Understanding Autistic Meltdowns and Shutdowns

Meltdowns and shutdowns are intense, uncontrollable responses to overwhelm. Many autistic people of all ages and backgrounds have meltdowns and shutdowns, but these responses are often misunderstood by the general public. This guide to meltdowns and shutdowns is written by an autistic person and is designed for autistic people, those with autistic loved ones, and those who simply wish to learn more.

Understanding Meltdowns

When somebody is experiencing high levels of anxiety or overwhelm, the brain signals the release of stress hormones, which trigger the ‘fight, flight, freeze or fawn’ response. For autistic people, this can trigger a meltdown, which is equivalent to the ‘fight’ response.

Meltdowns can manifest in many ways, with some common behaviours including:

·      Shouting/screaming

·      Crying

·      Growling/making noises

·      Kicking

·      Hitting

·      Flapping limbs

·      Self-injury

Meltdowns are not ‘temper tantrums’, nor are they a result of malicious intentions. They occur when an autistic person is so overwhelmed and distressed that they lose control of their behaviours and are unable to express themselves in any other way.

Meltdowns can be triggered by many factors and are often due to the build-up of multiple factors. Because autistic people interpret information and sensory stimuli differently to non-autistic people, things that may seem ‘insignificant’ to an outsider may be very overwhelming for an autistic person.

Some common factors that may trigger a meltdown include:

·      Sensory overload/overwhelm (e.g. bright lighting, loud/overlapping sounds, crowds, itchy clothing, food tastes and textures, strong smells).

·      Social situations (especially social misunderstandings and unfamiliar social situations).

·      Experiencing change and unpredictable circumstances.

·      Bodily cues (e.g. hunger, thirst, needing the toilet, pain, illness).

·      Emotional situations.

Some people will show signs of distress leading up to a meltdown. For example, they may appear to be agitated, show signs of anxiety (e.g. shaking, sweating or continuously seeking assurance) or stim more frequently (e.g. pacing up and down or fidgeting). In some occasions, it can be possible to prevent distress from escalating into a meltdown by removing triggers and diverting attention with distractions.

How to support somebody who is having a meltdown

·      Do not judge – meltdowns are uncontrollable and are the result of intense stress. Shaming the behaviour or labelling it as a ‘temper tantrum’ will not help.

·      Tell the person that you are there for them. However, do not constantly talk or try to touch them as this can add to the overwhelm.

·      Avoid asking questions or giving instructions.

·      Match the person’s energy. For example, use a firm voice if they’re shouting and a quiet voice if they’re quiet.

·      Give them time. It can take a long time to recover from a meltdown.

·      Try to remove any triggers. For example, if a bright light in the house could be a trigger, turn it off if you can. Similarly, if you’re in a crowded environment, lead the person to a quieter space if they have the capacity to co-operate.

·      Offer a grounding object to the person (e.g. a fidget toy, favourite plush toy or figure).

·      Different people have different needs. Discuss the things that could help the person when the meltdown has passed.

Understanding shutdowns

Shutdowns are caused by sensory, emotional and/or informational overwhelm (much like meltdowns) and are the equivalent to the ‘freeze’ response.

Shutdowns can manifest in many ways, with some common behaviours including:

·       Find it difficult to speak or lose the ability to speak (known as going non-verbal).

·       Isolate themselves and/or feel the need to be alone.

·       Become intolerant to light or any kind of sensory input.

·       Have an intense need to hide away in an isolated space, such as their bedroom.

·       Experience extreme fatigue and/or lose the ability to move.

·       Have reduced patience and ability to regulate emotions.

·       Become indecisive.

·       Experience difficulties regulating temperature (too hot or too cold).

·       Mask more than usual.

Meltdowns and shutdowns share many of the same triggers. Any situation that has the potential to cause distress, such as sensory overload, social situations and change, can trigger a shutdown. Like meltdowns, shutdowns can be mis-interpreted by outsiders. When somebody is having a shutdown, they are not being ‘anti-social’; they are extremely overwhelmed/distressed and need space to regulate.

How to support somebody having a shutdown

·      Do not try and force them to ‘snap out of it’ or force them into uncomfortable situations. Shutdowns are not a choice, and this is likely to cause further harm.

·      Try not to judge; they’re not trying to be ‘anti-social’.

·      Give them plenty of time and space. If they want to be alone, respect this.

·      Try to create a quiet, safe space if possible.

·      Ask them if there’s anything that you can do, but don’t force a response or reaction.

·      After the shutdown, ask the person what they would find to be helpful if the situation were to occur again.

How to support yourself and advocate for your needs:

·      Identify your triggers by reflecting on the things that cause you to become overwhelmed, and the things that have triggered meltdowns/shutdowns in the past.

·      Communicate your triggers and anything that can be done to reduce exposure to them with your support network.

·      Prepare for potential triggers by keeping items such as noise-cancelling headphones and sunglasses on-hand.

·      Create a list of the things that may help you during a meltdowns/shutdown and keep them on-hand. Some useful items may include fidget toys/grounding objects, ice packs or heat packs.

·      Practice self-care after a meltdown or shutdown and keep regulating items on-hand. For example, if you experience dehydration and dizziness after meltdowns or shutdowns, you may find it helpful to carry rehydration sachets, water and safe snacks with you.

·      Let your loved ones know how they can identify a meltdown or shutdown and suggest ways in which they can support you if a meltdown/shutdown were to occur. For example, if you need space, communicate this with trusted people who you spend a lot of time with.

Ways to reduce the chance of a meltdown or shutdown occurring

·      Identify triggers in advanced so that you can try and avoid them to the best of your ability. Many triggers cannot be eliminated, but you could try and limit your exposure/your loved one’s exposure to them.

·      Carry disability aids such as noise-cancelling headphones, sunglasses and fidget toys around with you.

·      Carry a comfort/grounding item around with you, such as a soft toy.

·      Try anxiety-management techniques such as breathing exercises and mindfulness at the first sign of distress.

·      If familiar sensory input is something that can be calming for you or your loved one, you could prepare a playlist of calming music, carry around familiar sweets/toffees or spray a familiar fragrance onto a portable item.

·      Try to find distractions in times of distress, such as engaging in a favourite activity or special interest.

Summary

Meltdowns and shutdowns may become easier to manage over time, but many autistic people experience them throughout their entire lives. No two people have the same needs, and there is no singular, universal way to support somebody who is having a meltdown or shutdown. If you’re accompanying somebody who is having a meltdown or shutdown, the best thing that you can do is remain present with them whilst also giving them plenty of time and space. Remember, meltdowns and shutdowns are not choices, nor are they anything to be ashamed of. They’re natural and valid reactions to overwhelm.

-Kirsty

Overcoming Fear of Uncertainty

Fear of uncertainty is a universal human experience, but it can be much more intense for certain individuals. For example, autistic people, people living with anxiety disorders and people who have experienced trauma are more likely to have a lower tolerance for uncertainty.

As an autistic person, I've always struggled to cope with uncertainty. However, my tolerance for uncertainty became even lower after facing several traumatic bereavements and unprecedented distressing situations throughout my teenage years and early 20's. As a teenager, I developed a severe eating disorder and in retrospect, I can recognise that it arose as a subconscious effort to create a sense of predictability, as well as a feeling of control. Ironically, the physical health implications and extended hospital admissions caused by my eating disorder left me completely out of control of my own life.

I'm now in recovery and attempting to take back control of my life. However, I'm now having to face the unpredictability that accompanies the the thought of a future free from rigid routines and rituals. I feel a lot of pressure to decide what I'm going to do with my life when my days no longer revolve around appointments and meal plans. When faced with an abundance of options, my natural reaction is to 'freeze' and refuse to make a decision out of fear of choosing the 'wrong' option. I'm also inclined to make a choice (after much ruminating), only to opt out or change it at the last minute incase it isn't the 'perfect' choice. This is something that I've recently become aware of, so I'm actively trying to reframe my anxieties and change my reactions.

Recently, I've managed to do things that would've felt impossible a year ago, such as eating at restaurants, changing my routine, going on days out, meeting new people and volunteering. There are a few techniques that have been helping me to become more accepting of the idea of change, and even seek out unfamiliar experiences. These techniques will not cure a fear of uncertainty; the brain is wired to identify potential threats, even if they're very unlikely to occur. However, through recognising this and implementing some of the following techniques, I'm slowly learning how to cope with unpredictable situations.

Finding meaning and purpose in change

Assigning meaning and purpose to uncertain/unfamiliar situations can help with the management of fear. When I notice an anxious thought, I'm actively trying to find an alternative way to look at the situation. For example:

Anxious thought: 'I feel so uncertain about my future and the path ahead is unclear. By refusing to make decisions, refusing to try new things and engaging in unhealthy coping mechanisms, I'm eliminating the possibility of making the wrong choice'.

Reframed thought: 'By refusing to make changes, I'm eliminating the possibility of a positive outcome. If my fear of change is rooted in fear of negative outcomes, does it really make sense to choose certain misery over potential joy?'

Remember that thoughts are not facts

Oftentimes, we can logically comprehend that our thoughts are not facts, but still find ourselves caught up in mental rumination. Creating reminders that your thoughts are not facts, such as on post-it notes or in journals, can help to bring you back to the present moment. The more you remind yourself that your thoughts are not facts, the easier it will be to remember this and observe your thoughts from a distance.

Roll a dice

If you happen to have some free time during the day, you can work on your cognitive flexibility by writing a list of 6 potential activities that you could engage in, and rolling a dice to decide which activity to do. This can also be helpful when challenging rigidity around food: for example, you could write a list of 6 potential lunchtime meals and roll a dice to decide which of the 6 to have.

Routine

Having a routine can be very grounding. Routines shouldn't be obsessive or compulsory; they should suggest a general structure. It also helps if routines can be followed regardless of the location or environment so that you can turn to them for comfort in unfamiliar locations. For example, performing set of activities such as stretching, meditating, journalling and listening to a comforting song every morning and evening can create a sense of routine, even amidst change.

Balance

It isn't always possible to balance uncertainty with familiarity, but when circumstances permit, it can be a good strategy to manage anxiety. For example, taking familiar objects to unfamiliar locations can provide a sense of safety. Where possible, scheduling structured rest days amidst unpredictable days can also be beneficial.

Community

Having a sense of community is essential for wellbeing, even for introverts. Having a small circle of close loved ones whom you can reach out to is a blessing, and I try to remind myself of this when things seem overwhelming. If you struggle to communicate your problems and worries, it can be helpful to write them down or to tell a loved one that you're not sure how to approach the topic, so that they can support you.

Conclusion

It's very natural to have a fear of uncertainty, especially if you're neurodivergent or have experienced trauma. Having a low tolerance for change and uncertainty isn't an inherently negative thing; routine and consistency can be very beneficial in many areas of life. However, a fear of uncertainty can become problematic if it causes distress and unhealthy behaviours, or if it affects your ability to make decisions, try new things and connect with others. Mental flexibility can be expanded, although some individuals may have a lower capacity for uncertainty than others - which is completely valid and should be respected. The goal isn't to become completely spontaneous, but to reduce negative symptoms over time.

-Kirsty

Challenging Misconceptions about Autism

Despite a recent increase in awareness, autism is still largely misunderstood by non-autistic people (also known as ‘allistic’ people). This is partly due to the prevalence of misconceptions and stereotypes relating to autism, especially those perpetuated by the media. Despite often being mentioned with innocent intentions, the perpetuation of such misconceptions can be very harmful. In fact, the traits that are largely associated with autism are not congruent with the experiences of many autistic individuals from under-represented backgrounds. Therefore, I will be exploring the ways in which stereotypes and misconceptions can cause harm, the ways in which autism can present across under-represented groups, and my own experiences of growing up as an autistic female.

Personally, I’m quite open about my diagnosis of autism; I have no shame in sharing the fact that I’m autistic if it’s relevant to the conversation or if I believe that I could benefit from reasonable adjustments. Disclosing the fact that I’m autistic, however, is often met with misinformed (albeit well-meaning) responses. I’ve heard a lot of these kinds of comments throughout my life, with some of the most memorable being:

·      “I’d never have guessed; you don’t look autistic!”

·      “You must only be mildly autistic; you’re a great conversationalist”

·      “Really? My distant relative’s friend’s son is autistic and he’s nothing like you!”

This is by no means a dig at the people who have said these things; with the abundance of misinformation floating around, it’s no surprise that many people internalise inaccurate stereotypes. Within the media, autism has historically been associated with specific tropes, such as the trope of the socially awkward, Caucasian male who excels at maths, adores franchises, and whose autistic traits (such as sensory processing difficulties, stimming and literal thinking) provide comic relief. The character of Sheldon Cooper from The Big Bang Theory is an example of this trope; many viewers assume that he’s autistic, even though this has never been confirmed within the show, which highlights the prevalence of stereotypes relating to autism.

Some more common stereotypes and misconceptions about autism include:

·       All autistic people are introverted and socially awkward

·       All autistic people are rigid and literal thinkers

·       Autism is a ‘new’ or ‘modern’ condition

·       Autism isn’t a disability

·       Autism is only present in Western cultures

·       Autism is caused by vaccines / modern medicine

·       Autistic traits are the result of an individual’s upbringing

·       Autism can be ‘cured’

·       All autistic people struggle to show emotions and empathy

·       Autistic people are violent

·       Autism is caused by vaccines

·       You can tell if somebody is autistic by looking at them

·       All autistic people possess the same traits, e.g. an intolerance of loud noises

The issues caused by such misconceptions include, but are not limited to:

·      Autistic people’s individual struggles being overlooked or dismissed because they do not fit very limited stereotypes

·      High-masking autistic people, especially autistic females, being dismissed or denied the support that they desperately need

·      Heightened discrimination against autistic people from global-majority backgrounds

·      Heightened focus on the presentation of autism in Western societies

·      The dismissal of cultural factors that may affect the presentation of autistic traits

·      Perpetuation of the assumptions that autistic people lack empathy or are violent (this is very rarely the case, even though some autistic people may have meltdowns and struggle to portray empathy in a neurotypical manner)

·      Social exclusion and discrimination

·      Internalised ableism resulting in barriers to education, training, employment and healthcare

Of course, there are some autistic people who do possess stereotypical traits, just as there are some neurotypical people who also possess the same traits. My aim isn’t to dismiss these individuals, but to demonstrate that autism is a neurodevelopmental condition with traits that exist on a spectrum; a spectrum that is much more nuanced than a scale ranging from ‘less autistic’ to ‘more autistic’. It's also worth noting that scientific evidence shows no causal association between autism and vaccines. The autistic brain exhibits unique structural and functional differences compared to the neurotypical brain, with significant differences present in the cerebellum, amygdala and hippocampus. Autistic brains exhibit altered patterns of connectivity, a potential reduction in synapses, and differences in neurotransmitter systems. Genetic factors and developmental differences are thought to be the predominant causes of these differences. This is a very brief overview, but there is an abundance of evidence to support the fact that autistic behaviours are not a choice.

I am aware that as a white, British individual, I am very privileged in many ways. Therefore, I cannot speak for autistic people from global-majority and/or non-white backgrounds, even though this is a very important issue within itself. However, I can provide some insight into how my autistic traits manifest as a female, and how this has impacted my life. Considering the fact that I displayed autistic traits throughout my childhood and struggled significantly at school, I wasn’t diagnosed until the age of 13 (which is still significantly earlier than many autistic females). The characteristics that I now know to be autistic traits, such as struggling socially, having a slow processing speed, needing predictability/routine, experiencing sensory issues, copying others, extreme fatigue, having intense obsessions/hyper-fixations, executive disfunction, difficulty switching tasks, being extremely anxious, over-analysing everything and failing to see the ‘bigger picture’, were dismissed due to my quiet nature.

I strongly believe that many stereotypes of autism are based upon a specific set of traits that can be observed in some autistic males. Statistically, autistic females are much more likely to go undiagnosed until adulthood, or to be mis-diagnosed with mental health conditions such as anxiety disorder. The reason for this is likely due to a combination of genetic predisposition and social conditioning. Many autistic females develop strong ‘masking’ skills as a way to cope with a hostile society. They may imitate their peers to fit in and memorise conventional conversation topics, actions and gestures. Furthermore, common ‘special interests’ amongst autistic females include celebrities, beauty, animals, music, books and TV shows/films. Such topics may be viewed as ‘socially acceptable’ interests for women, and women who hyper-fixate on more unconventional topics may be treated differently to those who don’t.

I imagine that the dismissive comments I have previously received after disclosing my autism diagnosis are a reflection of my ability to mask. During my early childhood, my autistic traits were much more obvious. I had very strong hyper-fixations on things that weren’t popular amongst my peers (a memorable example being classic Tom and Jerry cartoons), I often had uncontrollable public meltdowns (despite being otherwise very quiet), and I would follow very rigid routines. Because of this, I was bullied at school, labelled as ‘spoiled’ and ‘selfish’ by some adults, and struggled to make friends. Over time, I learned to keep my interests to myself and began to mimic others, even if it made me uncomfortable. My hyper-fixations also shifted over time: as a teenager, I hyper-fixated on specific bands and the people I was crushing on at the time. The only thing separating my hyper-fixations with conventional teenage interests was the intensity of my obsession. My tendency to become fixated on a specific topic morphed into something more sinister when I experienced several close and traumatic bereavements, the first of which occurred when I was 15. As a way to cope with overwhelming emotions, I unconsciously began to obsess over calories, food and my weight. I was subsequently diagnosed with anorexia nervosa. My eating disorder was never driven by a desire to look ‘skinny’; rather, the physiological impact of starvation numbed difficult emotions and provided a feeling of control. During a very difficult period of my life, the rigid routines and rituals associated with anorexia ensured that every day was a predictable repeat of the last, which gave me a sense of safety and distance from potential threats. It’s predicted that up to 35% of people diagnosed with an eating disorder are also autistic. Upon reflection, it makes sense that autistic people are prone to developing thought processes and behaviours that provide routine, predictability and solitude in an often overwhelming and unfair world. Additionally, autistic people are more likely to experience intolerances to certain tastes, textures, smells and visual stimuli. They are also more prone to developing specific 'safe-foods', routines/rituals relating to eating and fears around eating, such as the fear of choking.

It's worth noting that routine, predictability and solitude are not desired by all autistic people. The idea that all autistic people are introverts with rigid thinking styles is another stereotype. Many autistic people are highly creative, spontaneous and emotionally intelligent. Lots of autistic people are also sensory seeking, meaning that they actively seek out sensory stimuli, such as lights and loud noises, to self-regulate. I know multiple autistic people who need constant stimulation and company in order to function. Although this opposes the typical stereotypes associated with autism and I can’t relate to their needs, this doesn’t mean that they’re any less autistic – nor does it invalidate their individual struggles. 

Furthermore, it isn’t uncommon for autistic people to have a mixture of all of these traits. Personally, I need routine, predictability and solitude to function. However, I also love to go to coffee shops, bars and concerts with friends when the plans have been made in advanced. I’m quite creative, I can think ‘outside the box’ and I’m a big fan of live music, even though I’m not great with sudden loud noises. Even though I can be socially awkward at times, I can engage in small talk with both familiar and unfamiliar people. I’m often complimented for being ‘polite’ because I’ve memorised scripted conversations for almost every occasion. However, just because I can do all of these things, I do find that they massively drain my energy. My abilities also fluctuate day-to-day, and oftentimes, I need several days of alone time to self-regulate after an intense interaction or event. I have a much slower processing speed than the average person and if I overwhelm myself by taking on too much, I can completely lose my ability to function. These factors, when paired with my various disabilities/chronic health conditions, affect my ability to engage in tasks associated with daily living and limit my employment opportunities.

It's estimated that only around 22% of autistic adults are in paid employment in the UK. This is likely due to barriers to employment such as a lack of understanding from employers, inaccessible recruitment processes and a lack of appropriate support. However, this doesn’t mean that all autistic people are unable to work. Many autistic people thrive in full-time employment and/or self-employment. On the other hand, some autistic people are completely unable to work or volunteer, and this is also perfectly valid.

Ultimately, autism is a neurodevelopmental condition that manifests in a diverse range of behaviours, thought patterns and traits. No two autistic people are the same and every autistic person has a unique set of abilities. The stereotypes of autism seen within the media may represent a percentage of autistic people, but the perpetuation of stereotypes can be harmful for those who don’t fit into them. For example, autistic people who don’t display stereotypical traits are less likely to be diagnosed and more likely to engage in harmful or self-destructive behaviours due to a lack of support. Autistic people from under-represented backgrounds are also more likely to face barriers to support. Therefore, it’s important to challenge misconceptions and recognise the many diverse ways in which autism can manifest.

-Kirsty