No Sense in denying it...
Plain and simple, Autistic people are not understood in most areas of their lives. There, I said it. No, it isn't fair but that's why people like me and other #ActuallyAutistic advocates are doing this type of life-blog, to try a give a view into our 'world.' Both Autistic people who do not have a learning disability and Autistic people who do are similarly disabled by Autism. Cue a shed load of Autism Warrior Moms emailing me with "How can you say that?" (That might be polite by the way).
Well, I can say if for two reasons.
1. Take away the Learning Disability and what would Autism look like?
Deficits in 'socio-emotional reciprocity'
Stereotyped, restricted and repetitive behaviours
2. The sensory HELL that both groups experience, regardless of learning
disability or lack thereof.
"But there's a huge difference between you and my child!"
Yes, yes there is! Trust me, I hear you! However, is that difference due to Learning Disability or Autism? We were diagnosed under the same criteria above... we are both Autistic! Now, I'm not a medically qualified person at all, the extent of my medical training is being a First Aider, I was once trained to Ambulance Technician level but a long time ago and completely irrelevant for this topic!
What I really wanted to think about here was Sensory Issues and how being overwhelmed can really impact our ability to function moment by moment in terms of points A and B above. I can pretend not be Autistic while at peace with the immediate environment around me, however, once the equilibrium is upset, pretending not to be Autistic becomes much harder. The more my brain has to process sensory information, the less I can "mask." For those with Learning Disabilities, the ability to mask is not present, their brain is focusing elsewhere already so they tend to hit sensory overwhelm much more quickly, they cannot rationalise with the irritating noise that I know will stop any moment while the Supermarket tests their fire alarm, to give one scenario out of infinite examples.
If you are Autistic, or looking after an Autistic person, and you don't know yet what 'sets you/them off' or 'sets your/their teeth on edge,' which I believe to be neurotypical phrase that I can only visualise being like a fingernails on the chalkboard situation, then its worth reeaallyy paying attention to the senses that bother you or them, eg bright lights or garish colours, loud noises or those with high pitch or which are discordant in tone... the senses which have you bolting for cover or, worst case, have you in a bit of a screaming mess or silently sobbing in total overwhelm. This will apply to those who have a learning disability too.
There is always a trigger for a meltdown and, most often, the build-up is a sensory imbalance - not always but more often than not...
...Are we being sense-itive?
Well, in a short answer "Yes!"
The chances are huge that an Autistic person also has some kind of behaviour(s) around sensory seeking - ie needs more of that input or sensory avoiding - needs less of it and we all respond to the different senses differently - even Autistic siblings have different sensory needs. Occupational Therapists refer to this as a sensory integration; its really worth getting a sensory assessment and subsequent sensory diet 'prescribed', just to see if it makes a difference.
If someone makes too much noise near me or its too loud or discordant, I am likely to put my hands over my ears AND close my eyes ... why do I close my eyes too? I am trying hard to bring the sensory overwhelm right down to a manageable level and sight is immediately controllable, however, if someone brushed past me, at a point of trying to control that overwhelm - thereby rapidly recruiting an unexpected sense, that control would be lost and shutdown would occur, for me - for someone else, they would experience this differently. I am sound, smell and sight avoidant, I experience all three senses more acutely than most, I could hear a pin drop in a crowded room and even, in the middle of the night many years ago, woke up smelling a pan burning dry on the stove before the smoke detectors near it even went off!!
That said, I am a sensory-seeker too but of other, less generally well-known senses, I rock, spin and flap and I like tight hugs and firm handshakes, don't brush past me lightly, it makes me feel sick but "YES, PLEASE" to roller-coasters!! The faster and spinnier and twistier the better and if it will loop-the-loop - even better again!
I sense a theme here...
5 senses - Not any more!
At School, I, like others, was taught there are five senses: Touch, Taste, Smell, Sight and Sound. Nothing was mentioned about any other senses!
An interesting article I was reading, in researching exactly how many senses there are currently defined, mentions a Michael J Cohen postulating the existence of as many as 53 senses! You can read the full article on the Sensory Trust UK website here (link opens in a new tab) because I'm definitely not going into that here so...
...in addition to the 'main' 5 senses, the other 3 I want to consider as important for many Autistic people are:
Interoception - What's going on inside your body eg hunger, thirst, full-up, hot or cold etc.
Proprioception - Being able to sense where limbs are and how to move them.
Equilibrioception - Ability to balance and spatial awareness (vestibular system input).
The National Autistic Society has some good information here (opens in a new tab) and includes a clip to example what it can be like to us to "feel" the senses becoming overwhelmed.
However, just to go back to my sensory profile for a second, you can see my sensory seeking and avoiding in the context of the 5 well-known senses and the 3 additional ones:
Touch - I'm an avoider in general but weight tends to calm Autistic people so I love my weighted blanket and firm hugs make me relax. I don't like to be brushed past, it creates a sense of being 'in pain' and hurts.
Taste - I am neither avoidant nor seeking in taste, however,
Smell - I am avoidant of strong odours both good or bad and have an extremely heightened sense of smell and being unable to escape a powerful smell can be overwhelming.
Sight - Again, avoidant. Bright lights, flourescent lights, flashing lights, I find the blue lights people put up at Christmas painful to look at and mentioned in a previous blog the overwhelm at Christmas shopping!
Sound - Another avoidant sense; although I do love Classical music for its tunefulness, I also like a good beat if the music is tuneful - classical fusion is a genre I enjoy. I am immediately pained by one 'out of tune' instrument even when in a large group of other 'in tune' players and this can cause shutdown if I cannot counteract it quickly!
Interoception - Neither seek nor avoid. I prefer to be cool rather than hot but nothing to note other than this.
Proprioception - I mentioned flapping and finger flicking as a form of 'stimming' and this would be sensory-seeking behaviour for proprioception input and on the rollercoaster that feeling when your arms and legs are going everywhere and your constantly fighting to get them back to you - that is proprioception too!
Equilibrioception - Again, roller-coaster, sensory-seeking, that and the rocking I do in the absence of a roller-coaster - I wonder if there is a reasonable adjustment I could ask for here! Going on a roller-coaster could be my absolute favourite sensory experience!! As a teen, I was ridiculed for being too afraid to go on a roller-coaster by the other kids from my college with whom I gone to a well-known UK Theme Park. I was physically dragged on in the end, despite begging them not to, but absolutely loved it. The noise had put me off, that and the fact it moved so fast I couldn't keep up with it with my eyes but once on it, Oh. My. Goodness!!
In Summary
Its very much worth looking into a Sensory Assessment for yourself or the Autistic person in your life if you, or they, do not already have a sensory diet in place or don't know what their sensory triggers are. Once I was able to establish the things that set me off and the things that soothe me, I have experienced less moments of overwhelm as a result. A great place to find out even more information about these 8 senses mentioned above is here (link opens in a new window!) where you will find some activity suggestions which may help too - its the website of the book Raising a Sensory Smart Child, By Lindsey Biel, OTR/L and Nancy Peske, with a foreword by Dr. Temple Grandin.
There are times, of course, when I cannot control my sensory environment, one such environment is when in hospital, even for outpatient clinic appointments, I find the immediate surroundings extremely painful. From the lights to the noise, the people brushing past; it all becomes too much and I find myself employing all the tools I have and still experiencing mutism where I cannot speak and have to use an App on my tablet to be able to communicate needs ... worth anyone who experiences the same issues having in reserve!
Please do get in touch if you would like to via the contact me form or Facebook page "An Autistic - Unmasked."
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