So, what is it: the symptoms and signs of autism OR societal attitude towards the autistic people that is fundamentally the reason for the disabling nature of autism?
THOUGHT EXPERIMENT: AUTISM…?
The answer to this question is, naturally, more complex than the answer in the case of diabetes.
Tony Attwood says that cure for autism is very simple: leave the child with Asperger’s alone in his room & close the door on your way out. And I agree with him there – at least in part.
Why in part? Because autism is not all about social interaction & communication differences.
In fact, sensory issues – not the lack of social skills or struggling with communication – is the major reason for the reduction in our quality of life.
Because 90% of autistic children have been reported to experience sensory processing difficulties. The Sensory Processing Disorder or Sensory Disintegration Disorder can have a profound effect on the wellbeing not only of the individual concerned, but also their entire family.
For example, if the father is struggling with hyperacusis, the routine family happenings, like the baby’s squealing or wailing will drive Daddy at the very least into another room, if not out of the house altogether.
On the other hand, if the junior is unable to cope with loud noises, the family will be avoiding any trips to the cinema; any supermarket trips, any concert, any major event, any large public gatherings, or maybe even simply going to a public place such as restaurants or museums. If one partner has hypertactility, it may destroy the relationship altogether. Just picture the other partner’s hurt feelings, “You can’t stand me! You can’t even let me touch you without wincing!”
Many symptoms & signs of autism are ultimately rooted in sensory processing & sensory integration irregularities.
These include many that we don’t even think of as “sensory” phenomena traditionally. The classic autistic meltdown, for example, results from being overwhelmed by ungated, unfiltered sensory “assault”.
How about not being able to maintain the socially appropriate personal distance, intruding into the personal space of people around you? That may actually be due to errors in our proprioceptive & vestibular systems! These two normally work together to locate your body in space, literally, relative to the ground AND to other objects, including other people.
So, what do you think is going to happen?
Will autistic symptoms per se affect my ability to function, after any potential societal influence has been eliminated from the equation?
Yes, I believe so.
My sensory experience may be modifiable by the restrictions & accommodations (or lack thereof) imposed by society. But my sensory processing difficulties did not originate in society.
My problems with the bright fluorescent lights, loud noise, slimy texture, spicy hot food, specific smells: these originated within and will all stay within.
So will my dysfunctional vestibulo-proprioceptive processing that manifests with my immediate vomiting & subsequent feeling dizzy, ill & disoriented for HOURS after even the shortest time (less than a minute) on most amusement park & fayre-type rides, such as roller-coasters, big swings, and all but the most gentle merry-go-rounds (these I can tolerate keeping the contents of my stomach down, even though I would still feel ill & sick).
In fact, I am unable even to watch these (or any spinning objects!) without feeling nauseous.
Another – less common, but not unknown in the autistic community – is the problem of fragmentation or non-integration of visuospatial information, manifesting as an inability to find my way even in a familiar place without step-by-step instructions/directions. Imagine, for 15 years you have been living just off the Ring Road of a small-to-medium size city, like Oxford. Over this time, you have been making trips into the city centre – on average, once a month. That is ≈ 180 (12 trips per year multiplied by 15 years) trips into the centre of a fairly small-sized city. And I do remember the places I visited, and the places I have gone past: whether walking, driving or riding a bus. I just don’t know how to fit them all together. Yes, I literally don’t know how the positions of the various buildings, sights, streets & landmarks relate to each other in the large space on the face of the earth that is called “Oxford”.
On the bright side, I am now aware of these deficits. I still shudder when I recall the poor innocent tourists I was confidently (mis)directing to various Oxford sights. I beg for your forgiveness.
Did I understand the significance of sensory issues until recently? Sort of, but only through the personal/family experience. I am hoping things have improved in the professional community, I do. But during my training in Child & Adolescent Psychiatry, there was only “general awareness of sensory issues”.
In other words, the gist of the message I recall from, say, 4-5 years ago, was this: autism often co-exists with various sensory hyper- and hyposensitivity profiles. If patients mention sensory issues, it might be worth considering ASD (or another neurodevelopmental diagnosis). On the other hand, if you do a diagnostic assessment for autism, remember to tick that sensory box.
I will be happily shocked if just one psychiatrist (who has no autistic friends or family members – including himself) – posts a comment indicating they have been aware of the significance of sensory issues for a long time now. Prove me wrong – make my day!