As a recently diagnosed adult autistic person, I have had a good deal of time to reflect on the diagnostic process and what it really means to be autistic.
This has involved a lot of research, finding and joining communities of people who face the same day-to-day challenges, and coming to understand why I experience the world in the way that I do. Being autistic is different for every single autistic person, and there is no ‘one size fits all’ diagnosis or list of ‘symptoms’.
A particular area of reflection has been the use of the terms: ‘high-functioning’ and ‘low-functioning’ to describe an autistic person’s ability to function in society.
Functioning labels are not a diagnostic tool and are not a part of the DSM-5. Their helpfulness can be contradictory and can have a significant impact on the lives of autistic people and how we may be perceived by others.
Here’s how they can be harmful and how we might better describe the needs and abilities of autistic people.
Why are these labels harmful?
They invalidate the needs of autistic people.
‘High-functioning’ refers to autistic people who can generally function well in society, often through masking their autistic behaviours from others by copying “normal” behaviours. ‘Low-functioning’ refers to autistic people who cannot generally function well in society and may need more support. One person may be labelled as high-functioning because they are able to communicate well, make eye contact or show empathy – but this label can suggest that someone that may be able to ‘function well’ doesn’t struggle as much as another person labelled as ‘low-functioning’, or is less autistic.
You cannot be a ‘little bit’ autistic. Autistic people may find it harder to be believed or supported by those around them if they are associated with a higher level of functioning, and their needs can be overlooked, meaning that they can feel invalidated, let down and excluded. Remember: in your interactions, it is likely that you are only getting a small glimpse into an individual’s life and, behind closed doors, this person may be experiencing burnout, shutdowns, or meltdowns from the extra effort required to function well in society.
What is masking?: Autistic masking (sometimes called camouflaging) is an individual’s ability to ‘fit in’ to society by suppressing their natural responses, to hide or disguise part of themselves – this can include mimicking others’ behaviours and facial expressions to seem “normal”. Masking can be detrimental to an individual’s mental health and sense of identity – increasing risk of autistic burnout, anxiety and depression . Masking can often mean that people go undiagnosed into adulthood as their autism hasn’t been noticed through childhood and adolescence.
They discredit or over-simplify a person’s diagnosis.
Using binary descriptors doesn’t work as they over-simplify the needs and challenges faced by autistic people. The autism spectrum is not linear, and labelling individuals as high or low function can overlook the complexity of their thoughts and behaviours.
For those who have sought diagnosis as an adult, the decision to speak to a GP and pursue assessment can be scary, and a difficult decision to make – often due to the stigma associated with an autism diagnosis. When an individual discloses their autism and is met with “well, you don’t look autistic – you must be high-functioning”, it discredits the individual’s diagnosis, personal experience and identity. Nobody should feel that they must prove or explain their neurodivergence, or even justify their needs.
Expectations and confinements that cause shame.
These labels create further ‘boxes’ into which autistic people can be placed, which creates shame for both ‘types’. Those that are categorised as ‘low-functioning’ may feel shame from being labelled as more neurodivergent, and those that are labelled as ‘high-functioning’ can feel shame when they are less able to function, and experience more divergent thoughts and behaviours. Functioning descriptors can inhibit autistic individuals from being their true selves and finding, or feeling comfortable, with their identity.
They create a divide in the autistic community.
By using ableist labels for those who share the same neurodivergence, it can create a divide where one part of the community is implicitly told that their differences mean they are more ‘broken’ or ‘defective’, with one half of the community being identified as ‘not that bad’.
What would be a better way of describing the abilities of an autistic person?
Labels can be an important part in the diagnostic process and can help to indicate to medical professionals how much support an individual may need. These descriptors may be used at the discretion of a patient’s psychiatrist – however many are moving away from using these labels due to their potentially harmful nature. Here are a few alternative ways in which we can approach describing an autistic person’s abilities in a more respectful way:
- Describe an individual’s strengths and challenges. Autism is different for every single person, so applying labels can often over-simplify a person’s needs and de-humanise an individual’s experience. Instead of focusing on what a person lacks, concentrate on what strengths their autism gives them and understand what an individual finds more challenging.
- Ask an autistic person how they would like to be identified. Help to raise awareness and support autistic needs in the right way – if an individual feels comfortable enough to talk, open a conversation, and get ready to listen and learn. Many autistic people identify their own descriptors on social media and some even go to the extent of indicating whether or not they are comfortable using functioning labels.
- In terms of medical descriptions, the DSM-5 no longer specifically identifies Autistic Disorder, Asperger’s Syndrome or PDD-NOS, and instead now lists them all under ‘Autism Spectrum Disorder’. The DSM-5 now offers three severity levels which are identified during diagnosis that better help identify an individual’s need for support .
- Level 1: Requires support
- Level 2: Requires substantial support
- Level 3 Requires very substantial support
Read more about Autism Spectrum Condition here