As someone who is NeuroDivergent (ND) and has multiple ND diagnoses I know it is incredibly hard to describe neurological differences to others because for one thing, none of us have any idea what the world is like for anyone else.
There are of course many reasons why it is challenging to have a diagnosed deficit or disorder, there is a lot to come to terms with. I cannot tackle all the issues in one blog so for now, I will settle on what I call 'the language paradigm'.
The issue stems from the fact that we require medical diagnoses in order to have our neurological developmental differences accounted for in education and employment. Even if we are well adjusted and suffering no additional mental health, or physical difficulties we still need to obtain an official, medical, diagnosis to gain access to certain support like Access To Work and/or the Disabled Student Allowance.
For many a diagnosis can be the key to unlocking the right support to enable the individual to achieve their full potential but it can also bring prejudice and discrimination with it, as society views those of us with medical diagnoses to be more challenging to make adaptations for.
In this blog I do not want to bore you with debate and rhetoric. I am just briefly writing about what happens to language when a medical diagnosis is used to describe natural human differences. The medical model identifies our neurologies by deficits, delays and observable 'challenging' or 'undesirable' behaviours and the language used around it is a medical one of impairments and deficits.
I have campaigned for people to take on board why identity first language is so beneficial to the ND community but I have decided to take a different approach this time. Rather than trying to explain why I find it offensive I will just try to show you.
In order to do this I would like to introduce you to a topsy-turvy world I just made up.
In this world ALL neurologies are defined by deficits, lack of achievements and undesirable behaviours. All types of neurologies are pathologised and in this topsy-turvy world the neuro-typical neurology has also been identified as having too many challenging and undesirable traits according to the professionals and in an attempt for parents to understand the additional needs these individuals have, support groups and charities are popping up all over the country.
In this topsy-turvy world perhaps we would see posts like this on social media:
I hope that reading this will help you realise how much language matters. Every single person who is Neurodiverse is a unique and able person first and foremost, just like you are.
The ND community are neurologically DIFFERENT to the majority and these differences are as much part of them as are their skin colour, nationality, ethnicity, and so on. When we have these kind of socially acceptable differences we do not need medical diagnoses to confirm them. We don't need a doctor to confirm we are British or homosexual, we are allowed to embrace these kinds of differences. Perhaps that is why People are not told that they have negroism, or are suffering with Britishness. That would sound ridiculous, and insulting; yet we (the ND community), are being told that a fundamental difference in the way our brains work means we have medical conditions, disorders and deficits.
This medical language implies that we need to be cured or treated for the conditions. As a therapist I can tell you outright, I do not treat Autism, Dyslexia, Dyspraxia, or any other form of ND difference, I accept they are part of who we are, I do however treat plenty of Autistics, dyslexics and dyspraxics because there are plenty of areas where they can benefit from gaining additional support.
We do have a difference in our neurology, and this ND neurology has been misunderstood for years. Turned into a condition that has been identified only by its shortcomings and weaknesses, never by its strengths. Always talked about using medical language to describe naturally occurring forms of neurodiversity creates barriers to acceptance. So long as people associate these differences as medical conditions they will be waiting for the pharmaceutical companies to create cures or treatments to help eradicate these conditions from future generations.
The truth is that our ways are not wrong, our brains are not broken or in need of a cure, not any more than the NeuroTypical majority are. We are just wired differently to each other and each of us have value!
If you thought the above example would be an utterly stupid way to refer to the majority of people who are neurotypical thinkers then please join us on the 'Identity First' campaign which is being supported by many autistic led organisations.
I joined the campaign because it is important to me that people realise I do not have a medical issue called autism, dyspraxia and dyslexia. There is no biochemical marker a medical expert can point to and say there it is, that's your autism right there. It is not like having cancer or a broken foot, in fact after 70+ years of research scientists still have no idea how to scientifically assess autism or any of the other ND developmental differences. That is why all assessments involve taking detailed histories and identifying certain observable behaviours and deficits. These medical assessments can not be done by a brain scan or blood test. So there is no 'thing' called autism for me to have.
My differences are not contagious or degenerative and they were not brought on by sudden trauma. The differences do not cause me ill-health in any way, living in a Neuro Typical world is a different issue.
I do not believe that I have this medical thing called Autism (or any other diagnostic ND label), but I am; autistic, dyspraxic and dyslexic, with more than just a little ADD thrown into the mix. My mind does not work like everyone else's. That is a good thing! It is how I was born, it will still be my type of neurology when I die. I am Neurodiverse and I have strengths as well as weaknesses.
My biggest barrier is society not valuing our differences enough to want to understand them. We are easily dismissed as a 'difficult' to cater for minority. Given excuses for failure and many of us grow up in a world where little is expected of us. In fact, many in society talk about us as if we are no more than a burden on the State. The reality is that when trying to access education and employment (which is not geared to our strengths) we often fail to achieve as we encounter too many barriers.
Not enough focus is given to our strengths once we are deemed to have something medically 'wrong' with us. It is an unfortunate reality that once diagnosed we are often seen as being in the wrong as our perspective is put into doubt due to our 'neurological' diagnosis. In my topsy-turvy world I wonder if Neuro Typical individuals would start to feel less capable just because they were being identified by their lack of achievement and deficits too.
I would like to think that even in this topsy-turvy world, no one would tolerate adverts from charities using language like this:
I would like to think we (the Neurodiverse community), would not tolerate this kind of dehumanising approach to the NeuroTypical neurology.
Perhaps if you were to suddenly find the way your brain works being defined by medical language you would get it. Yet we live in a society where we encounter this kind of negative language about our ND differences on a daily basis and far from shunning organisations that use this kind of hate speech against us, they do well as they gain donations to help eliminate autism, as an example.
Being neurologically different enough to warrant these ND developmental diagnoses like autism, dyspraxia and other similar differences, means we need to be taught differently, allowed access to learn in appropriate environments and yes, we need to be given continuous support until we have achieved a satisfying lifestyle. With support we can achieve our true potential even in this massively NT dominant society.
Being Neurodiverse does not mean we have any kind of disease or illness affecting our brains. We should not be subjected to negative medical language about the way we are, any more than we should for our skin colour, ethnicity or any other protected characteristic. We cannot help the way our brains work, and we did not choose to be the way we are so we should not have to grow up being told we are broken or need fixing over our developmental differences. We think and interact with the world differently to the typical majority but that does not make our ways wrong.
Some of us would love to tell you about the positives we have discovered about being the way we are, to describe how our strengths benefit us but in order to do this without prejudicial views about these perceived 'medical' issues we need to be able to describe these differences to you in non-medical terms.
In order to effectively self-advocate we have to move away from medical language and towards the more inclusive language of diversity. Then it will become easier for all of us to explain how our differences impact us and how we need to account for them. Everyone is different to some extent, and everyone could benefit from better understanding of how they work.
Unfortunately as long as we continue to use person first language and say we are people with autism (or any other ND diagnostic label), we are effectively saying we 'have' something which we could conceivably theoretically live without and possibly even have taken off us. 'To have' is not the right word, if it were being used correctly then you would be able to conjugate it like all other verbs, you can have something one minute but not the next so the past tense of have is had. As all Neurodiverse differences are life long we can never for example, say 'I had dyslexia but it is gone now'.
By using language that implies we only have something for the time being it also gives the impression that something like autism is being kept by choice in our possession. Person first language also gives the impression that neurodiversity is a bad thing, that like an illness or disease, you should never identify someone by the medical label and should instead always place the condition secondary to the person.
Problem is that our brain types are NOT conditions brought on by illness or disease, they are simply a part of the way we function. So it is as wrong to want us to change our neurology as it would be to expect black people to be expected to undergo treatments to eradicate them of the black skin. A sick notion, which I for one am relieved that the medical practices never explored back in the days when the black population were actively treated like second class citizens. In racial matters we have come a long way but any one who looks into the race issue knows there is still so much inequality and we have a long way to go before we have a really inclusive and equal society.
Over the last 50 or so years we have come a long way in the way we treat and value people with visible differences but we seem to have gone nowhere on accepting different neurologies.
In order to accept our neurology and adapt for it so that we can achieve our potential you first have to stop trying to cure or prevent our differences from affecting future generations. You have to accept that neurodiverse individuals have just as much right to exist and flourish as everyone else. Neurodiversity is a natural and valid brain type. Please stop discrimination against Neurodiverse neurologies.
Please share this blog if you want more people to see for themselves how ridiculous it is having our neurology described by the behaviours and deficits other neurologies don't like.
NB. Needless to say, all the above information about Neurotypicality Disorder is totally fictitious and is just a product of my made-up topsy-turvy world ;-)
...but imagine if this was the way society looked at all neurologies!