On World Mental Health Day 2023, we’re exploring issues around autism and mental health.
MacIntyre’s Autism Network, for autistic people who draw on our support and autistic staff, summarises some key points.
‘Masking’ is a way of coping but can lead to anxiety and result in autistic burnout, shutdowns or meltdowns. A person’s ‘mask’ is not something that can easily be taken off. Masks often have many variables and have been worn for so long they become part of muscle memory, where people don’t know how to stop masking.
Often the only time the mask may come away is when someone is with people they trust and feel safe with.
It is easy to assume everything is okay as the autistic person appears to be alright, but what’s going on in the inside is different. The mask is automatic and hard to turn off, so calm environments and regular breaks can be important to a person to prevent their ‘spoons’ of energy being used up.
Expressions of anxiety
How someone expresses themselves is different from person to person. Some may withdraw and hide or shut down, others may have meltdowns and lash out, shout or break things.
Autistic people witnessing another autistic person having a meltdown can be distressing. The sudden changes in people’s emotions can be difficult to interpret or cope with as things become loud and unpredictable. Some autistic people remember what happens but others explain that their minds go blank and they don’t recall what they do when in a meltdown. The nature of a person’s meltdowns can also change in time too. For example, in school it may be more physical towards people, and in adulthood more self-directed or on objects.
Anxiety and late diagnosis
For those with a later diagnosis, they may have been experiencing severe anxiety for years without knowing why. After being diagnosed, they can now understand where the anxiety stems from and better manage it. This does not make it all go away though. The level of distress a person feels can vary, depending on how they are feeling, sudden car noises, if they have to leave the house (their safe space) and so on.
We can all suffer from anxiety but for autistics the difference is with the daily (sometimes constant) exposure to triggers as well as the length of time it can take to calm down. The severity experienced is higher and feelings can linger for hours or days, building up. It can be hard to have time to process it all and work out the worries in one’s mind, sometimes these opportunities to rest or process don’t happen and that is when difficulties can occur, that some see as ‘behavioural issues’. It isn’t intentional behaviour, it is a sign of distress.
When someone is anxious, this can often impact on their sleep. They may not be able to sleep, or get up a lot to go to the toilet, or need a snack to help reset themselves. Bedtime is quiet with no distractions so it forces you to think about the source of the anxiety. For some people a routine of a square of dark chocolate in the middle of the night is important to them.
Many autistics can struggle with identifying and describing their emotions or the emotions of others. This is called Alexithymia. Anxieties can stem from struggling to interpret what others are feeling based on their facial expressions, body language and tone of voice. This makes it hard for the autistic person to know if they have upset someone. They may worry constantly about having done something wrong, what the person may be thinking about them, whether or not they are being understood, what their own facial expression is saying, how they are being perceived, what do they sound like and so on.
This results in a constant ‘buzzing’ in their minds. The worry and need to plan scripts, practice them and repeat them, just for going to a shop, can take a long time and a lot of emotional energy. Even if everything went okay the need to over-analyse every detail and dwell on them is real, like ‘did I walk okay’. Due to being so preoccupied in thought this can result in some people not noticing their surroundings and increasing risk to themselves by walking across a road without looking. Learning from these experiences then adds more worry and ‘spoons’ of energy being used to force oneself to be more mindful of what is happening around them, adding to the list of things to worry about.
This level of anxiety often stems from the feeling of not fitting in or being told they were weird by their peers as they grew up. Life as an autistic adolescent can be very hard and make people self-conscious. Mix this with sensory processing difficulties, amongst other things, and you can see how hard it must be.
A change to societal systems around educating people and not categorising or segmenting is a hope for the future.
How do you show you care?
Autistic people are often misunderstood. They may use a certain tone that makes them sound blunt or indifferent and this is not the intention. They may be blunt and get straight to the point but this honesty could also be an indication they feel comfortable around you.
Not all autistics are comfortable with hugs and touch, but it doesn’t mean they don’t care. In fact they can be very empathetic, but struggle to read the signs, which can make those they are interacting with become upset. Autistic people may not be able to identify passive aggressive behaviour in others, so continue what they are doing or saying unless someone points out the problem.
Our autistic experts explained that the way they show they care is by doing something physical for a person, e.g. do them a favour, get them a present, do washing up, etc. Caring for animals is also quite popular: animals don’t judge.
Some Autistic people may find eye contact distressing and avoid it. This can cause conflict. But they may still prefer to communicate in person as there is more to ‘read’ in the message being presented, opposed to a text, where the tone is completely unknown.
How best to support someone:
- Be direct and clear with information - no jargon, use a nice tone, especially when anxious
- Don’t hide the truth or sugar-coat things – be honest (in a nice way). Being kept in the dark is infantilising and it is wrong to assume someone wouldn’t want to know
- Involve people in planning and follow the plan – anxiety rises when things change
- Be mindful of environments that cause anxiety – leaving the house can be stressful on its own, let alone not knowing where you are going or who you will see.
- Prepare people for change – if something has to change, give the person notice so they have time to plan and prepare for it as the shock can throw them.
- Make small adjustments - having a room on their own when at the doctors for example. These are not big things to ask for. A little planning and preparation can make a big difference.
- Don’t force your routines on someone - identify together a routine that works for them
- Don’t read negativity into what the autistic person is communicating to you