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  • Skribentens bildSuzanne Axelsson

Neuro-diversity in the world of Neuro-norm

The more I read and learn about neuro-diversity the more overwhelming it starts to feel. There are articles about it, and reactions to the articles... but what I feel the most is that there is an "us and them" approach of which I feel absolutely no connection to whatsoever... I simply don't get it... and that can be part of my neuro-diversity in the sense that all these "us and them" definitions have been strange for me to truly comprehend... class, gender, race etc etc because first and foremost I see myself and everyone else as human, but understand that these definitions exists, and what they mean I just don't get why people over aeons put so much belief and energy into maintaining the "us and them". It just gets in the way. With neuro-diversity there is often this concept that we need to fix the child/person with the diagnosis. That this individual needs to manage their behaviours in order to fit in... when in reality it is more about trying to manage (cope) with everyone else's behaviours so that we don't freak out, meltdown or withdraw/become exhausted. Yet the focus continues to be on giving these children tools and more tools to be able to participate in a society that has absolutely no interest in widening the neuro norms (well all the norms really). The neuro-norms need to be widened.. "neuro-typical" (haha, I mean typical, is that just another word for normal, maybe I should just write neuro-norm as in the accepted way to be wired to be an approved member of society) - the neuro-norm need to address their responsibility in all of this... children/people do not simply behave... we react. We are a series of interactions to the world around us - the people, the nature etc etc. So the neuro-norm is having a huge impact on the neuro-diverse (well really if it is diverse, then we are all part of that diversity and thus our first break down of the "us-them"). We need to all work together. Sure those who struggle to fit into the neuro-norm need tools and support in order to understand and interact with those labelled neuro-typical - but I say the same is the case for the neurotypcial, they also need tools and support to understand the neuro-divergent. Working philosophically with young children enabled us all, children and adults alike, to learn to truly listen and understand each other, understand that we are all different and that we do not have to agree on everything, learning how to challenge other people's ideas respectfully... not to prove yourself right, but as part of a shared learning process... this enabled us to appreciate each other, but also to be open with each other. Children having meltdowns, or reacting violently/strongly were not being isolated, instead the children in the group took responsibility for each other... they tried not to create those situations that would stress their neuro-divergent peers/friends, they would develop strategies to help soothe if a meltdown occurred, and they learned not to take personal offence if an arm swung out - although they would comfort each other if they felt sad due to the hurt. The neurodivergent always took responsibility and would apologise and I would support that child to work out what the trigger was so we could find ways to keep such outbursts to a minimum. It also required dialogues with parents - to use accepting language at home, to ensure parents were not encouraging their child to isolate other children, to be aware of their own language about children/people who struggled to exist within a narrow neuro-norm world. It cannot be just something that happens in the classroom/preschool... as the children bring so much of their home-lives with them every day. Over the years I have had parents talk to me about "that" child and about how they should not be in the preschool, or how they should be doing other activities. I understand the need to protect your own child - but I strongly believe that the best way to protect your child is to understand the neuro-diversity and to create play and learning spaces where we can all co-exist - not the neuro-norm thriving and the neuro-divergent trying to survive. There are those that will tell me that my son should attend another school (parents and teachers) - which is not even an option as there are not enough spaces in the kind of school my son would thrive in (autism/ADHD) and we have been on the waiting list for 4 years now. And I know they tell me this stuff not just out of concern for my son, but because they are afraid that he is robbing time and energy from the other children's education. Which in a way it does... because all the time they are trying to shove a square peg into a round hole, which is a complete and utter waste of time... why not make a square hole - it might take a little more time to make that hole in the first place, but once done, then all children and the educators can get on with learning and thriving. For all the talk about the unique child and individual learning - there is very little quality effort being put into training educators about children who struggle to comply with the norm - they are simply educated for the norm and made aware of the rest... EVERY SINGLE EDUCATOR I have met in connection with my son, and also at settings I have visited/worked at with children who struggle to fit in with the neuro-norm have complained that they do not know enough, they lack the competence to meet the child's needs. There is also sadly not enough time for most of these educators to learn about making a learning environment that is suitable for a neuro-diverse class/group. It takes time. Time to learn. Time to listen to each child... as one child with autism will not be alike another child with autism - there are SO many variation. We need to take the time to listen to each child's variations... their strengths, their interests and their challenges. So that we can motivate each child, awaken their inner joy to learn - not make learning a grindstone. I mean when we were in school we all had a favourite subject that we were good at, that came easy... and then there was that subject (or subjects) that we struggled with... Imagine if everyday you had a quadruple lesson of the one you struggled with and only half a lesson of your favourite (and that is if you managed to perform well in the quadruple lesson) - it is hardly going to light your learning fire, in fact it is going to outright de-motivate you... This is how it is for many neuro-divergent children in school. They are trapped in the struggle - and they learn to disengage from school-learning. What made you struggle with that subject? Was it lack of interest? Why was it not interesting, how could it have been made interesting? Was it because it was hard? How could it have been made more comprehensible to you? Was it because of the teacher? Was the teacher boring and uninterested in the subject? Was there a bad chemistry between you and the teacher (and the rest of the class). Was the class noisy or hard to learn in? - There are so many reasons... and so many possibilities to making adjustments. I think there are lots of tools out there that can help BUT they will only help if you have first listened to the child to find out what sort of help is needed. Putting a weighted vest on a child because you have heard that this helps children with ADHD or autism is not enough... you need to know the child, to understand that this could be a possible help, and why does it help... and to always always always have the motivation that it helps the child with their learning, and is not about keeping the child quiet and contained so the other children can learn. if you are focusing on the child thriving... then the whole group will thrive. If you are focusing on containing the child so the classroom is quiet and behaving as the school norm requires... then you are setting yourself up for a bumpy road. And to be honest if the school system is always trying to get everyone to fit the one size all school norm then really the whole idea of unique child and individual learning is nothing but words... What needs to happen is that the school norm needs to change. Not the children. Social norms need to change for a massive variety of reasons - far too many people are being discriminated against, are not being able to access an adequate education, simply because they do not fit the school norm. I was able to make myself fit in... my daughters are also able to fit in... I could make school work, but it got harder and harder the older I got... maybe others did not notice, but the emotional and psychological strain of being in a classroom with so many other people that that made noises, made smells or could not keep still was an extra layer of energy above the learning. Then the learning - I remember verbal and listening exams were really really overwhelming - for a start I am a visual listener so just listening to a tape of language is making it extra hard to understand - I would miss stuff because I was panicking about trying to listen (and I thought everyone was like me, so i thought we were all in the same situation - it is only now that i realise that not all people panic in this way... but still enough to make this an unfair way of testing someone's ability to understand a language or other facts) - Telephones are hard for this exact same reason.

I have started my evaluation to se if I do have autism as I suspect (like my children) - and what has been interesting to discover is the high level of anxiety I have on a daily basis which I never thought was anxiety but just a daily way of being. My husband who is a professor and works with neurology and psychology (and sleep) is fascinated by how my brain works and the fact that it is like a young brain in many senses... that I hear sounds (like my own footsteps within my body that the brains of neurotypicals have learned to phase out... ie I hear and feel things that my brain should have learned to over-ride - like walking downs stairs I am terrified every single time, even though, logically I know that it is highly unlikely something will happen. All of this is taking extra energy - so that something that is simple and everyday for a neurotypical can be an ordeal for the neurodivergent.

Another part of the listening that is hard for me is the radio - I cannot listen to the vast majority of radio programmes where they talk... even some podcasts (they tend to be slightly better). For some reason the sound quality of the spoken voice on radio is different - it vibrates in a completely different way to the extent that I feel it... its not pain, it is discomfort and it makes me feel sick (if you have restless leg syndrome... its like that... not pain, but almost). This meant that during lessons where we had to listen to a radio show (supposedly a fun thing) I always had to concentrate on my physical well-being that it was so much harder to concentrate on the content. Again I though all people experienced this. My husband struggles with me relationship to the radio, as he loves listening to radio shows - and for YEARS - yes years, he refused to believe me because it made absolutely no sense to him... and also it has taken me years to work out how to best communicate this to him. My daughter's having the exact same problem with the radio and being able to back me up on the feeling has helped. he no longer thinks I am just crazy (I definitely do have my crazy moments).

And this is a huge part of the problem - this lack of understanding. Discovering that I am on the autism spectrum did not mean I understood myself better - I know who I am - but what it did was allow me to understand everyone else... that for me I am neurotypical and the rest are neurodiverse... afterall I am used to with the way I think and interact and experience the world... everyone else is different. Teaching and learning requires connection. It requires empathy. But if we are not able to connect or understand how another thinks then this empathy is not going to develop. The "neuro-norm" has to take the time to think about how the "neuro-diverse" perceive and interpret the world - and vice-versa. But through observations of my son, it takes him so much longer to learn this social stuff because he is trying to survive all the time in a world that does not always flow the way he does... so if the neuro-norm took the time to understand, to make adaptions, to accept, to make appropriate accommodations, to support, then there is a better chance that the neuro-diverse will have the energy to learn about the neuro-norm... and we can create a "mwe" instead of "them and us".

Mwe... me/we... we are individuals in a community. What we do to support individuals will help the community, what we do to support the community will help the individuals... but there needs to be equality, and respect, openness, value and participation for this to work... which brings me back to the philosophical dialogues... a metacognitive approach - from preschool and right through school... it should not stop.. ever. A constant dialogue, a constant participation and respect. A constant attempt to listen to understand rather than listen to answer (which I think the school system tends to focus on... listen to answer, do the test, perform right, behave appropriately etc). We need to be a community of learners - where all learning languages are valued. I have written about the unique child before... and I am not keen on this phrase... mostly because I think it lets people think we are dealing with these issues, that we see the individual and met their needs. Its like a veneer covering the reality of the school system underneath. And we will never have a school system that truly meets the needs of all children, the full range, the whole spectrum - our glorious human diversity, unless we dare to rip down that veneer and change what is under. We need to see lesson plans, weighted-vests, fidget spinners etc etc not as fix it all to make classrooms work... but merely as possible strategies for the child to use. Not all strategies are going to work for all children... and if the strategy has been put in place to manage the class the child will eventually see through it. Also a strategy is not going to work for ever... children develop, evolve and there needs to be a constant dialogue with the child and their parents... and the whole class about how we can make this work. I can go on... but I think this is enough for one post...

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