Month: July 2017

Letter from the North Fri 21-Jul-2017

Diagnosis

It’s the start of the school holidays, down here in West Cornwall, that means six weeks of mayhem. Travel is forecasted to be awful. But, it takes time to reach down here. This morning there was an exodus of last week’s visitors and this evening there are tailbacks of the new batch trying to get here.

So, here at the North it’s a window of quiet, it probably won’t last but it’s nice for now, I have my usual table and all is, relatively, well with my world.

I wrote last week about my issues with the NAS and also mentioned my concerns about the current focus on “diagnosis” and it seemed a good time to explore that further.

Some background to some of the issues I mention can be found in an excellent book I have been listening to (I use audio-books for a lot of my reading, it works better for me). The book is “Bright not Broken“. I have not given a link to Amazon as I want to make it clear that I mention the book because I think it is worth reading not because I might make money if you buy it by being an Amazon affiliate!

Although focused on children, and from an American perspective, it highlights a lot of issues that concern me. If you think that I am a lone voice, I suggest you read this book. It covers in depth ADHD, autism, gifted children, medication, DSM (Diagnostic and Statistical Manual of mental disorders) etc. Don’t let the focus on American issues (unless you are in America of course 🙂 ) and the fact that it was written some years ago and it is about children distract you. Please use it, as I do, as a wake up call to how much more complex these issues are than they are often portrayed.

I have two fundamental problems with diagnosis:

  • The “why” question, what is the purpose of diagnosis? Even more importantly, who is it diagnosis really for?
  • The lack of evidence. Diagnosis here is an “opinion” based on observed behaviors. There is NO scientific test for Gender Dysphoria, autism, ADHD, even schizophrenia and bi-polar disorder. Change the specialist you see and you can get a different diagnosis. Change the diagnosis criteria and you get a different result. This is not the sort of medicine where there is a definite test, there isn’t.

Teresa pointed out that there are all sorts of consequences down the line of being diagnosed and hence in the medical system, including eligibility for certain jobs (the armed forces is one that has been suggested but I don’t know), as for “don’t ask don’t tell” and the most recent twitter announcement from the US on their armed forces not allowing Transgender individuals in any role. I think it is important to be aware of the problem of unintended consequences, so, …

Looking at the why question:

  • Is it to enable treatment? If so, is that likely to be pharmacologically based?
  • Is it to help inform the individual? If so are there better ways?
  • Is it to have a label, if so what sort of label? Is the label the answer? The decision on what the label is depends on who you see for your “diagnosis”.

For me, understanding has to be the only answer to the ‘why’ question.

Alongside that, I think it is very important to consider WHO the diagnosis is for, who benefits from it. It may well liberate “funding” but funding to do what? Is it what the child needs or what can be offered.

For example, the NHS (UK National Health Service) offers a counselling service for free, but it’s time limited (usually six weeks) and CBT based, neither of which is necessarily what is needed, but it is all that is offered and considered by NICE (REF) as “best practice”.

  • Decided by who?
  • For who?

We (as Beanisons) are willing to take time and work with those the standard counselling process just doesn’t touch because it’s trying to be a catch-all and it is not a ‘one size fits all’ solution. What a lot of people like me and their partners/families want and need is someone to take time to listen and talk – and our cash starved services just don’t have the time and adopt practices that are quick, but may not be best (for the individual).

So, just because there are treatment and support services that are associated with a diagnosis doesn’t mean that the individual is any better off and can actually be worse off.

For me, diagnosis is something to be seriously thought about, its benefits and disadvantages, who is doing it and why, who wants it and why.

I become concerned when it becomes the primary objective and, because it can be hard to get, getting it becomes the dominant objective and the “battle” becomes an obsession.

Some might consider I am criticising those fighting for support for their children, I am not, I am simply asking for eyes open, an understanding that diagnosis is not the beginning, it is certainly not the end, it may not even be relevant, it is simply a piece of information and MAY be a useful tool in persuading someone to put some effort into providing support (but don’t hold your breath)

I feel strongly I guess for a number of reasons:

  • First, people like me are invisible, we passed through the education system and childhood unnoticed because nobody was looking for us. That much has at least changed. We are offered diagnosis but, for me, it fails the test of “why” and “who is it for”
  • When children move into adulthood a lot of the support that came with diagnosis disappears and sometimes I feel that is worse than never having any. For example Ritalin is a commonly used drug to help control behaviors in ADHD, but that is typically only prescribed for children. As adults it may not be available and the individual is left to seek their own form of self medication, which includes other drugs that are not controlled. It is worth making the point that drugs control, they do not cure, the underlying problem does not go away.
  • Labels can produce rather strange reactions from people who focus on the label and not the person

It was interesting that on my counselling course (that I had to leave) I was exposed to people who believed that the “label” of autism was used as an excuse for bad behaviour and because of their perception I was tarred with the same brush.

Autism is a complex phenomenon, it can cause serious disability and in the same breath be responsible for amazing talents and a whole host of variations in-between. It is a blessing and a curse and applies to all sorts of human beings from the nicest most reasonable to the most unpleasant and nasty. In other words, autistics are as varied and diverse in their personalities as neurotypicals.

As an example of the sort of problem caused by generalising labels and looking for the worst in people:

I discussed toilets and gender diversity back in February.  There was, and still is, a lot of fuss in the news, particularly in America, about transgender individuals having (or not) access to toilets labelled with their preferred gender (usually female) instead of their assigned at birth gender (male). One of the dominant complaints by “society” is that a “male paedophile” will put on a frock, claim to be transgender, and abuse the females. The question has to be what happens now to all the boys in the male toilet, is their risk less, or less important? Ok, well let’s not say paedophiles, let’s say sex attackers. Same question, what happens when the abuser is gay not heterosexual (of either gender), who is safe then?

You simply cannot apply a broad brush and say that because some bad people will abuse the system, then we should tar everyone with the same brush. The vast majority of transgender people are exceptionally vulnerable and damaged by society, they are far more likely to be  the abused not the abuser and yet, …

So I worry about labels and if the sole purpose of diagnosis in the UK (and elsewhere I suspect) is to acquire an official label then I worry about what the labels means, how they are used and who benefits.

Labels and diagnosis is not just about autism, ADHD and all the other alphabet spaghetti associated with children’s learning issues. It is also about being diagnosed as gender dysphoric, not so long ago it included being diagnosed as gay!

So I choose to not be labelled as disabled, despite needing a stick; as transgender, despite being way outside of the normal gender stereotypes; and as autistic despite the fact that it is blindingly obvious I am.

  • Am I disadvantaged – for sure, sometimes.
  • Am I misunderstood, absolutely.
  • Am I faking it and don’t have the courage to be tested and caught out – no, yet that is often the perspective.

So, I am outside the medical, psychiatric worlds, they don’t know I exist and I struggle, but at least they haven’t labelled me as broken and that matters to me, I’m not broken, just different, and I fear that when or if the current system recognises my existence, then I am going to be considered broken and I’m not having that.

Well, that was a fair old rant, but it remains true, of my generation (and I am in my sixties) and at least one or more generations below me, we passed through the education system either unnoticed nor condemned. Those of us unnoticed are left to struggle, those noticed often ended up in the mental health system or prison. Getting a diagnosis at the age of 60 does NOT change anything other than provide me with knowledge and a label isn’t necessary for that, nor is being categorised as disabled.

What I need is a world that is more tolerant and understanding of difference, that is educated about diversity. But, for now, it seems that I can’t have that and I see different reactions to that:

  • Ignore it, just get on with your own life
  • Fail to cope and get treated as a problem and enter the mental health system
  • Stand up and shout, get ignored and criticised.

I’ve chosen the third option but option 1 would be so much easier and is often the chosen path. For me, I can’t do option 1 because I cannot bury my head in the sand and ignore what the world looks like for my children and my grandchildren, never mind all the others out there, I can’t just bury my head in the sand and yet…

So here I am, no longer a member of the UK’s “premier” autism charity, the system is unaware I even exist. I am trying to make a difference, one person at the time, and that’s how it has to be.

If you are reading this and any of it makes sense, then feel free to get in touch – whether you agree or not, it’s only when each individual fed up with the status quo gets together with others of a like mind that we can start to make a difference.

Postscript

These blogs are a single stream of thought, I have no idea what I will be saying and until I go back and re-read and edit, I have no idea what I was saying while writing or what I have said when I finished writing.

It’s as close as you can come to seeing inside my mind and if it is, at times, uncomfortable, please remember, I may well be operating on a completely different world view than you and you need to “judge me” (if you must judge at all) please do so on my terms not yours.

Again I would make the point that my writing is very different to what you are used to, it is only after you read months of these letters that any individual one makes sense, it does make sense in my head but generating words that provide you with the right context takes time and so you will often see the following sequence:

  • An idea in broad and coarse brush strokes
  • Filling in some of the blanks
  • Filling in more blanks and correcting things where, on reflection, the words I wrote do not reflect what I was thinking at the time
  • Back to the beginning and start this list again

This is how I ALWAYS have to write, but if I did that for each letter it would take months if not years to be released, so you are living in my writing process. I follow this process over a period of a few days after originally writing the letter and then I have to let it go and let the writing develop later, It is frustrating because unless you can grasp such a different approach to writing, it may not make sense in the short term.

Stick with me, it is worth it in the long haul and it will be wild ride 🙂

The Bean, The North, Fri 21-Jul-2017

 

Letter from the North, Fri 10-Feb-2017

Going to work in a frock

Yes, this post goes back in time, 10-Feb-2017 is when I wrote it, but as I have explained elsewhere I had other stuff going on that stopped me posting, this is the first of many letters from that time.

I have a problem with language. My thought processes and my verbal/written language, are not easy bedfellows. This means that whilst this letter (and the one before and those that follow) may not always make sense to you, they do make sense to me. However, my challenges with language are for another letter, but if there’s something you really don’t understand in this or any other Letter, then just get in touch and Teresa or I will try to explain. In the meantime…

Welcome to my world.

I didn’t always dress the way I do now, though I always did on the inside, just not obviously on the outside. Being as open as I am now has only happened in the last few years – so I am very aware of the before and after impact on friends and family. That doesn’t mean I wasn’t always gender diverse, it just wasn’t as obvious (to me, as well as to others!) as it is now.

What do I wear? I don’t have any trousers, I don’t like them, so it’s leggings in the winter and tights otherwise. I have a mix of long tops, dresses and skirts. Of course, in the summer, I prefer to wear a long dress, no tights or leggings. Men who wear shorts have no idea just how much more comfortable and cool a long summer dress is!

I occasionally wear nail varnish but it’s a bit of a hassle, much as I love it. I always wear dangly earrings and a necklace.

As for hair, well I have no hair (on my head) and I never wear a wig, a wig just doesn’t look right on me. I rarely do makeup; I love it, but it’s complicated.

Last week I told you I had found a job down here in Cornwall. Did I wear a dress to the interview in Penryn? Of course I did, what else would I wear? The picture is taken from a series I did on my previous contract but is the same outfit I wore to the interview

Prior to that interview, I’d been a contractor for over 20 years and all my interviews had taken place over the phone. My last contract was up in Sawston (Cambridgeshire, UK) and the interview was done over Skype. By then I was dressing the way I do now but that was hard to see on a head-and-shoulders shot. Whilst I was wearing earrings and a necklace (well, you want to look your best, even on Skype), I suspect they didn’t really notice those clues.

On the first day of that contract (and indeed every other day) I turned up in a frock and whilst there were some double-takes, they got used to it very quickly. I made it a project to capture that whole contract, day by day, with a photograph on Facebook – that’s over six months of photos and thoughts. It’s all still up there in the ‘cloud’ and you’re welcome to visit, although you may need to be a friend of “BeanCrossDressing”. I may well capture it here on Beanisons one day, when time allows (update, indeed I am in the process of doing this and my current progress can be found on my photos page)

The point of the project was that dressing the way I do is normal for me, it’s not something done in private or secret or something I feel embarrassed about, or need permission (legal or social) to be allowed to do. I no longer have any man clothes, this is how I dress all the time!

So, what happened the day I arrived for my interview in Penryn? Well, nothing. I was wearing a navy-blue dress and dark blue tights, smart clothes as you would for an interview; they interviewed me; I spent a couple of hours meeting everyone who worked there; at the end of this process, they hired me.

The fact is, I’m comfortable in my skin, I’m comfortable in my look which is neither one thing nor the other – and I think the fact that I was at ease with myself communicated itself.

I wouldn’t call myself transgender, though others might. I use the title Mx or Ms more than I do Mr. I haven’t seen the inside of the male toilets in this job, nor during the contract in Sawston. However, I haven’t seen inside the female toilets either. I stick to the disabled/non gender specific toilet, and that’s fine.

Should I fight for the right to use the female toilets? Well I could, but the reality is that I’m content being between genders and using neither/both. In situations like here in the North where I don’t get a choice as there is no disabled toilet, I use the men’s because that’s my biological gender.

Do I always feel safe in a frock in a men’s toilet? No, not always, but I believe in only fighting the battles I need to win. Here in The North, I feel perfectly safe; on a motorway service station at two in the morning, less so!

So, back to the advertised question, what’s it like going to an interview in a frock?  I admit to being nervous, interviews are nerve wracking for most people but even more so for autistics.

Would they judge me according to what I was wearing? They might well, but I had already decided that if people want to judge me on what I wear, that’s their problem and they need to deal with it. We did discuss the frock during the interview and I was told that some of the guys (and it is an overwhelmingly male environment) I met as we walked around might raise an eyebrow, and would I be worried? No, of course not, I happily engage with difference. In the event, nobody said anything and I gather that a “poll” taken after my visit revealed the only concern to be whether I could do the job (I can, I’m good at what I do) and the frock was irrelevant, and rightly so.

There you have it, two job interviews and subsequent jobs, presenting as gender diverse, passed without a hiccough. Has it always been like that? No, of course not, but that’s for another day.

The transgender folks sometimes disapprove of the way I dress because I’m not trying to be female (the opposite to my birth gender). However, I find the rest of society to be remarkably accepting of me being who I am, somewhere in-between.

I have a lot of time for people of either sex whose body dysmorphia, combined with gender diversity, leads them down the transgender road and sometimes on to the transsexual one. It is a tough road and takes massive courage. I’m with them every inch of the way, but there are many more roads than just that one, and mine is one of the many.

I digress (I often do that, it’s how I manage to express my thoughts, but it does mean that my writing is not a linear regurgitation). What was the interview like (wearing a frock)? Piece of cake, well it was from the frock point of view, but tough on the technical front as it should be.

Subsequently I was told “we have no problem with you so long as you don’t make it a problem for us.” I think that’s fair comment.

Being neuro and gender diverse is not always easy for those around me. I absolutely maintain my right to be who I am, but I also defend everyone else’s right to find it a bit odd and, sometimes, a bit uncomfortable and often a bit funny. I laugh with them and do what I can to help them feel at ease with their uncomfortableness. Of course it is odd. I don’t set out to make people feel uncomfortable, but I am going to be me and that balance of respect (I respect your feelings and you respect my difference) seems to work.

So, what would I recommend for other neurodiverse, gender fluid people? Well, start as you mean to go on. It is our (Beanisons’) belief that most of the problems that crop up in relationships (work and personal) come from feelings of being deceived, of not knowing, of not understanding. Being upfront may feel scary but it is my personal experience that people handle matters far better this way than when the signals given are not true to who they are. Make no mistake, you WILL give out those signals, even if you think you are hiding them; in the counselling world it’s called incongruence.

Starting a relationship without telling your partner (employer) you cross-dress, are neurodiverse, and then either telling them later or worse, they find out, is a perfect example of incongruence. The person your partner/employer/friend felt attracted to turns out to be not quite who they thought they were – and it hurts.

Despite the fact that Teresa met me in my man dressing days, there was never any question about my gender fluidity; so, although we had to go through the “change”, it was never about dealing with deception and we negotiated our way through the process just as any couple should/would. The point being that my nature was not a surprise, it was the extent and rapidity of the ‘change’ that needed to be negotiated.

It is not easy, but being true to yourself is always the best policy in the long run, even if it’s a royal pain in the short term :-).

Okay, that’s today’s letter, there was a long explanation here about which letter was published on what day, but that’s resolved itself and it’s probably best to save you from that convolution (though the spell checker suggested convulsion which may be more descriptive) of my brain. The autistic in me can come up with some very convoluted solutions and explanations of why I want to do things and sometimes, I have to remember to Kiss (that’s Keep It Simple Silly and/or Kiss Teresa)

Next week, “The challenges of communication into and out of the neurodiverse world – when what you think you understand me to be saying is not what I mean, and vice versa”.

Bean, The North, Fri 10-Feb-2017

Letter from the North Fri 14-Jul-2017

Independent Living.

This phrase was thrown at me earlier this week and it rather knocked me for six. I believe that’s a cricketing metaphor which is odd,  because I have no interest in or knowledge of the sport so, lest you think I am into that sort of thing, I’d like to make the point that I have no interest in or knowledge of or desire to ever converse about or take part in any form of sport – cricket included.

Well, that’s that cleared up. I am a member of the NAS, that’s a charitable organisation in the UK called the National Autistic Society. I have been to one local meeting and was a co-trainer for a couple of training session they did for professionals working with autism.

I have found it quite difficult to get past an emphasis on autism as a disability. Still, they are the National organisation, so being a member seemed the right thing to do.

A few weeks ago I spotted they were running a conference on Women and Girls in autism. Looking at the description it seemed to me to be a “there’s much too much done about boys/men, we need to balance things.”

I get that, just about, but two wrongs don’t make a right. You cannot consider a flavour of autism that is typical in males and a different flavour that is typical in females. Humans are far more diverse than that. Even in people identifying as male you can find autism behaviours that go from that expected in males to that ascribed to females and vice versa. Once you add the gender diverse community, it is blatantly obvious that we should remove the idea of gender from looking at autistics and instead look at how it affects the individual.

I tried expressing this idea to the organiser of the conference, I got the brush off, very polite. Whilst these days I can usually identify a brush off, I did check with Teresa because NT’s (neurotypicals) are so good at sounding like they are saying yes and meaning no, and the opposite way around. Why they feel the need to do this I do not understand, but they do.

I tried contacting NAS higher up and got the brush off from them too. Indeed the people at the end of their email system seem to be trained in what Teresa calls “flack-catching” i.e. providing a buffer between the “serious” part of the organisation and the outside world, protecting them from anyone who they don’t want to engage with.

It is in one of those flack-catching emails that someone summarised my concerns saying that I wanted advice on independent living and very kindly told me that NAS have leaflets and a helpline for that.

No, I replied I wanted engagement and since you are unable to listen, please cancel my membership.

So long and thanks for all the fish NAS ☹

“… independent living”, sounds like confirmation of my worst fears, that the NAS are as fixated on the disability model for autism as everyone else seems to be. Of course it’s never that simple but the autism “system”, wherever you look, does seem concerned with helping us cope with them but do not seem to be concerned about peaceful and cooperative co-existence of equals, and it’s the word ‘equal’ that is key here.

I have tried to engage with mothers (and it is overwhelmingly mothers) of children with autism and it can be very painful, they are so focused on diagnosis and getting resources to help their children that it sometimes feels that the children themselves are almost incidental to the parents’ battles.

I understand that today’s society (in the UK) requires diagnosis of a learning disability before resources will be released to help children, but children grow up into adults.

There are extremes of the autism spectrum that can lock an individual inside their bodies (e.g. non verbals) but they are not necessarily mentally or learning disabled. They just have a communication problem with mainstream society. Indeed, if you listen (however they communicate) you find that often the behaviour you think is a problem comes from frustration at a lack of understanding by those around them. That is certainly true for me. Separating learning difficulties and other medical problems from being autistic is not simple and too often it all gets wrapped up in labels.

Autism is NOT a disability, it’s a difference. It can be associated (Comorbidity) with disabilities but, of itself, it is not.

Despite being considered to be a competent communicator, I do have all sorts of communication issues, but the actual problem is the people I try to communicate with. If I change the population I am talking with (e.g. other autistics) then the problem disappears. So, do I really have a problem?

I left the NAS because I am not a victim, I do not want to be classed as disabled, like many people like me, I am quite capable of “independent living”, it can be difficult and stressful, but it’s not a disability problem, it’s a ‘who decided that my way is wrong and theirs is right’ problem and that is about discrimination.

The problem is that most of us are off the radar, we don’t ask for or need diagnosis, we are quite capable of working that out for ourselves. We are often experts in our field and very employable and the managers in our industries accept that to get the best they have to accept eccentricity – of course we are not eccentric, we are normal, but it works for us if that’s what they think and are happy to employ us,

Don’t think we are a minority, we aren’t but we are invisible, it’s easy to dismiss us as the geeks, yet we are fundamental to much of the underpinning of the world people live in, look at technology, engineering, we are there, you wouldn’t be reading this blog without people like me.

So, what to do? Every day, I see the struggles autistics face, dealing with a world that accepts them because it needs to but only in their place of work. In the world outside of that we are strangers, oddballs, misfits and trouble causers.

It’s not surprising that most of us don’t try to communicate with the world outside, it’s a thankless and unpleasant task, I know, I try and the best I get is ignored.

I know I am not alone and yet because the vast majority of us accept the status quo, we end up without a voice and the experts (the NAS included) don’t know about us or do research on us because they have no idea who we are – if the few of us who try to engage are ignored, then how can anyone actually know about us.

Well, Beanisons was founded to address that problem in the small; but I don’t know how to address it in the large. Blogs, Facebook, social media are all well and good but you end up talking to those who already agree and never reach beyond.

It is impossible and it makes me ANGRY, so very angry.

I was training to be a counsellor and had to give that up after 3 years because of systemic ignorance of what autism means in someone like me. I will write about that in a lot more detail when it is safe to do so, but it is just another symptom of the problem.

It is my experience that most autistics like me, just accept that the world around does not understand and get on with their lives, miserable as they often can be.

I understand that and, based on my experience of trying to do anything else, they may well be right, but I just cannot accept that and yet I feel powerless to do anything.

So, I will fight the fight in my little area of West Penwith and try to help a few lives be improved.

Blah (as Teresa would say), autism is NOT a business or an illness, it is a way of being, please get off the bandwagon and meet us as people, not as the results of a diagnosis.

Postscript

There was a time when Teresa checked these posts, helped me write better English and generally ensure that what I wanted to say came across. She is too busy with her own writing, so her input is minimal nowadays, which is why I stopped releasing these letters, though I continued to write them.

I’ve decided that if I try my best then that should be good enough and from here on, I will start to release the backlog.

So what you read is all me, and it won’t be pretty, my English teacher called me lazy – he was of course wrong, I try VERY hard and have done so with this blog. So if it looks like it was just thrown together then you may have some insight as to how hard communication really is for me, because this is as good as it gets.

Bean, the North, Fri 14-Jul-2017