But I don't think I 'have' autism, dyspraxia or dyslexia.
Don't get me wrong... I was not misdiagnosed, I do present with the correct delays, deficits and disorders to warrant these 'medical' diagnoses and the reality is that I do need extra support as I am disabled in many settings; but despite being severely impacted by these differences I still do not believe I 'have' any 'conditions'.
Is it just a case of semantics?
Is there a problem with saying I 'Have' certain conditions?
These professionals tried to act in our best interest when 'labelling' and 'classifying' our 'disorders', 'deficits', 'delays' and 'syndromes'. They decided that the most politically correct way to 'identify' these kinds of developmental neurological delays was by talking about the 'person first' and then mentioning the 'condition' second. This was meant to encourage people to see the person before the label. Even now, I am corrected when I do not use the politically correct term that is preferred by many professionals and parents of diagnosed children. I think they fear that I am not being politically correct. Despite the fact that I have these neurological differences myself, my opinion on how I like to be referred to seems irrelevant to most professionals, charities and organisations who prefer to say that we 'have' certain conditions.
Our understanding of Neuro-Divergent differences has grown massively over the past twenty or so years, and more and more ND labels have started appearing. Certain medical conditions have been renamed or reclassified. For example; Clumsy Child Syndrome became dyspraxia which then became Developmental Coordination Disorder (DCD), dyslexia became a specific learning difficulty, whereas ADHD became a mental health disorder, Asperger's Syndrome was pushed out and replaced with Autism Spectrum Disorder (ASD), and ASD also became a mental health condition, and so on.
When there was little understanding of Neuro-Divergent differences it must have seemed logical to diagnose these separate areas of difficulty. After all the characteristics of dyslexia are very different to those of autism. These neurological differences seemed unrelated. We were told we 'had' autism or that we 'had' dyslexia for example. This was then emphasised by some as us 'suffering with' or being 'afflicted with' these kinds of neurological differences. The reasoning in talking about the person 'first' may have seemed sound at one time but there is an inherent problem with saying that someone 'has', 'suffers with' or is 'afflicted with' a difference like Autism, Dyspraxia, Dyslexia, and so on.
Many diagnosed adults do not see these differences (or any of the other ND labels), as something they 'have'. They seem to have a valid point, after all they did not catch it, or suddenly start to degenerate into it... it's just the way their brains were wired from the moment they were born, they have never known a different way of being. Those of us with any developmental neurological difference are intrinsically different to others in the way we perceive and interact with the world... but we did not catch something that caused it, we did not suddenly become this yet the terminology implies that we 'have' something to give or to be pitied for.
From my participation in a number of different forums I see that many people see their neurological differences as an integral part of how they work, part of what makes them who they are. These differences are are intrinsic to the way they work. I am one of the many neurologically different people who tells people that I do not 'have' autism, dyslexia or dyspraxia... but I am a Neuro-Divergent thinker who has autistic, dyslexic and dyspraxic traits and qualities. To me that better describes how I work.
Unfortunately, no matter how many diagnosed adults call for changes in the diagnostic process our voices seem to be drowned out by others who do not have our understanding of what it's like to be neurologically different to the majority of society. Funny thing is that it is the people they are trying to protect with their political correctness who are taking umbrage with the language they are using.
What 'labels' and categories would we have if the Neuro-Divergent population had a say in creating them?
We would have a category of our own which would qualify us for additional support (much like the mental health category or specific learning difficulty ones do now), but it would be under its own category of Neuro-Divergent.
Within the Neuro-Divergent 'category' we would have specific areas of difficulty, so there would still be Neuro-Divergent people who were further identified as being dyslexic, dyspraxic, autistic, and so on. Research into the different specific areas would need to continue to help raise understanding and acceptance for each ND variant.
Who would be included under this Neuro-Divergent Umbrella?
Why Is the Neuro-Divergent Label more appropriate?
Many people have ADHD, autism and epilepsy, or dyslexia, dyspraxia and ADHD, or OCD and autism or... well you get my point.
Many who are diagnosed with just one developmental ND difference will often have overlapping traits with the other 'conditions'. So to me, the average layman on the street, it seems logical that our medical categorisation should be removed from the specific learning difficulty and mental health categories and put into a separate Neuro-Divergence category all of it's own.
Although as a group of people we may be more prone to developing mental health difficulties like anxiety, low self-esteem and reactive depression these are not an intrinsic part of our ND differences and whether we develop these additional mental health labels usually comes down to additional societal factors as opposed the the ND differences themselves.
What might a Neuro-Divergent Label Look Like Under This System?
'XXXX at 38 months, has presented with a number of Neuro-Divergent traits and qualities, special attention should be paid in future to ensure adequate screening for specific areas of difficulty or delay are undertaken as and when necessary.'
It would be essential that the child's parents be provided with reading materials on what it means to be neuro-divergent at this point. Ideally the reading material would list strengths as well as weaknesses and it would give the parents the understanding of what to look out for so early intervention could be put in place as soon as difficulties in any ND area presented. It would be even better if it also helped parents to identify and work to the child's strengths.
As we grew older our ND diagnoses would probably look very different. They could read something like:
'XXXXX is a 40 year old ND mother of three who has presented throughout her life with qualities and deficits commonly associated with the following neurological differences:
Autistic traits and qualities associated with social interaction, social imagination and social communication.
Dyspraxic Difficulties with processing/sequencing thought and controlling fine and gross motor function.
Dyslexic traits and qualities associated with delays in acquiring literacy skills and persistent difficulties in all areas of 'lexis', poor working memory and other related difficulties.
Hypersensitive to light and touch
Attention differences - characterised by an inability to focus thoughts and/or will hyper-focus for long periods...'
... and so on.
How is that different to what we have now?
The rest is just semantics. We could still identify ourselves as being dyslexic, dyspraxic, and so on but the overriding umbrella 'label' would be that of Neuro-Divergent because that would be more relevant to our experiences.
We don't fit neatly into boxes
I've had mothers tell me that their child has been diagnosed with dyslexia and ADHD so on a Tuesday the school take them for specialist dyslexia training but the dyslexia trainer won't tolerate the ADHD behaviours and shows no understanding of the triggers and that exacerbates the difficulties for the child. Then on Thursday the child attends social interaction classes where memory games are played to entice the children into interacting and 'turn-taking', but the child's poor working memory makes them hate going even more.
The end result is that the child does not fit neatly into the 'separate' individual diagnoses, and instead of supporting the child in a holistic manner they actually 'limit' the support the child receives. These stories are all too common so they leave me to conclude that the individual 'separate' diagnoses and training regarding these types of ND differences are inefficient.
Don't get me wrong, we need the in-depth training in all the separate ND differences to be continued, or even expanded on so as to raise awareness in spotting these differences because when early intervention is put in place and the ND individuals get a chance to work to their strengths they can achieve so much more. So 'identification' of the individual differences is essential. The difference would just be in the 'label' and 'categorisation' not in the rights of the individual to have their different needs accounted for.
Why Do I Care About The Label?
I am Neuro-Divergent, my brain works differently to the majority of people I encounter, although I do know a fair few people that are also ND and who function similarly to me. Because I have multiple diagnoses to communicate with people like me I have had to join internet sites for dyslexic, autistic, and dyspraxic people, it's exhausting keeping up with all of them. In most of the groups they only allow discussion of one ND difference, so there are sites for ADHD where your posts are deleted if they are about autism, dyslexia sites that tell you you cannot post about ADHD and most sites don't want you talking about epilepsy or Tourette's Syndrome. I only know of two sites where all ND differences are welcomed and discussed by the members but even these two communities are separated by diagnostic names.
There is a Dyspraxia community I belong to where discussions about epilepsy, ADHD, autism, Tourette's and other differences are discussed and one Autism organisation who discuss all the differences too; but they are separated from each other. Unless you are dyspraxic (or have an interest in dyspraxia), you wouldn't join a dyspraxia site and unless you are autistic (or have an interest in autism), you wouldn't join an autism site.
Without the Neuro-Divergent Label/Category our community is fragmented
I think we need to unite the ND communities so that we can enable society to pigeonhole us more appropriately. We need to be able to spread the word that we are a diverse group with strengths and qualities, and that we can be a valuable asset even if we can't seem to do basic things like tie a shoe laces or remember a round of drinks for more than two people. When we are allowed to be us - then we flourish but in order to be able to be us we need support to navigate this neuro-typical society.
What would I prefer my diagnosis to say?
More language needs to change
We need to change the language so that people with these neurological developmental differences aren't having to talk negatively about something they have not acquired or suddenly developed. Something that they have had for their entire lives and something they see as being 'just the way they work'. Their ADHD type of mental wiring is so integral to the way the person has developed that it is part of them. They have the choice to either learn to manage the difficulties that type of brain function can present them with and work to their strengths or they can let their ADHD qualities/traits run their life. They have a choice in how they deal with it but they have no choice in whether they developed it.
My problem with saying I 'have' a 'condition'
What I have is a significant difference in wiring in my brain when compared to most, it cannot be seen from the outside, it doesn't affect my intelligence or my appearance, its not degenerative or contagious. It is just the way my brain works. Because of these differences I need extra support in learning to navigate this Neuro-Typical society which was not built for me. Without the support I I am less likely to be able to achieve my potential but it's not because I 'have' something wrong with me... it's because I am different. I am Neuro-Divergent.
It's just the way I work. Not all the Neuro-Divergent population will agree with this as our opinions tend to vary as much as they do in any other groups within society. We don't all see eye-to-eye but then why would we. We are a diverse group even amongst ourselves.
We need a new CATEGORISATION that Unites us, where people with ALL developmental ND differences can learn about the difficulties, barriers and where they can learn the coping and management strategies used by others who have 'similar' differences to them.
We need easy paths to 'identification' and 'diagnoses' of all ND differences
We need additional support to help us navigate the Neuro-Typical world we live in
We need people to understand that we don't 'have' anything that can be taken from us.
We are just neurologically very different to the majority of the population!