I Am a Professional Supporting Autistics

As a general rule, we always advise people to use identity-first language (that is “Autistic person”), rather than person-first language (that is “person with Autism” or even “on the spectrum”).

Research shows that the majority of the Autistic community prefers identity-first language, so using this language respects that preference. Having said that, if an Autistic client chooses to identify using person-first language, that is their absolute and inalienable right, and you should always default to respecting the way that each individual identifies themselves.

By using identity-first language, we recognise that Autism is intrinsic to how our brains are wired and it can’t be spearated from who we are. We embrace the person’s whole personhood and recognise that they are simply a different type of person – a neurodivergent person.

When people say someone “has Autism” or is a “person with Autism,” it has an undercurrent of viewing Autism as an illness or disease. This reinforces stigma and research shows that using person-first language often perpetuates the ableist stereotypes that undermine Autistic pride and wellbeing.

Absolutely. There is just no reason to use functioning labels, whether that is “high functioning” and “low functioning”, or “more Autistic” and “less Autistic”, or referring to the DSM-5 support levels as proxies for “Autism severity”, or even using terms like “profound Autism”.

Autism is a spectrum, but it is not a linear spectrum. This means that a person cannot be more Autistic or less Autistic than someone else. Rather, they are differently Autistic.

At best, functioning labels are reductive, reducing a complex, unique individual to a single descriptor, since every person’s functioning fluctuates with context and time (e.g., do you function now the same way you did when you were 14? Do you function just as well when you’ve had no sleep, are sick, or are stressed, as when you are well-rested, healthy and calm?).

At worst, the use of functioning labels can be actively detrimental to Autistic people – individuals dubbed as “high functioning” are often denied supports and accommodations simply because they have learned to mask their needs, and those designated “low functioning” are often denied dignity, respect, opportunity and the presumption of competence.

There are lots of ways to communicate – communication isn’t just talking. And many Autistic people will communicate in a variety of ways (including non-verbally) that may be unexpected or atypical if you are non-autistic. It can be challenging, if you’re not sure what to do, to view these expressions or behaviours as anything other than atypical… but if you work with the person and learn how they  communicate, you can hopefully begin to understand their specific mannerisms, and what they’re trying to communicate with you.

Some examples of communication differences may include:

• Low or no eye contact, which might be interpreted as rudeness or disinterest but is usually an Autistic person trying to reduce their sensory overwhelm or focus on processing information.
• Echolalia (repeating words or phrases) sometimes without clear reference to or connection with the topic at hand. Autistic people often make unusual connections between information and echolalia is a functional communication tool to emphasise a point, to ask for something, to answer a question, or just to help with processing information. If you’re not sure what a person’s echolalia means or its intent… ask them!
• Rocking back and forth, rubbing hands together, jiggling a leg or other physical “stims”, which are often interpreted as anxiety or agitation (and sometimes can signal that) but are usually an Autistic person’s way of self-regulating or self-soothing.

Many Autistic people rely on other methods of communication to interact with the world around them, such as communicating mostly in writing, using pictures/photos/objects/videos, using gestures, using sign language, or using computers, tablets and other devices.

However the Autistic people in your life communicate, try to keep an open mind. Try to avoid seeing their communication as odd or defiant, and instead approach it with curiosity. It is better to ask than to assume so where possible, ask (kindly), “Can I ask – if you’re comfortable sharing with me – what XYZ communicates/means for you?”

Autistic people, like many marginalised groups, have usually experienced discrimination, stigmatisation, exclusion or bullying over their lifetime. These experiences can lead to internalised shame, guilt, fear and anxiety… so when when you are working with Autistic people, we advise the following:

• Avoid asking or forcing an Autistic person to stop flapping / rocking / stimming. These behaviours are often largely out of the person’s control and although it may look distressing or be annoying to you, it is often what is actually helping us to self-regulate.
• Avoid trying to force an Autistic person to make eye contact. It can often feel uncomfortable or even downright painful to an Autistic person with sensory sensitivities or cognitive overwhelm to hold eye contact, and many Autistic people are better able to hear and absorb information when they’re not forced to do so.
• Avoid making surprise changes in routine or activities. Where possible, always try to give forewarning of any changes to an Autistic person.
• Avoid giving multi-step verbal instructions particularly when the environment is busy, noisy or when the person appears distracted.
• Avoid using idioms or vague language. Many Autistic people are literal thinkers, and ambiguity can lead to anxiety (e.g., “Are you a little salty with me?” may be significantly more confusing than “Are you feeling angry at me?”. Or “that’s a dog’s breakfast” is not at all transparent,and could easily be replaced with “that’s a mess”).
• Avoid relying on metaphors, analogies or multiple meanings that rely on context for interpretation. For example, some Autistic people have aphantasia (an inability to form visual images in their minds) so relying on metaphors or analogies (e.g. “picture this….” or even “imagine…”) can leave the person feeling ashamed and confused.

Easy! Ask the person. Whether it is about sensory needs or communication preferences, asking the Autistic person what you can do to support them and accommodate their needs is vital to establishing trust and rapport.

For example, many Autistic individuals experience sensory overload from stimuli that others may find harmless. It is important to understand that some Autistic people may not enjoy common physical gestures such as hugs, pats on the back, handshakes or even just being in close physical proximity. And similarly, where other people might enjoy atmospheric background music, a scented candle burning, or a brightly lit airy room, all of these things can be uncomfortable – and even painful – for some Autistic people.

When working with an Autistic person, we suggest asking them what their sensory preferences are (just as you would ask them what their communication preferences are), and how you can respect them. You might consider asking them:

• Is there anything in this environment that I can adjust to make you feel more comfortable?
• How do you prefer I interact with you? (e.g., should I speak louder or softer? Would you prefer we sit next to each other at a table rather than seated opposite each other?)
• Do you like hugs or handshakes, or would you prefer not to be touched at all?

Not all Autistic people will know what they prefer, and some may not be able to communicate their needs in a way you can understand. That’s where your curiosity is so important! Observe your client carefully, watch them and their reactions to identify potential triggers, and proactively try to remove barriers when you suspect them. And don’t forget to ask other Autists! We might be able to provide insight from our own lived experiences.

Anxiety is an exceptionally common co-occurring condition for Autistic people, as is depression. Worrying about uncertainty (also called “intolerance of uncertainty”), having unexpected changes in routine, sensory overload in school or in the workplace, or being challenged by social settings are all commonplace, daily occurrences for many Autistic people. This can leave an Autistic person feeling on edge, burnt out or anxious.

If you notice that an Autistic person that you’re supporting seems overwhelmed, anxious or panicky, you might like to ask them firstly how you can adjust the sensory environment to make them feel more comfortable. They may benefit from dim lighting, low/no background noise, soft voices and a stim activity to calm them while you speak (such as fiddling with a fidget object, or colouring or doodling). You could also ask how you can adjust the intellectual content of your time with them (are you covering too much, too fast? Are there too many demands and expectations? Do they need a written summary?).

Each Autistic person is different in how they handle stress and what helps them calm down. Learn more about your clients and how they respond to triggers and what they prefer while calming down by asking them, and by tapping into the experiences of the broader Autistic community.