Days of sensory hell… Shutdown…

The impact of sensory input is a significant issue for many autistics. Sensory input comes in so many forms. We have the standard five senses that we are all generally aware of however there is also the proprioceptive and the vestibular senses as well. Those two senses relate to how we experience the world and our place in it in a spacial or kinesthetic sense.

So when it comes to sensory input we need to be aware of the fact that it is relevant to all senses. It’s not just the impact of sound and smell for example. We need to be aware of how the impact of being in a crowd can impact. How being on a moving platform for instance can have an impact on a person.

I am sure that many people both autistic and allistic experience difficulties with sensory input. Many will find loud noise for example annoying and hard to deal with. The major difference though is for an autistic person that finds this a trigger for them that it will not just be painful or annoying but in fact it will be or lead to being debilitating.

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I began this post over a week ago and have been in an effective shutdown state since. Pretty much getting up eating and watching TV is about all I have managed to do successfully. Anything else has been just too much to deal with.

In the parlance of Spoon Theory I had run out of spoons and just can’t even…

This has been as a result of a difficult week away with my family. The family time could have been fantastic but it was unfortunately hi-jacked by a couple of men and a woman who seemed only to be able to enjoy life by making life miserable for all those around them! The family and I went away on a family camp. It should have been a good experience, even though it was bound to be hard to deal with just from the sensory challenges it was going to present. Being with 50 other people who I didn’t know and interacting with them. Dealing with being in environments where there would be a lot of noise and a lot of threads of noises going on. It was always going to be tough for me personally but it could have been a success. Unfortunately it wasn’t.

The reason behind this was due to two things. The absolute abysmal and selfish actions of the above mentioned people and a complete lack of insight and leadership by the camp leaders.

What I have learned from this experience is that it has underlined again the reality of how much exhaustion results from “faking it till you make it”. But even more so is the need to speak up to my safe people more clearly just how difficult a time I am having. In a situation like this again I will endeavor to speak up to my family. As it turns out they were having an almost as miserable time as I, and perhaps if I had spoken up we could have removed ourselves from the situation. It certainly would have helped in not experiencing a weeklong shutdown.

There is though, a broader lesson here. The work of autism acceptance, and disability acceptance more broadly, has a long way to go and a lot more work to do. We have made progress, but ableism is so pervasive in our world that mostly we just walk past it and many of us just do not even notice it is there.

In preparation for this camp our family were very upfront about our neurological situation. We were after all three autistics and an allistic heading of together. However that information that was shared with the organisers made not a speck of difference. There was no quiet place anywhere to be found for example and the environment of the camp was so full of echo chamber like circumstances that it was like a living hell. The only option I was able to take up really was that of non-participation.

What made this all the worse was the fact that the two Directors of the camp are support workers in disability services. One of whom has a disabled child. Yet upon attempting to discuss issues with them during the camp a sever lack of insight was on display. The overriding attitude was that one should just suck it up and deal with it.

There were many other aspects that made this experience extremely difficult, like a programme that was published and changed at every turn without notice for example.

I come out of this experience knowing that I need to be clearer about accommodations needed and to speak up about difficulties when they occur and not trying to suck it up and just get through it.

I am left with a question that I can’t answer at this point, perhaps you can help. How do we as a society build in autism acceptance and accommodations that enable experiences like these to be positive and not negative. Surely in a society that is inclusive and not ableist a family should be able to participate in a camp such as this without it being a hell on earth experience.