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Raising neurovergence

Raising neurodivergence is a project being born out of a desperate need for change. The way that neurodiversity is discussed and portrayed in our society, and the education and support that is available, is insufficient and unacceptable. There is a huge lack of understanding, and neurodivergent people are being let down in every possible way. I want to work with others to change the way people understand neurodiversity, and to ensure that the recognition and support for neurodivergent people allows them to live freely and equally, their best lives. 

Why bother?

Autism doesn’t need awareness anymore. People are aware of it. They are aware of all the other “conditions” too. What they are also are is, largely uneducated about what these really are, prejudiced about the people who “have” them, and at best unaccommodating to them, if not down-right offensive and abusive in some cases. However, the problem in essence does not lie with the individual, though they all make, and are responsible for, their choices. It lies with a system of inequality, based on fear, insufficient education, and a lack of empathy. This system must change.

We need to insist upon the proper definition of neurodiversity and neurodivergences, and the proper education of society regarding these, and the huge benefit that diversity provides. This will lead to the proper acceptance of neurodivergent people as, not just equally valuable, but an important factor in a successful society. Alterations and accommodations will then become standard practice to ensure that all people are able to thrive and therefore contribute their immense worth to society.

Wouldn’t it be better if?

I want to scrap all the ideas of any categorisation of neurodivergence at all, and simply recognise (notice I did not use the word diagnose) someone as neurodivergent and then work with them to develop their own unique profile that helps them and others create an environment around them that maximises their chance of meeting their needs and achieving their goals. I mean, I believe everyone needs this, but it is important to recognise that society has been built for people whose brains work in a particular way to thrive, and so additional alterations and accommodations will be necessary to support neurodivergent people to thrive equally.

However, I think we are a way off persuading any powers-that-be that all their labels are shit and unhelpful, even though it’s true. So what could we hope for in the shorter term?

ok what about in the mean time?

​For the time being, I would settle first for some consensus around what constitutes neurological difference, rather than this being very muddled up with mental health conditions, behaviour and mood disorders, learning difficulties (not specific) and attachment problems, among others most likely.

My personal view right now, based solely on my current knowledge and not on peer-reviewed research, is that these current “so-called conditions” would be included in some way as neurodivergences: Autism, Aspergers, PDA, ADHD, ADD, SPD, OCD, Dyslexia, Dyspraxia, Dyscalculia, and Dysgraphia. I would like to see these defined by more appropriate titles and appropriately categorised.

I mean the concept of the labels is rubbish enough but don’t even get me started on the actual names of them – they are just wrong!

As I see it, we have a massive problem

Disorders, disabilities, conditions, profiles, and spectrums…. oh my!

​​Currently, neurodivergences are collated into the categories as we have seen above and labelled as disorders, disabilities, conditions, spectrums and profiles. There are multiple issues with this situation. The first of which is that to any outsider, it is extremely confusing. Trying to make yourself more knowledgable is made harder by these labels, some of which relate to the same thing because people have tried to improve the label. The second, and somewhat more important problem to the insider, is that most of these terms describe an ND person as deficient in some way.
​
They are not. They are just different (divergent from the norm).

The next problem is that the categories often overlap and interact a great deal because the conditions or categories that have been created are trying to put things into neat “boxes” that cannot necessarily be boxed, not to mention that these boxes are often created by neurotypical brains. You will therefore, often find people who are diagnosed with multiple conditions to try and describe their unique neurodivergence.

Many of the labels do a really poor job of describing what is experienced and actively contribute to misconceptions and discrimination against the person who has to wear that label. For instance, PDA is labelled only by it’s most difficult displayed behaviour and ADHD, is labelled very unclearly seemingly stating someone has either deficit of attention or hyperactivity or both, when someone with ADHD has non of those things. 

These are major problems that need to be addressed both with a long term strategy and with an understanding that it will take time and stepping stones to get there. This needs to be a project that is directed by neurodivergent people with the assistance and cooperation of neurotypical people who are truly allied to our cause.

Re-aligning the autism spectrum

Autism and Aspergers

I personally agree, for once, with the powers-that-be, that the distinction between Aspergers’ and Autism is out-dated and potentially harmful. From research, the Aspergers profile is predominantly defined by an increased intellectual ability, and an increased ability to conform to some typical social communication and interaction. Their language use is usually normal enough, despite difficulties in comprehension and eye contact, or the ability to make false eye contact (looking at eyebrows, nose, mouth) is usually managed. For this reason it is commonly accepted that people with Aspergers are often identified later, when social communication and interaction becomes more complicated. There are two problems with this:

The first is that the profile is differentiated by a perceived lower severity or visibility of some of the difficulties experienced by autistic people. It has therefore become synonymous with a form of Autism where people “appear normal”, and is now confused as being a “milder” or a “High-Functioning” form of Autism. This has meant that society views Aspie’s as not needing support due to their profile being more acceptable to society, and some people feel that it is not “real” Autism.

Secondly, this separation implies that people who are labelled Autistic, rather than Aspergers, cannot be intellectually capable or intelligent, cannot make eye contact, do not speak and cannot live without significant support. This leads to a truly stereotypical and negative view of Autism. I see these as two important reasons for what was previously described as Aspergers’ to be understood as part of the spectrum of presentations of the Autistic neurotype.

Please note that my opinion should never take away from someone’s right to personally identify as they choose. If you prefer to identify as Aspergers or Aspie then I completely respect that.

Autism and PDA

Here is where I disagree. PDA, unlike Aspergers, has key defining features that have nothing to do with severity or visibility of difficulties. My view therefore is that PDA, like ADHD and others, is its own neurotype, distinct from the Autistic neurotype, yet still clearly a neurological difference. PDA undoubtedly has it’s own spectrum of presentations. I feel that it is essential to separate PDA as a neurotype, because the features of it do not confirm to the understanding of Autism and the way that PDAers must be supported is so distinct. All of these neurodivergences (including ADHD, SPD, SLD, OCD) do share common difficulties including with sensory regulation, emotional regulation and executive function.

categorising and labelling other neurotypes

Now I would definitely prefer to just label everyone as neurodivergent and then pick and mix to create individual profiles but assuming that for now we need to keep these categories in place, I would like to address the following issues:

PDA

As above

ADHD

Specific learning dificulties

The rest

I need to apologise because I have not yet learned enough about Obsessive Compulsive Disorder, Sensory Processing Disorder or any other conditions that I have missed to write this section. I will, but I did not want to wait on the whole section, which I believe people may find helpful, until I have done this research. Rest assured that it will come. If you have any information, or know of any resources that you think I would find helpful, please contact me.

In the new world

I am hoping to see a future that not only accepts neurodiversity but celebrates neurodivergent profiles. I feel that it is completely possible for more awareness to lead to a more inclusive environment for all. I also hope that in the future, when people with divergent neurology seek support in our society, they will simply be recognised as such, instead of there being any need for using words like disorder or condition, or even difficulties, even though people may experience them.

I would like to see people identified as neurodivergent, where appropriate, and for each ND individual to have an individual profile that identifies areas of strength and areas in which they may need support. I think it would be useful for there to be a universally agreed, ND created, language for these, and for them to be represented either in words or visual symbols. My intention is to display some possible examples of these below. Please bear with me…

How can we include children?

Do you want to raise neurodiversity with me?