Dyslexia: Neurodiversity and shame

I will write this, conscious of the notion that the people whom I would like to read it, sadly, may not. Those with dyslexia may have been shamed into ‘written word silence’.

Dyslexia: stigma, shame and self-worth

A counselling perspective:

I have worked as a counsellor in the London inner city, within both the NHS and community services. There is one big thing that has always struck me as unacceptable in all these services.

The assumption that everybody who comes in is ok with forms, questionnaires etc. and that (invisible) neurodiversity does not exist.

My experience would suggest otherwise. I will admit that I was also complicit in this blindness; I became aware of this from my clients and in discussion with my colleagues. It still happens.

The usual mistake, that everybody somehow processes their worlds in a similar fashion to me (allowing for cultural differences) has led us all astray.

Why Dyslexia is a problem of self-worth

How long are we at school for? 12 years maybe, encouraged to compete against each other, to find what we are interested in - a part of life’s journey where we begin the trail to adulthood, to separate from the safety of the parental home and begin our own lives ‘afresh’.

The school experience has it all (American movies, in particular, like to dramatize the intensity, teenage emotions run high, all things can mean something), bullying, teacher’s pet, the secrets of sex, sports jocks and geeks, etc. I am sure you can add your own to this list.

However, there is one main thing that is prized beyond all else. Literacy. Inside this club, all is pretty much ok, right?

Outside though is a cold desolate place of fear, anxiety and hiding. At this early stage of our lives, the notion of shame and stigma is enforced daily in a hostile environment.

This is what I would like to turn our attention to (with kind permission and anonymised):

In my years of practice, I have heard the following said many times.

 “I didn’t want to seem stupid”, “I would pretend to be sick to avoid going to school”, “I’d just play in the park all day, no one seemed to notice If I were absent”.

“I’d sit at the back and lark around”, “My parents couldn’t understand why I was good at maths and couldn’t read. Every Friday I would have to read aloud a page from a book in front of the family”.

“I was taken to a place where they tested my IQ. I was sent to a special school. The teachers just let us do our own thing.”

“I couldn’t really follow the lesson, but didn’t want to seem stupid if I asked the teacher to repeat anything.”

Etc etc.

This, and I am going to call it 'psychological abuse', has had some devastating effects on the self-worth of many.

I would guess that roughly 20% of my clients could relate to the above.

The impact of the negative school experience has wide repercussions for our adult selves. In some way it is different from our relationship with our parents, the openly competitive nature of school made it worse.

The message that you are not good enough (ever) is carried through to our adult life, a psychological scar that seems impossible to forget.

I realise that the media has promoted several feel-good tales (I was not good at school but look at me now) over the last few years, however, in my counselling experience this is largely not the case.

First and foremost - dyslexia is not your fault!

I do not need to write what has already been written here. The important point (from a scientific validity viewpoint) is that dyslexia is clearly an issue of brain ’wiring’.

Now called 'neurodiversity', the old model of ‘normal’ has been turned on its head by the advances in NMR scanning.

The next point - and this is where counselling is important - is that, because of this fundamental error in the education system until relatively recently, there are still whole generations of people in the UK, suffering through shame. It became a stigmatized secret, hidden away as an invisible problem.

Invisible problems, shame and stigma

There are several reasons for the importance of the confidential nature of the counselling relationship. Here I will just highlight one of the major ones.

The counselling space is a place to examine, in a trusting non-judgemental relationship, those parts of us that we attempt to hide from others. Our (invisible to others) selves, protected by a frontage barrier of a personal mask, is our inner saboteur, our trigger points to fight and flight reactions, the root of most of our fears and anxieties. As it is often said, these” secrets keep you sick”.

The counselling relationship allows a way of bringing these secrets into the light, safely. Wounds that can be seen can start to be healed over time.

Here, safely done and at our own pace, the notion of self-examination, making some sense of our life’s journey. We can tell our tale.

Underneath this simple storytelling though, lies the web of our emotional self. Our unconscious needs to be loved, accepted, seen as a good enough person. The eyes and opinions of others count, it is after all how we see ourselves (not totally, however, we do not seem able to escape the ‘gaze’ of the other easily).

Dyslexia: shame, guilt and self-esteem

Over my years of practice, the most internal emotional (seemingly irrational) wound, seems to me to circle around the whirlpool of shame.

This one issue, (negative educational experience compounded by ignorant adults) goes deeper than it should.

In general terms, it has eaten away at the self-worth of dyslexic people. (Not all, in some cases it has become the motor for "I’ll show them what I can do!" - the other side of the balance.)

The list of "I cannot do that, what will others think?" runs long. The sophisticated hiding and workarounds become ever more intricate. This one issue is now living rent-free in your head.

This secret shame infects your self-esteem, the predictive nature of thinking, "how do I hide this?" permeates deep into your decision making. "What do I need to avoid?", rather than "what possibilities are out there for me?" becomes a way not just of thinking, but also social engagement and self-sabotage.

And it is still not your fault.

It is nothing to do with clever/stupid labels or abilities. The older equivalent (nonsense) issue was the teachers war against left-handedness.

Counsellors/psychologists know this today, the route out of negative automatic thinking is possible.

Here, the counselling relationship is paramount, in our willingness to engage without judgement.

Everyone has their own personal biography as to how these issues arose and came to be deeply hidden within.

If you are differently wired (neurodiverse), it is a function of genetics, that is all. 

Curiously, in the world of psychology, the evidence is clear and unambiguous. The stigma has been lifted for the most part. Educational establishments will now assess you and allow extra help to circumvent their systems (historically, schooling has changed little in the way of testing from the 19th century!).

Today, being dyslexic should not be a place of shame. But it often is. In the same way, people come in different shapes and sizes, so our neurological wiring has great diversity. 

It is not anyone’s responsibility or fault. The teachers were at fault in the era before roughly the 2000’s when this new information came to light, in a scientifically verifiable way.

Why have I written this?

I write this as I still see the old version of the world preventing people from getting access to help.

Too many health services rely on forms, assessments and they never ask the simple question: "Are you ok with this or do I need to change my approach?". The NHS heavily relied on written correspondence. It was OK if English was your second language, translations could be found. However, there was a hole in this net, an assumption that everybody was as literate as themselves. Neurodiversity was ignored or brushed under the carpet. Bureaucracy ruled. In my experience this bureaucracy was again guilty of shaming the neurodiverse, blocking access to services and help in the most extreme cases. This societal mistake (anything educational before the year 2000) needs to be addressed and rectified. 

You see it works both ways. Having Dyslexia is not something to be ashamed about. Meeting people who are uncomfortable around the written word, ought not to be shaming, but accepting.

Neurodiversity is here, scientifically proven and 'just is'. This is not a place for personal shame. Rather a place for acknowledging the harm done to kids and celebrating the many talents and skills of those who survived and are striving and thriving against the odds.