Written with full permission of author and mother; Jack is very keen for the world to hear his voice and for his narrative to be used widely for people to understand autism better. His work is already being used for training purposes in his locality.

The Start of my Life

Hello I’m Jack Jackson I have Autism it means I think different than you. In preschool I missed my mummy more than any one else. I did not like the smells and did not let anybody come near me except for my mummy. I did not like loud noises and bright lights. No one could understand me accept for my mummy because I could not talk well. I felt worried and scared back then and had no friends.

Life at School with Autism

Right now I’m in Year 4 and life here is tricky. I Find Class and Recess Very Hard. I find Work Hard And Find It difficult to keep still, not talk and not to be loud, I don’t try to be annoying to anyone because that is not a nice thing. I see my friends find things much easier without me, I wish people could see through my brain because people could then see how I feel.

I forget things all the time, I freak out all the time, and cry a lot at school but try to hide it all and try to be normal, this is very tiring for me.

I think because I look normal people forget I have autism and life with this is hard.

Jack’s Likes and Dislikes

Likes

1 Family

2 books

3 Bike

4 Coding

5 My new form of quizzes

6 Movies

7 Running

8 Having fun

9 Hide and seek

10 Pasta and cheese

Dislikes

1 Homework

2 Not being

understood

3 New foods

4 Away from home

5 Being laugh at

6 Finding school hard

7 Walking

8 being left out

9 friends treating

Me differently

10 changes

Jack’s Wishes

I wish the world can see how it is like to have autism and how a autism brain is like.

 

 

 

Dr Luke Beardon, Profile 2025

(Summary)

For a narrative profile please click here

Key Awards 

• Nominated for Inspirational Teaching Awards and/or Inspirational Research Supervisor every year since inception in 2011 

• Winner – Inspirational Teacher Award, 2011 

• Winner – Inspirational Research Supervisor, 2012 

• Winner – Inspirational Teacher Award, 2019 

• Winner – Vice-Chancellor Inspirational Teacher Award, 2019 

• Winner – Inspirational Teacher Award, 2021 

• Winner – Inspirational Teacher Award, 2022 

• National Autistic Society’s Lifetime Achievement Award for a Professional – finalist 

• National Autistic Society’s Autism Professionals Awards for Achievement by an Individual Educational Professional Winner 

• Autism Hero Anna Kennedy’s Individual Professional Award Winner 

• Autism Hero Anna Kennedy’s Lifetime Achievement Award Winner 

• Sparkle Sheffield Award for Lifetime Achievement in Autism Award Winner

Media Presence  

As well as many local radio stations I have also appeared in the following: 

• Inside Our Autistic Minds with Chris Packham (BBC TV) 

• The Times feature length celebrating professional achievements in The Times  Educational Supplement 

• Radio 4 

• Channel 4 

• The Guardian 

• The Independent 

• The Conversation  

• Radio Sheffield (several appearances)  

• Numerous guest speaker on podcasts, e.g. Times Educational Podcast 

Book Publications 

• Autism in Adults (2017) 

• Autism in Childhood (2019) 

• Avoiding Anxiety in Autistic Children (2020) 

• Avoiding Anxiety in Autistic Adults (2021) 

• What Works for Autistic Children (2022) 

• What Works for Autistic Adults (2023) 

• Reasonable Adjustments for Autistic Children (2024) 

Full Publications List

To access an up to date publications list please click here

Public Speaking  

I have spoken at numerous conferences and events, possibly/probably hundreds, including international/worldwide conferences and filmed knowledge transfer (e.g. Australian Autism Masterclass): 

• Cork  

• Croatia 

• Denmark 

• Dublin 

• South Africa 

• Australia 

I have addressed the United Nations (New York) and Westminster on autism-related topics. 

Main Duties 

• Senior Lecturer in Autism, Sheffield Hallam University 

• Course Leader, Post Graduate Certificate in Autism 

• Teaching and supervising on the MA Autism 

• Supervision of Doctoral students 

• Research 

• Disability Champion  

• Co-Chair Staff Disability Network 

• External Examiner for Doctorates (several universities) 

• Section Editor for the ‘Neurodiversity & Mental Health’ Section of PLOS Journal 

Chown, N., Beardon, L., Murphy, S. L., Suckle, E., & Baker-Rogers, J. (2023). Autism Community Research Priorities: The Potential of Future Research to Benefit Autistics. Canadian Journal of Educational and Social Studies, 3(2), 15–32. https://doi.org/10.53103/cjess.v3i2.118 

Beardon, L. (2022). ‘Autopia’. In The Routledge International Handbook of Critical Autism Studies (pp. 159-164). Routledge. doi:10.4324/9781003056577-16 

Beardon, L. (2022). What Works for Autistic Children. Sheldon Press. 

Beardon, L. (2022). How and Why are Autistic People Anxious?. In Educational Psychology Perspectives on Supporting Young Autistic People. Jessica Kingsley. 

Beardon, L. (2021). Avoiding Anxiety in Autistic Adults. Sheldon Press. 

Beardon, L., Chown, N., Cossburn, K., & Debbaubt, D. (2021). Autism and Operational Policing. In Handbook of Autism Spectrum Disorder and the Law. Springer. 

Panella-Peral, S. (2020). A Longitudinal Exploration of Infants’ Social Looks in Naturalistic Settings. (PhD Thesis). 

Beardon, L. (2020). Avoiding Anxiety in Autistic Children. Sheldon Press. 

Pindar, S. -A. (2019). Autistic Dreaming: a phenomenological study of dreaming and well-being. (PhD Thesis). 

Beardon, L. (2019). Autism, Masking, Social Anxiety and the Classroom. In Teacher Education and Autim. Jessica Kingsley. 

Beardon, L. (2019). Autism in Childhood (2nd ed.). Sheldon Press. 

Leatherland, J. (2018). Understanding how autistic pupils experience secondary school: autism criteria, theory and FAMe™. (PhD Thesis). 

Chown, N. P., Beardon, L., & Cossburn, K. (2018). Rare instances of individuals with autism supporting or engaging in terrorism: a response to Lino Faccini and Clare Allely. Journal of Intellectual Disabilities and Offending Behaviour, 9(1), 59-63. doi:10.1108/jidob-06-2017-0012 

Beardon, L., Baker-Rogers, J., Chown, N., Hughes, L., Cossburn, K., & Leatherland, J. (2018). Achieving More in College’ Project: An assessment of the support for autistic students attending United Kingdom colleges. Good Autism Practice. 

Lawrence, C. (2017). Can sharing education between home and school benefit the child with autism?. 

Chown, N., Robinson, J., Beardon, L., Downing, J., Hughes, L., Leatherland, J., . . . MacGregor, D. (2017). Improving research about us, with us: a draft framework for inclusive autism research. Disability and Society, 32(5), 720-734. doi:10.1080/09687599.2017.1320273 

Beardon, L., & Worton, D. (2017). Love, Partnership, or Singleton on the Autism Spectrum. Jessica Kingsley Publishers. 

Beardon, L., & Worton, D. (2017). Bittersweet on the Autism Spectrum. Jessica Kingsley Publishers. 

Beardon, L., & Chown, N. (2017). Theoretical Models of Autism. In Encyclopedia of Autism Spectrum Disorders. Springer. 

Beardon, L. (2017). The Stigma of Autism. In Thirty Years of Social Change. Jessica Kingsley. 

Beardon, L. (2017). Foreword. In Sensing the City: an Autistic Perspective. Jessica Kingsley. 

Beardon, L., Chown, N., & Cossburn, K. (2017). First responders and autism. In Encyclopedia of Autism Spectrum Disorders. Springer. 

Beardon, L., Chown, N., & Milton, D. (2017). England and Autism. In Encyclopedia of Autism Spectrum Disorders. Springer. 

Beardon, L., & Gaskell, L. (2017). Autism, Learning Disability, and the Criminal Justice System. In The Autism Annual. Pavillion. 

Beardon, L., & Chown, N. (2017). Autism Theory. In Encyclopedia of Autism Spectrum Disorders. Springer. 

Beardon, L. (2017). Autism in Adults (2nd ed.). Sheldon Press. 

Leatherland, J., & Beardon, L. (2016). Introducing FAMe™: Can improved teacher access to individualised classroom support information impact positively on levels of anxiety in autistic pupils?. ‘The Bridge: Journal for Educational Research-Informed Practice’, 3(2). Retrieved from https://journaleducationalresearchinformedpractice.wordpress.com/volume-3-issue-2/research-article-1/ 

Beardon, L. (2016). Foreword. In Sensory Issues for Adults with Autistic Spectrum Disorder. Jessica Kingsley. 

Wylie, P., Lawson, W., & Beardon, L. (2015). The Nine Degrees of Autism A Developmental Model for the Alignment and Reconciliation of Hidden Neurological Conditions. Routledge. 

Ellis, S. J. (2014). Perspectives of the autistic ‘Voice’:
An ethnography examining informal education learning experiences. (PhD Thesis). 

Beardon, L. (2014). Luke Beardon Perspective on Autism. Retrieved from https://blogs.shu.ac.uk/autism/ 

Beardon, L., & Chown, N. (2014). Identification of adults on the autism spectrum: a suggested pathway and good practice principles. Good Autism Practice, 35. 

Beardon, L. (2014). Foreword. In Very Late Diagnosis of Asperger Syndrome. Jessica Kingsley. 

Beale-Ellis, S., Beardon, L., Chown, N., & Martin, N. (2014). Examining intellectual prowess, not social differences: removing barriers from the doctoral viva for autistic candidates. Journal of Inclusive Practice in Further and Higher Education, 22-38. 

Beardon, L. (2012). Foreword. In Autism and Flexischooling. Jessica Kingsley. 

Chown, N. (2012). A treatise on language methods and language-games in autism. (PhD Thesis). 

Beardon, L., & Worton, D. (2011). Aspies on Mental Health Speaking for Ourselves. Jessica Kingsley Publishers. 

Cobb, S., Beardon, L., Eastgate, R., Glover, T., Kerr, S., Neale, H., . . . Wilson, J. (2002). Applied virtual environments to support learning of social interaction skills in users with Asperger’s Syndrome. Digital Creativity, 13(1), 11-22. doi:10.1076/digc.13.1.11.3208 

Beardon, L., Woolsey, I., & Martin, N. (2009). What do students with Asperger syndrome or highfunctioning autism want at college and university? (in their own words). Good Autism Practice, 35. 

Beardon, L., Martin, N., Goodley, D., & Madriaga, M. (2008). Towards an inclusive environment for university students who have Asperger syndrome. Journal of Inclusive Practice in Further and Higher Education, 3-14. 

Beardon, L. (2008). Is Autism really a disorder part two – theory of mind? Rethink how we think. Journal of Inclusive Practice in Further and higher Education, 19-21. 

Edmonds, G., & Beardon, L. (2008). Asperger Syndrome and Social Relationships Adults Speak Out about Asperger Syndrome. Jessica Kingsley Publishers. 

Beardon, L. (2008). Asperger Syndrome and perceived offending conduct: a qualitative study. (PhD Thesis). 

Edmonds, G., & Beardon, L. (2008). Asperger Syndrome and Employment Adults Speak Out about Asperger Syndrome. Jessica Kingsley Publishers. 

Beardon, L. (2007). Aspect Consultancy Report. 

Beardon, L. (2006). Foreword. In The Asperger Personal Guide. Lucky Duck. 

Beardon, L. (2006). Foreword. In The Asperger Social Guide. Lucky Duck. 

Beardon, L. (2005). Foreword. In The Asperger Love Guide. Lucky Duck. 

Beardon, L., Parsons, S., & Neale, H. (2001). An interdisciplinary approach to investigating the use of virtual reality environments for people with Asperger syndrome. Educational and Child Psychology, 18(2), 53-62. 

Andrews, T. R. (n.d.). Exploring the impact of a developing sexuality on adolescents with autism. (PhD Thesis). 

Profile, Dr Luke Beardon 

 

I have been working for decades in the autism field, in capacities ranging from practitioner to researcher to trainer, first working with autistic children as a volunteer aged fourteen. For years I was a Support Worker for Autistic adults in residential services; I subsequently worked for The National Autistic Society (NAS) helping to co-ordinate the development of a residential service for young autistic adults. I worked within this service supporting young adults with a range of complex needs, from those with high dependency needs and severe learning disability, to Autistic individuals accessing Higher Education. I went on to hold three additional posts at the NAS working with Local Authorities developing provision and support culminating with being Head of Training and Consultancy before moving to Sheffield Hallam University. 

 

I co-wrote the ASPECT consultancy report (2007), the largest UK consultation with autistic adults undertaken at the time; I am co-editor of five books on autism published by Jessica Kingsley, and am sole author of an additional seven books: ‘Autism in Adults’ (2017); ‘Autism in Childhood’ (2019); ‘Avoiding Anxiety in Autistic Children’ (2020); ‘Avoiding Anxiety in Autistic Adults’ (2021); ‘What Works for Autistic Children’ (2022); ‘What Works for Autistic Adults’ (2023); and ‘Reasonable Adjustments for Autistic Children’ (2024) and have several other publications in journals and books. 

 

I have run a Project developing autism services within a specific Local Authority, been involved in the setting up and running of two autism Social Groups and have also been employed by the NAS as Regional Development Officer co-ordinating developments over a large geographical area. This has given me the background experience to work at a strategic level within Local Authorities to develop good practice in the field of autism. The Project included the development of diagnostic services, day provision, residential provision, and transition services. 

 

I have been part of a research team at Nottingham University running a three-year project and have several publications in National and International journals related to the project. I completed my Doctoral thesis at Sheffield Hallam University which was around understanding autistic individuals who had been involved in the Criminal Justice System which subsequently led me to being an expert witness for several years providing reports to court. 

 

I have provided consultancy around how to work with and support autistic individuals, organisational consultancy, and consultancy to Local Authorities and National bodies, and have spoken at numerous National and International conferences on a variety of autism related topics. I have also addressed parliament in Westminster and the United Nations in New York. 

 

My most recent post is with Sheffield Hallam University, as Senior Lecturer in autism. I run courses at different academic levels in autism and am the Course Leader for the Post Graduate Certificate in Autism, while continuing to research in the field. I supervise several students at Doctoral level, most of whom are autistic. I am proud of the several autistic (ex) students who successfully completed their Doctorates under my supervision. 

 

Every year the student survey has run I have been nominated as either an Inspirational Teacher, Inspirational Research Supervisor, or both. In 2011 I was awarded the Inspirational Teacher Award. In 2012 I was awarded the Inspirational Research Supervisor Award. In 2018 I was awarded my third Inspirational Award and in recognition was presented the Sheffield Hallam Vice-Chancellor Award. In 2021, and again in 2022 I was awarded additional Inspirational Teacher Awards. In 2015 I was a finalist for the prestigious National Autistic Society’s Lifetime Achievement Award for a Professional. In 2016 I was the winner at the National Autistic Society’s Autism Professionals Awards for Achievement by an Individual Educational Professional. In 2016 I was nominated and reached the finals for the Autism Hero Awards run by Anna Kennedy Online in two categories: Lifetime Achievement, and Individual Professional – and won both categories. In 2021 I was awarded the Sparkle Sheffield Award for Lifetime Achievement in Autism. I have several media appearances, including BBC TV and Radio 4, The Guardian, The Independent – and an article on me appeared in the Times celebrating my achievements. My Blog was voted second best in the award winning Aukids magazine in their list of ten top all-time favourite autism Blogs.  

 

My interests are anything related to autism, pretty much to the exclusion of everything else. 

 

I must apologise – this is a very brief post to acknowledge that it has been some while since I posted anything. This is largely due to the fact that instead of blog posts I have been writing books instead. I have recently committed to writing an eighth book and would like to write nine (to make it 3 x 3). Once I have managed that I suspect I will return to this space.

Luke Beardon, 2018 Updated Version (originally available 2007)
This has been updated to reflect up to date preferred terminology only.

Note: by ‘we’ (our, etc.) I am referring to society as a whole (not ‘me’).

In 1978 Lorna Wing and Judy Gould undertook the Camberwell study; following their paper published a year later the so called ‘Triad of Impairments’ was introduced, and has since been the ‘backbone’ of diagnostic criteria for autism (now trimmed down to a dyad – but essentially not a lot has changed). Their work at the time was cutting edge and seminal, influencing the way in which professionals understood the world of autism. Here we are, decades later, and I for one still come across the term ‘impairments’ on almost a daily basis. However, thirty years is a long time, and while Wing and Gould will forever be positively associated with research in the field of autism (and rightly so) surely it is time to reconsider our use of terminology that could potentially damage the very population we are supposedly trying to support?

Firstly, is autism really a disorder? For all of the arguments to say that it is, I would strongly suggest that there are counter arguments against. We are told that people with autism lack a theory of mind, executive functioning, have poor central coherence, have developmental delays in communication and social understanding. In my experience I would not contest that this causes difficulties for the individual and family. But, having said that, what about the counter-side to this: the honesty, the straight talking as opposed to making things up (or lying), the very genuine nature found in so many autistic individuals? What about all of the extraordinary qualities rife within the population, the attention to detail, perfectionism, drive, and focus? I would say that the only reason we use the term disorder is because there are more of the predominant neurotype (PNT) than there are autistics. What we should be talking about is difference, not disorder; we should be recognising that just because an autistic child develops differently it is not automatically a negative state (i.e. ‘disorder’) but a difference that needs acknowledgement. I would not suggest for one minute that autistic children/adults and their families and friends do not have daily struggles; what I would suggest is rather than those struggles being identified as the sole problem stemming from the autistic individual, we should be looking elsewhere – at the rest of the PNT population who, with the right guidance, attitude, willingness, and acceptance can change their way of thinking and behaving better to suit the autistic population.

Secondly, are we right to say that people with autism are impaired? I would argue not. Where do the vast majority of problems for autistic people come from? Other people, usually PNTs. Our lack of understanding autism directly causes huge amounts of anxiety, confusion, stress and distress to people with autism. Perhaps we should be saying that PNTs are impaired in their understanding of autism, rather than autistic folk are inherently impaired – that, certainly to my mind, would be far more accurate a reflection of reality. For example, to say that an autistic individual is impaired in their communication would suggest that the problem lies with that individual, as if something is wrong with them that requires fixing. Now consider the child who complies with what he is told (to the letter) and is subsequently admonished for doing just that. One might say that is a result of literal interpretation of language – part of the so called ‘impairment in communication’. But where is the celebration of honesty for that individual? Where are the cries of anguish over the PNTs illogical and highly disturbing propensity to say things that are not accurate, precise, or even true? Surely we should be decrying the PNT population as a bunch of liars who can not use verbal language accurately, rather than placing the blame firmly on the head of the autistic child. Rather than insinuating that the problems lie with the individual, look at the problems created by the PNT population. If I can not communicate effectively with a non verbal child, who am I to say that the impairment is with the child? Surely I am equally impaired! It is my impairment just as much as any problems associated with autism that causes those every day problems for the individual and their families.

Thirdly, I am utterly convinced that one of the best ways of supporting an autistic individual is to change behaviour – not of the autistic person but the behaviour of those around them. If the world was more organised, better structured, if people actually said what they meant, then surely this would better suit the autistic population? If we actually listened to autistic people and responded accordingly we could go a long way towards meeting need. Perhaps most importantly, if we developed a better understanding – by refusing to see things always through a PNT perspective, by broadening our minds to see things from the perspective of the individual – then we will realise that it is changes in society in general that would be most beneficial to the autistic population, rather than always placing an onerous expectation on the autistic individual to change.

Autistic individuals are not disordered (the irony with the term being that so many autistic people are highly ordered in their thinking), nor should we automatically dismiss developmental differences as impairments. Certainly the neurological complexities can be baffling to the PNT – as, equally, the PNT world may be baffling to the autistic. This does not make either or both populations disordered – simply, different. In order to support individuals we must accept that differences do occur, but at the same time recognise and accept that difference is not synonymous with disorder.

One day, with luck (and a lot of help from those who are autistic) we will see beyond our own, very narrow, view, and celebrate autism, rather than separating the population by negative terms such as disorder and impairment. Until then we should be taking a long hard look at our society, and our values.

Are you aware that there are moons and stars?
Are you aware that there is a theory of relativity?
Are you aware of the music of Mozart?
Are you aware that cars have engines?
Are you aware that houses need careful planning when built so they don’t fall down?
Are you aware that there are creatures living in the sea?
Are you aware that pacemakers help people with heart problems?
Are you aware of Harry Potter?

Are you aware of autism?

Are you expert in: astronomy, physics, music, mechanics, architecture, marine biology, heart surgery, children’s fiction? Do you have in depth knowledge of any of them?

Autism ‘awareness’ – is it really appropriate???

Awareness does not constitute expertise.

Awareness does not signify understanding.

Awareness is not synonymous with acceptance.

We need more than autism ‘awareness’. We need autism understanding and acceptance.

Girl: Hello Mummy.

Mother: Hello Darling.

Girl: Mummy, I want to ask you some questions.

Mother: Ok – fire away!

[Pause]
[Pause]

Girl: Fire away?

Mother: Sorry Darling, silly Mummy. I meant please do ask your questions.

Girl: Oh. So why did you say “fire away” then?

Mother: It’s my fault, I sometimes forget that we have different ways of talking – it’s my mistake, sorry.

Girl: That’s ok, Mummy. Anyway, we were doing autistry as school – you know, the module on autism history, all about people like me but in the past, and I really didn’t understand it. You’re middle-to-almost old, so I thought you’d be a good person to ask, is that ok?

Mother: [Chuckles]. Middle-to-almost old, very funny!

[Pause]

Mother: Sorry – again. Yes, of course, I will try and answer any questions you have.

Girl: Ok, well first off – we were told that to be autistic the children had to go and see a Doctor – is that true?

Mother: Yes, Dear, that’s true.

Girl: But why?

Mother: So they could be told they were autistic.

Girl: But why a Doctor? Don’t we go to the Doctor when we’re ill?

Mother: Well, yes.

Girl: So why did children have to go to a Doctor when they weren’t poorly?

Mother: Um. Well, I guess it’s because they had a very different view of autism then.

Girl: Oh. Right. Really? That’s really, honestly true then, they used to think it was like being ill? I thought I’d heard wrong when we were told that they had to go to a Doctor.

Mother: I’m not quite sure if it was quite like that, but yes, children did have to go and see a Doctor.

Girl: Wow. Didn’t that make the kids feel bad?

Mother: I think it probably did sometimes, yes.

Girl: Well, that’s stupid then. Why make kids feel bad just for being autistic?

Mother: I don’t really know. I think actually lots of people did think it was bad to be autistic then.

Girl: How can you be bad just for being a person? That’s just silly!

Mother: Yes, I agree. It does seem silly!

Girl: Ok – well, my next question is about adults. Were there really and honestly and truly adults who didn’t know they were autistic until much later in life?

Mother: Yes, absolutely – really, quite a lot of adults actually.

Girl: How come?

Mother: Um – er – well, I suppose people didn’t realise.

Girl: Well, obviously – but how can people not realise? Was it less obvious then that it is now or something?

Mother: Um, no, I don’t think so. I think it’s because the Doctors years ago maybe didn’t understand autism in the way we do today? Or, some did, but some didn’t. Did you know that lots of them had hardly any training in understanding autism?

Girl: What? So they didn’t take autistry modules like I’m doing now?

Mother: Well, no. No one did.

Girl: No one?

Mother: No my love, those sorts of modules didn’t exist then.

Girl: So how did anyone ever understand anyone else who might be a bit different?

Mother: I’m not particularly sure that understanding was seen as very important back them.

Girl: That’s ridiculous – how can children be happy if they are not understood?

Mother: Well, I agree…but; well. I don’t know how to answer that. It seems obvious now, but it didn’t seem so obvious then – not to everyone, anyway. There were some people who did lots of campaigning to try and get more people to understand what it means to be autistic, but lots of people weren’t especially interested.

Girl: How come?

Mother: I really don’t know, Darling. I really don’t Things were very different back then.

Girl: Right. Ok. So, another question. Is it really true that lots of autistic children couldn’t go to the same schools as other kids – and that autistic adults weren’t allowed to go to work?

Mother: Well, it’s definitely true that lots of autistic children didn’t go to the same schools as other kids. It isn’t the case that adults weren’t allowed to work – more the case that they found it difficult to access work.

Girl: [Frowns]. Why? That doesn’t seem very fair on children like me. And autistic adults make brilliant employees, we know that.

Mother: Well, yes – they do today because there is so much more understanding of autism these days. Back then, when people didn’t really understand, things were much tougher for autistic people.

Girl: So – it all comes back to this understanding business?

Mother: Yes, I’d say so.

Girl: So tell me again why didn’t people want to understand? When it seems that a better understanding would mean happier autistic people, more autistic children going to schools, and adults being employed? And all it takes is what we do now – autistry modules taught by autistic teachers to all kids from day one at school, plus all the ‘share my life’ lessons that we all do that make school so much fun?

Mother: I don’t really know. It seems so simple when you put it like that.

Girl: Mummy?

Mother: Yes, my Darling?

Girl: People used to be really weird I reckon.

Mother: Yes, now that I think about it, I have to agree.

Just my thoughts, as always.

Ok, so I am fine to admit that I am somewhat obsessed with triathlons. Watching them online and on demand, reading autobiographies, training manuals, researching into how best to strip off a wetsuit in T1 (transition one), whether socks should ever be worn, the best aerodynamics on the bike, what open water goggles give the best vision…I could go on. The detail of it all, the delight of it all. Of course, come race day it dawns on me that all this reading, researching, and watching is not actually synonymous with training hard, which is why I’m a pretty useless triathlete – but that’s another story.

What I am interested in – in relation to autism – is the concept of burning matches. Proper triathletes (i.e. not me) refer to their best races as being the perfect balance of burning just the right number of matches, in order to get their optimum performance. The analogy is simple – each match is a ‘spike’ in effort (usually in triathlon cases this would be physical). So, getting out of the saddle up a steep incline might burn a match (as opposed to slipping down into a high gear and spinning up the hill at a slower pace); the athlete starts with a specific number of matches – if matches are left unburnt by the finish line, it means that there is spare energy – and, therefore, the race has not been raced hard enough. But woe to the athlete who burns all their matches and finds themselves in need of one for the final push – the dreaded ‘DNF’ (did not finish) is something no one wants in the final results listing!

So, what has this got to do with being autistic I hear you ask? Well, perhaps the day in the life of an autistic person could also be seen in relation to this analogy. Morning comes – and a quick check of the matchbox shows that there are some matches today (some days there may be none at all, and those are the days that the autistic child can’t make it to school or the autistic adult can’t make it out of bed, let alone out to face the world). If matches are in abundance then the autistic person might be able to face numerous challenges, and not feel ‘burnt out’ (you see what I did there?). Conversely, matches might be scarce – in which case there needs to be some hard choices in terms of where to expend that energy.

The problem comes when others don’t know when you’re running low on matches. When demands (which may not even seem like demands to the PNT) are levelled at you that require a match to be burned, but it’s not yet even mid-morning. When you know you have much of the day left and are rapidly running out of matches. What do you do then? Some people go into deficit match mode – effectively burning matches that don’t exist – in other words that energy (and in this case it’s usually emotional and mental energy rather than physical) has to be taken away from some other source – which can lead to shut down, fight or flight, melt down, withdrawal – all those things that many autistic people will tell you are best avoided if at all possible. Trying to burn matches that don’t exist for the autistic person is far more worrying for the autistic person than for that triathlete. While a DNF might be pretty hard to take for the triathlete, a DNF for the autistic person is a very real, potentially very damaging blow – and it has a knock on effect. The chances are high that come next morning, those matches will be pretty low in stock.

Maybe people reading this will think ‘well, it’s the same for everyone’ – and I would whole heartedly agree that the principle is the same for everyone – but that for most autistic people, most of the time, there are fewer matches in the box on a day to day basis compared to the PNT.

How can unhappy autistic children be supported