The human cost of dyslexia
This article is a follow on from an All-Party Parliamentary Group for Dyslexia and other specific learning differences at the Houses of Parliament, researched by the British Dyslexia Association with contributions from the therapeutic arena and several others coming from a more educational direction.
The report explored the extent of the psychological impact dyslexia is having on people with dyslexia and their families and makes for stark reading. Its impact will hopefully bring about change in the educational system. However, there is also the counselling perspective to consider with regard to the human cost of dyslexia.
Assessment of dyslexia
Dyslexic people can be devastated when they receive an evaluation of dyslexia. It needs a tender heart and skill to appreciate the all-pervading sense of fragmentation of the self that can occur.
Having lived a life under a cloud of believing they were rather 'thick and stupid', it is alarming to discover things could have been very different. This realisation can create an emotional soup. At this point, the person is no more equipped to deal with additional learning - i.e. software and skills training as an adult than they were when their problems initially became apparent - usually in their early school years.
Counselling the dyslexic client
There appears to be a central array of presenting problems common to all dyslexic clients. Although these presenting problems are far from exclusive to dyslexia and neurodiversity generally, the frequency, intensity and the enormous amounts of energy required to cope with them - is. The origins of the presenting problems are firmly embedded in the early years' experiences and tied into the family of origin expectations and primary and secondary education experiences.
Dyslexic clients are not less able to cope with complex emotions than their neurotypical cousins. It appears many had to cope with far more unresolved problems from the past where the focus had been purely on what they could not do. This focus on deficit made them oblivious to their strengths. Also, few understood the presentations of dyslexia other than a societal view that there was a perceived difficulty with reading and writing. It may be that rather than general counselling, presentations of dyslexia create a screen hiding a history of trauma.
Clients can react to experiences from an early age. Not so uncommon in counselling! What is unusual is the realisation that these experiences can be felt as inescapable at a time when there was no mechanism firmly in place to cope emotionally. Psychological wounds appear to have accumulated through daily unrelenting small traumas caused by failing to function as expected in a very prescribed system.
Trauma and dyslexia
The definition of trauma is "a deeply distressing or disturbing experience" and the symptoms of psychological trauma are:
- anger, irritability, mood swings
- anxiety and fear
- guilt, shame, self-blame
- withdrawing from others
- feeling sad or hopeless
- feeling disconnected or numb.
Add to this an ignorance of how dyslexia can present itself, and you have someone convinced they are suitable for nothing and who is at risk of becoming a walking shell.
To understand the impact on life course potential we need to look at how attachment experiences impact how our minds work. We know how early relationships shape the way the mind and brain develop from our young years into our adult lives. The neuronal circuits firing and wiring as we grow, that shape how we think, feel, remember and behave. These models of attachment are formed very early on and are the crucible of our communications and connections with our caregivers, those imbued with authority and in charge of our safety, security and nurturing, and can last a lifetime.
We also know from neuroscience and Poly Vagal theory, that someone in a state of hypervigilance (fight or flight) - or in deep depression and despair (freeze and flop) - is cognitively/physiologically unable to absorb new learning - whether you are five or fifty. The brain is hard-wired to focus on survival and thinking is not something worthy of energy when your entire nervous system believes you are about to be annihilated. This protective mechanism is below consciousness and happens with no conscious awareness.
Educating the educators
What if our system of education and the values we attach to academic achievement expose clients, when they are at their most vulnerable as dyslexic learners, to attitudes which can be experienced by the nervous system as abusive and life-threatening? This can result in trauma-like presentations which often become evident in the role changes of adulthood or further training attempted later in life.
The origins of the trauma are rooted in the relentless day-to-day, week-to-week, month-to-month, year-to-year, constant misunderstandings of a blossoming person's abilities, that impact the growth of a positive sense of self. It ultimately makes them ashamed of a fundamental aspect of themselves they have no control over - being dyslexic.
In attachment terms, where this becomes most harrowing, is that the caregiver - the person who is charged with keeping them safe - has no choice but to keep depositing them back into a system where the child comes to believe there is no hope - no escape. No end to the ritual humiliation of being viewed as different, less than, labelled 'thick', 'stupid' and, even worse told there is 'no such thing as dyslexia' and to 'try harder'.
Generalised anxiety, depression and low self-esteem can come about not because the person is dyslexic but because of the way their dyslexia is perceived by society and education in particular and how it has impacted the person's sense of self. How can you be truly in a relationship with another when you have learnt that, to survive, you have to hide a piece of yourself for fear of ridicule and denigration?
That attachment legacy may continue to haunt them right the way through the life course - irrespective of their perceived eventual 'success' - to the point where they have had to engage with therapy to understand their emotional trauma specific to their experience of being neurodiverse. It has been hidden through shame and fear of humiliation and being judged against others who are 'normal,' i.e. fit the mould.
To understand from a different angle, let me give you a physical analogy. I have a wound - a cut on my leg. I don't get the chance to get it seen and hope it will heal on its own. Then I take part in a compulsory group activity. I get kicked in the same place, and it makes the cut bleed again. This time it's bruised as well; the cut has got deeper and won't stop bleeding. I still have to take part in the compulsory game and my original cut and bruise get kicked again and again and again. I cover it up. I put lots of padding around it. But eventually, because I haven't been able to stop and give it the right treatment or rest - it gets infected. Although I can limp about, I have to rely heavily on my good leg. That puts my whole body out of sync as I try to compensate. It makes me slow and tired. My concentration goes. Eventually, the infection affects my entire system. The cause is not the original cut but the consequences of it. I will be left scarred - that's if I am lucky enough to heal at all.
Dyslexia - 40 years of knowing
The question screaming out for an answer is - knowing what we know, and have known for the last 40 years, why are we forcing dyslexic children through an education system that can have a traumatic effect on them? it is of little benefit and can have lifelong emotional repercussions.
If and when adults are finally able to cast off the shackles of educational conformity, many will finally have the chance to embody their strengths. These are often exceptional individuals with visual-spatial reasoning, increased creativity which is often artistic, big-picture thinking and being verbally gifted. They voyage forwards into successful careers but may still find themselves at the mercy of their early attachment traumas.
The effects of dyslexia
Compilation anonymised to protect client identities.
Case study one
An award-winning engineer. He is viewed as very successful, competent, confident and a bit of a raconteur. He is very much dependent on an understanding wife who supports him with his dyslexic needs and allows him to focus on his strengths. He struggled throughout school having received no interventions. He was so bright he developed strategies to cope but has ended up with a fractured relationship with his parents who he feels tortured him by sending him back to school where he was bullied, shamed and humiliated by teachers and students. He was made to stand on a desk and read so others could laugh at him. His full breakdown came when he watched his gentle-natured seven-year-old son turning into a raging distressed monster going through the same experiences he had - with a 25-year gap. He was unable to drop his child off at school or attend parents' evenings without experiencing flashbacks and panic attacks which leave him vomiting with distress.
Case study two
Highly successful, 50 years old. Never told anyone he was dyslexic because to him it was a badge of shame. Something that was inexplicably wrong with him no matter how hard he tried. His life was split into two parts. The first, school and family where he could do nothing right, was getting into bad company and failing dismally. The second was where he escaped to art college and his latent creative talents were picked up by a perceptive teacher who recognised dyslexia. Having initially been written off and leaving school with no qualifications, he eventually got a PhD and now works as a high-level executive in the pharmaceutical industry. But the hole inside him kept telling him he wasn't good enough, not able enough and constantly on guard as to being 'found out' resulting in fragmented personal and professional relationships. A deep depression has impacted his ability to enjoy any of his successes - the legacy of his early years.
Case study four
The dyslexic son of a dyslexic father. A father who lost his job so many times and became so ashamed that the whole family had to pretend to everyone he was going out to work although he was unemployed. Friends, family, neighbours. The deceit and collusion impacted the son's ability to trust or maintain relationships. The shame and fear of being found out as dyslexic and therefore 'less than' became intolerable resulting in PTSD-like presentations. These would become acute when someone was breathing down his neck observing everything he did - just like his father had done.
I would say at this juncture that the outcomes of dyslexia-aware counselling are outstanding because they focus on the dyslexic strengths of the person. Many of our clients make peace with their past and eventually can move on. The point I am making is that these situations simply should not happen.
What a huge cost to the person, but what an even bigger loss to society. Picking up the pieces of shattered lives for no other reason than that they just didn't fit into the mould - a mould that has a very narrow window of tolerance.
Changes in the industry
On the upside, we know things are changing in the industry. We know GCHQ attracts the very best neurodiverse people and harnesses their talents, and don't allow preconceptions and stereotypes to stifle innovation and ability. Silicon Valley is the same. Dyslexic people can see codes with patterns, repetitions and omissions. Most people only get to see the full jigsaw picture when it’s nearly finished while dyslexic cryptographers and coders can see what the jigsaw puzzle looks like with just a few pieces.
There are several organisations (such as EY, Barclays Bank, Hampshire Police, The Institute of Mechanical Engineering and Shell UK) that facilitate dyslexia-friendly environments. They provide mentoring schemes, fund diagnostic assessments and dyslexia awareness training for staff - appreciating the power of different thinking. Productivity has been shown to increase, as have sales. Recruitment costs are reduced and there is marked retention of knowledge capital.
What if we were to include dyslexia awareness in all counselling training irrespective of orientation?
Where dyslexic presentations and different ways of processing were understood and valued rather than pathologised. In the 12 years we have been operating, although many establishments make referrals to us, only one training college has asked us to deliver a presentation. The venue was packed. The main criticism seems to be that empathy should be enough. However, many of our hundreds and hundreds of clients report that 'conventional' counselling was not helpful as the practitioner did not understand or appreciate the energy it requires to be dyslexic in a predominantly linear world. They came away feeling misunderstood and diminished with past hurts reinforced rather than reduced.
Apart from the human benefit, there is no doubt we need a diverse workforce and support system like this. That will only come with the social structure as a whole having a far more informed understanding of the human cost of dyslexia; understanding the potential for emotional trauma in those early years with a focus on deficit and the far-reaching, intergenerational impact - psychologically, societally, emotionally and financially.
The future and dyslexia
What if we were to develop flexibility early on in our education system to change the shape of the mould and give it more supple edges? A shape that allows for a focus on strengths not just on a deficit. Where a child is raised and educated feeling safe, secure; valued and capable. Where validity is given to their creative thought, typical problem solving, pattern recognition and empathy, those values can then translate through to adult life where they are built on and consolidated.
For those who say it's too costly, look at what it already costs us generally in terms of treating mental illness, unemployment, tribunals, family fragmentation and work days lost for stress and depression. Dyslexic people make up 1.7% of the population. That's a sizeable chunk to be wandering around with avoidable trauma symptoms. It's a sizeable chunk to be impacting positively on our productivity.
A different way of being in the world doesn't make thinking differently something wrong and in need of correction, or indeed therapy. It makes for innovation and insight. It needs the attitudes towards it to change to see the alternative benefits to the person and ultimately society. We will then be in a healthy, dyslexia-aware world - for all.