In this 2022 article; “Muting, filtering and transforming space: Autistic children’s sensory ‘tactics’ for navigating mainstream school space following the transition to secondary school.”, the take-home messages are:
There are sensory challenges in mainstream school environments for ASD children.
Working with young people post-transition to secondary school has highlighted these challenges.
Sensory challenges exist across the school environment: Classrooms, lunch halls, playgrounds and even corridors can feel overwhelming.
Muting, filtering and transforming space ‘tactics’ are ways that young people deal with feelings of sensory overload.
Teachers, parents and therapists can use this understanding of these sensory tactics to support the design of more inclusive school spaces.
In my time as a special needs parent, I’ve had a variety of responses to telling people my child has special needs. Some responses have been great, others have left me crying all the way home. Literally. Some have opened up conversations, others have shut them down. I know that those people who have not been so helpful have just been looking for the right thing to say and found the wrong one. So here are some cues to think about what you’re saying. Remember when the parent says the “we think (s)he might have….” Or “(s)he’s got…” they are very vulnerable. They will have cried and fretted and lost sleep over the information they are giving you and they will be at some stage of processing that information. If they are giving you that information, they either need you to change the way you are interacting with their child, or they need to talk about it. Choose your words carefully to open up the conversation and hear what they’re trying to tell you.
Please don’t say: “(s)he seems fine to me”. I know you’re trying to be reassuring, but by saying this, you imply that you are more able to identify the child’s developmental needs than the parents and the professionals working with the child. It pretty much shuts the conversation down, but if it continues, you force the parent into the role of pointing out their child’s deficits while you defend them. This is not a natural way of things, the parent spends enough time pointing out their child’s deficits with professionals, you need to enable them to big their child up and point out what a wonderful person they are.
Say instead: “I hadn’t noticed. What’s going on?” By saying “I hadn’t noticed”, you can reassure the parent that it isn’t that obvious, but also put yourself not the parent in the position of the person who needs educating about the child. You open up the conversation, and you give the parent the choice about how much information to give you, they might just tell you a load of assessments and appointments or they might tell you what the child is struggling with. It’s up to them.
Please don’t say “I couldn’t do it” the truth is you could. Of course, you could and a whole lot more, if that was what your child needed. Don’t point out how lucky you are that you don’t have to. The parent might well be wondering whether they can do it, and how long they can keep doing it for, they need you to reassure them that they can keep going.
Say instead “I really admire the way you’re doing it” This way, you’re complimenting the parent, you’re recognising how hard they’re working but you’re not sowing that seed of doubt that they might not be able to keep going.
Also, say “how can I help you do it?” they probably won’t know, but they’ll really appreciate being asked. It might be as simple as “watch my child while I have a pee in peace”. Do that. Then offer to do that again, don’t wait to be asked.
Please don’t say “(s)he’ll catch up” (s)he might well not. People were telling me this when the doctors were telling me she might well steadily regress. It wasn’t reassuring, it was frustrating. Again, it puts you in the position of the expert over the parent and professionals and the parent in the role of pointing out the deficits. Parents do not want to point out their child’s deficits, please don’t make them do it. Please don’t encourage the parent to compare their child to typically developing children, the only person a child needs comparing to, to track their learning is themselves.
Say instead “what does (s)he really love doing?” Give the parent a chance to gush about their kid, what they love, how much fun they are etc. Most parents will leap at this chance, it’s so refreshing after appointment after appointment telling professionals what their child can’t do.
Please don’t say “is there a cure?”The child may well not need a cure, they’re probably not ill. If the child is ill and there is no cure, they really won’t want to keep repeating that and if they know there is a cure, they’ll be doing it. Trust me, they will have researched treatment options very thoroughly.
Say instead “what are you thinking about for the future?” Again, keep it open. The parent might be trying really hard not to think about the future, they might well be taking one day at a time or they might be able to think of nothing else. They can choose how to interpret “the future” in your question and might tell you about getting them to eat just one more type of food or school support options, or they might be racing ahead to adulthood prospects.
Please don’t say “have you tried…?”again, you’re putting yourself in the role of expert with this one and the parent in the role of person to be taught how to raise their child. Unless you’re really actually a professional expert in what you’re suggesting, and you’ve spent time really interacting with the child, please just don’t.
Say instead “what do you think might help?” A parent who thinks their child has some additional needs will have done very thorough research, trust me. Give them time to talk about what they’ve learned. They might say “nothing” and then you’ll feel really awkward. Live with that, they feel awkward a lot of the time. They’ll probably tell you things that have been suggested and why they think/ don’t think that’s any good. Listen.
Please don’t say “you won’t want to come” Don’t presume, parenting a child with additional needs is isolating and exhausting. They might say no. Don’t be offended if they do but give them that option.
Say instead “I know (s)he finds this difficult, but I wanted to invite you in case you think they’d like it” Invite the child, acknowledge that it might be hard for them and they might want to say “no” and that’s OK, but make sure they know you want them there and you value time with them.
Please don’t say too much in front of the child.Remember they may well understand more than they can say and for any child seeing their parent upset is confusing and frightening.
Say instead “how am I best to communicate with him/her?” Then get down on the floor and do it. Playing with a child, talking with them on their level and really getting to know them is the biggest compliment you can pay the child and the parent.
My biggest advice if someone is telling you their child seems to have additional needs or a developmental difficulty is to listen to them, make them feel validated, treat them as the expert on their own child and don’t belittle their experiences. Your role is not to fix the child, you can’t do that. Your role is to support the parent, build their confidence and to be their friend.
Our daughter recently appeared on a UK Kids TV show called Something Special. I was ridiculously excited about it and told lots of people who never usually watch CBeebies, the BBC children’s channel, that they just had to see her.
Filming was brief but exciting. We got to meet Justin briefly (one child was very disappointed Mr Tumble wasn’t there too) and the team were genuinely very lovely.
Some of the people who would never normally watch CBeebies were surprised there is a programme which exclusively features children with special needs and/or disabilities, they felt that pointing out the difference wasn’t kind and the kids should be encouraged to blend into a typically developing world. This was a good opportunity to explain how the show “Something Special” had helped other children to understand the way our girl supports her speech with signing and to not be phased by her difference. We’ve often heard comments like…“oh look! She signs like Mr Tumble does!”.
Then a friend asked what I thought of “Pablo”, another CBeebies programme about a little autistic boy and the imaginary world he creates to navigate the confusing things around him. Of course, I had to investigate. I watched a little video of the autistic boy who plays Pablo explaining that he thought it was important for other children to understand autistic children so that they would want to play with them and that Pablo helped that, and I was ready to investigate.
So, I sat down with four kids to watch. The 8 and 10-year-old exclaimed in unison “Oh, I love Pablo!” so of course, I asked them what the show is about “a little boy with a really good imagination who draws stories about things”. Fair enough. And so we all sat and watched the show together…
In the episode, Pablo and his mum are going about really everyday things (cleaning a bin in the first one we watched) and Pablo’s mum uses a phrase he doesn’t really understand to explain what she’s doing. He knows he mustn’t touch the “smell gobbler” but doesn’t understand why. Pablo draws his fears, in this case, he is concerned that the “smell gobbler” might eat his own familiar safe smell which he likes and then what would he do? He and the cartoon characters that represent aspects of him, problem solve it and trap the “smell gobbler” under the laundry basket. Mum comes back and is amused to find her air freshener trapped.
I actually loved the show. The kids who told me they loved Pablo hadn’t spotted that he’s autistic (the 8-year-old is usually quite a diagnostician) and yet they loved that he has such a really good imagination. watching the show together opens up a way to talk about autism with her and how her autistic sibling and friends might see the world a bit differently. It touched on the sensory differences that can come with autism and the importance of sameness for people with autism and modelled a useful way for children with autism to reason through problems and confusions they encounter.
I have a speech therapist friend who is very keen on creating comic strips with children as a method of problem-solving and reasoning through situations before they happen. I could do that or I could just let my kids carry on enjoying a funny cartoon about “what if we really meant exactly what we say?”.
It’s my job to watch what my kids are watching and use it to start those conversations with them. I’m so glad these programmes give us a platform to start that.
As I read the recent article “14 Phrases Kids Said That Were Code Words for ‘I’m Anxious“ from The Mighty, It felt familiar – like I had met every one of these responses to anxiety and not just from children.
“What’s wrong with me?”… “I’m tired.” … “Can’t we stay home?”
“I don’t feel well.”
Anxiety affects so many people and they are not all confident naming and talking about it. Some may know they are anxious but be embarrassed about telling people, for others, it may be that long-term anxiety is new to them and they haven’t really grasped that the physical symptoms are related to their anxiety.
So how does anxiety play out in real life and how can we help?
The elderly lady who has had a reduction in her mobility now feels sick when she goes in the car (but her doctors can’t find anything physically that would cause this), may not understand that her body and brain has become accustomed to less movement and so is less able to integrate vestibular stimulation with other sensory stimulation hence she feels sick now avoids leaving her chair for fear of some as yet unidentified illness but is embarrassed to say she feels scared. Her fears about illness then generate yet more anxiety symptoms e.g. Feeling sick racing heart and more, confirming that she really has got some mystery illness that the doctors are missing, so she avoids leaving her chair whenever she can. This leads to a further loss of integration between her senses as she is not moving much (vestibular) and she is not using her muscles much (proprioception) and will eventually lead to loss of function.
Or that friend who is always tired or busy when you want to go out (there might be other reasons) and cancels at the last minute. But to be honest, as a mother to a lovely but anxious young lady it is the young people who concern me most
My concern for young people is driven by the knowledge that the young brain is primed to learn (Jenson 2015)… And learn it will – either good things or less good things, so if like the elderly lady the young teen avoids activities there is a good chance that these coping strategies will become an ingrained life pattern.
So what can we do to help?
First get to know the symptoms of anxiety there are numerous self-help books and Web pages e.g. The NHS Web site, Web MD, mind etc.
Second help the young person to choose activities that are likely to reduce anxiety… From a sensory integration perspective, these are likely to be ones that involve heavy muscle work and muscle stretch (proprioception) and ones that make the young person think like Martial arts, dance, rock climbing gymnastics etc. Will be better than just proprioception alone. We do dance and acrobatics.
Consider 1 to 1 tuition if they need to gain skills to catch up with their peers… But if you do this it’s good to plan to reintegrate the young person into group lessons… So that they can deal with social anxieties. We went to a group lesson and it was clear my daughter had a lot to learn so we had a year of individual lessons (and still supplement the group lessons with the occasional individual lesson). But then we went to group lessons, it took half a term but now she is enjoying doing acrobatics duets which brings me to my next point.
Make sure the young person attends regularly and on time for a good chunk of time…..
Be prepared for ongoing anxiety and be firm that they go… My daughter frequently tells me on the way home “oh sensory mum you’re right I do feel better.“
Try to avoid surprises… We have a wall planner for the term and all activities are written on it… And I have noticed my daughter (and I am) much calmer knowing what needs to be done and when.
Discuss and consider professional help… Some Ayres’ Sensory Integration trained occupational therapists use other techniques in conjunction with their sensory integrative therapy, others will work alongside mental health professionals and for some people, Ayres’ Sensory Integration therapy will be enough on its own.
You may also decide to work through a self-help book and this can be a good option… But if in doubt always consult with your GP or/and any other health professional who is working the young person.
So what about those adults… Its a little different to the young people but listening and understanding or trying to understand is a good first step. Giving them information about sensory integration and mental health issues can also be helpful. Then asking them what they want you to do and staying in touch with them even if it’s difficult. And always remember it’s never too late for someone to get help.
Reference The teenage brain by Frances Evans Jenson. L