End of the month, but just the beginning
As we come to the end of Autism Awareness month - I wanted to take a moment to share some further thoughts that I have seen shared throughout the past month, but also things I engage with every day as part of our fantastic business.
How do we create more awareness and acceptance around Autism?
In mine and many of my autistic peers' opinions - the best place to start is by talking to, communicating with, or reading accounts by autistic people, and even autistic children.
It is very easy to get lost in a sea of parent groups, specialists with their own opinions, countless organisations and websites claiming to ‘cure’ or ‘change’ or ‘correct’ behaviours etc. but ultimately, no one can know the experience better than someone who is living it.
We should be encouraging - not silencing - those who do speak up about their experiences, and taking the time to listen to what they are actually asking for.
Here is a small but certainly not exhaustive list of small changes you could make both in day to day life and to your perceptions that can make a big difference for autistic people:
Person first language: It has become widely documented that most autistic people now prefer ‘person first’ language, i.e. “I am autistic”, as opposed to “I have autism”. Even ‘person with Autism’ or ‘With ASD’ has started to be moved away from. Autism is not something we have, it is something we are, and using that phrasing really changes the way that we think about and perceive autism, as it stops being thought of as something that can be ‘gotten rid of’ or ‘taken away’. This is, of course, down to the individual, and there are some people who prefer to be referred to as ‘having autism’ and so individual preferences should be respected, however if referring to your child, a person's first language could help them develop a more positive relationship with their neurodivergence.
Adapting situations, not changing people: A lot of neurodivergent children and adults are expected to adapt and change to fit the world around them, and are punished for behaviours that do not fit the mould. Instead of forcing the individual to undergo certain changes (likely resulting in a lot of resistance) we can look at how we adapt the situation to help the autistic child / individual. For example, if a child struggles with meal times or changes in food, this could be to do with a fear over unknown textures, or an increased sensitivity to a certain smell or taste. Instead of becoming frustrated that this is now ‘difficult’ for you - imagine how difficult that might be for that child. Perhaps you could involve them in their day to day meal planning and preparation to give them some autonomy and control over their mealtimes or engage with them on why they like certain foods and textures so you can research similar food types that might be easier to introduce slowly and patiently. I was the fussiest eater as a child and was obsessed with eating certain foods. I also developed an eating disorder in my teens because the lack of control over food was taken away from me as a child. Now I eat EVERYTHING! Just please don’t mix my food on my plate!
‘Meltdowns’ or ‘Distressed’ behaviour VS ‘Tantrums’ and ‘Challenging behaviours’: This is all about removing negative language and replacing it with more factual or realistic terms. An autistic child or person can still absolutely be capable of having a ‘tantrum’, however if a child or person who is autistic has become distressed or triggered by something, this more often than not would be considered a ‘Meltdown’ (the generally accepted and used term) or Distressed behaviour. The person is not actively trying to challenge you (though again that can still happen, particularly in young children who are exploring and pushing boundaries). This reaction can be challenging for both the person experiencing it and to the people around them, but the behaviour itself is not.
Non verbal does not mean non communicative: Many autistic children and people may be ‘Non verbal communicators’ this means that they do not use language or speech the same way that neurotypical people do. This does not mean that they do not understand what is going on around them and that they are incapable of communication. Too often, people can fear that their child being behind with their verbal communication means that they lack the ability to learn or express themselves, and in some cases that they will never develop any sense of independence or quality of life. This is not the case, instead we can look at how we can encourage that person to communicate or express in the way that is natural and works for them. (Check out writer/poet Naoki Higashida, a non-verbal Japanese poet, who has written two beautiful best selling books about his life. He also has a wife who helped to translate the texts to English!)
Verbal does not mean low need: This is a personal one for me (though I suppose this whole post has been!) - I was incredibly bright, verbal and DESPERATE for social interaction as a child and now as an adult. I have desired social acceptance my entire life, and I am able to adapt quite quickly to my surroundings. Sometimes to my detriment as I can even go so far as to start taking on the mannerisms, body language, interests, even sometimes the accent of the people I’m around! I have tried to fit in my entire life. This willingness to interact socially and being incredibly articulate even from a very young age, opened me up to a world of ‘oh, but you don’t look autistic’, ‘oh but you don’t act autistic’, or ‘oh but you must only have it a little bit’. Even so far as leading one specialist to say ‘you’ve grown out of your autism’ (which is biologically impossible). If your child is presenting as very sociable this doesn’t mean that other things won’t be difficult for them and that their behaviours are caused by ‘naughtiness’. Similarly, if your child doesn’t seemingly want to socialise, that’s okay too and they are not ‘broken’ or a ‘problem’.
Do your research: There are forms of therapy available for autistic individuals that many autistic people have spoken up about in recent years. Some of these therapies might seem to be, on the surface, yielding the results a parent or teacher may want to see, but they aren’t always in the best interests of the child or individual. When looking into autism and therapies for autistic people, quadruple check your sources. Google isn’t always the best place. Private blogs, Facebook groups, even Twitter can offer more insight into the real life accounts of people who have been through some of these therapies and worked with these groups, which hopefully will help you make the best and most informed decisions on how to support either yourself or a loved one who is autistic.
We’ve got feelings too: We all know the trope that autistic people are lacking in empathy, emotion or consideration. We are often called blunt, rude or uncaring. This is simply not true. Often autistic people can feel things so incredibly strongly that it can become almost impossible to regulate (which in turn can lead to disassociating or emotionally removed behaviours). Please be patient with us. Whether a person is struggling to identify emotions or react how they’re ‘supposed to’ to certain situations, or whether a person is incredibly sensitive or highly emotional to seemingly nothing, please engage with us. Acknowledge and validate our feelings, and if it seems like it could be a teaching moment for empathy or self regulation, guide and encourage us gently. Let us ‘stim’: Stimming is a tic-like action that many autistic / neurodivergent people have. It is often a repetitive physical action, most common stims include hand flapping, blinking, or tilting of the head. Some stims may look uncomfortable or strange but they are not to the person doing them and they are often used as a tool for self-soothing or to help focus. Whilst writing this blog post I have stimmed TREMENDOUS amounts (my current stim is squeezing and wringing my hands repeatedly. It helps me focus and to organise my thoughts and to process my feelings). As I was made very aware of my stims as a child and as I have become a self-aware adult, I have learned to ‘hide’ my stims and turn them into something less obvious but this has had a profound effect on my mental health as I don’t have the same level of ‘release’ from my new stims. Please don’t discourage these, unless of course these stims are genuinely dangerous and could be considered actual self-harm. Instead of punishing someone for stimming or rewarding them for not, try looking for alternative, safer solutions (For example, clicking a pen or flipping my water bottle lid up and down can have a similar effect as I receive sensory feedback from these actions)
Autism cannot be easily defined. We are not pieces of a jigsaw that need putting together or who are short a few pieces to be complete. Autistic people are navigating a world that wasn’t necessarily designed with them in mind, but we are human beings who can become important and active members of society. We are everywhere, you just might have to look a little harder to see us, and other times we will make ourselves very known.
I consider Autism to be a disability and identify as disabled. I find this empowering as it allows me to challenge people's preconceived notions of what ‘disability’ is. To me it is not a negative term, however the negative implications of my disability do need to be heard and understood, so that I can be supported through them and continue to be the hard working, creative and compassionate person I am.
Spread a little awareness today, and every day.
Can I find out more:
Here is just a very small smattering of other people or organisations you might find interesting to look into, there are lots of fantastic blogs and social media pages for people sharing their experiences that can be really fantastic resources:
All thoughts shared are those of Elinor Fortune and are not representative of the views of SENNIES LTD. and all of it's staff.