The ND future
Please note: this page is incomplete and still in draft.
Click here to learn more about neurodivergence
Raising neurodivergence
Raising neurodivergence is a project born out of a desperate need for change. The way neurodiversity is talked about and portrayed in our society, and the education and support that exists, is insufficient and unacceptable. Understanding is badly lacking, and neurodivergent people are being let down in every possible way. I want to work with others to change how people understand neurodiversity, and to make sure that recognition and support let neurodivergent people live freely, equally, and at their best.
Why bother?
Autism does not need awareness any more. People are aware of it. They are aware of all the other “conditions” too. What they are not, largely, is educated about what those things actually are. They are prejudiced about the people who “have” them, and at best unaccommodating, and in some cases openly offensive and abusive. The problem, though, does not come down to individuals, although everyone makes their own choices and is responsible for them. It comes down to a system of inequality built on fear, poor education and a lack of empathy. That system has to change.
We need to insist on the proper definition of neurodiversity and neurodivergence, on proper public education about them, and on recognition of the enormous benefit that diversity brings. That is what will produce proper acceptance of neurodivergent people — not merely as equally valuable, but as an important factor in a society that works. Adjustments and accommodations then become standard practice, so that everybody can thrive and contribute what they have to give.
Wouldn't it be better if?
I would like to scrap all the ideas of any categorisation of neurodivergence entirely. Simply recognise — note that I did not say diagnose — that someone is neurodivergent, and then work with them to build their own individual profile. A profile that helps them, and the people around them, create an environment around them that maximises their chance of meeting their needs and achieving their goals. I think everybody needs that, frankly, but it matters to recognise that society was built for people whose brains work in one particular way, and so alterations and accommodations will be necessary to support neurodivergent people to thrive equally.
That said, we are a long way from persuading anyone in power that all of their labels are shit and unhelpful, true as it is. So what could we hope for sooner? In the meantime, I would settle for some consensus on what counts as a neurological difference, instead of the current muddle with mental health conditions, behavioural and mood disorders, general learning difficulties and attachment problems, among others.
My own view, right now, based on my current knowledge rather than peer-reviewed research, is that these “so-called conditions” belong somewhere within neurodivergence: autism, Asperger's, PDA, ADHD, ADD, SPD, OCD, dyslexia, dyspraxia, dyscalculia and dysgraphia. I would like to see them carrying more appropriate titles and sitting in more sensible categories.
The concept of the labels is bad enough. Don't get me started on the names themselves. They are simply wrong.
As I see it, we have a massive problem
Disorders, disabilities, conditions, profiles, and spectrums… oh my!
Right now neurodivergences are gathered into the categories above and labelled as disorders, disabilities, conditions, spectrums and profiles. This creates several difficulties. The first is that, to anyone outside, it is deeply confusing. Trying to educate yourself is made harder by labels like these, some of which describe the same thing because someone tried to improve the wording. The second problem, and the more important one to those of us on the inside, is that most of these terms describe an ND person as deficient in some way.
We are not. We are simply different — divergent from the norm.
The next problem is that the categories overlap and interact constantly, because the boxes were built to hold things that cannot really be boxed, and the boxes were mostly built by neurotypical brains. Which is why you so often meet people diagnosed with several conditions at once, in an attempt to describe their particular neurodivergence.
Many of the labels do a poor job of describing the actual experience, and actively feed misconceptions and discrimination against the person who has to wear them. PDA, for instance, is named after its most difficult visible behaviour. ADHD is named so vaguely that it seems to claim a person either lacks attention or is hyperactive, or both, when a person with ADHD has neither.
These are serious problems, and they need both a long-term strategy and an acceptance that getting there will take time and stepping stones. It needs to be a project led by neurodivergent people, with the help and cooperation of neurotypical people who are genuinely allied to the cause.
Re-aligning the autism spectrum
Autism and Aspergers
For once I agree with the powers that be: the distinction between Asperger's and autism is outdated, and potentially harmful. Research suggests the Asperger's profile is largely defined by higher intellectual ability and a greater ability to conform to typical social communication and interaction. Language use is usually normal enough, despite difficulties with comprehension and eye contact, or the ability to fake eye contact by looking at eyebrows, noses or mouths. That is why people with Asperger's are often identified later, once social communication gets more complicated. There are two problems with this.
The first is that the profile is separated out on the basis of a perceived lower severity, or lower visibility, of some of the difficulties autistic people have. It has therefore become synonymous with a form of autism where people “appear normal”, and is now confused with a “milder” or “high-functioning” autism. Society concludes that Aspies do not need support, because their profile is more acceptable to it, and some people decide it is not “real” autism at all.
Secondly, the separation implies that people labelled autistic rather than Asperger's cannot be intellectually capable or intelligent, cannot make eye contact, do not speak, and cannot live without significant support. That produces a deeply stereotyped, negative view of autism. I see both as strong reasons for what used to be called Asperger's to be understood as one of the presentations of the autistic neurotype. My opinion should never take away anyone's right to identify as they choose. If you prefer Asperger's, or Aspie, I completely respect that.
Autism and PDA
Here I disagree. PDA, unlike Asperger's, has defining features that have nothing to do with severity or visibility. My view is that PDA, like ADHD and others, is a neurotype of its own: distinct from the autistic neurotype, and still plainly a neurological difference. PDA certainly has its own spectrum of presentation. Separating PDA out matters, because its features do not fit the current understanding of autism, and because the way PDAers have to be supported is so different. All of these neurodivergences, ADHD, SPD, SLD, OCD included, share common difficulties with sensory regulation, emotional regulation and executive function.
Categorising and labelling other neurotypes
What I would really prefer is to label everybody neurodivergent and then pick and mix to build individual profiles. Assuming we are stuck with the categories for now, though, there are issues I want to address.
PDA
As above.
ADHD
Specific learning difficulties
The rest
I have to apologise here: I have not yet learned enough about Obsessive Compulsive Disorder, Sensory Processing Disorder, or the other conditions I have missed, to write this section. I will, but I did not want to hold back the rest of the page, which I think people may find useful, until the research is done. It will come. If you have information, or know of resources you think I would find helpful, please contact me.
In the new world
I hope to see a future that not only accepts neurodiversity but celebrates neurodivergent profiles. I think it is entirely possible for greater awareness to produce a more inclusive environment for everyone. I also hope that, in that future, when people with divergent neurology ask for support, they will simply be recognised as such. No need for words like disorder, or condition, or even difficulties, though people may still experience them.
I would like to see people identified as neurodivergent where that is appropriate, with each ND person holding an individual profile that names their areas of strength and the areas where they may need support. It would help to have a universally agreed, ND-created language for those, represented in words or in visual symbols. I intend to show some possible examples below. Bear with me.