Grammar Schools and Special Educational Needs/Disability: An Insider Perspective

Background Information & Context 

If you are based in the UK and have even a passing interest in news, politics and current affairs, you have probably come across a lot of fairly recent discussion about the possibility of a return to the grammar school system as formal education policy.


In case you’re reading this outside of the UK, or are otherwise not totally familiar with the term “grammar schools” – such schools can be defined as “(In the UK) a state secondary school where pupils are admitted on the basis of ability. Since 1965 most have been absorbed into the comprehensive school system.”

Such schools existed within a segregated education system where a child’s options in terms of secondary education were often significantly shaped by the results of an exam at the age of 11.


The system has been widely criticised as divisive on the basis that it privileges some children and limits the opportunities of others, based on performance in a particular exam. It was therefore largely abandoned across the UK (with some exceptions – such as the area where I grew up). However, the current Conservative government has plans to return to a system of state-run selective schools, which have already attracted a lot of criticism, including within the Conservative party itself (see The Financial Times here, The Huffington Post here – and a defence of the plans reported by The BBC here.).

So what do I have to add to this ongoing debate?

Grammar schools and Special Educational Needs & Disability 

Well, one issue that appears to be totally lacking in government policy and discourse around the reintroduction of grammar schools is any reference to Special Educational Needs and Disability (SEN/D) – both in terms of how a selective education system may unfairly discriminate against SEN/D pupils, and of what grammar schools themselves may actually need to do to meet the needs of SEN/D pupils who meet their entry requirements and become their pupils.

This omission led me to seek out any research or reference to the experiences of people with SEN/D who have been educated in grammar schools, and I couldn’t find any.

So I’ve decided to ‘set the ball rolling’ here, by sharing my own experiences as a pupil with SEN/D who attended a grammar school for my entire secondary education (including Sixth Form). Obviously this is one experience – it is anecdotal and the story it tells is impacted by many factors other than SEN/D, as any personal narrative is. I don’t intend it to be representative of anything other than my personal experience – but I’m writing it in the hope that it will make others think, and perhaps encourage those who are in a position to do so to make the topic a focus of some actual research. It seems like such research might make a contribution to the body of literature that already exists on inclusive education (which mostly, in relation to SEN/D, seems to present this term in opposition to the existence of “Special Schools”) – and that given the apparent direction of travel in education policy, a project focusing on these experiences could be topical and timely.

Grammar school & SEN/D – My Experience 

As I indicated above, the area where I grew up was relatively unusual in that it clung to its grammar schools (and continues to do so now.) This meant that, particularly where we lived, options were extremely limited for children who didn’t pass the entrance exam for one of the grammar schools or who didn’t meet the faith requirements for one of the (Christian) faith schools in the town. So I sat the entrance exam.

And I passed.

It was only once I was there that I began to find out about disability – about my disability. (I should add for clarity, that although on this blog I focus primarily on autism, my personal experience of disability in school was all concerned with physical impairment, as I didn’t receive my autism diagnosis until I was at university as an undergraduate.)

I began to find out – to have the very first, early inklings of disability (though, of course it wasn’t called that) in my first grammar school P.E. lesson. There’s a long conversation to be had about school P.E. (Physical Education) curricula and how they inscribe powerful normative expectations about what bodies should and shouldn’t be capable of, but I’m not going to dwell on that here. It just happens that this was one of the first times that someone (a teacher) observed that I couldn’t move my arms the way everyone else could. There had been other medical situations – doctors thinking my arms were fractured on the basis of x-rays following injury, then deciding they weren’t, physio from birth for congenital muscle contractures etc – but nothing that really made me feel that I was different from others and that there were things I couldn’t do because of this difference – as a child I always thought the “things I couldn’t do” were because I was lazy and wasn’t trying hard enough. I probably expected that if I had something actually wrong with me, then someone would have told me.

Anyway – P.E. – I couldn’t throw a netball – which, of  course, isn’t really a problem except in a situation where everyone else can and where that is what is expected, and demanded by those in authority, at a particular time.

And this – along with lots of other issues and complications that have arisen as I grew and as my conditions progressed, led to a lot of medical attention and to me receiving various diagnoses (the latest of which is about a year old now, and is a result of my body finding new ways to misbehave) and to (rare, complicated) names for  the reasons behind the “things I can’t do” – and the related pain, fatigue and personal issues that arise from an unruly body that doesn’t behave like other bodies and won’t do what it’s told.

Anyway – this hopefully gives a sense of background. I was a grammar school pupil, who became medically diagnosed as being disabled (or – “as having a disability” – I was told I shouldn’t call myself disabled as that made it sound serious and bad.)

There are two implications of the grammar school experience for a student with SEN/D that I’d like to explore. The first is concerned with the idea of being “selected”, and what it can mean for an SEN/D pupil, and the second (that I’ll explore in a subsequent post) is about my experience of actually accessing the SEN/D system as a grammar school pupil.

The meaning & institutional rhetoric of being “selected” 

One of the things that happens as a result of selection – and of being selected – is that it comes with the conferring of status as a “chosen one”. Certainly my experience of this fell into two categories – a) You are lucky to be here, there were around 5 applicants for every place and you have one of them. You must work hard to meet our expectations otherwise you will have wasted this opportunity, that could have been given to someone else, and b) You passed the exam, you are obviously more intelligent than average students, so if you fail to achieve higher than national expectations it will be because you have not worked hard enough (this was actually said in an assembly the day before my year group took its Year 9 SATs tests – by a teacher who was also an exam board marker.)

The implications of this in terms of coercing conformity and individualising failure FOR ANY PUPIL are, I hope, fairly clear. In the context of my emerging disability, they meant that even with a medical name for my condition (albeit one that no one has ever heard of) and a letter from one of the top specialists in the country, I still believed that the fact that I couldn’t keep up with work, and that I was spending hour and hours – all evenings and weekends – on homework (or asleep, I get so incredibly tired) was clearly my fault.

I worked hard (while people were telling me I was working too hard, but not offering any solutions in terms of how else I might keep up), was in constant pain, and probably contributed to the already accelerated wear and tear of my non standard joints. Consequently, I have no idea how much work is “enough” or how much pain is “too much” – this means that although there are accommodations or adjustments available, (even when these have to be fought for, they exist, in theory or in policy at least) –  I can’t accept them because I equate needing them with cheating and being lazy. I’m absolutely sure I could do it if I just tried harder (and accepting where I can’t is quite soul-destroying anyway, without external pressure and stigma).

This needs some further explanation though, because it might possibly be inferred from what I’m explaining here, that I’m suggesting having high expectations of people with disabilities, or encouraging a strong work ethic is wrong. I’m not. But I’d explain the nuance of what I’m describing here by comparing the school rhetoric I’ve described above with what I got from my parents and my upbringing. I was certainly brought up to believe (and was told) that I could probably achieve most things I put my mind to, and was encouraged to try new things and to take opportunities. I was also brought up to feel that education is important (although my family wouldn’t be described as “academic”) and that hard work and commitment are morally good things. The difference though between this upbringing and the school rhetoric is that my upbringing came with a safety net. While being encouraged to aim high, I was never in any doubt that my worth as a person would still be valued, and that I’d still be loved and supported, if I didn’t quite achieve. The encouragement came in a context of unconditional love.

Grammar school rhetoric though can never come in that context of unconditional love.

Certainly my experience was that the school was very aware (and fearful) of its need to prove itself. It took the “top 10%” of children from the area, so it had to be at the top in terms of results, and this meant that it transferred the pressure to its pupils. The problem here though, of course, is that this logic is based on a kind of conveyor belt system that equates effort in with results out. For me though, there was no way to quantify the “effort” of managing chronic pain and fatigue in terms of results (work done, exam results achieved etc.) I think Spoon Theory is a good way of articulating what I’m getting at here – but I’m pretty sure that the problems of this equation (effort in = results out) in relation to grammar schools, and the governmental and social expectations of such schools, means that pupils like me are always going to be problems for them, and consequently that there’s a strong likelihood that, at some times and on some levels, we are going to be made to feel like problems ourselves.

As I’ve suggested before in relation to Mental Health Policy, those who support Theresa May and the current government, and who advocate a widespread return to grammar schools possibly need to be honest in accepting that they are happy for SEN/D pupils (including those, like me, who are “lucky” enough to be the “chosen ones”) to be collateral damage. At least then we’d know what we were fighting against.

Theresa May, Mental Health and Resilience…

This week has seen Theresa May shouting her mouth off about “Mental Health” – Apparently, the problem is stigma, and we all need to talk about our mental health and all will be well with the world (That’s a trap by the way)

I could write for a long time about how utterly offensive I find it for the leader of this government, and this particular party to dare to isolate “mental health” as an individual, personal problem that many of us just happen to have, that occurs in isolation from the socio-political context for which they are directly responsible. I won’t do that – not too much anyway. I’m actually getting quite bored of reviews, and IAPT, and “parity of esteem” and however many shades of “doing nothing while making it look like we’re doing something so that we can shut up those who criticise us and make the rest of society look the other way” they can come up with. Enough already. I’d like my focus here to be a little different.

I’ve read a couple of good things this week too though, which have made me think.

One of those things is this – “The Problem with Resilience” (Written by Linda Gask)

I liked this piece, it made me think. So here, I want to add to the points it raises by sharing my own thoughts and perspective (as a physically disabled autistic woman with “psychiatric co-morbidity”). So then –

Resilience

I’m glad people are challenging the use of the word “resilience” (as in the article above), because to be honest, this word (and its synonyms) feel like a stick that has been used to beat me with for most of my life. The labels that have followed me around – “over-sensitive”, “anxious”, “depressed”, “ill”, “emotionally labile”, “autistic” “psychiatric co-morbidity” (for goodness’ sake), – or, as I’d often describe myself, “off my fucking head”, are all often taken to mean someone who is not “resilient”. Someone who, according to the standards of the world, spends periods of time “not coping”. The consequences of this are advice along the lines of “look on the bright side”, “put it out of your mind”, “toughen up”, “think of others worse off than you”, or … the worst, the dreaded recommendation of “mindfulness” and “therapy”.

And according to any objective standards of the world, that’s all quite accurate. Objectively, I’m physically fine most of the time. I’m not in a war zone, I’m not starving, I’m not experiencing domestic violence, I have a fairly regular income, a great family and am in a particularly loving relationship. Objectively I’m safe. Objectively things are good. Objectively I should be able to cope, and my frequent failures to do so must indicate lack of resilience (and a lot of other bad things and moral failings too). But this objectivity is not the sum total of my truth.

My reality is often a racing mind of tumbling confusion that goes so fast I can’t hold onto it. That just won’t keep still. It’s spiralling screaming of internal monologue telling me everything that’s dreadful and wrong and horrid. It’s (really, actually, truly, and quite distressingly) not being able to go near the oven in case I accidentally cook the cat. It’s really believing I might have cooked the cat. It’s repeatedly checking I haven’t cooked the cat. It’s getting other people to check I haven’t cooked the cat…  It’s not daring to move because I might hurt someone. It’s being doubled up on my bed unable to move because anxiety can be literally crippling. It’s trying to hold a coherent conversation while blocking out the disgusting, violent images that accompany my intrusive thoughts (in my case I mostly know these aren’t real – I know some people don’t, but they seem real, and they’re distressing, and trying to ignore them and concentrate takes work). It’s wanting to be alone because people hurt, but being terrified of being alone because I don’t trust my own thoughts. It’s knowing that my loved ones are about to die horribly. It’s screaming and hitting myself because there are just no words anymore. I can’t escape my own mind, even when it’s the enemy.

My reality is walking down a street, or sitting talking to someone while my body is telling me (my reality) that I’m about to be hit by a train. It’s permanent fight or flight. It’s stomach churning sickness. It’s being expected to “just email someone” or “just phone someone” when actually that “just” involves putting my head in the jaws of a lion. It’s being totally terrified and out of control because a train is delayed, and then being exposed and vulnerable because “being totally terrified” makes me do odd things like moan, rock and hit myself. It’s being asked if I’m “alright”, and just not having the words because the person asking is just nowhere near my reality, and probably doesn’t want to be.

It’s feeling a bit better. Feeling like the sun’s come out. But knowing it won’t last. It never has lasted.

I don’t deny that these are problems. They are. It’s not fun. They’re part of who I am – for whatever reason – clinical genetics, neurological abnormalities, “environmental factors “ – whatever. They’re part of who I am. But I have to say – managing them makes me feel pretty damn resilient. I’m still here, and I achieve (sometimes not everything I’m supposed to achieve by objective standards – sometimes not everything I want to achieve) But I manage.

The thing that angers me though, is the political context of my personal experiences (back to Theresa May. Well, not totally.) Before the things I’ve described above acquired their clinical labels, and gave me the words for my “psycho-social disabilities”, my diagnoses related to physical disabilities. This meant that the advocacy and campaigning that was fought on my behalf was for equipment and adjustments for me to be able to access my physical (educational) environment on the same basis as my peers. My disability politics were framed around the Social Model (with various adjustments as I’ve gone along) – but the idea that the environment was disabling, and that adjustments to enable participation were my right felt like it was established, even if it was ignored by many, and made me doubt for myself whether I was truly deserving of such adjustments and accommodations.

The trouble is though, that I just don’t experience much of that for my “psychiatric co-morbidity”/psycho-social disability (elements of which I’ve described above). For these, I’m offered medication (can be useful, but still carries the expectation that I’ll fix myself and become socially acceptable – and stop causing others problems by talking about my weirdness), or therapy (which translates as “fix yourself” – or “allow a professional to fix you”, and results in self-blame when it fails to work).

I’ve been trying all that stuff for years though, and I’m still not “fixed”.

And I wonder how long a wheelchair user would be expected to persevere with physiotherapy and rehabilitation before they were allowed a ramp to enter their workplace?

The problem is, that as I think about it, the equivalent of a ramp – the situation  that would feel like true equality (or “parity of esteem”), that would honour my resilience and respect the “work” that becoming and staying well can sometimes take, and that would represent a true challenge of ableist oppression and the pursuit of a truly just world, would involve acknowledgement of the fact that for some of us, at some times (often and repeatedly and as a core, ongoing part of our lives), “resilience” might look like getting out of bed and having a shower. It might look like making a cheese sandwich, or summoning every ounce of strength and courage that you have and walking 100 meters to the post box. It might involve getting from one end of the day to the next, and managing to find the ability to sleep in the midst of the screaming and hopeless crying. It might involve still being alive.

I hate wanting to feel good for having “managed through a bad day” and wanting to celebrate what, to me, feel like huge victories (I cooked dinner, I made the phone call, I looked at the mail, I checked my bank account, I ate in front of strangers), but rather than feeling good, beating myself up because of all the “proper” things I haven’t done because I was busy directing all my efforts at coping with what was in my head.

Shall we think though about what this “true equality” might mean for our society? This society tells us that we’re the problem, because to suggest otherwise would involve contemplating social change and a fundamental challenge to “how things are” (according to neoliberal, capitalist orthodoxies). So unless Theresa May is taking on such a challenge and working to address it (I don’t think she is), then she accepts that people like me (and people who experience this injustice far more extremely than I do) are collateral damage. She accepts that society makes us into personal failures and lets us live on a knife-edge.

Okay – but can we please stop dressing it up as concern for “mental health” or as “challenging stigma”? It’s not. It’s protecting the status quo and keeping things comfortable for those who aren’t falling apart, while causing more and more of us to fall apart, and then blaming us when we do – Conservative Capitalism’s Cannon Fodder.

It’s brutal, oppressive and unjust. Let’s not pretend otherwise.

#autisticsinacademia – A Hashtag is Born!

Just over a week ago (on 26th December 2016), I started a hashtag – #autisticsinacademia

It was just an idle tweet in reply to something that someone said to me, but it has become something that is working to put autistic people involved in academia in touch with each other, to enable us to share our successes and frustrations, and to help us to be visible in, and contribute to the wider world of academia on Twitter.

It’s a fun thing, and it’s good to feel connected.

I’ve made a Storify (that you should see here) – Firstly to collect together some of the tweets that have appeared so far on the hashtag, and secondly to show what we can achieve through Twitter in terms of connection, networking and activism.

Enjoy the Storify, check out the hashtag – and join in the conversation!

#autisticsinacademia

Disability Politics & Internalised Ableism: Reaching for the Stars with Boots made of Lead.

I’ve been thinking a lot recently about my first experiences of “becoming disabled” (those words are in quotation marks to reflect the fact that although the genetic, physical, psycho-social causes of my impairments have been with me since before I was born, the social “becoming” part was triggered and shaped at various points, predominantly in my teens, and is strongly related to moments of diagnosis. and interaction with medical/educational/psychological/psychiatric and disability-specific employment services.)

I’ve been thinking about this, and how it has been connected with my positioning myself as “disabled” politically, and in terms of advocacy/activism – and some of the things I’ve done as a result of this (NGO research jobs, advocacy/volunteering, event organizing, training and awareness-raising, “support” groups, protests, petitions, angry letters, social media activism).

I don’t really know why I headed in this direction when other disabled people don’t identify in this way, and don’t take this route (I’m not criticizing others who think/act differently in relation to their identities – they’re as entitled to shape and define themselves as I am – I hate it when people criticize how I position myself, and there are other areas of my life that I choose not to politicize because they’re too painful, or because they’re not only my story to tell, so I’m not about to start criticizing others.) I suppose for me though, my way of seeing/doing/being is influenced by the ways in which others fought for me as a child/teenager, as well as having a strong and interesting political and Christian family background (although reconciling my disability politics with my other politics isn’t always easy – others have written on intersectionality and leftwing activism, and they make some good points about ableism in these physical spaces and discourses.)

One of the things I’ve been thinking about though, is how easy it is for us to be influenced (and limited) by the very things (arguments, systems, policies) we’re fighting against.

I’ve spent a large proportion of my life being concerned with disability rights, mostly as the only disabled-identifying person surrounded by allies who care about rights but are not themselves disabled. The thing is though, that in my experience, when we actually have that disabled identity, we generally also have battle scars and war stories about how we’ve had to fight for our own rights (or had others do that for/with us). And in those situations, we tend to hear and be exposed to a lot of arguments about why (seemingly very well-meaning) people just can’t “meet our needs” or “enforce our rights” – Why it might not be fair, but what can we expect? That’s just how it is.

A few of the things I’ve experienced/heard/internalised in relation to myself are:

  • “She can’t do that course, she wouldn’t be up to it”
  • “She can’t have the equipment she needs – You’re just asking because it’s trendy”
  • “Need evidence … need to prove your case”
  • “She can’t have support, there’s no budget”
  • “She’ll pass anyway, can’t expect support just to get higher grades”
  • “Too old for support, but we can possibly bend the rules if we’re lucky”
  • “Not sure if we can accommodate you here”
  • “You have to meet us halfway – be realistic”
  • “It’s like that for everyone. You’ll be fine if you keep trying”
  • “She’ll grow out of it”
  • “You won’t get this amount of help in sixth form/university/ the “real world”
  • “You had adjustments when you took your exams. Your qualifications don’t count the same.”
  • “Disability law is different from other discrimination law because disabled people need reasonable adjustments.”
  • “It’s a shame you can’t access the event where you’ve been invited to give a talk about your work in disability, but unfortunately this is the room that has been booked.” (a local authority)
  • “If the conference is too much for you, don’t come.” (a line manager)
  • “We want you on this committee but can’t change the meeting format to meet your individual needs” (a disability organization).
  • “…medical report to set out what we have to do to meet our basic legal obligations” (a disability charity employer)
  • “That’s because you have autism”
  • “I can’t do a PhD. Autistic people can’t do PhDs”
  • “I can’t have relationships, I’ll never get married. Autistic people can’t/don’t do that.”
  • “Yes, community support might keep people out of hospital, but if they go into hospital they’re funded by the NHS, which saves our local authority funding” (a local authority service manager)
  • “People with chronic anxiety don’t belong in teaching jobs”
  • “Students’ needs come first”
  • “You need to provide medical evidence of your fitness to teach”
  • “Can’t expect everyone to care about something so niche. What’s the universal appeal?” (a university)
  • “You won’t be taken seriously if you act like a single-issue lobbyist.”
  • “Policy is more than just activism”

(N.B. I know these are little things, they’re the ones I feel comfortable disclosing here. I have limits. But also, I’m not trying to play Oppression Olympics or Tyranny Top Trumps – these little experiences drive me to care about the big experiences. It’s not a competition.)

And I think this is something tough to fight against if our hopes and dreams for disability politics are centred on a vision of liberation and equality that takes into account (and, dare I say it, celebrates) our differences – while not using them as an excuse for our oppression. If we’re not careful, we end up actually believing that we’re “lesser” – that people are well-meaning, but society is just organized as it is, and we can’t possibly expect it to change just for us. We can end up arguing from a really weak, instrumentalised position for “better services” and “therapy” – and limiting what we “ask for” because deep down we know that we’re not proper people and we’re just not worth it. Too difficult. Too expensive.

Internalised ableism is something we need to be aware of if we’re acting politically as disabled people. In my opinion, it should NEVER stop us from campaigning, protesting, organizing and telling our stories in whatever ways are available and safe for us (we don’t need to wait to be “fixed” and liberated from our internalized oppression before we try to fight it) but we need to be aware of it, and see it for what it is. When things are done to us, and said to us, and done and said about us, this has an effect. It becomes part of us – it’s bound to. But if we want to work politically I think we can be aware of it without caving in – in the same way that we’re aware of, and respond to physical pain as a symptom – and maybe work WITH it for change.

There will be compromises. We won’t always get what we want. And we won’t be universally agreed with (if everyone agreed, there’d probably be no need for the social change we believe in). But if we begin by framing our activism from a position of compromise we’ve lost before we begin (I’m looking at national disability charities here.)

If we aim for the stars, we might just make it to the moon.

  •  I still feel I’m not a proper person (certainly not a proper woman).
  • I still feel like I’m just an individual failure who shouldn’t expect the world to change just for her.
  • I still feel like I don’t belong, and that I shouldn’t expect to.
  • I still feel like a fraud.
  • I still think/feel/know deep down that there are things I’ll never be able to do.
  • I still worry in case my politics are part of a delusional pathology – or an excuse for my own personal failings.
  • I still worry about costing money if I need adjustments, or when I need to access medical services because of my disabilities.
  • I know that I challenge institutional and societal expectations, and sometimes put others in difficult positions because of this.
  • I still feel like a problem.

Those feelings, that I guess many of us share, don’t go away. No amount of personal therapy is going to fix an unjust world.

But they should never be allowed to dictate and control our activism and our advocacy.

I can’t pretend to have all the answers. I don’t know what we’re heading for.

I just can’t imagine not feeling on some level “less than” – but I don’t think I have to. I don’t think I have to have the “bigger picture” – in fact, I think the expectation of having all the answers is another thing that’s used to keep us quiet (I don’t think those who control the systems against which we struggle have all the answers – they just have power, by which here I mean less of a requirement to account for, and explain themselves.)

It’s one battle at a time, one day at a time. Not having all the answers isn’t going to make me stay quiet.

“If you don’t ask, you don’t get” and, not that I think I should have to “ask” to be equal, I’m going to keep on keeping on even if I don’t really, fully believe that I deserve it – because it’s precisely that feeling of not deserving that I want to stop others like me feeling in the future.

Funny really – it’s totally about me, and it’s not about me at all!

 

Guest Post: Autism, Schools & Unconditional Positive Regard (The Perspective of an Educational Psychologist)

I’m delighted to be able to host this guest blog from an Educational Psychologist with whom I’ve been in contact, who wishes to share their observations and perspective about the experiences of some autistic children they encounter in their professional practice.

This is a much-needed, important perspective and I’m privileged to be able to share it.

(I am also very happy to consider hosting other guest-posts from people who have a view to share about autism or any of the other social and political themes that fit within the scope of my blog. If you want to share something and need a platform, please feel free to get in touch – either via this blog, or via Twitter @aspiewithqs)


 

There’s a well known psychological theory by Carl Rogers called Unconditional Positive Regard (UPR). It refers to accepting and valuing someone as a person no matter what they say or do. Everyone has their own inner resources with which to help themselves, given the right support and environment.

I’m reminded of Unconditional Positive Regard often in my role as an educational psychologist. This is because I don’t see enough of it in schools. I’m not blaming teachers. From the very top down, education in the UK has become far too conditional.

Ever increasing demands of government targets and decreasing resources have meant that children who don’t meet the conditions of “normality” are seen as peripheral, and it’s usually those with challenging behaviour who fare worst.

Autistic children require flexibility and adaptations in mainstream schools to ensure they are happy and able to learn. Without this support they experience sensory-overload and anxiety, which can be internalised, or externalised through expressed aggressive behaviour.

In my career in education I’ve noticed that school staff have become much better at recognising autism (albeit in boys) but in some cases less willing to support. In my view this isn’t just due to lack of resources. It can be attitudinal.

Too often I see rigid expectations that autistic children have to fit into. Rogerian ‘right support and environment’ is dismissed. Don’t get me wrong, I’ve seen lots of excellent practice, but also some bad, and this often occurs with the anxiety associated with a poor inspection. With the best of intentions of child-centred education, when there’s an emphasis on improving the overall results of a school at the cost of everything else, Unconditional Positive Regard disappears into the ether.

When I started teaching over two decades ago exclusions were extremely rare in primary schools. The shameful, unlawful practice of putting children on so-called part-time timetables was unheard of. Sadly, it has become seen as inevitable for some, disingenuously described as “support”. When asked what strategies are in place already it has been glibly reported “We’ve put him on a part-time timetable so he doesn’t fail”.

Sending a child home is NOT an intervention. It’s giving up on them. For an autistic child at their greatest time of need this is the worst thing that can happen. It gives a clear message; you don’t belong here and may only come back if you meet our conditions. The problem is, this is unachievable without the ‘right support and environment’.

A teacher who is prepared to be flexible, hold an autistic child in their thoughts and anticipate potential stressors can do a great deal for inclusion. When things go wrong for a child this should be seen as a learning opportunity, not just for the child but also school and teacher by reflecting on which unmet need the behaviour was communicating. I’ve always thought from my early days in training to be an EP that unconditional positive regard is bountiful in schools where this way of understanding behaviour is the norm. It’s a progression which enables a child to accepted and valued regardless of what they say or do. Full time Teaching Assistant support won’t help unless these values are espoused throughout a school from strong leadership.

Data are inconclusive because part-time timetables aren’t formally recorded, but research by charities suggests that there’s a high proportion of autistic children receiving exclusions in the UK. The tragedy here is that when schools actively listen to parents it’s not that difficult to understand triggers for behaviour. These can be anticipated during the school day and measures taken to minimise the likelihood of a child being exposed to them. Sometimes it can be something as simple as letting the child leave school five minutes early to avoid sensory-overload at home time, or allowing them to eat their lunch in a quiet room. These may appear trivial in the grand scheme of things in school, but parents report how much the little things can make a huge difference to their child’s emotional state at home.

I studied Carl Rogers as an undergraduate and it continues to inform my thinking in education. I was trained as a child-centred teacher. I taught in schools where, if a child was sent to a special school, teachers were disappointed and felt that they had failed that child. I do see this sentiment with teachers I work with now, but it varies enormously from school to school. For some, getting a child into special school is seen as a first resort and massively overdue, even if they are capable of achieving in a mainstream setting. Minimal efforts are made to help them remain, and I’m increasingly noticing this with autistic children. Unconditional Positive Regard, a given for all children when I started teaching, is now sometimes seen as a luxury.

 

Why I struggle with the “Search for my True Autistic Self”

The subject of autism diagnosis in later life is big news currently. It’s something we discuss a lot among ourselves, and is increasingly the focus of attention outside of the autistic/autism communities.

Such accounts are typically framed in terms that are becoming firmly fixed in discourses among autistic people – suggesting that diagnosis confers “self understanding”, and “identity” and explains who we are as individuals. There is also the suggestion that this “self-discovery” links us with others who are similar to us, though this is generally articulated in terms of the individual comfort one can take in recognising that others too are involved in such journeys of “self understanding” and “self discovery”. It is apparently comforting to the individual to know that there are others who are similar to oneself, and are similarly bruised and broken by a world that doesn’t understand and recognise our “self”

Flowing from this comes a search for the “true” autistic self. The self that we could apparently have been, if our autism had been recognised earlier and we’d been allowed to grow up as our “true” autistic selves, free from the pressure to conform as “fake neurotypicals” (a goal that seems to disregard the rather obvious social fact that upon diagnosis, our autistic selves, far from being allowed to express themselves, are oppressed and stigmatised as autistic. I’m unclear about what early diagnosis would do to eradicate this).

And I have real problems with this idea of “true” autistic self. I recognise that it is important for some people, but for me, I don’t think I have one. I am not just “autistic”, I am “autistic in the world” – I always have been, and I always would have been, regardless of when I received my diagnosis. But I also find focus on the search for “true” autistic self politically very problematic. I don’t just think it’s an illusive, ultimately fruitless, but essentially benign quest. I think it’s potentially quite distracting and harmful, so I’m going to try to argue here why I think this is the case. I have two points to make.

Firstly then:

It ignores the work that goes into making an identity – and thereby psychologises, individualises and depoliticises us

One of the things about our understanding of autism, that I think arises from the control that psychology, that the DSM/ICD and that diagnosis have on it, is that it is often seen as something “natural” that we “can’t help”. It is supposedly based on observation of our “natural behaviour” and on our (and often our loved ones’) self-report of the same. My own psychological reports say that I would probably outgrow my diagnosis as I learned to adapt – as I learned coping strategies. This was intended to give me (or possibly my loved ones) hope. It was written from a perspective that sees Asperger syndrome as a diagnosis, as a deficit, as a Bad Thing that makes my life worse and from which I would (should?) hope to be released.

In terms of identity, this sort of explanation is extremely troubling. It suggests that a fundamental part of who I am is problematic, and something from which I would seek to separate myself (as one does with “sickness”). And the temptation, in response to such trouble, is to argue back in precisely the terms of “natural” and “can’t help it” – is to point out all the ways in which I am still observably autistic in terms of my “natural behaviour”. This is tempting, and feels important because any suggestion of “doing being autistic” would be understood in terms of “faking” or “putting it on.” So if I want to keep the identity – I have to argue in the very terms of psychology under which I was diagnosed. I have to play psychology at its own game that defines autism as externally observable, “natural” and “can’t help it” diagnosis. Anything else risks the diagnosis – risks my identity.

But this denies me any agency in shaping my identity. It makes me powerless. It doesn’t allow for my own political position, which is to argue that although my genetic profile, and my clinical and social history would suggest that I was born autistic – that I actually get some choice in how I deal with this in my everyday life. I make choices about my autism in a way that is disallowed by the language of psychology – of diagnosis, of “natural” and of “can’t help it”. I make decisions about when and how I “come out” as autistic – I make decisions to put myself in situations where I may have a “meltdown” or a “shutdown” – I make decisions about whether to wear my headphones in public (the sort of thing that can get one accused of “faking” if one sometimes chooses to bear a situation that is almost intolerable so as not to look different or odd, and sometimes chooses to go with different or odd rather than horrific and painful) – I make decisions about whether to flap my arms in public when I’m excited (which feels good but looks odd) or to sit on my hands and internalise the flapping impulse (which is exhausting and sometimes dislocates my wrists).

I also make the daily decision that my autism is a political thing. It isn’t something I routinely suffer silently in shame and individual isolation (though sometimes I do). It is a community of which I’m part and is a way in which I understand the politics of difference and oppression – and it gives me a commitment to social justice and to trying to understand the oppression of others (while recognising absolutely that their own experience of oppressed identity is as special and different as mine.)

This is the work of “doing” identity that is not accounted for in the language of “true” autistic identity – and the language of “true” autistic identity actually plays into the world of psychology, of diagnosis, of observable and “natural” and “can’t help it” that I’ve tried to show challenges my construction of my autism as a political and politicised identity. The search for “true” autism identity, to my mind, therefore gives too much power to psychology to label and control autism, and to locate it as something in the individual that they “can’t help”. It is depoliticising and therefore, to me, unhelpful.

It fails to challenge neurotypical oppression and is politically unhelpful

Going further and expanding on the political nature of autistic identity as I see it, I don’t think that a quest for “true” autistic identity has any place in my autism politics. For myself, I reject the idea that I have a “true” autistic identity that is waiting to be discovered beneath a surface of learned/imposed neurotypicality. I am me. I am autistic. I interact with the world on a daily basis. I’m part of the world, and I have been from the day of my birth. Certain parts of me are accepted by the world, and parts of me are rejected and ridiculed by the world. But they are all “me in the world”. My focus is on changing the world so that those parts of me (and others) that are currently rejected and ridiculed might be understood, accepted, embraced and made use of. The search for a “true” autistic identity plays no part in this.

Jim Sinclair was emphatic years ago, when they wrote their powerful statement, “Don’t Mourn for Us” (which I wrote about here) that as autistics, we are not typical people trapped in a shell. There is no “normal” person trapped inside us waiting to be released. This is a strong political argument against autistic “conversion therapies”, ABA and other attempts at “cure” – in the sense that there is nothing inside the “shell” waiting to be cured!

But I’d develop this argument by saying that just as I’m not a neurotypical person trapped, awaiting release by a benevolent, expert (neurotypical) therapist, I’m also not a “true” autistic buried under layers of neurotypicality. What I am, is an autistic person who has lived since the day she was born in a world of neurotypical oppression. My identity has been constructed, produced and is reproduced on a daily basis in the context of this oppression.

This construction is a shifting, developing process of molding and sculpting rather than a suffocating process of layering and burying. What we talk of as “passing” or “camouflaging” may feel like specifically autistic work of “burying our true autistic selves” – but what I’d argue it actually is, is the work of “doing identity” (which people – autistic or not –  do in lots of ways – the words we use, the clothes we wear, the people we have sex with…). The important part of “doing autistic identity” is that certain parts of our “doing identity” are currently seen as socially unacceptable and oppressed (as they are for other marginalised, stigmatised identities that fall short of society’s demands and expectations.)

The oppression is the thing I want to change, and the search for a buried (fictional) “true” autistic identity distracts me from this. Searching for it (even if I thought it existed, which I don’t) is not helpful to my political agenda, and is therefore not something on which I want to concentrate my energy, my attention and my efforts.

And that’s why I personally struggle with “true” autistic identity.

Frustration, shame … and doing stuff anyway…

I’m writing this because I have important things to do just now, and negative thinking is getting in the way and slowing me down. Writing here is a way of externalising things – “getting it off my chest”, if you like, so I can get on with being productive. So I’m going to describe the “problem” before trying to explain what might be done about it (With it? Because of it?)

Saying the “Unsayable” 

I’m also writing because a lot of the things I’m thinking are things that I feel I’m not supposed to think  – Things where a commitment to “autistic pride” and to “identity” and ideals like that come up against … What? I don’t know – Self-hate? Disgust? Internalised ableism? A desire for an easier life? It’s really hard to be a person who cares deeply about autistic community, about identity, about rights … and at the same time, to sometimes really, really wish I were – could be – could make myself – normal (socially acceptable). Or alternatively possibly just accept that I’m pathological, that there really is something individually wrong with me – shut up, accept that I’m “less than” and keep chasing specialist therapy to fix me.

Arguing that there’s “nothing wrong with me” but that “the world hurts” feels audacious sometimes.

It feels like if you’re in a minority of any kind you have to adopt a position and stick to it – and any ambivalence is “letting the side down” – but life is never so one-sided, right? Sometimes it seems you can think one thing, and really believe it to your core, but life and the world get in the way, and make that position awkward, challenging … indefensible? (Well, no, obviously not. Definitely not.)

Frustration

Basically – the situation (the problem?) just now is that I’m so, so bored of being “different”. I’m bored of thinking. I’m bored of over-thinking. I’m bored of thinking about thirteen different things at once and all with such burning intensity that it hurts. Sometimes this kind of thinking is brilliant – it’s exhilarating and electric. But other times (like now) it’s overwhelming and self-defeating. It’s spaghetti-mess rather than straight lines.

I’m bored of the fear I have of other people, and of having to interact with them – fear of going to social spaces, in case I have to do conversation and I get it wrong because I just don’t know what I’m supposed to do. I’m bored of not understanding people. I’m bored of feeling like they don’t understand me. I’m bored of feeling terrified and then of beating myself up again and again – analysing, and analysing, worrying and worrying, because I feel like I’ve got it wrong again – I don’t know the rules, and even at times when I DO know the rules, other people don’t stick to them, so how am I meant to know what’s right in that particular moment? It’s frustrating and unfair to have to play a game day in day out where the rules constantly shift and no one tells you.

It’s like wearing a social blindfold  – and it’s made worse by the fact that just sometimes I actually DO get to connect with people in a way that feels like “being myself” – and it’s meaningful and enjoyable and stimulating and productive – and it makes the rest of the time seem so bloody vanilla, and at the same time … so emotionally expensive … so EXHAUSTING.

I’m bored of feeling like I have to hide. I’m bored of being angry because I feel like I have to hide. I’m bored of worrying because I’m not doing a good job of hiding.

 

Shame

But also, I feel quite ashamed –

I’m pretty ashamed of myself because of how weird I am. Because of a lot of the things about me that get labelled “autism” (But how does that work, for a “proud autistic”?)

But I’m mostly ashamed because there’s so incomprehensibly much in the world that needs changing. For autistic people who have much worse lives than I do, and for lots and lots and lots of other people oppressed by the world.

I’m ashamed of reading so many other people worrying about “disclosing” their autism, and saying “that’s crap, I feel it too” – but what am I actually doing to challenge that state of affairs? And workplace discrimination, and unemployment, and abuse, stigma, bleach “cures” … (and that’s just the “autism world”) What am I doing about that? Feels like nothing.

Feels like nothing I do will ever be enough. If my stupid brain would only work better…If I could just get over myself – get over being so bloody scared … I’d be so much more useful.

And I feel ashamed of wasting time – you can call it “relaxing”, or “self-care” or “wellbeing” or whatever, but how is that ever okay when there’s so much to do? But then I get tired or tangled, and I have to stop working – and I feel ashamed of wasting time.

And I actually don’t like it (it makes me really, really uncomfortable) when people say I do a good job at stuff, because it’s not enough, it’ll never be enough. I could always do more.

Those are the Bad Thoughts anyway, but enough of all that…

 

The Good News

That bit sounded negative, selfish, self-indulgent. I accept that. I’m not proud of any of the above. I don’t aim to justify it. (I’ve been writing and re-reading the above, and thinking “oh for goodness’ sake, get a GRIP, woman.”)

But I needed to be honest, and “real” about how I feel sometimes. I needed to do this, because I think if we’re not honest like this, we give others (I mean mainly other autistics in this case) the false impression that we are totally comfortable with our identity, that we fight against the world, but never question ourselves. And this pervades all of our advocacy. I’ve read powerful writing myself, and thought “that’s exactly the kind of autistic person I want to be” or “that’s what I want to say”but then ended up feeling that I could never be that good because I’m so scared, and I doubt myself so much, and my brain is just so flipping inefficient and tangled.

So being “real” matters – the good, the bad and the ugly.

Because all of these tangles and all of this confusion, and all of this exhausting, infuriating intensity are who I am. And that means that they are part of my successes, as well as my failures.

  • They’re part of me when I write a blog post that helps another person to communicate a little of their own world that they see painted in my words.
  • They’re part of me when I manage to survive a social space even though I’m terrified – and make a contribution that was mine, that no one else could have made, or thought to make.
  • They’re part of me when I deal with worries and uncertainties by having ideas, by planning and by making ordered impact out of the chaos – ideas and plans that other people might miss because they’re never uncomfortable enough to have to think like that, or because they’re not focused enough to keep thinking about an issue until they get an idea out of it.

We can do stuff – when we feel broken and weird and damaged – even if for that one day, the only thing we can do is survive – we can do stuff. We can use who we are and what we have to work together.

I reckon we might be stronger than we know.

We may be messed up, but we can do stuff. And we have to, we absolutely have to – there’s so, so much to do.

Onward.