I have done quite a bit of research to learn about other autistic people’s experinaces

Stimming!

Stimming is the autism community word for what professionals sometimes call repetitive routine behaviours, basically it’s something you do over and over again with your body this could be flicking your hair, flapping,spinning round in circles or rocking . I wanted to find out other autistic people’s experiences so I asked 100 autistic people this is what I learnt from that group

102 diffrent stims ( meaning that a lot of people did more then one stim)

The top 3 reasons for stimming were too

1 calm down

2 manage sensory input

3 reduce anxiety

(there were lots of other reasons which could be around positive emotions too(.

50% of people said they liked to Stim

30% of people said they liked to stem sometimes

72% of people had been told not too slim at some point in their life.

safety for women on the autism spectrum

I wanted to understand how autistic and non autistic might differ in terms of being able to keep themselves safe in everyday life. with my editor lisa clark ( from Jessica Kingsley publishers`) we compiled a list of situations that most people encounter that could present risks e.g friends, relationships, emotions, sex etc

I then made a list of questions to try and understand peoples experience and this is what informed my first book “ the independent woman’s handbook for super safe living on the autistic spectrum”

as a example of things I learnt autistic women were more likely to be manipulated by other people, but non autistic people were more likely to lose money .

Meltdowns

a meltdown is not the same as a tantrum it is when a person becomes completely overwhelmed and is unable to function in a environment , sometimes the behaviour of a person who is experiencing a meltdown can look like they are having a tantrum ( shouting , kicking throwing furniture etc) but unlike a tantrum giving in will not help, people can also have shutdowns which is caused by being overwhelmed but causes a person to retreat for example ( getting under a table , pulling their jumper over their face etc)

I asked autistic people about their experiences of meltdowns many people talked about how ashamed it made them feel afterwards despite the fact that they had no control over the meltdown

Periods

I wanted to understand the different experiences between autistic and non autistic people who have periods, there is lots of diversity in experience in the non autistic population e,g not everyone experiences pain , but what is more difficult for autistic people? I found sensory issues and executive functioning to be key issues for consideration when putting support in place as well as clear information with correct terminology for body parts and body functions, this research is what guided me when writing The autism friendly guide to periods.

@ the hub

I am a member of the core team who have been award the wellcome hub award 2018-2020 we will be researching wellbeing through the lens of learning disability and autism, more updates to follow.