may prove challenging. In many of the films I’ve reviewed, the autistic character is described as high functioning, but yet they are incapable of living an independent life.

Moreover, functioning levels often fluctuate from year to year, improving or dis-improving depending on circumstances and levels of support- there’s even evidence to suggest that, as with many things, autism can get worse with age! Levels can even fluctuate day to day where something as simple as lack of sleep can impact upon functioning. As a result of this, many autists deemed “high functioning” do not get adequate support for their needs.

bitmoji-20190710075012

Researchers have found in a recent study that there is a serious gap between an autists cognitive functioning (IQ) and their adaptive behaviours (i.e. their ability to adapt to their environment). The average results show that autists with higher IQs scored 28 points lower than their IQ in adaptive behaviour scales, suggesting that IQ is a weak predictor of daily functioning.

You can read more about the study here:

Large study supports discarding the term ‘high-functioning autism’

Technically speaking, within the medical community the term “high functioning” is considered an informal term and is not in itself a definitive diagnosis, further fueling efforts to banish it.

However, I personally feel that removing the term could be problematic. In my case, both my IQ and functional abilities are high- I breezed through college, have an active social life, hold a job and live independently. To say that I am simply autistic to a person who doesn’t know me very well can skew their expectations and perceptions of me- especially in the workforce. Granted, public understanding of the spectrum is improving, but still the ‘a’ word can place you into a predefined box in people’s minds.

I worry that our move towards a more generalized view of the spectrum may effectively disable the truly high functioning. Recall how autism is divided into levels. Asperger’s syndrome has been swallowed up by level 1 autism, where 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

where autists are vaguely classed as “requiring support”.

On paper, I fall under this definition, but it does not describe me as well as Asperger’s syndrome or the term ‘high functioning’. This definition paints an entirely different picture for people to that of my reality (for starters the only support I require consists mainly of a good bra, sugar, a hug and a box of tissues for unexpected meltdowns 😂). Were I to have been diagnosed earlier in life, this definition may well have held me back.

For many autists, indeed the term high functioning can be tricky, but I do not believe it should be abandoned completely. Yes, it is time to reevaluate our classification of autism to better define functionality levels across the entire spectrum, but perhaps there’s a better way to go about it.

bitmoji84905202

Hope you enjoyed this post dear Earthlings! 😀

Have a lovely weekend!

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.

bitmoji1733715277

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.

hugs.png

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

Autism- Are We Making Excuses?

Greetings Earthlings,

So today, my title is a little bit different, but I’ve been musing on this question a lot of late- are we making excuses for autists?

hmm

Don’t get me wrong, I’m the first person to advocate the need for understanding and acceptance for those of us on the spectrum- but there is a fine line between making exceptions and making excuses.

I have seen people that were given all of the support and understanding that I grew up without, and yet they do not seem to function as well as I do. Granted there are varying levels of need and functionality within the community, but one has to wonder if excuses have been made. Certainly teachers have told me about spectrum kids where parents have insisted that their child is “not able” for various school activities.

If raised in a protective autism friendly bubble, what happens when your supports go away in adulthood? How can you cope in the real world if people have spent your whole life excusing your behaviour?

Tells a stranger they look like a troll- “He has Asperger’s!”

Struggles with a maths problem- “She’s not able, she’s autistic!”

Throws a plate in a restaurant- “I can’t help it, I’m on the spectrum!”

If you tried anything like that last one as an adult you would be arrested not excused!

police.png

Yes being autistic is a challenge, yes we can’t always control impulses, meltdowns or our tongues, but it doesn’t mean that we can’t improve. If we are never called out on our behaviour, we will continue to think that it’s ok to tell people that they look like a troll for example, and one day we will say it to the wrong person- bye bye friend, or job opportunity; maybe even hello fist!

I know it’s not easy to scold an autistic child, we don’t understand how or why we’re in trouble, or even what we did wrong sometimes- which often triggered meltdowns for me growing up; but here are some tips on how to approach this situation:

  • Reassure them that they are not in trouble- This can be critical. As you know, we autists are black and white thinkers. We see the world in good and bad. If something we do is bad, then we perceive our whole selves to be bad. Our brains struggle to handle anything less than perfection- and we all know what happens when our brains can’t handle something! #meltdownalert

Image result for there there gif

  • Explain why the behaviour was bad- The key here is to not excuse the behaviour, but to explain it to us. If we understand why, then we are far less likely to be overwhelmed. “You’re not in trouble Aoife, but it’s not nice to….because… So try to remember that next time ok?
  • Create Rules– Rules are essential to modifying our behaviours. We live our lives by them, and yet when it comes to social rules we just don’t have a clue! If you create some for us however, we will be all the better for it 🙂  penny big bang theory sheldon autism aspergers GIF
  • Use reward systems to encourage positive behaviours- As I’ve discussed previously, my mother found it particularly effective to use rewards to encourage me towards better habits such as studying and holding my temper

I’m not saying that we autists need to conform and be “normal” (as I always say- it’s overrated!), but for our own sakes, we cannot make excuses for every single autistic behaviour. So try new things, fall off that bike a dozen times or tackle that equation.  If we automatically say that we “can’t”- then we will never reach our potential.

We may get it wrong, but oh, what if we succeed? 🙂

Aoife

Blog at WordPress.com.

Up ↑