How your autism affects you: Part 1

It has been said that "If you have met one person with autism, you have met one person with autism.” - Dr Stephen Shore.

Autism spectrum condition (henceforth autism or ASC – I avoid the term ‘autism spectrum disorder (ASD)’, as I do not feel it is a disorder, but a neurodivergence within a neurotypical world) affects everyone uniquely, and although there are common challenges a person on this spectrum may face, the way that they are expressed will be unique for each autistic person. This article was written because every autistic person is unique. It seeks to go through some of the ways that autism may be expressed to enable you to talk about how your autism uniquely affects you.

As with many diagnoses, we can conceptualise what ASC means for an individual or for ourselves, but it will be uniquely expressed in every individual, and going through this worksheet will enable you to consider how ASC is uniquely expressed for you. I have written this specifically for those who are considering starting therapy, but this worksheet could also be used to explain your autism to other professionals or people who might be interested. 

This article is a brief introduction to how autism affects individuals. I highly recommend checking out the National Autistic Society for more specific articles on these topics or searching through Counselling Directory’s articles for more content. 

I do not have ASC but have consulted with others with lived experience in writing this and am very open to feedback on whether this is useful as a tool or how it might be used/adapted.

Note: If you fill in this worksheet, consider who you might share it with and why. Some of the questions will contain a lot of confidential information about your health, history, and how you process the world. I hope it will help you understand more how autism uniquely affects you, and to explain parts of this to people who know you professionally or socially, but your safety and confidentiality both need to be considered before you share your answers and choose which ones to share and with whom.

Disclaimer: Autism affects each person uniquely and you may not align with every aspect of this worksheet. 

1. Diagnosis

Have you got a formal diagnosis of autism? It may be that you identify with some traits and are wondering if you do, or that you self-diagnose. If you’re younger than 40, you may have been diagnosed whilst you were at school by an autism team, but sometimes autism can be masked by other traits, or you can mask (perform socially to hide autism) and it may not have been noticed. Autism is a way of processing the world around us and to be diagnosed with ASC you would need to fit the criteria since the age of three.

It’s worth considering the pros and cons of seeking and getting a diagnosis. Victoria Hughes’s talk on YouTube expands on some things to consider. To briefly summarise: getting a diagnosis can be a huge relief for some people after years of feeling different or self-blame; it can provide a diagnosis that we can also use to explain to others, it opens some options for support, and it can provide some validity and recognition of our individual support needs. It can also have some implications in terms of stigma which can be attached to a diagnosis; a diagnosis is a lot to process as ASC is a lifelong condition, and the process of getting a diagnosis itself can be costly privately or with lengthy waiting lists. 

Whether you have a formal diagnosis or not, different parts of this worksheet will affect you, and it can still be useful to reflect on our needs to explain it to others and support ourselves.

2. Learning disability

Mencap is a charity working with people with learning difficulties (LDs), and a great resource for more information and support around LDs. They mention that around half of autistic people also have an LD. LDs can be classified from mild to severe. With an LD you may need support with your care needs, communication, and in learning new information. 

More severe LDs can be more noticeable. A term is sometimes mentioned called ‘high functioning’ autism for an IQ above 70. This term is going out of fashion because it implies that someone without an LD doesn’t need support, whereas any diagnosis of autism is recognised under the Equality Act (2010) and deserves an assessment for support to thrive in a neurotypical (NT) world. You also likely found that your communication and learning developed at a different pace to peers in school, and you needed to find your own way to process and learn.

3. Other Neurodivergences

Autistic people are more likely to have other neurodivergences alongside their ASC. This includes ADHD, dyslexia, OCD, dyspraxia, and others. Some of those conditions can mask autism or vice versa (e.g. both autism and OCD can involve a sense of peace or joy from repetition and order, whereas ADHD might mask autism in a child). You are a whole person and each part of you interacts, so it is worth considering how other diagnoses of neurodivergence affects you individually, as well as how that might interact with your ASC.

This article doesn’t go into much detail about other neurodivergences; The National Autistic Society is a good resource for articles, as is Counselling Directory, and the ADHD Foundation. 

4. Social communication

Social communication concerns how we communicate with others. It concerns the language we use, phrases we repeat, our prosody (tone, intonation, pace of words), body language, and whether we use aids to communicate.

Communication preferences

Language development can be delayed for autistic people. Some people may not communicate verbally or have limited verbal communication styles. Communication styles may also change, for example with selective mutism where a person is unable to speak in certain high-stress situations. Some people may communicate verbally, whereas others may prefer gestures or visual aids.

Not being understood when we try to communicate, or being unable to express when something is an issue for us, can be a huge source of frustration to individuals.

Auditory processing: Calls, face-to-face, or using text/email

We have discussed how some people do not communicate verbally or need assistance/aids to do so. Likewise, there may be preferences in the form of communication you receive. Have you, for example, ever had a phone call from a friend or relative and felt an intrusive dread at the thought of being thrust into a conversation with them? An unexpected phone call can lead to a lack of control or routine and be seen as quite threatening.

We can be guilty, when we communicate with someone, of assuming our communication preference is the same as theirs when they may feel much more settled and safer with a different form of communication. Synchronous (real-time) modes of communication such as phone calls, face-to-face meetings and video messaging, carry the intricacies of non-verbal communication and may not provide people the processing time they need to reply. Asynchronous (non-instant) communication styles such as text, email, chat forums, or letters, can often provide the space to reflect or time to respond when a person feels safe and clear.

Face-to-face meetings will also involve a lot of other sensory and facial stimulation that could be overwhelming and block safe reflective communication. Since the pandemic, apps like Zoom have become commonplace in the therapy world. There are increasingly more mediums to choose from such as Discord, which can be used whilst interacting within your favourite video game. What method of communication provides you with the optimal level of emotional arousal where you can communicate safely and be heard? This may be, for example, video messenger, text, calls, face-to-face meetings, or something else. 

Literalism, linguistic rigidity, and echolalia

I am aware that my language can use sayings or metaphors that allow me to add emphasis or create a visual connection in imagining a metaphor (for example in section two, I said ‘going out of fashion’ and I didn’t mean that it was cool and fashionable to say “high functioning”, I meant that the term is more historic).

This can be confusing though – for example, why would we say “break a leg” before a performance when we mean “I hope it goes well”? For some autistic people, it can be difficult to know what people mean when they use sarcasm/irony (‘beautiful day’ when it’s raining), exaggerative language (‘I was in traffic for hours this morning’ when we mean it was busy), or banter. This can create a difficulty in following conversation when abstract terms are used.

An autistic person may communicate with very clear sensical language but may struggle more with the prosody that others use in their speech such as the tone or intonation when we mean a question, or the flow of pace that changes as we add emphasis to words. This can be another reason why asynchronous forms of communication can be more comfortable and allow more clarity of meaning.

Some autistic people (particularly children as a method to learn language) may also do something called echolalia, repeating phrases they have heard repetitively. The echolalia may sound strange or out of place, and the intention behind it may be to communicate or to self-soothe and not communicate. It can also be considered “copying to cope” – a way to practice social etiquette and fit in by repeating what others say. It may be immediately after hearing something said, or a delayed repetition of words that someone has said, or they have perhaps heard elsewhere for example in a favourite show.

The rise of memes, GIFs, and emojis has provided a rich means of online communication where we can repeat the essence of the meaning with an image that seems out of place; in the same way that there may be rich communication behind echolalia.

5. Social interaction

Social interaction is how we can use our communication to interact socially with others, and how we can interpret their communication back. We have outlined how a person with ASC may have difficulties communicating with others or interpreting some of the subtleties of their communication which can make interacting socially difficult.

Social etiquette

Social interaction has lots of subtle rules that are unspoken or shift mysteriously and are somehow sensed by neurotypical people. This can create a lot of social anxiety to somehow belong and follow these rules and there can be a strong sense of ‘getting it wrong’ in a neurotypical world yet not knowing why or if they are wrong.

An example of this, which a neurotypical person might relate to, is when you go abroad on holiday when showing the soles of your feet, wearing shorts, or shaking with your left hand could cause immense offence, and you might be completely unaware as to why because you are unaware of the cultural context. The same can be experienced by an autistic person when social etiquette is unspoken yet there is a neurotypical expectation for it to be understood. An autistic person may also inadvertently communicate non-verbally and not understand why others misinterpret them.

Social etiquette changes in different environments (for example speech volume in the library, cinema, football field, or a restaurant), between people (for example with personal space; a comfortable distance between people will be different if they are within our family, our sexual partner, a friend, colleague, or stranger), and even with the same person (is it appropriate to talk about my special interest now, or is this person not interested?) and yet most neurotypical people seem to somehow know these unwritten social rules.

Reading other people

We mentioned that autistic people may struggle to understand others’ non-verbal communication. When we interact with others we use body language, distance, prosody, imagery, sayings, and communicate our feelings within our speech; within a group, communication is even more complex with roles/positions/hierarchy, processing space, and dynamic relationships playing out. When we speak, there are motives for speaking and intentions behind the message, but that intention might not always be communicated. An autistic person may struggle to interpret the entirety of communication and, because of that, struggle with the interaction.

There is a myth that autistic people don’t have empathy or theory of mind – it’s more that they may struggle to read all the non-verbal communication cues and have some rigid expectations that work for them and can cause distress when deviated from. The same can also be said about some autists’ ability to communicate non-verbally. They may be presumed rude or insincere if their facial expressions do not match the tone of what they are communicating (e.g. if they are frowning because of pain that they may not detect due to interoceptive issues, that could come across as if they are angry at someone), as insincere or robotic if their tone and pace lack the expected prosody of an interaction, or as invasive if our proprioceptive needs mean we stand too close to someone than is ‘expected’.

Honesty and congruence in communication can also be a beautiful neurodiverse trait, that neurotypical people are less used to with an expectation of there being more communicated than is actually being said leading to a sense of suspicion.

Eye contact and physical touch

Autistic people are likely to experience sensory processing issues. Eye contact carries a lot of sensory information, and a lot is communicated within the micro-expressions on the face. For this reason, direct eye contact can feel overwhelming and deeply intrusive, and many autistic people will feel safer and more able to process if they are free to not stare at a person.

Neurotypical (NT) people will glance often at the face and eyes of the other person during conversation, holding it for a second or two, but likely empathise that just staring into someone’s eyes is intense (often either romantic or if we are going to fight) – for an autistic person this can be more extreme and permission to not hold a gaze can help them be more attuned to the conversation.

I will cover sensory processing later, but likewise, physical touch such as hugging, handshaking, pats on the back, or contact in sports can feel deeply intrusive and create a sense of overwhelm. Again, an environment may be more comfortable for an autistic person if they know that they are not going to be touched, or if explicit consent is gathered before something like a handshake.

6. Social imagination

This is the third and final part of the traditional ways of looking at Wing and Gould’s “Triad of Impairment model”. Social imagination means the tendency to enjoy repetitive behaviour, to invest in special interests, and to struggle when structures we are familiar with change. To an autistic person, the world can appear incredibly chaotic and difficult to understand, and structure provides some comfort that comes from the anxieties of being in a NT world. 

Structure, change, and routine

The world can feel very out of control, just as social situations can feel chaotic and unpredictable. Having a routine can help an autistic person feel settled and alleviate anxiety. This might involve a timetable or board of what is happening in the day, having a routine of what meals are eaten on certain days, or ritualising tasks such as the order we shower our body parts. Any measures we can take to predict the uncertainty of the world can create a sense of safety. This may, for example, mean planning a new bus route or being aware of interruptions that might happen at a concert to prepare for them.

One tool to support someone is understanding and creating a sense of understanding of tasks or new situations involves using social stories, a comic book-like explanation of a task that breaks it down into smaller consequential pieces.

We need to understand these routines, repetitions, and rituals as coping mechanisms for anxiety and intolerance towards uncertainty. An autistic person may find themselves incredibly dysregulated and distressed if the routine is broken or the ritual amended (e.g. the supermarket doesn’t have the right food, the normal route has roadworks, or an event is cancelled). Transitions in life (new role, going to university, a bereavement, a new relationship) can also be distressing due to added unpredictability. 

Repetitive behaviour and stimming

Stimming is a repetitive behaviour that an autistic person will use to comfort themselves and self-regulate. Sometimes we stim to regulate sensory sensitivities for example if our balance is under-stimulated, we may rock back and forth, or if we struggle to connect with our limbs then ‘hand flapping’ might regulate that sense.

Stimming can also provide a point of focus if experiencing sensory or emotional overwhelm, for example humming in a restaurant can block out other background noise just like monks might chant ‘Om’ when meditating. Stimming creates an association of peace or regulation and can feel incredibly pleasurable to do. If you Google ‘Fidget Toy’ or ‘Stimming Toys’, you’ll find a wealth of items that can help regulate.

The important thing is to consider what need stimming is meeting, and how that need can be met to regulate the person in a way that they can most fit into a social setting without unwanted attention. Some people's stims can put them at risk (e.g. head banging or biting) – can we work out how it is regulating the person, and if the regulation from that stim can be replaced to keep them safe (e.g. a helmet if headbanging, or hard sweets to bite).

Forcing someone not to stim can be torturous because we are taking away a coping strategy that they are using to self-regulate without providing an alternative way of self-regulating.

Timekeeping

Time is a construct that helps us synchronise with others and order our days. It can help with that sense of ordering a chaotic world. An autistic person may find being punctual and ordered with time helps create a sense of safety. Some of our language can be non-literal (e.g. “I’ll be five minutes” when we mean “I am close to arriving”) or we can use words related to time that are abstract (we’ll be there in a while or later today).

Speaking in a quantifiable way in terms of time can be clearer, and sticking to time boundaries can help add to that sense of safety. In therapy, for example, the session may start at 5pm and last one hour – this provides a predictable structure that could cause distress if it regularly over/underruns or starts late.

Special interests 

Autistic people usually have several special interests (SI). These are areas, hobbies, or things that the person is particularly interested in. Some examples might be trains, mice, computing, anime, roleplaying games, Egyptian history, and stamps. A person’s SIs may also change throughout life. SIs are different to hobbies or passions a neurotypical person might have but of a similar flavour.

An autistic person will derive a rare sense of true pleasure and an ability to hyper-focus on the special interest; it provides a sense of mastery, which may even lead towards a fulfilling career (note, a significant proportion of autistic people face unemployment – it is a protected characteristic under the Equality Act (2010) and there is a lot of support towards employment).

An SI can also be a great way to build community – especially with groups and forums online. SIs can also be detrimental; it may be that in deriving so much pleasure from it, the person struggles to not steer conversation towards their SI (a topic they are very much comfortable and in control of), and they may also struggle to focus on other areas of their lives that are easy to neglect in order to focus on the SI.

Films like “Rain Man” (1988), or the show, “The Good Doctor”, present autistic people with Savant condition where they have incredible skill in an area from their SI and high intelligence. This is said to affect around 10% of autistic people and it is a myth that “you have autism so you must be really clever and good at X” which represents some but not every person.

Part two on sensory sensitivities, and part three on mental health and support in a neurotypical world to come shortly.

My hope in writing this, and in you considering the questions within the questionnaire is that you can better understand the uniqueness of how your autism affects you, and gain the language to better describe your autism to professionals and others in your life to create a more inclusive affirming world around you. If you would like to consider counselling for any of the issues raised within this article, please feel free to check out my profile and get in touch.

Special thanks to Sophie’s Proof Reading for copy editing, and Cat Abrams and Zak Martell for their feedback.