Blog 5: Autism Acceptance Week, April 1st – 7th, 2019

Meltdown and shutdown reactions are different in all autistic people but they are always awful.

They can happen following sensory, information, communication, function or emotion overload.

Autistic people can work hard to learn their limits and triggers, but, since Autism is a social, communication disability, and the impact of other people can be significant, it is helpful for family and friends to know how to recognise signs and help prevent meltdowns and shutdowns, so that autistic people can be included in things.

It’s so important not to try to stop a meltdown when it happens, because this is masking. It just puts the meltdown ‘on pause’ and makes it worse and more dangerous later on. Stopping a meltdown is like waking someone up from a nightmare. Whilst meltdowns are horrible, they are the autistic way of releasing ‘bottled-up’ sensory and social stress, like a shaken can of coke. Once it starts, the body needs to see it through until it is ready to cope again.

Here are 15 things you might like to know if you want to support or include an autistic person:

1) It can help to visit new environments prior to an event, film the journey, look at photographs of the venue, and study maps of the places you are going to.

2) It can help to make detailed plans for outings, to know timings, to know exactly when things are going to end.

3) It can help to be continually reminded about what is going to happen next. If something changes, it is helpful to have the reasons for the change explained in detail so that they make sense.

4) It can help to take breaks and to be made to feel like it is okay to take a break, in a calm place.

5) It can help (for so many reasons that will take time to list) to know that you can use accessible toilets without judgement from others.

6) It can help to know that you can use noise cancelling headphones, or anything else that grounds or comforts you, without judgement from others. Many people have ‘stim’ toys, sensory aids and soothing items that help them regulate difficult senses by stimulating the soothing ones.

7) It can help if the people around us are not angry if we start to struggle with things. We are not trying to give you a hard time, we are having a hard time, and we absolutely dread it.

8) It can help to not be expected to communicate verbally when things are difficult.

9) It can help if people warn us before they touch us because light touches can be painful, whilst deep pressure and weight can relieve anxiety quickly.

10) It can help to be given time to respond to any new information, verbal, social or sensory. We will not ignore you, we sometimes need to juggle a lot of things in order to interact with one thing, and this feels pressured.

11) It can help if you give instructions, and communicate directly using clear language (i.e not too many metaphors, analogies, choices or questions.)

12) It can help if the people around us know and accept our ‘stimming’ behaviours if they are safe. These behaviours are like habits, but can be seen to be odd or socially strange. Stimming is subconscious, but autistic people might do it in excitement, in fear, or in an effort to calm an onslaught of senses. Behaviours can include rocking, hand flapping, spinning, sucking fingers etc. Harmful behaviours like scratching skin, banging head or biting, should be prevented but replaced with something safe.

13) It can help to sit or stay near to the exit of a venue so that it is easy to leave.

14) It can help to have a job or responsibility to focus on, so that the focus is not solely anxiety management.

15) It can help if the people around us know, that a meltdown/shutdown reaction is very scary, debilitating, and completely involuntary. The aftermath is exhausting on the body and mind, and the overriding feeling is shame.

All autistic people are different.

This song does well to explain how isolating Autism can sometimes be because of sensory and communication difficulties. It is relatable, and helps to explain that autistic people don’t develop mental health problems because of Autism, they develop mental health problems when people don’t accept Autism, and this can make us feel like bad people.

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