Saturday, 23 August 2014

That Autism 'Suffering' - Part Two

In this next part of my investigation into the 'suffering' of autistics, I look at the things autistics themselves - or in some cases the more objectively observing of their parents - put forward as the actual causes of autistic pain and suffering (as opposed to what many non-autistics believe are the causes), along with possible ways non-autistics can support and help us.

There are quite a number of them, and in this post I'll look at the 'internal' causes, those  that arise out of our 'different' way of being, and/or are closely associated with autism.

      i) Communication problems - especially if we're non-verbal, but even those who can speak sometimes have difficulties. We might 'lose our words' under stress, not be able to find the right ones, struggle to process and respond quickly in conversations, or just find it so much easier to write than speak. The use of computers, other communication devices, sign language or writing, along with simple patience on the part of others, would go a long way to help.
      ii) Auditory Processing Disorder - This is part of i). If what we hear sounds distorted or garbled, and it takes us ages to 'decode' what's been said, then we can feel stupid, embarrassed and hurt by others' reactions to this. Others can help us by speaking clearly, minimizing background noise, and waiting patiently for our responses.
      iii) Executive dysfunction - basically, we can't get our lives together. The results can be disastrous, and extremely distressing to us. We will flounder through life and ultimately fail at it - or at least feel like total failures - unless those around us help us learn how to organise ourselves. This is important not just for children, many adults on the spectrum could also do with such support.
      iv) Emotional Regulation - Many autistics have difficulty identifying, expressing and/or controlling their emotions. This can cause a great deal of suffering, especially if it triggers public embarrassment or hostility. There are various methods of helping autistics with our emotional states, including emotion charts, meditation or medication, but needed first is an understanding that this isn't a case of us just being 'spoilt brats' or 'cold and unfeeling', but a real and often painful challenge.
      v) Fear of change - Just about every autistic I know gets distressed by change. Something about our minds is too rigid to cope with it. Visual aids of various kinds are helpful, as is lots of preparation and planning beforehand, and being taught the 'Plan B' approach. Ultimately though, only repeated experience will help us develop the skills and maturity to get through changes.
      vi) Lack of social skills - Our lack of any 'intuitive' knowledge of how to interact with others, combined with inability to read non-verbal clues, means frequent social blunders. The resulting hostile reactions often cause us considerable distress. If others grasped that we are socially 'blind', and certainly don't intend to offend, and instead of condemning us quietly advised us on what, and what not, to say or do in situations, and (most importantly) why, it would assist us a great deal.
      vii) Poor Impulse Control - Impulse control seems to be a problem for many autistics, and can cause much suffering, whether it's through rushing headlong into possible danger, saying things without thinking, being unable to restrain ourselves from 'compulsive' behaviour, or even 'burning our bridges' because we've made too many mistakes, or plunging into disaster in some other way. Self-regulation is a very important skill, and one we usually need help in learning. It's difficult to learn it without such support - I speak from personal experience here.
      viii) Sensory overload - this one is tricky. The immediate causes are outer - i.e. the sensory input - but the ultimate cause is internal, i.e. our senses turned up to the max. The difficulty with managing it is twofold. One, heightened senses can also be wonderful, such as when listening to our favourite music. Two, not all the sources of over-stimulation can be avoided. It's pretty hard, for instance, to stop birds tweeting, dogs barking, or babies crying. Much relief can be found however. For example autistic students and employees could be allowed to wear sunglasses, caps, etc, in the classroom or workplace, lighting can be adjusted, and so on. Acceptance by others of the desperate need for such accommodations is crucial.
      ix) Meltdowns - These can cause us a great deal of suffering, both in the lead up to them, and in the actual experience - not to mention other people's unsympathetic or hostile reactions. We don't want them to happen, but can't always prevent them. If others understood the difference between meltdowns and tantrums, and did their best to assist us in eliminating the causes and creating safe, quiet places we can go to be alone and recover, it would go a long way to alleviating our suffering in this area.
      x) Gut/dietary problems - A lot of us have sensitive digestions. If an autistic person is having lots of diarrhea, constipation, etc, and constantly feeling or seeming unwell, then it may be worth trying different diets. Note though that even that if we don't eat, say, gluten, this doesn't mean we will magically not have autism anymore. It just means that if we're not sick, we will have more energy to deal with life and its challenges.

If my solutions to our suffering seem glib, I don't mean them to be. I know that they usually entail a good deal of hard work, on the part of the autistics themselves, and/or their parents. But what does strike me is that a change of attitude combined with practical help will alleviate our suffering far more, and far quicker, than any hyperbaric chambers or bleach enemas or worms or any of the other and often ridiculous 'cures' being touted by the autism industry.

In my next post, I will examine the 'external' or 'outer' causes of our suffering.

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