by Guy Shahar
Published: 10th September 2017
I have spoken and written a lot about how I see sensitivity and an associated idealism as still largely unrecognised factors lying at the heart of autism. The condition of anxiety that they lead to, however, is already becoming increasingly recognised as an underlying factor in the condition.
It makes sense that when sensitive and idealistic beings are consistently treated in a way they experience as unduly harsh and their values violated, the result can only be a state of dis-ease, disorientation and anxiety.
This anxiety then manifests itself in “autistic behaviours” like social withdrawal, a search for certainty in routines or obsessions or unusual sensory requirements and so on as a means of trying to retain some degree of control. This also happens with non-autistic people when faced with very extreme situations like prolonged and intense abuse, for example. Such circumstances would drive us mad and force us out of alignment with our normal perceptual and sensory processing, just as happens for people with autism. The only difference is in the nature and degree of what is required to bring this about.
I was struck by how much this chimes with the experience of Naoki Higashida, as expressed in The Reason I Jump:
Why won’t you wear shoes? Why will you only wear half-length sleeves? Why do you always shave off or pluck out your body-hair? Doesn’t it hurt? Every time us people with autism do something that other people wouldn’t, it must make you wonder why. Do people with autism possess different senses? Or do these actions just give us some sort of kick?
To my mind, both answers are barking up the wrong tree. The reason could be that we’ve got into such a state that if we don’t do these actions, we’ll go to pieces completely. If you talk about someone’s ‘senses working differently’, it means that the person’s nervous system is somehow malfunctioning. But I believe that in our case, there’s nothing wrong with us at a nerve level. Instead, it’s actually the emotions that trigger the abnormal reactions. It’s only natural for people stuck in a bad place to try to get out of it, and it’s my own despair that causes me to misread the messages my senses are sending me.
Or, as Barry Prizant puts it in the beautifully compassionate Uniquely Human:
To be clear: Difficulty staying well-regulated emotionally and physiologically should be a core defining feature of autism. Unfortunately, professionals have long overlooked this, focusing on the resulting behaviours instead of the underlying causes.
The problem comes when parents seek advice about these behavioural manifestations and are offered “strategies” to deal with them at the surface level on which they occur. For example, they may be advised to offer incentives for the child to participate in conversations using given phrases; they may be advised to go along with the obsessions rather than resist them to avoid causing a reaction and entrenching them; they may be advised to address meltdowns by noticing the signs of them coming on and avoiding the patterns that tend to develop into them, and with suggested ways to behave when the signs of meltdown begin.
Many people find these sorts of strategies to be helpful in managing some of the issues they are having with their children as they arise. But they don’t reduce the tendency of these situations to occur, and from the child’s perspective, they do nothing to address the underlying anxiety that creates this tendency, and which may even be increased by the additional expectations.
If instead the anxiety at the root of these behaviours could be addressed, the results could be much more far-reaching and long-lasting.
Perhaps the most powerful concept we learnt during our time at the Mifne Clinic was that of Containment. This is explicitly aimed at addressing this anxiety at its core level and providing the child, over time, with the critical inner-understanding and realisation that whatever happens, everything is okay, and they have the strength to deal with it and are in a safe environment where they are well-understood and have nothing fundamental to worry about.
Of course, this involves some serious changes in the parents as well. We cannot give our son a sense that everything is okay and that he has the strength to deal with whatever happens if we don’t feel this for ourselves: if we have an eye on the clock or are increasingly worried about whether he or we can cope with the situation. Our words would necessarily come across as empty and transparently manipulative, only increasing his confusion and lack of confidence in his ability to navigate the world. We need to first find the reassurance within us and to truly believe and experience it ourselves before we can hope to reach our child.
It may sound like a tall order, but the effort has been well worth it, and we have found that it has transformed our own lives too. It is actually something that is good for anybody, and perhaps deeply needed by us all. And the effect on our son has been transformative.
Within a couple of years (it is not a quick-fix, and requires much patience) he went from having several intense and prolonged meltdowns each day to having none at all for the next 4 years (up to now).
That is not to say that no anxiety or anxiety-related issues remain – particularly in the area of social interaction. But there are far far fewer of these and he has much more strength and balance to better manage them and contain himself, but a predisposition to anxiety remains and will probably be a permanent feature.
I know this from my own experience too. I grew up at a time when autism wasn’t generally recognised unless it was catastrophically incapacitating, so I didn’t benefit from early intervention, but have been very fortunate in my adult life to have had an opportunity to transcend most of the difficulties – in my case through Heartfulness – so that my once-defining autism is now barely noticeable (except by other autistic people or those who understand them very well). Nevertheless, despite this, perhaps my greatest difficulty in life is this predisposition to becoming disproportionately affected by relatively small issues relating to interaction with others.
So throughout their lives, and especially while we are supporting our children and watching the gradual calming unfold in them, our responses to any anxiety in them are critical.
If we can see them and treat them at the level of this anxiety that they are experiencing and not to try to “fix” its “problematic” manifestations, that could make a huge different to them. They would be able to feel truly seen as individuals, as we show them that we are aware of the underlying reasons for their behaviour, and at the same time demonstrate a confidence – they they will easily imbibe – that their needs are recognised, covered and they will get through this fine.
And what better way to elicit a connection and co-operations from them? Parents, schools and so on tend not to get much co-operation from the child when they see their behaviours as problems and use “strategies” aimed at working towards “normalising” them.
This is because the children have no interest in “correcting” their behaviour; it misses the point of what they are expressing and makes them feel more isolated and remote.
If we can show them that we appreciate the anxiety behind their behaviours and that we are there to help them, or at least to stand by them with confidence and compassion and without judgement, then we give them the opportunity to feel not only well-cared for, but also well-understood, which is critical and the absence of which is itself a major source of anxiety. On this note, I will revert again to Naoki Higashida for the final word.
We are misunderstood and we’d give anything if only we could be understood properly. People with autism would be suffering breakdowns over this – all the time – if we weren’t holding ourselves in so tightly. Please understand what we really are, and what we’re going through.