Sensory Issues are not the same as “Irrational Fears.”

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.

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10 Responses to Sensory Issues are not the same as “Irrational Fears.”

  1. We wouldn’t survive as a family unit without taking my sons sensory issues into account and treatting them as a necessary priority.

  2. akbutler says:

    Exactly what Fi said. Once we understood why my son acted the way he did, and we prepared him and worked with (and not against) his sensory issues, travel and other adventures were so much easier. School is a perfect example. Once school took the sensory issues seriously instead of forcing him to “cope”, everything fell into place and school is now a friendly place. I agree with you 100% here.

  3. Patty says:

    Yes, yes, yes! These are exactly the same issues I had when I read those other two articles. I actually felt sorry for those children: no preparation? How can the kids learn to overcome their fears and sensory triggers if the parents ignore them and never validate?

    My daughter hated loud noises for years. Hand dryers and toilet flushing in the washroom, people yelling, etc. Whenever possible, I alerted her to an upcoming noise. That helped tremendously. She would cover her ears and handle it without screaming. Eventually, going into the bathroom got a lot less stressful for her even though the noises were still there.

    Another issue I have is forcing your kid on a Ferris Wheel. I am deathly afraid of heights and roller coasters. If someone had made me go on a Ferris Wheel as a kid, it would have scarred me, I’m sure. I understand forcing your kid to do certain things. For example, my daughter had to use public restrooms periodically. I couldn’t avoid that, but why force a kid to ride a Ferris Wheel? There is no benefit to that at all. He would gain nothing by riding one, whereas the fear of doing so could really hurt the child. I just don’t get it.

    Anyway, thank you for this fantastic post!

  4. M.J. says:

    I agree with what you are saying but, like almost everything in autism, there is no right or wrong way of approaching a situation that triggers autistic behaviors. It all depends on the child, the situation, and what the issue with the situation is.

    There are times when giving abundance of warning and letting the child know what is coming is the right thing and then there are times when purposely walking the child into a stressful situation unprepared is the right thing to do. We have had to go to both extremes (and everything in between) with all three of our daughters over the years. Most of the time we try to warn beforehand if we can but there are certainly times when we purposely don’t.

    A trivial example is when we go on vacation – we don’t tell the kids that we are going anywhere until about an hour before we leave because the anxiety/excitement of being on the verge of leaving but not leaving is too much for them. They are happy to be going but they have trouble with the waiting to leave. So if we gave them amble time to prepare all it would do is create so much anxiety that they wouldn’t sleep at night from when we told them until when we left. And having extra cranky kids who have slept even less than the little that they normally sleep makes the trip unpleasant for everybody. As a result, we purposely hit them with a major transition without preparing them first because it is better for them.

    Another less trivial example is when twin B was having major issues walking into stores. She did not want to walk from the car into the store but a minute after she got into the store she was fine. If we gave her advance notice that she was going to a store all it did was over sensitize her to the transition and give her an opportunity to start her tantrum early (and in those days she could really throw a tantrum). Instead we purposely walked her into the situation without preparing her for it and purposely didn’t draw attention to it. She still had issues when confronted with the transition but the total duration of the incident was limited from when she saw the transition until a minute after it. And, over time, she became desensitized to it to the point that the transition was a non-issue.

    The end goal of both methods is the same – improve the quality of life by helping the person deal with a stressful situation. Sometimes you help them by preparing for what is coming and other times you help them by eliminating the anxiety of upcoming situation or letting them experience a situation unprepared enough times so that it becomes less of an issue. It all depends.

    • Hi MJ, I do get what you’re saying, and I agree with you in as far as your decisions are made very mindfully; you recognize your children’s issues, and think carefully about why you’re doing what you’re doing. You don’t appear to think of or approach your kids’ issues as irrational fears, from what I can tell. All of which is quite different from the attitudes and approaches in the pieces I reference. It can be hard accessing a parents’ reasoning and motivations, which is why I am generally very reluctant to write posts like this which cast that negative light on other parenting approaches.

      With our own son, there have been times that we felt it necessary to not give a big lead up to a stressful event, for the same sort of reasons you cite: he’d get very anxious and struggle with the very process of waiting. However, over time (and with our son at least) I found that he could learn to wait and deal with the stresses the more that we implemented social stories and the more we provided intentional coping strategies. Again though, how verbal and responsive a child is is going to impact to a certain extent on such strategies.

      I guess what I’m trying to say is that yes, I agree it’s a complicated and individual issue at times, but I still think the approaches used by the mothers I refer to are going to unhelpful and even damaging for many autistic kids, and particularly that it is unhelpful to approach the issues as ones of phobias.

      As always, I appreciate your thoughtful comment.

  5. Hilary Stace says:

    Anxiety about change seems to be one of the most common characteristics of autism. Therefore it seems to me that is unfair to the autistic child not to tell them and not prepare them as much as possible for any change in routine – including reassurance that it will conclude by coming home again (unfortunately not so easy when the change is permanent such as moving house). This can be done by discussing strategies to cope with the change of routine (eg not having the usual bathroom or meal times) photos of the plane, place they will stay etc. Anxieties are often caused by lack of predictability so the full course of events needs to be prepared for, right back to coming home again to the usual routine.

    As a non autistic adult I hate surprises, and would also be very anxious and bad tempered if told I was going travelling (where, why, for how long, when will we be back home?) just before it was time to leave. Let alone be expected to be happy, fully occupied and cheerful at a so called ‘holiday’ place without, say, my usual access to the internet. So it is disrespectful to the child to expect them to be OK with being ‘told’ about an unexpected change to routine.

    (By the way I also read the last page of a book soon after starting the first chapter, and like catching up on Coronation Street spoilers. I like predictability so can entirely understand why autistic kids do too )

  6. Reblogged this on Exceptional Delaware and commented:
    An excellent article for parents of kiddos with any type of sensory processing issues. Especially with all the fireworks tomorrow!

  7. pip says:

    Thank you so much for writing this article. You will help a lot of parents to understand. Don’t hesitate to write, it’s very helpfull.

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