Letter from the North Fri 4-Aug-2017
A different way of thinking
On Monday Teresa got the results of her Counselling Diploma course – she passed (of course) which means she is now qualified to practice as a therapeutic counsellor. I was pleased for her but it was also hard for me because I studied alongside her for all but the last few months when I had to leave. As a result I didn’t display to Teresa the joy she had every right to expect ???? . It is on that thought I’d like to write today. Not me not being supportive although that does need writing about, but about me, well it would be about me, that’s one of the battles with autism I have every day, I know it’s not always about me, but it’s hard to see that.
Reflecting on my recent experiences in adult education, it is interesting to think about other people’s expectations and understanding of what it takes for an autistic to undertake any sort of education. I’m talking about adult education here, as my knowledge of school is somewhat out of date, except as a parent.
I have tried to describe in the ‘Warwick’ letters what ordinary day-to-day life is like for me, but work, learning and other formal environments carry with them a whole additional set of problems.
All autistics are different and this is my story, but there is often a lot of overlap between us and so my insights and observations may also be relevant to others on the spectrum and in other parts of the education system.
I don’t know how much issue people had with my gender, it may or may not have affected some of how they reacted to me, I don’t know know how much of my height, weight, skin colour and race affected people.
But, it was very clear that one of my issues was around communication.
Temple Grandin, who is primarily a visual thinker discussed 3 styles of thinking that people may use, usually elements of all three. I (may) have mentioned this before, but quickly:
- words – verbal
- pictures – visual
- patterns – maths
I am a ‘pattern thinker’ (and nothing else, no visual or verbal for me). So, I have to translate into and out of words – and most courses nowadays are about words (even the technical ones). This means I am not only disadvantaged in terms of the amount of effort I have to use just to cope with the required level of translation, I am am also discriminated against because teachers (educators in general) by the nature of their profession use words, they have an inbuilt bias that words are key. Even when they understand autism, their understanding is that many autistic are better with pictures. However an understanding that you can do neither but still want to take part in mainstream (as opposed to special needs) education is a tough sell.
When I was at school and indeed University, science based subjects were examined based on technical rather than literary content. That is essays didn’t exist for things like maths, physics, chemistry, …, that made life easy for me in those subjects. I understand there has been a major shift in education and now essays are common across the board. That emphasis on words and not facts, means people like me are at a disadvantage. Even if I thought in language, processing delays would still limit the instant call/response that occurs in a classroom. In that sense, the OU (Open University in the UK) had it right for me. I studied sociology with them and, because it was distance learning, I was assessed on my writing, but I had time to formulate my writing. It may have been more difficult and a lot more time consuming than for most people, but I wasn’t being judged on the process I used to arrive at the final set of words I was being tested on, just on the final result.
Counselling being a words (talking) therapy, tutors seem, to me, to assume that a particular sort of facility with language is dis-proportionally important in the learning process. Somewhat forgetting that the “talking” in talking therapies is the client not the therapist! In addition, the obsession with “portfolios” (writing) as proof of learning is a particular obstacle for me and it seems to be an increasingly common tool in a number of areas of adult education.
In my day-to-day experience of life, language based communication is not that easy. I have to ‘lie’; that is, present an image of fluency and quick response that is not real, but based on patterns of communicating I have learnt. It’s not fair or ideal, but it’s necessary for me to function at work and play. When you see a quick response in me, what actually happens is that I have worked out in advance what I would say in response to that conversation and since I have that response ready prepared I can just let it out seeming to be taking part if a fluid exchange. Sometimes it’s not quite a perfect fit and comes across as somewhat clunky. But, it’s the best tool I have – and it caused me no end of grief on that counselling course!
Which brings me back to a recent letter when I discussed diagnosis and particularly why? Diagnosis frequently crops up and is “needed” in education, primarily to force someone to provide support for your difference.
It is the impact of this idea that I wanted to explore in this letter.
The solution offered (for people like me) is invariably ‘reasonable adjustments’. A pejorative phrase if there ever was one. I don’t need adjustments from what you think is right for everyone. Who gave you the right to decide what is ‘normal’ and who isn’t and therefore needs adjustment? Why are you the arbitrator of reasonable?
I need what is right for me. He/she/they need what’s right for them, we are ALL individuals, you really cannot assign ‘need’ using labels. Trust me, autistics are no more alike to one another than NTs, men, women, the English, French or Americans, …
I have been given ‘reasonable adjustments. It was a very subjective term. There was a pre-prepared list of what was reasonable. Reasonable in this context seems to mean what an “expert” feels to be reasonable, not what the autistic does. In teaching and exams (which have different problems for me), the phrase ‘reasonable adjustment’ is used as the solution to all difference/diversity (but usually called a disability, I reject that word). A hammer is a reasonable tool, it works well for a number of applications, but it’s a useless for repairing clothes. The right tool (‘adjustment’) for that person in those circumstances should be the answer but I am afraid it isn’t, laws don’t work that way.
Teresa tells me these letters are getting “angrier”, she may well be right, but what I think is happening is that the closer I get to the injustice of how I find myself treated, the more I realise how unacceptable it is and being “nice”, “tolerant” and the effort I put into understanding the problems NT have with me is masking the lack of effort put in by NT’s to understand my problems and a lack of fairness and balance does make me angry,
Whilst I have been talking about autism, this problem, of diversity and how society deals with it, crops up in all sorts of areas:
Whilst I avoid the diagnosis word, I do have experience of a number of areas of diversity where a “diagnosis” could potentially be to my advantage:
- I am in my 60’s – age.
- I use a stick – a physical disability.
- I am complex gendered, which for most people is the same as transgender..
- I am autistic.
All these (and many more) are areas where there are laws against discrimination and in some cases reasonable adjustments are required in areas of work, education and indeed in society at large.
There are two problems here, the first is that “diagnosis” word, that is you need to be marked out as broken in some way. Broken in this case means “not like us”.
The second is that I know from experience and observation that unless an individual or organisation is really not very aware, they can discriminate as much as they like so long as they use the right sort of words. (See this article and this on ‘cultural fit’, they illustrate a common ways of discriminating but not breaking the law).
‘Sorry you didn’t get the job, your profile wasn’t a good match for our company’, instead of:
- you are too old,
- we don’t like men in frocks,
- we don’t like unusual needs (aka autistics)
- never mind race, gender and religion!
The law protects at a gross level but in reality, at an individual level, it’s about people and unfortunately there are nice people and nasty people and if you come across a nasty one, then the law and diagnosis/labels are of little use. I use the word ‘nasty’ in a Bean way, it is a sense rather than a definition, ‘nasty’ can be deliberate or accidental, it can seem to others as ‘nothing to make a fuss about’ yet for me it can be (and has been) devastating.
And that’s the problem at school (college or whatever) or at work, what do you do?
- Fake it and hide it completely so they never know you are ASD, gender diverse, … The problem is that it’s fantastically hard work and stressful and in some cases (e.g. race, physical disability, …) impossible.
- You compromise and trust they will compromise too – they often don’t because, especially if they see that when you compromise, you are demonstrating your understanding of their need for you to be reasonable and accept their ways are the right ways.
- You insist on your rights under the law – good luck with those reasonable adjustments and discrimination claims.
It is my experience that the best way to succeed is 1). 3) rarely works and 2) is a lottery. The problem for me is that I cannot accept 1) as an option despite it being the easiest way to achieve what I want. Indeed I have followed option 1) for most of my life, but in recent years I have rejected it as I have come to realise how hiding who I really am reinforces other peoples’ perception that they don’t need to change because there isn’t really a problem.
I wish I lived in a world where give and take works. I am lucky, it (mostly) does in my work place and community, however I have also experienced just how difficult it can be in a place where that is not the case.
I wish I had an answer, I wish I had better advice other than giving in to other people’s prejudice and yet, if you NEED to succeed that may be the only answer, not one I can live with but I understand others may be more willing to or not have a choice.
I am a social autistic, not because I am good at the social stuff, I’m not, but I am motivated to put myself out to try and make the social stuff work, that can make my life easier in finding a compromise to make things work, so long as the others are willing to make a bit of an effort. I’m fine with making the larger effort. I only struggle with those who won’t make any effort at all.
For a non-social autistic it is a much harder problem as they need others to be reasonable and make the effort and they just don’t see the need. Their legal rights are irrelevant, their problems are just too difficult for the NTs to understand and they cannot see any benefit for them in making an effort themselves. I am aware that things are changing, but the reality is that beyond childhood, acceptance of neurodiversity occurs in islands.
There is no answer. The reality is that, in my experience, for autism (and I suspect in many cases of diversity), there are two fundamental situations:
- There are those autistics who successfully deceive the NT population. Yes, they are odd but their skills are of sufficient value that they are tolerated, sometimes accepted
- There are those autistics that are unemployable because they don’t understand the social dance necessary.
The law can be a help in both groups but much less so than you would expect/hope. In the end the world is governed by people not by laws and people will do what they do whatever the law may say.
So what do you do? Well for me, at my age, I choose to be who I am. I compromise where it is acceptable (to me) and not where it’s not acceptable (to me). BUT I am lucky, I am very good at the job I do and I have learnt (slowly and painfully) how to hide enough of my autistic self so that others can handle it.
Not everyone is in my position or wired the way I am, but they shouldn’t have to be, should they? In a tolerant society that believes in diversity, difference should be welcome and not tolerated or hidden from?
This letter has spent a considerable time being redrafted, I don’t keep count but this is revision 17 since I transferred the word document into WordPress and there were at least half a dozen drafts before that.
That’s why this and subsequent letters are “late”.
Why so many redrafts – because my language in earlier drafts would be considered inflammatory (maybe it still is) and hence I was failing to say what I wanted to in a way that others could understand.
It’s possible in “sanitising” my words I have lost what I wanted to say, but reading this final draft, it feels right. It may not say what I originally wanted to, but it does say the truth of how I feel and so is acceptable for me.
I wish I could just express myself without this complex dance, but I can’t, words are just so difficult and the world around me makes such powerful judgments based on words that I have to try and watch my step. This is me being careful.
And so we return to the topic of this letter, you can make as many reasonable adjustments as you like, but unless you walk in my shoes (well pretty sandals anyway), then how can you know they are reasonable. You certainly don’t ask me and no, for your information, I don’t take sugar.