Earlier this year I was reading a national newspaper lifestyle story, about a family taking their Asperger’s child with them on holiday to Fiji. As I read it I felt very uncomfortable about the family’s attitude and approach to their child’s debilitating sensory issues, but I couldn’t quite pin-point why it seemed so very wrong. More recently I was directed towards a piece, also written by a mother, about how she lives and deals with her autistic (PDD-NOS) child’s “fears.” She treated and talked about the fears as if they are a grouping of distinct and irrational phobias, even though the what she describes is very clearly classic sensory issues.
Both these writings left me with the same uncomfortable niggling feeling, that something was wrong and potentially harmful in the way they were dealing with their autistic children. Both also left me biting my tongue, because I loathe drawing negative attention to parents who are just doing their best to cope with their children’s significant challenges; this world is already full of people criticizing others’ parenting decisions from a position of ignorance. However, I have ultimately decided to write this post, because I worry that the information and approaches they support and encourage, may be unhelpfully distorting and misleading for parents who are seeking ways to cope with their autistic children. I write this post not from a perspective of “I know best” or “these parents are bad parents,” rather, to cast a different perspective (and perhaps, a challenge) to those approaches to sensory issues.
First, to clarify the problem: Sensory issues in autistic children, are not irrational fears. The well-meaning mothers in those two pieces seem to have accepted that their children will always carry these fears, and that as parents they just have to either force their children to face those fears, or must help their children completely avoid those fears. Both expressly talk about their children as either irrational or incapable of reasoning when it comes to talking about their fears. Both parents also expressly advise against preparing their autistic children for up-coming known stressors, preferring to give as little amount of time as possible to having to put up with the child’s fearful responses.
For example, in the first piece, the mother chooses not to tell her child they’re going to Fiji until the day before they leave (and even then, they appear to have let it slip, rather than intended to tell the child)! They had a two month lead up during which they apparently did nothing to actually prepare him for what was going to happen on the trip, and yet the title of the story is “Holidaying with autistic children all about planning ahead.” The irony is disturbing. In the second piece, the mother says: “in general we don’t prep James for the “scary stuff.” If he knows there will be a fireworks show that evening, that’s just more time for his anxiety to fester (and more times we have to discuss said event).”
If sensory issues are seen as inherently irrational and as primarily about fear, these approaches might make sense; though I have concerns that such an approach to phobias is also problematic: Both for sensory issues and for fears – especially when they are affecting daily life as it is for these families – it is surely best to try to decipher the cause, desensitize if possible, and at the very least provide the affected individual with coping strategies. Avoidance and lack of warning, achieve none of these things. And – particularly for autistic children – forcing encounters (“Don’t ask, tell. “After the Ferris wheel, we’re headed to dinner.” If we ask, he’ll say no, so why ask?”) can actually enhance the existing anxiety reactions and potentially make them much worse.
So what might one do instead? First recognise the importance of figuring out the triggers and why they are triggers. Occupational therapists are excellent at helping families with this task. Once you know the reasons behind the reactions you are in a better position to equip the child to cope when these situations arise (blocking ears if it’s the sound, looking away if it’s the visual, counting to ten if it’s the time frame or just as a “get through this” method, whatever).
If the child can’t cope in such ways, or you can’t figure out the precise causative nature of the issue, preparing the child for the foreseeable stressor can actually be very soothing and reassuring, even though it alerts the child to the upcoming event. The use of social stories is great to this end, particularly because they can illustrate that there is an inevitable end to the stressor. For example: “We will get on the ferris wheel, it will go around, mummy and daddy will be with me the whole time and we will be safe, then we will get off and go to dinner.” Just knowing the event is coming, and that it will end, can make the world of difference. Not knowing it is coming can actually increase the severity of the reaction, if only because lack of fore-knowledge in and of itself can be very upsetting for our kids, regardless of what it might be that’s going to happen.
Beyond these points, it is also better for the parent-child relationship, if the child is forewarned: Imagine what it does to a child – any child, not just an autistic one – to grow up in a home where they can’t trust and rely on their parents to warn or prepare them for upcoming horrors. Having negative experiences sprung on you, deliberately without warning, would surely just increase anxiety levels in daily life, rather than reduce it.
We need to help our children to find ways to cope in this noisy unpredictable world, and we must do so mindful of the specific challenges that come with autism. No I don’t think there’s a single way to do this, I’m sure there are multiple successful paths to the same joyful outcome. But when I read stories like in those two pieces, where the parents seem lost in the struggles and to almost have resigned to their children’s fears, I feel the need to say something, even if only to offer up this alternative view-point; that treating and thinking of sensory issues as if they are irrational fears, is perhaps not in the best interests of the child nor their family. We all – including autistic children – do things for a reason. Figuring out that reason, is the first step towards a bit more peace for everyone involved.