Letter from the North

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

 

2 Comments

  • Victoria

    David, you say in your postscript that an individual letter won’t make sense till one has read a series of them, but for me this one makes perfect sense in its own right. Thought provoking, and, yes, uncomfortable as you say. Having read the previous one (July 17th) I am again amazed at the difference between what appears on the surface and what is going on beneath it. I don’t know if that is in any way useful but I did want to say it.

    • Bean

      Thank you Victoria, there are two things happening when I comment on a letter making sense:

      1) I have very little (often no) idea of whether what I have written (or said when public speaking) makes sense to others, even when they say it does, I have great difficulty understanding how it could have.

      2) For each blog post I put a great deal of effort into trying to make sure that what I’ve written is coherent within itself (or is that consistent?). But it rarely says (to me) what I wanted it to say, indeed it is only when reading it that I realise it doesn’t say what I thought I was saying, even if it says something sensible and I do agree with what I’ve read.

      I will still need a lot more “drafts” to find something I write that does say (to me) when I read it what I wanted to say when I wrote it, by which time I have forgotten that it was something I had tried (and failed?) to say many minutes, days, weeks, …, ago!

      So, whilst the blogs may make sense on their own, they are often not what I was intending to say, that will come along later, weeks, months or years, in another letter when I will have forgotten what I was trying to write in the original. Indeed the chances are that I will have no memory of the original letter – that’s one of the reasons why I often repeat myself, even within an individual letter.

      Oh and when I say no memory, that is not quite true, I have no language memory but I do have a “sense” memory and that is something I have written about in the book I am trying to write so maybe one day that idea will make it out into the world or I’ll forget and write a letter on it!

      Sorry, I’ve probably made a simple “thank you” far too complicated 🙂

      Bean/David

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