The New Life Autistic Campaign
Words by Ross A Fraser on behalf of the community and in hope of a brighter future.
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A Life Autistic
I am an autistic adult and there are a lot of misconceptions when it comes to autism, I hope this helps. This is based on my own life, experiences, and internal processes, this is my personal viewpoint.
Firstly, I am not always in control, we have essentially two sides to our brains. One we can control, and one we can not. A very instinctual side and a conscious side.
A meltdown is basically mental overload. It can be caused by anxiety or sensory sensitivities – Like steam building up in a nuclear power plant, the only option is to vent and if it is a sensory, remove the cause if you can. For example, my TV broke, a friend gave me her old one from the spare bedroom, but there was a big problem. It emitted this high-pitched sound that perhaps does not bother others, but it drove me nuts. Most lights do too, your, especially industry-grade ones. However, for the most part, they can only be heard when pretty quiet so can be drowned out.
The reaction of a meltdown or high stress is basically like extreme fight or flight. We get hit by sensory information, which is an automatic process, all the time. Loud and high-frequency sounds are very jarring. Shops can be an absolute nightmare. The same applies to all senses, which makes social spaces really tough. Smells/sights/sounds can all be overwhelming because we get hit by everything all at once. To make matters worse, our senses are so sharp that we see more, hear more etc.
The honest truth is this world can be very disabling to an autistic person. We tend to be open and honest in general and do not see social lines and cues like other people do, literally.
I need straightforward instructions. 90% of communication is non-verbal – I see none of that. I literally have to go on what is said and that alone. So for example, if what is said to you is “You are bad”, then you believe that, and it then gets routed in your head.
I am unable to just dismiss a thought, and too many negative ones cause a meltdown. I also do not get to talk properly often. When a child says something like “why are you fat?” to someone, it is seen as rude in society, right? However, I ask these types of questions because I needed an honest answer to clear it out my head. So if you are told the question you have asked is inappropriate, then you start doubting whether you can ask things at all. You don’t open up; you get stressed and this leads to a meltdown. The answer itself is not even that important it is just important that I have one and it is the truth.
My brain is very binary, the way we think has a certain logic to it but we need the right information to draw the right conclusions. I do not see grey areas, and this world is full of them, that has often been the cause of a lot of errors I have made with communication.
The other thing I want to cover is proximity and touch. If you were absolutely terrified, would you want someone to approach you or touch you? That’s what you are seeing – it is a fear reaction. When an autistic person is struggling, try giving them pillows, cushions, a rolled-up duvet and allow them to vent, safely, if needed. It keeps everyone safe. Also, speak in soft tones and limit noise as much as possible. If that is not possible, then try calming music. I find ‘stairway to heaven’ and ‘albatross’ very soothing when I am struggling. Our minds move very fast, listening to music that is soothing and blocking out other sensory input (I use a hoodie, which to me is like having blinkers on) can help.
Space is also really important; you are unable to calm down if you still feel really anxious. Thoughts can get trapped in our heads, staring into space can be a sign of that. Clenching hands when stressed or positioned over the chest or upper body or heavy breathing are also signs to look out for.
You want your child to be more in control, so make sure they feel safe and protected as much as possible, that they can vent without being made to feel bad for it, release the stress build-ups, and feel more comfortable in their surroundings. Perhaps think about asking in local groups if there is an autistic adult that could come and check your house for sensory issues.
As for video games and being in their own rooms for long periods. If the world was an intimidating and scary place to you pretty much every day, wouldn’t you hide too?
A (New) Life Autistic
This is what I propose...
A large part of this was reaching both communities, however I have to admit I didn not expect quite the impact I received from the first post. I was absolutely overwhelmed by the positive response.
I have been working on this idea since my diagnosis on the 14th of September 2020, aged 41. I wanted to achieve two things, a chance at a better future for autistic children and no one to wait till my age to understand who they are.
I was going to put out, and still will, a series of posts explaining autism from my own personal perspective. I check with a few autistic people before posting to ensure I am sending a message we can all agree on. I wanted to change the perception of autism once and for all, it is my words and my experiences but it is for the community as a whole, now and in the future.
I hope that if there are enough people that support this idea and the community will band together. Help make this idea a reality, unite the autistic community and be able to have a real say. Creating a future for the community that currently we can only hope for.
The idea is that, after a few months of raising awareness and understanding the community create 3 hashtags:
All posts using these tags will be checked to make sure there are no trolls or voices against what we are doing, allowing the community to really have their say.
This is for anyone who is autistic and that wishes to speak up but remain anonymous.
This is for anyone who is autistic and on social media or wants to be seen supporting the community.
I am well aware there are some people who try incredibly hard to understand and help us be understood. This is for them, parents, siblings, friends, teachers, doctors… anyone that wants to help us achieve our goal and get real issues discussed.
These hashtags run for 1 year, at the bottom of the posts, put a list of 10 things you want to see change for the better.
A list will be compiled, this list will be however long it needs to be, so that everything that matters is included. Everything mentioned may not be included, but everything that is important to us will be. After the year, a process will start that narrows down the issues that are fundamental to the future of the autistic community.
An online charrette will be set up to discuss the issues.
A charrette is a large-scale community discussion, usually important issues, backed by the government so that decisions are final. Government backing is essential so that the changes agreed on are put in place. Both the autistic and non-autistic communities are represented, discussing the issues that matter and finding solutions together. At the end of the process, a selected panel (made up of autistic and non-autistic members) will vote on the key points raised and the results will determine permanent adjustments needed going forward. I have been working towards this idea so that we can have our voice included and really ensure the right things are in place for the future for all of us.
I am already campaigning to change the media, just some examples:
Including autistic people, from different walks of life, in debates on topics that directly affect our community.
Better access for more autistic people in the media on both sides of production. An autistic therapist on daytime TV at least twice a month.
More autism-friendly media in general, this will be a long-term goal but we can certainly work towards it.
And that is just media, imagine the subjects we can really discuss if we go ahead with this. With both the community and those that support us working together, I estimate it will take 2-3 years to achieve. Lots of voices together and separate, working towards real irreversible change.
To be clear I’m not saying everyone can do what I have. By the time I got my diagnosis, I had a real deep need to understand myself. I had felt caged all my life, surprisingly the diagnosis led me, eventually, to feel unleashed. Determined to help the community as much as I can.
I know my experiences are probably like 1% of the bigger picture, if that. That is why I think we need to have as many viewpoints as possible. Building to a collection of knowledge that is just not there at the moment. It is also for peace of mind for parents, some of the stories I have heard are just heart-breaking. Especially when it comes to the removal of care due to age not care needs.
I did this for the community, what I get out of it is seeing things get better for autistic people within my lifetime. And like a lot of people, I am very sure, I really would like to see that. To be honest I think there is a part of me that needs to see that.