Autism and Triathlons, Burning Matches, and Balancing Life

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.

#AutisticsinAcademia #autisticpride

Autistic Pride

I’ve just finished teaching the Post Graduate Certificate in Autism this week to a new cohort. Emotionally draining as always, and a simply amazing experience. I’ve never run the course without input from autistic academics, nor have I ever run the course without autistic students mixed together with their predominant neurotype peers. My belief is that autistic academics are integral to new autism research, to new learning opportunities, and to new advances in our knowledge and understanding of the autistic lived experience. I count myself as immensely fortunate and privileged to be in a position to work alongside autistic academics on a daily basis. I learn from those individuals on that daily basis, and my life would be considerably worse off without them.

I can’t be proud of my students – I don’t have that right. They are wonderful because of their own work, not because of me. But I can celebrate the fact that they should be so, so proud of themselves. Those Post Grad students, Masters students, and Doctoral students who have completed their studies or are still engaged in them – many of those autistic students tell me that they were led to believe that they would never achieve academically. Some struggled hugely at school. Some were told – by their own educators – that they would never make it through school exams, let alone get to university. So, to be studying academia at the highest academic levels, and brilliantly leading the world in their own subject area – this, surely, is something to be proud of.

I know many of those who have contributed to this blog – and would like to get to know them all. A very particular mention must go to Gill who I know won’t admit to being the amazing person who was the catalyst for this very idea, and who organised all of the blog entries and basically handed everything over to me along with the banner above to make my life as simple as possible – such is the star nature of Gill Loomes. Here’s to more caffeine based putting the world to rights Gill!

This blog celebrates autistic academics. There are plenty more than this representation, of course. If anyone is reading this and wishes to be added to the blog, please do contact me.

Nick Chown

Nick Chown current photo

I am an independent autism advocate, mentor, researcher, and trainer. I have led small research teams developing a framework for ‘inclusive’ autism research, and in researching support for autistic students at university, barriers to learning for autistic students in further education, autism awareness in the UK police service, viva protocols for autistic doctoral students, and diagnostic pathways for autistic adults. I am a member of the editorial board of the Journal of Autism and Developmental Disorders. My book on autism theory has been well-received. Prior to working in autism I had a lengthy career in corporate risk management and as an insurance loss adjuster. It was when needing to better understand autism whilst line managing a colleague with Asperger syndrome at the Metropolitan Police that I took a Post Graduate Certificate in Asperger Syndrome (AS). I met the course leader, Luke Beardon, for the first time then. This began an abiding interest in autism. I went on to obtain a Masters in Autism and PhD at SHU with Luke as my academic supervisor throughout. During one of the lectures in Sheffield I came to a very sudden realisation that I may be autistic myself. I was subsequently diagnosed with AS in my mid-fifties. I was made redundant by the Met at age 55 and, rather than look for another job in risk management, decided to see if it was possible to work full-time in autism. For a while it was, but the squeeze on local authority budgets forced me into a ‘portfolio’ career (I also prepare book indexes and teach English to Spanish and Catalan speakers here in Barcelona). All my research is focused on matters of practical benefit for autistic people, and I advocate for and support autistic adults. My intention is to keep working in autism for as long as I am physically and mentally able to do so. Despite having had an enjoyable earlier career, nothing has meant more to me than working with other autistic people.

Liz Hughes

My daughter was diagnosed with Asperger Syndrome on the day after her 5th birthday. It didn’t come as a huge surprise, as I had some awareness already, but her diagnosis catapulted me into an all-consuming quest to learn more – I became quite insatiable in my drive for better understanding of autism. I was fortunate to access many NAS courses while they were widely available locally – and free! I went on to complete autism courses with the Open University, the ICEP, and then the PGCert in Asperger Syndrome (now autism) at Sheffield Hallam, which is how I came to know Nick and Luke and subsequently other members of the HA research team.

My topic was focused on the specific difficulties of females on the autism spectrum, including poor chance of diagnosis, due to their often different presentation, and the historically male-centric skewing of the diagnostic process. During reading many publications by autistic female authors such as Rudy Simone, Jennifer O’Toole, Gunilla Gerland, Donna Williams, Tania Marshall, a lot of bells started to ring in my head, not just about my daughter, but about myself as well.

As part of my quest for better understanding, I joined various online support groups, for parents of children on the spectrum, and also for adults on the spectrum, although the latter I initially joined as platforms to launch a survey. I now spend a lot of time as administrator on some of these groups, and I set up my own group for people who live with both autism and hypermobility/Ehlers-Danlos Syndrome. There is frequently a link between the two, which is now becoming better researched and understood.

In a previous life I was a civil servant, and then an IT analyst, and once spent a sort of gap year working with racehorses and show jumpers!

Marianthi Kourti

Marianthi Kourti

My name is Marianthi Kourti and I am currently a PhD researcher at the University of Birmingham in the School of Education, and part of the Autism Centre of Education and Research. I did my undergraduate studies in Greece, where I am from, and I studied Special Education, focusing on autism studies. During my four-year degree, which included various courses and several conferences and workshops on autism, I learned very little about autistic people who are considered more able and practically nothing about girls, women and individuals with gender identities other than cis-gendered male. After graduating, I had to support some students at school who did not fit the descriptions and did not respond to the methods I learned in university, so I decided to do some further research, which eventually led me to discovering my own autistic identity. I have since dedicated my work to bringing to light the needs and identities of less visual autistic individuals, such as women and girls and people with non-binary gender identities. I have completed my MEd on autism at the University of Birmingham, during which I focused on the experiences of autistic women diagnosed in adulthood and I have since proceeded to follow up some of the findings of my previous research regarding how autistic women, girls and individuals of non-binary identities form and experience their gender identity. I am passionate about making autism and neurodiversity research a space where autistic voices are heard the loudest as well as a place where every autistic person, regardless of their other identities and beliefs feels represented. I am also passionate about intersecting autism research with other social research traditions such as feminism, gender studies, race studies etc. which will lead to further examination and understanding of autistic individuals as persons, and the autistic identity as a lived experience in order to improve outcomes for those on the autism spectrum personally, professionally and get them recognized as a social group whose voices have been suppressed and systematically ignored.

Gill Loomes

bty

I’m currently doing my PhD (a socio-legal study of the Mental Capacity Act 2005) at the University of York. I am also a tutor at ACER – the Autism Centre for Education and Research, University of Birmingham – and have experience as a research consultant, including for the Autism Education Trust. My professional background is in advocacy, and I have a strong commitment to autism advocacy, and to its potential to support our communiities.

My commitment to autism activism and politics is rooted in a focus on community building and strengthening. I care about how we can support each other, to go beyond finding a place in society, and to use our autistic ways of being in order to make our mark on the world and to change it for the better – not just for ourselves, but for others who experience the oppression of society’s normative expectations.

I care about research because I recognize its power to shape and influence our experiences – from the hurt and shame of seeing our ways of being described as “unhealthy” or “abnormal” to the thrill of connection when we read our lives in the words of others. And the power of finding our history and our politics – The Social Model, ‘Nothing About Us Without Us’ – Independent Living, Disability Rights – and, of course, Neurodiversity. How they were fought for and the strategies used.
We need that. We can learn from that. These are our tools.

When I graduated in Law, just over a decade ago, people asked if I was interested in doing a PhD. I was – I love learning, I love thinking and I love writing. I could think of nothing I’d rather do. But then I thought about what they said I’d need to do to apply, and I thought about what I “knew” about autism, and I was sure I couldn’t do it – too “inflexible”, needed “too much support”, not “independent” enough. So I walked away.

This is why I care passionately about #autisticsinacademia – about visibility and about (supported) aspiration. I want autistic people to be able to reach for the stars, and to have the community strength around them to support them.

To me, this is Autistic Pride, and it matters.

Catriona Stewart PhD MSc PGDip PGCert MCPP BA (Hons)

Catriona Stewart (2)

Catriona’s doctoral research focused on girls with Asperger syndrome and anxiety; findings from her study were published in Good Autism Practice May 2012. In 2012 she co-founded peer-support and knowledge exchange organisation, SWAN: Scottish Women’s Autism Network, which gained charitable status in 2016. SWAN has presented 3 ground-breaking Learning Event seminars at Strathclyde University and in 2016 was shortlisted for a National Diversity Award. Catriona is on the Autistic Advisory Panel of research project, the National Autism Project, (NAP) and is one of their Expert Advisors. She has presented to many events, including the Scottish Autism Strategy Research Seminar series, Glasgow 2014; Shaping Autism Research UK, 2015, Edinburgh; TAE project, Birmingham 2016; Autism Europe Congress, Edinburgh 2016; NAS Women’s Conference, London 2016; Globalisation of Autism London 2016; Advancement in Women’s Studies, Toronto, 2017. Catriona’s research on autistic mothers was presented to IMFAR 2017. She is Academic Advisor to the development of Scottish Autism’s Right Click programme for women and girls and is now working full-time within the charity’s research team as an Autism Advisor.

I started investigating the experiences of Asperger girls and their mothers in 2006, when no one else’s attention was focused on autism in girls and women at all and it was on the basis of that research SWAN was founded 5 years ago. I am committed to the lived experience as valid data and the authentic autistic voice. My PGDip in Gender Studies has helped to frame and give voice to what I view as an interesectionality of autism and gender – girls and women as a marginalised group within a marginalised population. The major transitional life experiences of puberty (in girls), pregnancy, childbirth, motherhood and menopause, for example, have been up until now, overlooked. The work I am doing with my colleagues at Scottish Autism’s Centre for Practice Innovation on the Right Click programme has started to address some of these issues and I’m hoping the Women’s Research and Exchange Network (WREN) will help to build on a constructive narrative of autism in girls and women, with research that is focused on improving, not just our knowledge base, but people’s lives.

Tracy Turner

Tracy Turner

Tracy Turner is researching a PhD on the worklife experiences of autistic women at the University of Hertfordshire. I have spent all my working life in the voluntary and public sectors, latterly working as a consultant and Visiting Lecturer at the University of Hertfordshire. My son was diagnosed with Asperger Syndrome as a teenager. Following postgraduate study on autism I became very interested in the employment experiences of autistic people. The National Autistic Society suggest that only 16 % of autistic adults are in employment, yet it is clear that this figure significantly underestimates actual employment, as there are likely to be large numbers of undiagnosed adults, especially women in the workforce.

Autism is diagnosed significantly more often in men than in women (Werling and Geschwind, 2013). Average estimates suggest a ratio of 4:1 men diagnosed to each woman (Christensen et al, 2016). Researchers and clinicians increasingly describe how autistic women carry out camouflaging activities to mask their autistic behaviours or presentation (Lai et al, 2016, Dean et al, 2016), perhaps enabling them to function more effectively in the workplace.

35 women have been interviewed for my research, ranging from women at the start of their careers up to women approaching retirement. The research suggests that diagnosis has had a major impact on the women in the study, enabling them for the first time to understand their own identity and adapt their working lives to their autism. Many women have been stigmatised and ‘othered’ in the workplace, and many have raised being bullied at work. Whilst some women have negotiated the workplace fairly successfully, having had the opportunity to play to their autistic strengths, a number of women on the other hand describe a pattern of having undertaken numerous short-term roles, leaving them feeling significantly frustrated and underemployed.

Julia Leatherland

Julia Leatherland

All seven members of my household are autistic, that’s myself, my husband and all five of our children. When I was first asked to write something about ‘autistic pride’, I took the term literally – that’s what I do – and became stuck. Stuck considering whether it is possible to feel proud to be autistic any more than it is to feel proud to be human. After all, it’s not an achievement, it’s just who I am. Then it was explained to me – by someone who is less constrained by seeking to interpret the exact definition of every word – my autistic husband – we are all different you see – that autistic pride refers to a celebration of autism and autistic culture, community, and identity. Autistic pride is being unashamed of one’s autistic identity and celebrating what it is to be autistic. In this sense, I am ‘proud’, and yet, until now, have not openly disclosed my diagnosis. I feel no shame in my autistic identity, and yet am concerned about how others might respond to me if they know. I want to continue to be accepted, or not, based on who and how I am, and what I do, not on any preconceived assumptions of what autism is and how I am ‘affected’. Such is my experience of parenting autistic children, and studying and researching autism for the last seven years, that I know only too well the assumptions that are made at a personal and professional level by – often well-meaning – non-autistic ‘others’, who think they ‘know’ autism. So why have I chosen to disclose now? I have begun to realise that non-disclosure can serve to perpetuate the autism myths I so want to dispel. If those autistic individuals, like myself, who can ‘choose’ to, stay hidden – because we are able to mask our difficulties – then there will continue to be less information available to challenge the assumptions people hold about what autism actually ‘is’. Without highlighting the full breadth of the diverse spectrum, autism will continue to be understood as a deficit based diagnosis, rather than a skills-based identity. My children, like many others, display skills. They have difficulties too, mostly created by non-autism friendly environments, but honesty, loyalty, perseverance, humour, generosity, and – as I’m often told – ‘loveliness’, are all qualities I see in them every day, coupled with high levels of academic functioning and ability. My own skill set is harder to share – because the skill of blowing my own trumpet is not amongst them – but, as I am currently writing up my doctoral thesis, I suppose I must accept that I have some. My children’s ‘loveliness’ perhaps suggests that I possess some parenting skills too. Before I understood myself to be autistic I thought I was lesser. Less able to do so many things that to others appeared to come naturally. Now I can appreciate that I am different and, with that knowledge, the feelings of being ‘lesser’ have mostly gone. That is what I would like to celebrate for autism pride. The discovery of an identity that allows me to feel complete.

Julia Leatherland is completing the final year of a PhD which explores the school experiences of mainstream secondary pupils with a diagnosis of autism. She has designed and developed a new system to communicate individual pupil’s classroom support needs to teachers via the class register and an evaluation of this system (FAMe™) is an integral part of her PhD. Julia has a BSc in Psychology and started her career as a psychology assistant before becoming a researcher at Sheffield Children’s Hospital and then leaving work to be a full-time parent. Since 2010 all five of Julia’s children have received an autism diagnosis and she has focused on furthering her understanding of autism, completing a Post-Graduate Certificate in Asperger Syndrome, and an MA in autism. She received her own diagnosis in 2016. Julia has written and contributed to a number of journal articles and book chapters. She is passionate about undertaking research in areas considered to be a priority by the autistic population and has a particular interest in education – barriers to learning and successful outcomes; children and young people; and mental-health and well-being.

Shona Davison

Shona Davison

What is the first thing one does when discovering one and many of one’s family is autistic? Well, most people would do some research. Unfortunately this is fraught with danger when it comes to autism. There are so many fallacies and misconceptions all over the internet that it would be difficult to come away from that research not feeling like you are all doomed, your children will be forever unemployed and they need training to be ‘normal’ for them to have any hope. After reading a few dire books and many blog posts (I was yet to discover all the fantastic blogs written by autistic people), I hit the jackpot and accidentally came across the Autism MA at Sheffield Hallam. I sat in my first teaching session within a couple of weeks of enquiring as a new year was just about to start. It all happened very quickly and I had no clue at the time how much I would benefit from the course. It turned out to be a refreshing change from all the negativity and blame to which autistic people and their carers are usually exposed. Some of the most important concepts I have been taught are: critical thinking – the first module is all about critiquing the theories of autism, many of which were new to me; and the social model of disability – this was a revelation and it enabled me to see that my difficulties are not my fault. I have to cope with poorly designed environments and the best way to help myself is to change my environment; and research skills as I am currently doing my first mini research project.

Since I started this MA and we got our diagnoses, my family has had to make many big life changes. I think we have made better decisions than we would have if I hadn’t learned to reject the medical model. We will all reap the benefits in the long term. It has been very useful having a supportive network of people around me. I have made many contacts and friends via the masters and online, including other autistic people and people with lots of experience in schools (very useful when your children are autistic).

From a professional perspective I don’t have a clear idea what my future plans are but I believe that my qualification will help open some new doors when I am ready to go back to work.

Naomi Lawson Jacobs, SOAS, University of London

I am in the final year (I hope!) of a PhD that has taken me a long time to complete. I’m autistic, but was only diagnosed part way through my PhD. The mix of inaccessible environments and policies, and ableism that I have met in academia has made my PhD a struggle, even though I love what I’m researching. I am studying the experiences of disabled Christians, including a number of autistic Christians. This research is much needed at a time when much of what is written about us by theologians is problematic, and often, so is churches’ inclusion. Only this past week, the excellent Ann Memmott (http://annmemmott.org.uk/ ) has been sharing on twitter some sections of a book she’s reviewing on the theology of autism, which has been full of offensive and misleading ideas about autistic people. I hope that the sharing of more stories and ideas shared by disabled Christians themselves, including autistic people, may help in this situation. Autistic people matter, both in the churches, and in academia. Both are places where autistic people are too often excluded, but where much can be done about that, if there is more acceptance and more willingness to work towards real inclusion.

My PhD blog can be found at https://naomijacobs.wordpress.com/

Dr Emily Lovegrove (www.thebullyingdoctor.com)

There is a sense in which we like to think our destiny is somehow mapped out. The reality is probably infinitely more random! For instance, I used to be a piano teacher (why? Because somebody asked me and it grew until I had 40 pupils a week!). However, as my own wonderful kids / beloved pupils grew up and left for uni etc. I became desperate to fill the gap their presence left, but with what??
I finally gained my maths GCSE. (Now what?) Another maths student suggested we might do A level Psychology (why? No idea… but why not?). And I was instantly hooked – I had no idea then that I might be autistic but the idea that there might be actual, predictable patterns to the way that people behave was both fascinating and soothing. I became totally absorbed and applied for a university place. There I took extra modules, passed with top marks and was offered a funded PhD to look at adolescents and their appearance concerns. Perfection!! Absolutely loved this too – lots of talking with fantastic teens on their recognition that whatever we might say about personality mattering more than appearance, the reality is we judge strangers in a nano-second and there is a strong link between the way others see us and the likelihood, frequency and intensity of subsequent bullying.
It became increasingly obvious, linking past research to mine, that bullying about appearance was the most common type of bullying. I felt a strong sense of responsibility to those hundreds of teens who had confided their fears and anxieties to me that I needed to provide some help. I took all the literature and ‘toolkit’ of strategies offered to teens with severe facial disfigurement when they come up against endless and distressing stigmatisation by those who recoil, laugh, patronise them. With this as a basis, between us we devised, experimented and modified strategies that gave us the most self-confidence and understanding. We debunked the myths (bullying makes you stronger / just tell someone and it’ll stop / just ignore it and it’ll stop / bullies have no friends etc etc), and we practised using all the ideas we’d come up with… There were an awful lot of mistakes and a LOT of laughter! But we got there and after sharing the successful strategies with more hundreds of pupils we had our results… Yes, we still got bullied (everyone gets bullied) – but less so and we dealt with it better. Just as important, we were able to ignore the less distressing stuff and knew when it was important to tell others what was happening. It was life-affirming stuff.
Years of training teachers and working with classes of kids / often autistic individuals later, it was suggested that I was autistic. This was both a revelation and a relief but I also now wonder if it’s why I always got on so well with / so easily related to teens whose volatile search for a sense of self, in what can feel an alien world with arbitrary rules, so chimes with the world of autistics in a neurotypical world. It’s not that there is anything intrinsically wrong with them or us, it’s just that like innovative, permanently searching teens we currently find ourselves square pegs in a determinedly round world.

KC Retired PC @CheshireForce

Kleio

I consider myself to be part of an ‘autisticly happy’ family, at home we are a family that understands each other and I strongly believe this is because we are in an environment that suits our needs.

I served as a police officer with Cheshire police and was retired due to ill-health. After my retirement I entered into education where I completed a HE Certificate in Theology and then went onto to study for a Bachelor of Health Science degree. In 2013 I enrolled on postgraduate certificate in autism at Sheffield Hallam. Upon reflection this is where my journey of self- discovery began. Dr Luke Beardon, Dr Nick Chown, and Dr Damian Milton became my inspiration to continue with my education, offering me both support and opportunities as a researcher.

I am a founder member of the ‘High Achievers’ research team that has investigated the support for autistic students at universities in the United Kingdom. I have also acted, as a reviewer for autism research, offering feedback to researchers. My latest review was the National Autistic Society Autism: A guide for Police officers and Staff.

I am now studying criminology and linking this to my knowledge and experience of autism and policing. I have been offered a place on a professional Doctorate where my research theme will continue to be in the field of policing and autism.

Dr Damian Milton

I have been working in academia since 2000, previously as a sociologist, but was made redundant in 2008. This led to my own diagnosis in 2009 at the age of thirty-six, which had followed my son’s diagnosis in 2005 at the age of two. This break from work also led me to return to studying where I completed a Postgraduate conversion diploma in Psychology from the Open University, credits in Philosophy from Oxford University, and a Postgraduate certificate in Education from the University of Birmingham – to add to my Bacheler and Masters degrees in Sociology and my Postgraduate Certificate in Post-Compulsory Education. Finally completing my PhD in 2015 (awarded 2016). Educational progression had not always been an easy process for me though, having had a very poor experience of school life and having withdrawn from my first attempt at both a degree and PhD program. Perserverance furthers however (as my colleague Dr. Dinah Murray often tells me).
In recent years I have been involved in a number of projects, from designing materials for the Autism Education Trust, to a project at London South Bank University looking into the potential benefits of mentoring for autistic adults. I currently work for the National Autistic Society (NAS) as Head of Autism Knowledge and Expertise (Adults and Community) and on projects for the University of Birmingham and London South Bank University, but in August 2017 will be starting as a part-time Lecturer post at the Tizard Centre, University of Kent (alongside my NAS work).
I currently chair the Participatory Autism Research Collective (PARC) network. This group was set up to bring autistic people, including scholars and activists, together with early career researchers and practitioners who work with autistic people. The aim of the network is to build connections and share knowledge and expertise between those wishing to see more significant involvement of autistic people in autism research. This project was initially based at London South Bank University, where PARC has held a number of events, and contributed to research projects and publications. The group is looking to expand activities to other Universities in the not-too-distant future. The website for PARC can be found at: PARCautism.co.uk

Gemma Williams

Currently still full of the enthusiasm of someone at the start of an adventure, I’m beginning my PhD research this year at The University of Brighton. My route into academia was circuitous: Leaving school with top grades but no real grasp of what was going on in the world or how to manage myself in it, I started but then left an undergraduate degree in English and Philosophy at York, and several years later tumbled out of a half-completed midwifery degree with inexplicable ‘seizures’.

After some time out to recover and an unexpected stint enjoying a career as a touring musician, I retrained to teach English as a Foreign Language, teaching, for several years, a range of learners from asylum seekers to young teens to international business professionals. This experience allowed me to enter onto the English Language Teaching MA at the University of Sussex, where, now with the benefit of an autism diagnosis and the support that this entails, I was able to thrive.

My PhD research has been officially endorsed by the National Autistic Society and will explore what has traditionally been referred to as ‘pragmatic impairment’ in autistic language, attempting to reframe it using a ‘difference-not-deficit’ approach borrowed from contemporary lingua franca research. It will take a critical perspective, challenging ‘norms’ in the measurement of language performance and competence and seek to identify the strategies put into place by autistic speakers to manage the challenges that the differences bring. I’m delighted to have the opportunity to nurture my love of language whilst (hopefully) adding to the growing canon of autism-positive research. What a wonderful community to be part of!

Carole Kelly

I’m 51 years old and have recently been diagnosed with ASD (Asperger profile) and ADHD. This year I started a Professional Doctorate in Health Research at the University of Hertfordshire, researching the lived experiences of middle-aged women (over the age of 40 years old) with Asperger Syndrome (AS) who were diagnosed in adulthood. I am also a proud mother of an eight year old boy who has ASD and severe ADHD as well. I work full-time as a senior scientist at Public Health England on a national survey of people living with HIV/AIDS.
I have always enjoyed independent reading and researching topics at home. All my academic qualifications have been completed on a part-time, self-funded basis whilst working full-time as I ‘dropped out’ of school at a young age. In 1998, I completed my undergraduate BSc Hons with the Open University and went on to do an MSc in Medical Microbiology with the University of Westminster in 2001.
During the period of time that my son was diagnosed with ASD, I started to recognise that his movements and behaviour was very similar to mine. I also discovered that there were other autistic adults who grow up undiagnosed at a time when AS was not yet classified. After waiting two and a half years, I have now received my diagnosis. This identification has helped to explain many difficulties (and strengths!) that I have had through the years, particularly in my childhood. Last year, I completed the PGCert in Autism and AS at Sheffield Hallam University which empowered and motivated me to investigate further. The inclusive research that I will be carrying out, as an autistic woman, will be on the enlightened and empowering basis, that autistic people think differently, rather than in an inferior way, to non-autistic people.

A ‘Dino-For’…

D – divine words of brilliance. So much to be learned from such an amazing range of people.

I – inspiration, insight, and intelligence. In each and every post.

N – no nonsense. Tells it how it is – whether others like it or not!

O – or, put another way, full of honesty, however hard it is to expose the truth.

S – so many posts, so many authors, so little time. But we need to make the time.

A – awesome reading. I love getting my notifications alerting me to a new post – little nuggets of gloriousness.

U – unparalleled levels of real experience to learn from. Real lives, real experiences, real learning.

R – Rhi, to whom this is dedicated. To her and all her fellow #actuallyautistic bloggers who tirelessly and selflessly write their thoughts down for others to learn from. The autistic voice is powerful indeed. I thank each and every one of you.

Autism and Loveliness are not Mutually Exclusive

AKA I am so naïve

Ok, so I was chatting to a Mum of some several autistic children, and she says something that really made me sit up and listen. She was telling me about how people really need to understand that autism and loveliness are not mutually exclusive. I had to interrupt and ask her to explain – not about what she was saying (as it seemed so obvious to me) but why she felt she needed to say it. It turns out that a frequent occurrence is her disclosing to people that her children are autistic – and their response being “but they are so lovely” – as if the two cannot go hand in hand. This is when I started to feel utterly bewildered. Surely, surely, society at large is not still so far behind in their thinking that one cannot be both autistic and lovely? But apparently, my naïvety is shining through – seemingly at least some people do actually think that.

This got me thinking. Why is it that being autistic somehow denies a person a personality? Because so often, it does. It’s kind of like as soon as someone tells someone else they are autistic then the shutters come down and the person is no longer a ‘real’ person, but an ‘autistic’ person – as if autism is somehow a barrier to being…well, anything, really, aside from being autistic.

Let’s just clarify – I would like to say once and for all but to be fair I thought that society in general had already cottoned on and I have been proved very wrong – being autistic simply means that. It means that one is autistic. Nothing – literally nothing – else can be inferred from the declaration of “I am autistic”, “my wife is autistic” (yes, amazing isn’t it? Women can not only be autistic they can also get married! Shock. Horror. (Sarcasm)), and so on. There is essentially nothing that ties all autistic people together aside from their state of being autistic. There may be all sorts of overlaps, propensities for certain likes and dislikes, similarities, aversions – but aside from being autistic there isn’t anything else one can infer from an autism declaration. Why is this? Because autistic people – wait for it – are actual, real, people with their very own unique personalities, characteristics, idiosyncrasies, dispositions, pet hates, preferences, attributes, natures, virtues, temperaments, attributes, charms – and so on. Yes, all autistic people share being autistic; over and above that, no judgements should be made just because of the disclosure.

Imagine a world where you were judged – for whatever reason, every day, sometimes by strangers – even worse, by people who know you better (and should know better) – in a manner that bears no relation to the real you. I don’t think that would be a very pleasant way to exist. But many autistics do exist so often in this state on that daily basis – sometimes to the point of giving up telling people that they are autistic. This isn’t because they are ashamed of being autistic – far from it. It’s because they get so utterly (and justifiably) fed up with (possibly well meaning) remarks based on ill thought out presumptions that rarely have anything to do with the actual individual. Statements starting with “so that must mean you’re…” are commonplace – and should be banned! Or “so, does that mean you’re good at…” or “so does that mean you’re bad at…” are often the death knell of meaningful interaction. It’s fantastic when people genuinely want to understand the autistic person better – and I think most autistic people are pretty willing to share if approached in the right way – but society simply has to stop making utterly inappropriate suppositions just based on the word ‘autism’. Not only are the suppositions usually entirely wrong, making them in the first place is actually pretty offensive.

The Waiting Game

Based on a recent experience I was involved in involving a couple of autistic individuals I am lucky enough to know.

Waiting. What’s the problem with that, I hear you ask? Well, if you’re autistic then it can be a huge problem. Waiting can – literally – take over your life. Waiting for an answer, a decision, an opinion – whatever it might be, the wait can be an anxiety inducing process of indeterminable time – and this latter can so easily oft be avoided. A simple holding email, for example, might allow a person to engage with life without having their lives put on hold for uncertain periods of time.

What it is about waiting that is such a problem?

Well, first off it’s the importance of the response. A simple question to the predominant neurotype (PNT) might not elicit any particular urgency, but if the answer is of dire importance to the autistic individual then life might stop between sending the email and waiting for the reply. A question that is seemingly innocuous to the PNT might be of desperate concern (for whatever reason) for the autistic individual.

Secondly, the ‘up in the air’ nature of when a response might be coming can play absolute havoc for the person waiting. In this day and age there are plenty of electronic forms of communication, some of which will divulge information such as when a message has been received…and when it has been read. For some people, checking these things (sometimes every few seconds) is the only activity that can take place between pressing send and getting the reply. This is an activity that could be fraught with danger. Akin to waiting for those test results (exams, results from the hospital, finding out something of huge importance) – you wait for the envelope, you wait…and wait…it arrives. Your heart is pounding. Your hands are shaking. You are terrified, excited, apprehensive, nervous, hopeful. You open the envelope. It’s empty. You crash. You’ve run through the gamut of emotions – for no reason. Back to waiting. Imagine this scenario – but instead of waiting for an envelope, the individual is clicking on the internet – every few seconds – to see if there is a reply. That same process, that same range of emotions – over, and over again.

Thirdly – the inability to stop the rumination – the ongoing thoughts that might intrude to the point of not being able to think of anything else. What might the reply be? What will he or she think about me? Will they understand what I meant? Will they misinterpret my words and will I then be in a tailspin of terror trying to work out how to rectify the situation? Sometimes those ruminations can become almost real, so the individual actually processes those negative emotions and anxiety rockets.

As is sometimes the case though, when it comes to the issues that autistic people face, listening to them is a pretty safe place to start. Simple rules might not eliminate anxiety – but may well alleviate it. For example, if my autistic student is due to submit draft work, we might decide to identify a date and time for her to send it to me, so that I can clear my diary well ahead of time so the time she has to wait for a response is minimised. As noted, a holding email may be of huge benefit to some – ‘I’ve read your message, all is fine, I will reply in greater detail tomorrow’ could mean the difference between an emotionally balanced autistic individual on the one hand and a sleep deprived emotional wreck on the other. Or – if you know you are going through a busy time, or will be away from the computer for the day, a similar automatic response might make a significant difference.

Lastly, remember that time goes by at different speeds for different people. You might think that leaving replying to an autistic person within a day or two is perfectly acceptable, as this might be fine for you. What, though, if each second of waiting feels like an hour to that person? I am as guilty as anyone, so to anyone reading this who’s thinking – ‘yeah, but you didn’t reply to me…’ – I am sincerely sorry. I will try harder.

I’m not sure that I have heard (or read) enough about waiting, but I do know the very real impact it can have on some people. So, if you have any choice, please – don’t play the waiting game.

Why do autistics need to be compared to the predominant neurotype all the time?

This has been worrying me a lot recently. The whole notions of diagnosis (or identification which is a term I prefer) through to reasonable adjustments, the concept of disability, equality, fairness – to me a lot of the issues stem from what I see as a fundamental and critical flaw in how autistic people are commonly compared to the predominant neurotype (PNT) as opposed to simply being understood within their own context. One only needs to scan through definitions and descriptors of autism to ascertain just how much judgement of the autistic person there is in relation to the PNT. Impairment in social skills? Read as impairment in PNT social skills. Impairment in Theory of Mind? Read impairment in PNT Theory of mind. The list could go on…and on – the point is that these judgments mostly seem to be a direct comparative analysis of so-called skill sets against a demographic majority – which holds absolutely no logic whatsoever. It’s akin to deciding that the lone dog in a room full of cats should be described/labelled/diagnosed as having impairments in purring, miowing, and looking aloof (slight sarcasm warning for that last sentence by the way). And before anyone gets upset, I am not suggesting that autistics are a different species to the PNT!

Of course the converse is equally the case – the PNT in the main make for terrible autistics! Show me an average PNT who has well developed autistic social skills and I’ll give you a medal (not literally – but I will be very surprised!). And yet the PNT are not labelled as impaired in (autistic) social skills – despite the fact that sitting enjoying company in total silence can be highly logical, immensely satisfying, and deeply enjoyable. The removal of ‘small talk’ can be the most glorious blessing, allowing people to have a sensible conversation without the litter of erroneous communications that bear no relevance to the subject matter. Again, the list could go on – the PNT usually lack good autistic empathy, linguistic accuracy, sensory diversity, the inability to lie, autistic logic…and so on. But are they encapsulated in a deficit-based impairment model as a result? No.

Ok – so I accept that others have written about this very thing, as have I – so I shall get to the point that has been worrying me recently. It’s this: that the autistic person’s success/or otherwise is based on PNT perception and status, as opposed to autistic potential. This scares me beyond belief, as it might mean that autistic children and adults are at a massive disadvantage just because they are able to ‘perform’ at a similar level to their PNT peers. If this is the case, then society is getting things very wrong indeed. Take the following:

A child in a mainstream school, causing no fuss, passing her coursework and exams with average marks.

An employee with no remarkable productivity but with no obvious negative issues either.

A university student, on for a below average second class degree.

One might argue that if all three of the above were autistic, it is unlikely that they would ‘qualify’ for any additional support, reasonable adjustment, application of equality laws and so on – after all, what’s the problem? Well, for me, the problem is that those individuals are being judged/assessed against a ‘norm’ – and not against their own potential. If being autistic is holding them back because of a lack of adjustment – then they are at a grave disadvantage. If, with reasonable adjustment those three could be the straight ‘A’ child in school, the most productive employee, the first class honours student – then are we not being discriminatory by not recognising this and doing something about it?

The same applies to being identified as autistic in the first place. One tends to need to be perceived as disabled in the first instance to ‘qualify’ for a diagnosis – ‘persistent difficulties…impairments…’ etc. – but compared to what? Or, more importantly, compared to whom? What if we radically changed our perception and instead asked the question – how much less disadvantaged might an individual be if we took autism into account, even if there appears to be no issue on the surface? You might be an adult who does not outwardly demonstrate a persistent difficulty in effective communication – but compared to what your potential is, you may be operating at a considerably lower level because autism has not been identified or taken into account. Surely what this means is that how we (society in general) understand and perceive autism should be vastly different compared to current thinking? If we stopped assessing autistic people in comparative judgemental ways, and instead tried to understand how their environments might be disadvantaging them in relation to their potential, we might all of a sudden realise just how many people are being discriminated against simply by being compared to the ‘norm’.

In my opinion one should not have to demonstrate disability, difficulty, or impairment to qualify either for a diagnosis, or reasonable support. If one is at a disadvantage by being autistic in a non-autism-friendly environment, then to me it’s discriminatory not to make appropriate attempts to alter the environment. Only then can we justifiably talk about equality in a meaningful way.

Autistic people deserve to be understood in relation to their own goals and potential, not those of the PNT.

For the love of inclusion?

I thoroughly enjoyed the coffee I had with a parent of an autistic child earlier on this week. I was far less enamoured, though, with the subject matter of our conversation. I say conversation – mostly it was the poor parent relating to me what the current circumstances were for her son who ‘attends’ a mainstream school. I deliberately put attends in inverted commas – I guess you’ll soon see why.

He (the autistic child in question) has a place at a mainstream primary school.

He is very bright and frequently demonstrates that his academic abilities are way higher than might be expected for his age.

He appears to be under massive amounts of stress and it takes a monumental effort to get him into school.

While at school his ‘behaviour’ is such that he is not allowed to be within the vicinity of other children.

He is frequently barricaded in a room.

He frequently injures himself such is his distress.

When he is unable to make the considerable effort to force himself into school he is classed as a ‘school refuser’.

The Local Authority tell his parents that they have a policy of inclusion, and that he should be attending the mainstream school.

This is not an isolated example; he is not the only child in the country having this experience. I’m not saying most autistic children experience anything like this – but no child should have to suffer like this.
The dictionary definition of inclusion is ‘the act of including’ or ‘the state of being included’. This child is not being included; quite the opposite – he is being segregated in possibly the most extreme manner imaginable. In fact, the very policy of ‘inclusion’ in this instance seems to be leading directly to exclusion. I thought that the days of assuming that inclusion meant ‘integration’ were long gone – sadly, not for this child.

At what point will Education Authorities understand that ‘mainstream’ schooling is not always the aspiration? That in fact, what we should be striving for is far less tangible and yet far more meaningful – first and foremost, the well-being of the child; the education must surely come second to that and if well-being is not being met then surely there must be an acceptance that the placement is not the correct one for that child? When I deliver training for Inset days I am so often told by teaching staff – ‘we simply can’t provide the support/strategies/environment that the autistic child requires’ – at which point I tend to think, ‘well, if that is case, why is the child still here?’ It seems to me that teachers are openly acknowledging that their school – for whatever reason – is not the appropriate environment for the child – so why is it that there is so much pressure on the child and the parents to do everything in their power to continue to go to that school – and, far more importantly, at what cost to the child’s well-being? However important education is, good mental health must surely be a priority. And make no mistake – traumatic experiences at school can certainly have a longer term impact on an individual’s mental health. We know, for example, that suicidal ideation and attempts are higher within the autism population – and levels of pathological anxiety are vastly higher within the school age population compared to non-autistic peers. If simply being at school is contributing to those levels of anxiety, then shouldn’t something be done about it?

The impact of a child being forced into an environment that is ostensibly ‘inclusive’ but in reality is anything but can be devastating. And if the alternative is to brand the child a ‘school refuser’ – this sends a very clear message. The message is that it’s somehow the child’s fault; they are the one to blame; they are the ones refusing the school.

So – what is the alternative? If we are going to accept that the autism spectrum includes a vast range of individuals with differing needs, we equally need to acknowledge that those needs may require differing teaching and learning opportunities. Alternative schooling need not be expensive, nor need it be exclusionary – as the National Autistic Society note, ‘some children will be able to have a more inclusive experience in a specialist setting‘. Specialist need not be synonymous with expensive.

The point being, inclusion should no longer be measured in relation to accessing a mainstream school. So when a child is clearly not in an appropriate setting, please don’t assume that inclusion in mainstream is the ‘gold standard’ – for some children, nothing could be further from the truth.

‘Real’ inclusion should be based on well-being, equality, happiness – these matter. Being shoe-horned into a mainstream environment under the auspices of ‘an inclusive society’ without taking those things into account – that isn’t what autistic children should ever have to face. Mainstream can be ideal for some; but traumatic for others.

Why???

As always, these are simply my thoughts only…

I am so frequently astonished at just how much ignorance there is in the autism world. I find myself questioning, over and over again – why, why, why? Surely – surely – it’s not that complicated? There isn’t that much that one can say that is irrefutable when it comes to ‘statements’ about autistic children and/or adults, but equally clearly (I think) it’s not too difficult to understand how much is so wrong in our current society, so I feel I have the ‘right to write’:

Why are autistic children told that their future will be bleak…when there is absolutely no way on earth that anyone has any clear idea of what the future holds? Shame on any professional who professes to have a crystal ball and pretends that they can see the future.

Why are autistic people branded as having no sense of humour…when the opposite is so clearly the case for so many people?

Why are autistic children deemed inferior simply because they find communicating verbally problematic…when in many cases if the rest of the world took the trouble to learn their ‘language’ then communication could be as effective as talking?

Why is anyone seeking to ‘prevent’ or ‘cure’ (eradicate?) an entire, rich, resourceful, enlightening population without whom who knows what state the world would be in?

Why is honesty seen as something that should be divided up and only given out in segments, while the rest of the time lying is somehow ok? We tell our children – over and over – tell the truth, honesty is a virtue – and when they speak their honest minds they are told “you’re being inappropriate”…”you’re rude”…”you’re too honest”…

Why are so many autistic adults denied an identification of their very self – a diagnosis of autism – when it can be such a meaningful and life-changing experience?

Why is glorious solitude forcibly disrupted for the child for whom others have decided that ‘peer relationships’ are somehow more important than low levels of anxiety?

Why is there an expectation and sense that ‘fitting in’ is a desired and positive state of being, while acceptance of difference remains a pipe dream for so many, leading to debilitating and crushing mental health problems that could be avoided?

Why are autistic children and adults told – “no, you can’t be autistic, there’s nothing wrong with you” – as if there was something inherently ‘wrong’ with being autistic?

Why is inclusion more about physical integration and school attendance rather than acceptance and flexibility to meet different needs?

Why are crucial employment opportunities denied to so many autistic adults as a result of the extreme disadvantage individuals are at because of typical traditional recruitment, job descriptions, and ways of managing employees?

Why are parents sent on generic parenting programs as a means to reducing difficulties their autistic children are facing?

Why is there such a lack of understanding that many problems faced by autistic people are not because of their being autistic, but because of others’ lack of understanding?

Why do research funders habitually ignore or not engage with the autistic population when identifying what research needs to be undertaken?

Why are parents forced to spend considerable time and effort in fighting for their children’s rights when all they want to do is spend time supporting their children?

Why are there so few roles that demand high levels of autism understanding when it is clearly so important to the autism community?

Why are children sometimes forced to behave in ways that are actually painful to them – physically, mentally, and/or emotionally – just so they behave in ways that are common to their non-autistic peers?

Why is there an ongoing drive towards ‘autism awareness’ – as opposed to genuine understanding?

Why are there so few autistic individuals involved in all the strategies, training, policy development, legislation, and academic awards that relate to autism?

Why is the constant message to autistic individuals and their parents still so often rooted in disabling negative terms such as impairment and disorder?

I don’t think I am a particularly bright person. I think these questions are pretty simple. So – why – why! – are they still needing to be posed?

The Diagnosis Debate

Should I or Shouldn’t I?

I am not claiming any expertise here; the following is simply a brief commentary on recent Twitter activity with purely my own perspective/understanding/thoughts…please read all the way through before any adverse reactions set in!

There has been a simply splendid amount of debate in social media of late concerning autistic individuals with an ‘official’ diagnosis (i.e. presumably a medical, clinical assessment followed by a ‘yup, you’re on the spectrum’ kind of response); sadly – very sadly – there have also been some hurtful comments flying about between individuals who oppose one another in relation to their position. My summary of the ‘discussions’ is as follows:

  1. Some people are extremely opposed to anyone claiming to be #actuallyautistic without some kind of professional (i.e. medical) corroboration, following what would (hopefully) be a thorough and objective assessment;
  2. Others claim that it is their lives, their knowledge, their research, and therefore their absolute right to identify as autistic irrespective of any external assessments;
  3. There appear to be a small number of people who may be guilty of jumping to conclusions based on taking a simple online test, or going down the road of ‘ooh, I did that once, maybe I’m autistic then…’ – I have to note, this particular group of people are possibly well meaning, fairly insignificant (statistically) and – while horribly frustrating and possibly even inadvertently patronising – may simply be demonstrating staggering ignorance rather than setting out to cause any harm, so we’ll leave them to themselves for the moment, if that’s ok…;
  4. From what I can gather there may also be a significant minority who deliberately choose to claim autism who actually are not – perhaps by being misguided, perhaps as a result of other neuro-diversities, but possibly even for a deeper, and darker reason – to cheat the system, manipulate, maybe feed some narcissistic habit – these are suppositions only, but others on Twitter have indicated as such and this group should therefore be acknowledged.

Ok – taking these point at a time:

  1. It is my view that one is autistic from birth – and from my understanding the vast majority, if not all, of good, validated research tells us the same. Therefore, one could say that the debate is a pretty simple one – the actual diagnosis does not make one autistic – however, it does corroborate it (at least if the assessment is an appropriate one). The debate, though, is more than simply what one might be able to claim – I accept that one can only claim #actuallydiagnosedautistic following assessment, but to depend solely on the assessment itself is surely a dangerous game to play? We know that whole swathes of the population remain undiagnosed, and we know there are individuals fighting for a diagnosis (or, in my preferred parlance, identification) who get turned down – not because of an absence of autism, but because of an absence of decent services to provide that identification. Where do these folk fit in? They are just as autistic as those with a formal identification, they just don’t have the report/letter/medical affirmation. I don’t know the answers, and I absolutely understand the various arguments, but hey, there is a problem here denying someone their own essential identity, surely? BUT – who is the assessment police? At the moment, one argument that doesn’t appear to have arisen is who knows best? Some adults – with an eventual diagnosis – have been to more than one professional only to get different opinions – which means that at least one professional has got it wrong! What about those autistic individuals who are denied an identification as a result of all those things we already know about in terms of a flawed system for identification? I know that there are arguments suggesting some people will carry on visiting professional after professional until they hear what they want – but how do we know that this isn’t because of the issues with getting a recognition, rather than there being nothing to recognise in the first place? Similarly, for those ‘self-diagnosed’ – is there an expectation that they need to corroborate their findings? Prove to the community that they’ve done their homework? Show their workings out? I worry about this, as I genuinely believe, and have been taught (by autistic adults) that if one genuinely believes one’s self to be autistic, and have read widely on the subject, then the likelihood is very strong that you are.
  2. Following on from (1) – of course this isn’t something that anyone should take lightly, but really – do that many people actually claim autism without due consideration, careful thought, taking and heeding advice, and concluding with a clear rationale? And, if so, what’s the problem with that? People are ‘allowed’ to decide whether they are gay without any formality – and, interestingly will be covered under the Equality Duty – yet autistic people are not afforded the same privilege. As someone once said to me – “why should I have to go to an NT doctor just to be told who I am, when I already know who I am and indeed know far better than him!” But there is a problem, whether one likes it or not. Current medical guidelines indicate that one has to be assessed by specific professionals in order to qualify for a diagnosis; therefore, unless one does go down that route, then officially one cannot claim a diagnosis. Aha – so here we are getting closer to one of the issues – that of the claim. I suspect many would argue that a claim of a diagnosis is not the same claim of being autistic (nor even vice versa). Is it as simple as semantics? Probably not, but it is worth pointing out…
  3. As already noted, not for now…
  4. Now – this is, for me, the major problem and quite possibly the main reason why there has been such heated discussions. If there are, indeed, a few people who deliberately set out to claim #actuallyautistic who do not ‘fit the bill’ – and, presumably, know they would be ‘found out’ should they go for a formal assessment – then a spanner the size of which is substantial is thrown into the proverbial works. All of a sudden the innocent get tarnished, those who have had the formal assessment are the only ones ‘protected’ as such, and the community divides. This should not happen; those few (and I really do hope they are very few) should not be allowed to influence the amazing community that exists in social media – the one of support, acceptance, understanding, sometimes profound disagreement – but done in an accepting manner – to have this threatened by a few individuals who are presumably a far cry from the integrities shown so often within the autism community, is devastatingly sad. It is in this context that I can absolutely see both sides – I suspect knowing there are some out there who are claiming something that they are not, and the only way to weed them out is by a diagnostic assessment, would lead to one being vehemently opposed to anything but an official diagnostic route – totally understandable! But surely, if this is the case (forgive me if I’ve got it wrong) then the fight should be against that small group of imposters, not against those who genuinely believe in their autistic identity. I guess then the problem is how to differentiate between the two groups?

I hope I haven’t upset anyone – and I hope all I have done is identify that a small number of people who go against decent principles should not have the influence to tear apart a wider community. There will always be people who want to manipulate and cheat – the fight should be against them.