How your autism affects you: Part 3

This is the third of three articles explaining the worksheet. The first article covered diagnosis, other neurodiversities, learning difficulties, and Wing and Gould’s Triad Model of autism (social communication, social interaction, and social imagination). The second article covers sensory processing disorder specific to the ten senses; then other physical aspects of autism such as diet, allergies, sleep, processing time, and learning styles. This third article covers behaviours such as masking and behaviours that challenge, autism and mental health, abuse, support, & therapy.  

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. 

9. Behavioural

Masking

Masking is socially performed to hide traits associated with autism to fit in better in a neurotypical world. This could include things such as forcing yourself to maintain eye contact when it feels uncomfortable, pretending to ignore sensory information (e.g. not asking staff to turn down the music in a café), not stimming when you feel unregulated, resisting the urge to speak about a special interest, rehearsing social interactions, or using communication techniques such as active listening skills.

In person-centred theory, humans are a social species, and belonging is one of our most fundamental needs. Humans will do anything to earn that sense of belonging, including ignoring their own needs, and this can lead towards psychological disturbance where we lose contact with ourselves to ‘fit in’ - this results in incongruence and anxiety but at least we gain a sense of belonging rather than rejection or bullying. We learn how to perform and behave socially early in life, and this is especially true for an autistic person who learns to mask. Masking is adaptive and helpful in moderation, and we will all mask our true feelings/desires from time to time. However, with autism, there is more pressure to fit into a neurotypical world which can result in masking almost constantly socially and removing ourselves from our experience.

Masking is exhausting, as you are effectively performing (just like if you were giving a speech). Masking is also anxiety-provoking, wondering if you will be accepted or be able to continue masking. When we mask constantly, it can lead to clinical social anxiety in unknown situations as well as a sense of depression at the futility of not being fully known. If you are seeking therapy, one of the most healing things is finding a therapist where you can begin to unmask and have all parts of you accepted and understood. To find an environment where you can realise you are not disordered or wrong but can experiment with safely being.

Behaviours that challenge & meltdowns (reactive and proactive strategies)

Behaviours that challenge (including meltdowns) are terms for when a person is overwhelmed and no longer in control. The person who is overwhelmed is incredibly anxious and distressed and trying their best to control the environment to feel regulated. The behaviour itself can appear ‘naughty’ or ‘unsafe’, but we need to understand that the person is just trying to calm the environment to the best of their ability rather than trying to make a scene or be challenging. Some examples of BtC include self-injurious behaviours such as headbanging/biting oneself, running away, shouting, hitting/biting others, destroying property, as well as demand avoidance.

United Response (2015) wrote an excellent paper on positive behavioural support planning to help a person who is at risk of showing BtC. It considers all behaviour a form of communication including BtC, and considers firstly how we can recognise the need the BtC is meeting, secondly how we can implement strategies to reduce the likelihood of a person becoming overwhelmed, and thirdly how we can reward and encourage positive behaviour (punishing negative behaviour does not work – see my spoof article on if torture would rehabilitate. 

We mentioned how 90% of autistic individuals have sensory processing sensitivities. BtC is often caused by sensory overload where there is too much sensory information for the person to self-soothe and regulate so they become overwhelmed and at risk to themselves or others, for example, a room feels too noisy with a loud TV on, so they smash it. Learning a person’s sensory profile can help to understand what might pose a risk for sensory overload and with that a risk of BtC.

The sensory overload may be because of the environment (e.g. noise, light, smells) but it may also be internal to the person (e.g. head banging may be caused by toothache). A person may also find that the Triad impacts BtC, for example, social interaction could become too intense and overwhelming or masking too exhausting to continue. With social imagination, it may be that changes in routine or unpredictable environments create too big a sense of chaos in the world and a person is dysregulated and anxious. 

Proactive strategies seek to create environments where a person can be regulated (e.g. low-sensory environments), in control, and able to communicate distress. A proactive strategy would look at previous BtC, looking at exactly what happened, what/whom it was in response to, and the consequence of that behaviour (e.g., ‘It was my time to present so I shouted and swore which meant I got sent out of the classroom and did not have to present’). Proactive strategies seek to avoid what/whoever caused the overstimulation and teach other less challenging ways of getting their needs met (could they, for example, say that they do not want to present today or have not prepared?) and an understanding of why the alternative might be more advantageous.

Reactive strategies again consider the person’s unique sensory profile and how their ASC is expressed. From that, and specific examples of BtC, it looks to regulate the person. An example might be removing the sensory stimuli for someone who is hypersensitive (e.g., quiet the room down, or turn down the lights), vacating the room to give the person a chance to be alone, asking the person to go on a walk outside of the environment, or if it is triggered by a specific person that person distancing themselves.

Reactive strategies might also seek to reduce harm done to the person or others around them for example putting a cushion in the way if a person is head-banging on a wall or removing a sharp object from the room if it is safe to do so. Restraint is sometimes used if a person is at risk of harm to themselves or others – this should be an absolute last resort and not done by a person without training, it should also only be done if it meets the person’s care plan (e.g. if you have hyper-touch and someone intrusively restrains you it can be incredibly traumatic). Restraint generally can be quite shaming and distressing for the person being restrained. In the short term restraint might reduce harm, but in the long term contributes to BtC rather than reducing it.

10. Mental health, support, and counselling

Our mental health and well-being are an interchange between our biology and our environment. The world is designed for neurotypical people in terms of access and communication, and people who are neurodiverse face many barriers, misunderstandings, and even discrimination. This can lead to an increase in mental health needs. 

Mental health

It is estimated that 25% of the general population will have a mental health problem during their lifetime; however, for autistic people, this figure is more like 70-80%.

Anxiety

Anxiety is a large spectrum of diagnosable mental health issues. It can present quite differently between people in their thoughts, within the body or emotionally, and be triggered uniquely for everyone. The NHS calls anxiety “a feeling of unease, such as worry or fear, that can be mild or severe” and includes panic disorders, phobias, social anxiety, generalised anxiety, and post-traumatic stress. 

Autism is characterised by social communication and social interaction difficulties, so it is unsurprising that rates of social anxiety are high. The Autism Research Group cite how neurotypical social anxiety is often about embarrassment from others whereas social anxiety in autism is more linked to performance. Namely, a person cannot rely on self-soothing techniques such as stimming as freely in social settings, and a sense of having to perform or not knowing how to respond socially. An autistic person may have a perpetual sense of getting it wrong and feel an intolerance towards the uncertainty of how a social interaction is going.

Obsessive-compulsive disorder (OCD)

Linked to anxiety, autism is also marked with social imagination needs where routine and structure are important and losing that routine can be incredibly distressing. OCD is another neurodiversity that has some overlaps with ASC. A person with OCD will notice a thought that demands they do something, then a compulsion to do that thing, and intense anxiety and dread until it is accomplished. A person may have both ASC and OCD and the two have overlap around routines and rituals that need to happen for the person to feel secure.

A person with ASC will face similar anxiety if their routine is broken, which may seem disproportionate to the change, but we need to remember that routine and structure provide certainty in a chaotic world. This could include changes to rituals such as bedtime routine, settings where we cannot predict outcomes as easily, not being able to stim to self-soothe, or if there is an interruption to a special interest.

Grief

Being a parent to an autistic child involves the beauty of learning about their unique ways of being (hence writing this article as everyone with ASC has their own unique profile). The connection and attachment can be very powerful, and when someone dies there can be an added layer of loss of losing someone who understands and accepts them. We also talked about the importance of structure, routine, and safety in a chaotic world, and losing a loved one represents the ultimate loss of that. Around the time of the death, there is likely to be a lot of change – perhaps a moving of home, a change of role within the household, a lot of administration around the death.

Funerals can also be very social neurotypical ritualised events that can be confusing with expectations of ‘the right way to grieve’ when everyone’s grief is unique and at their own pace. When someone dies, we can also use vague language e.g. “They’ve passed away”, “They’re looking down on us”, or “They’re in the clouds with the angels” which can be confusing if taken literally when one of the tasks of grief Worden mentions is emotionally locating that the person has really died. Grief can also evoke powerful feelings in us such as anger, and intense pangs of grief; if we have alexithymia, these strong feelings can be even harder to recognise or manage.

Loneliness

Autistic people may struggle socially or feel socially anxious, but they still have a need for connection. A combination of wanting close connections and friends or wanting to fit in and belong in a group, alongside feeling different or unable to connect/understand social etiquette can be very isolating and lonely. There can be loneliness when trying to connect with people between the type of authentic connection they may enjoy versus the models of friendship they encounter, e.g. with their special interests. We can then feel lonely when we do have not enough connections, but also when the connections we have aren’t meeting our relational needs.

A number of charities set up groups for autistic people; if you’re based in Oxford you might appreciate these links on Oxford Aspie’s site. It can also be useful to see if there are groups, gatherings, and events for people with similar special interests e.g. using Meetup. The internet, online groups, and gaming have been useful in providing some connection over a shared interest and can contribute to meeting some of those social needs. Virtual meetings or text-based communication also give us more time to process, respond and have a sense of control over what we discuss (e.g. in forums). However, we need to consider internet safety and the risks around exploitation from others.

There can also be cultural NT extrovert expectations that spending too much time alone means that a person is lonely. Autists often have far greater tolerance to isolation than NT people. They can also derive great joy from special interests and hobbies and have less of a need for a NT or extroverted level of social interaction. Questions like “You must be lonely” can cause a person who is quite self-sufficient to again question if they are getting it right or push themselves into uncomfortable social interactions.

Trauma

Trauma is a human response to a situation that is overwhelming, frightening, or existentially disturbing. It is not a weakness, but the body’s way of coping and processing. Sometimes traumatic information can lead us to keep reliving the situation and find ourselves disturbed longer term by an event (e.g. developing PTSD if we were a victim in a crime) or continual series of events (e.g. developing CPTSD if our caregiver abused us continually or we perceived them as doing so). Trauma isn’t guaranteed from an event or series of events (otherwise ambulance drivers or police officers would be perpetually traumatised from their work), but more concerns how the traumatic event(s) impacted and are interpreted by us emotionally and existentially – i.e. it’s our perception more than the event.

An autistic person may find an environment traumatic and overwhelming, that a NT would not – for example continual sensory overload from noise, places where you feel wrong/misunderstood/bullied, sudden changes in schedules that feel chaotic and out of control (control being a protective factor against trauma). Dr Freya Rumble wrote more on autism and PTSD where she cites that rates of PTSD could be up to ten times higher in autistic people than NTs. Because of the prevalence of trauma and perpetual sense of feeling different, as well as interoceptive issues/alexithymia, an autist may also need help to recognise when they are experiencing trauma, whereas an NT who has experienced a traumatic event and suddenly starts experiencing palpitations, flashbacks, sweats and a sense of dread or terror may be more inclined to feel something is wrong and seek support.

Suicidal thoughts

Suicidal thoughts are more common than people think and talking to others can reduce, normalise, and soothe them. If you are having suicidal thoughts, and especially if this is leading towards ideation or a plan, please call Samaritans for free on 116 123 or you can email jo@samaritans.org. It is worth exploring what the suicidal thoughts are about: perhaps you are ruminating on the act of suicide or are disturbed by thoughts of this, maybe it’s about escaping from a situation or some respite from life, or maybe it’s about being noticed or missed? Suicide can be a scary thought to hold in our heads and sharing it with a professional or supportive other can help to make sense of it and keep you safe.

Some risk factors associated with suicide are likely to be higher in autism: having a mental health condition, other neurodiversities, feeling isolated or not belonging, not being able to communicate out distress or feeling adequately heard, difficulty in identifying feelings (alexithymia), trauma or overwhelm from situations, socioeconomic disadvantage, losses & bereavements, or chronic pain.

Self-harm

Self-injurious behaviours can include more than just cutting, for example: substance abuse, head banging, pica, reckless behaviour, binge eating/purging etc. Instead, we can view self-harm as a coping strategy and may want to consider how all behaviour that helps us cope or rewards us could become self-injurious or neglectful if done to excess (for example, if I play too many video games I won’t get enough sleep and may neglect to eat/work/exercise; if I shop or gamble too much I may find that I have no money). Cutting specifically may relate to suicidal ideation, but more often it is a coping strategy. When someone uses self-injurious behaviour, we first want to ask ourselves what need the behaviour is meeting. Is it helping to cope with strong emotions, providing a sense of control, communicating distress, punishing themselves, or maybe it’s about feeling alive?

Once we know what need the behaviour is meeting, we can look to see how else that need can be met and reduce the harm e.g. could we put ice on the skin or use a red biro rather than cutting, chewing on hard nuts or chew toys instead of pica, or could we use a cushion if we headbang? You may find this guide from the University of Oxford helpful or Carrie McColl’s article if you have a child who self-harms; charities like Harmless also specialise in this area. 

With ASC there are some added risk factors or communication needs that self-harm might meet. Consider sensory processing needs; a person who is hypo touch/proprioceptive/vestibular may find things like stomping/head banging/punching/fighting/rough play help them to feel regulated and create an awareness of their body and its position in space. If a person is overwhelmed by sensory issues, self-harm may provide a point of single focus or to cope with the overwhelm. A person may also find pica enjoyable if they have preferences for hard food (e.g. eat pennies). Self-injurious behaviour may also be used to cope with pain (e.g. have you ever ground your teeth when you have a toothache?) that cannot be communicated due to communication issues or sensed due to interoceptive sensory issues.

Self-harm can also be linked to stimming behaviour (e.g. hair pulling [trichotillomania] is a common stim but if done excessively when overwhelmed could be self-injurious). With social-imagination self-harm can create ritualised behaviour, e.g. around cutting and cleaning the wound after that can create a sense of control in a chaotic world. Autistic people are also more likely to be bullied, or culturally isolated, and can struggle to communicate this in a way to provide relief which can be a risk factor for self-harm. 

Bullying

Bullying is the repetitive and targeted hurting of another person or group of people. It isn’t always obvious or overt and may include neglecting social exclusions and sarcasm or making jokes at an autist’s expense. An autist may not even be able to read that they are being bullied due to honesty in communication and trust which could add to the dangers of it. It mirrors abuse in that it can be emotional, physical, sexual, financial, psychological, and institutional by not being accessible. Ambitious about Autism reports that 75% of autistic people have reported bullying and only 50% feel safe in school, but bullying and abuse are not just limited to school, we can face bullying in our social groups, online, and in the workplace as adults.

Autism meets the criteria for disability within the Protected Characteristics of the Equality Act 2010. This means that workplaces, schools, hospitals etc should make reasonable adjustments to promote autistic inclusion. What I am saying is that bullying and being institutionally excluded are not okay under the law. Bullying is usually targeted at people who are seen as different or in some way less able to defend themselves. With autism, communication and social interactional needs are likely to make the person more vulnerable to bullying/abuse and less able to recover from that abuse within a secure friendship base. Repetitive behaviour like stimming or sensory overwhelm are also likely to make an autistic person stand out in social environments and risk bullying.

If a person with ASC is distressed and uses behaviours that challenge, that can be seen superficially as ‘bad’ or difficult, which can create labels and misunderstandings. Finally, there are still prevalent misunderstandings, discrimination, and labelling of autistic people that can cause bullying. An autistic person may be hyper-vigilant towards incidents of bullying and in a perpetual state of uncertainty on whether their communication is acceptable to a group or if they are about to be bullied. When they are bullied, they may struggle to voice or report it and doubt whether it is normal behaviour or banter/jokes. For more information on bullying and autism, you may find this link from Anti-bullying Alliance helpful.

Exploitation and abuse

Exploitation, abuse, and neglect are more extreme forms of bullying and can lead to a need for police or safeguarding involvement to protect the person. Abuse can be discriminatory, sexual, physical, financial/material, domestic, neglect through omission, self-neglect, modern slavery, cultural, and organisational. Abuse is targeted at an individual, and to constitute abuse that individual needs to be unable to prevent the abuse. Autistic people are vulnerable to abuse due to the same reasons identified within the previous section, but there are some added vulnerabilities to not having the capacity to stop the abuse.

Having a learning difficulty can prevent us from knowing if we are being abused, social vulnerabilities such as being honest in your communication and not being as aware when others are being dishonest can lead us to not know if we are being exploited; social vulnerabilities and loneliness can make us want to belong and leave us vulnerable to gangs/terrorism/financial abuse, and social interactional issues may mean that we struggle to reach out to a trusted person to get help when we are being abused. If you are the victim of abuse, neglect, or exploitation you may find some of the links in the Preventing Exploitation Toolkit helpful; if you are in immediate danger you can contact the police on 999 or 101 for non-emergency, and your local county council will have its own child and adult safeguarding teams.

Support 

Support can come in different ways from informal, carers, local authority, charities, and private support. Our immediate support will typically be the people closest to us; our family, carers, partner, or those we live with. Likewise, the people close to us are unique with their own needs for understanding, rest, and support. Just as there can be a sense of not belonging in social environments like schools, we can also feel misunderstood, or our needs and expectations not met within our family unit.

The local authority and other public services may also support us. Things like the autism team, an “Education, Health, and Care Plan” (EHCP) at school, support or care workers if we have had a care assessment, social workers if there have been safeguarding concerns, or from the NHS such as our GP/nutritionist/physiotherapy, and the benefit system.

Finally, there may be a gap between what is publicly available, and the support that charities or private organisations provide. This could include respite organisations (e.g. the Newman’s Holiday Trust to take children away over the summer), counselling, social groups, private physio or sensory work, work/education/training opportunities, and budgeting support. For Oxford, The Mind Guide provides an excellent list of local and national charities and organisations that work with a variety of our needs.

Therapy

Autism is not something that we can cure – it’s a neurodiversity – nor is there a medication to change some aspects that can be a struggle. What I am trying to say is that autism isn’t a defect that needs treatment, however, all the different things mentioned in this checklist can present multiple issues that can be useful to unpack within therapy.

For example, therapy (counselling) can help us by:

• Increasing awareness of our feelings in the way they uniquely present to us, managing when they are too intense, or how our needs lead us to behave in ways that we would like to change.
•  Treatment of coexisting mental health conditions can often be unique in the way they present and are affected because of ASC.
• Processing bullying, trauma, and social exclusion.
• Coming to terms with a diagnosis (whether self-diagnosed or medically).
• Coping with changes, aspirations, and losses.

When you seek therapy, you may want to consider some factors: 

• Does your therapist have autism, or are they aware of the experience of an autistic person?
• Are your communication preferences accommodated? Do you need to make eye contact? How is stimming promoted within the therapy room? Can you get up/pause/move/adapt the space to meet your sensory needs? Would you prefer to work remotely through video messenger or phone?
• How much does the therapist direct the sessions? Some modalities (such as my own as a person-centred counsellor) are very open which can be hugely beneficial for tolerating uncertainty of direction and give you a lot of control, however for some people that can be quite overwhelming and agreeing on a clear direction for the therapy or having worksheets/homework/programs can provide a sense of structure.
• Will it be psychoeducational, group programs, or one-to-one?
• Will you be able to incorporate your special interest within the work?
• Can you and your therapist review regularly to check if it is meeting your needs?

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.