Tag: autism level 1

New diagnosis of Profound Autism?

Greetings Earthlings! 🙂

There’s been a lot of talk in the news this week about potentially revising the autism diagnostic criteria to include a separate diagnosis of profound autism. The medical journal ‘The Lancet‘ recommended this diagnosis in 2022 to account for the estimated 24% of autists who:

  • Are 8 years and older
  • Have an IQ of less than 50
  • Have little to no language skills
  • Require 24/7 care

The diagnosis was proposed to help adequately support more severe cases of autism as the current 3 level structure is too broad and autists are often overlooked in research and services. As I discussed in my previous post on the subject, the spectrum is divided up into levels 1, 2 and 3 classified into requiring support, requiring substantial support and requiring very substantial support. As a result, the broad definition has made it difficult to classify adequate support services for profound autism where some autists meeting the criteria got lower support levels, and some who did not meet the criteria got the highest support.

Many people are welcoming the proposed revision, however, others are concerned that the age threshold will place additional burdens on families. 90% of autists are diagnosed before the age of 8, leading to repeat assessments to confirm a profound diagnosis when the autist reaches the age threshold. Moreover, families would be placed in limbo without the full support they need while they wait for an official confirmation.

In my view, this is a step in the right direction. For many years I have been lamenting the fact that the spectrum needs to be reclassified- but not with regard to the lower levels of the spectrum. I was initially diagnosed with Asperger’s syndrome round the time of the reclassification and broadening of the spectrum. While once a separate diagnosis with distinctive characteristics, it was subsumed by autism level 1 in 2013 following revelations of Hans Asperger’s Nazi affiliations.

As a result of this broadening, it has effectively narrowed public perception of higher functioning autists abilities. Asperger’s once implied a certain level of functioning bringing to mind the “little professor” persona. However, the word “autism” conjures the image of someone with serious sensory issues, who requires ear defenders and stimming toys (just look at Barbie). While visibility is very important for autists, this kind of negative stereotype gives the public a bad perception of higher functioning autists, which can be damaging if a diagnosis is disclosed when seeking employment. I have met some other level 1 autists over the last while, and find it astounding that we are the same on paper. Our functional levels and support needs are so far apart there should be an autism level minus 1 to separate us.

All in all, this is a positive move that this new diagnosis is being considered, but 13 years on, we need to revise the entire spectrum. Waiting lists are haemorrhaging, diagnoses are at unprecedented levels (they’re as high as 1 in 17 in Northern Ireland vs 1 in 83 in 2008), and supports are spread thin and often misallocated. A revision of the spectrum and classification of need is an important step forward.

Hope you enjoyed this post dear Earthlings! 🙂

Have a lovely weekend!

Aoife

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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?

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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.

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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.

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Hope you enjoyed this post dear Earthlings! 😀

Have a lovely weekend!

Aoife

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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

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