Spoons, Spins and Stims - A handy guide to the language used by the Neurodivergent Community
When you find out that your child (or indeed you) might be neurodivergent, it can be very confusing as you suddenly find yourself confronted with vast amounts of terms that you had probably never heard of before. From neurodivergent to Spoon Theory, and ableism to regulation, everything seems to be a different use of English from what you might be familiar with. Never fear, we are here to try to explain some of this to you (like a glossary but hopefully more interesting!)
Neurotypical, Neurodiverse and Neurodivergent.
‘Neurodiversity’ means that humans are all different in how we think, feel and learn. That’s because all our brains process information in different ways.
Some people are neurotypical. Neurotypical people are different from each other in all sorts of ways, but the way their brains process information is pretty similar.
Other people are not neurotypical. Their brains process information in different ways from neurotypical people. They are different from each other in lots of ways. They are neurodivergent.
Types of neurodivergence include autism, dyslexia, attention deficit disorder (ADHD), Tourette’s syndrome, dyspraxia, dyscalculia, language disorder, social communication disorder and more. You may have a combination of a few of these. And sometimes you can have neurodivergent traits caused by other things.
You can find out more by visiting our web page about Neurodiversity.
Still feeling confused? Then this fantastic graphic from I CAN Network Ltd explains these terms beautifully:
Functioning labels in autism
This can be a difficult one to discuss. The problem is that autism and other neurodivergences can occur alongside an intellectual disability. However, not all people are intellectually disabled, and so this can cause a lot of problems of knowing what to say and the right way to say it. Sometimes you will hear people refer to ‘high-functioning’ or ‘low-functioning’, or variations thereof. In other parts of the world, such as the USA, an autism diagnosis is given alongside a ‘level’ – level 1 being the least severe and level 3 being the most. This is supposed to give an indication of the person’s support needs, but unfortunately a lot of autistic people feel that this is minimising the struggles of those who are deemed at ‘level 1’ / ‘high functioning’, whilst ignoring the capabilities or potential of those who are placed at levels 2 or 3 or ‘low-functioning’.
As autism can fluctuate in terms of needs, a person could be anywhere between those two extremes, possibly on the same day depending on circumstances. Most of the adult autistic community are generally very negative about functioning labels, and try not to use them, although they are still being used in medical circles. There is also the feeling that it makes it sound as if some people using the higher-functioning type terms are trying to say that they are better or cleverer than others, which can cause some bad feeling as well.
Bristol Autism Support have written an article about Functioning Labels, which may be of interest.
Asperger’s Syndrome (and other variants such as Asperger's or Aspie)
This relates partly to the discussion above on functioning labels, as Asperger’s (now no longer a separate diagnosis from autism) was used to describe a person who had autistic traits without language impairment which would have been needed for a ‘classic’ autism diagnosis. This has led to some bad feeling in the autistic community in the same way as functioning labels have.
Another reason for this being a term which is not used by autistic people is due to the man behind the name. Hans Asperger has been found to be a controversial figure, as although he ‘discovered’ autism, he may have had a role during the Second World War in deciding which children under his care were deemed disabled and which could pass as non-disabled. The disabled ones were taken away by the Nazis. Not surprisingly, since this came to light in recent years, a number of autistic people do not want their diagnosis to be in any way linked with Hans Asperger. The diagnosis of Asperger’s Syndrome has been phased out in most parts of the world, and replaced simply with a diagnosis of autism.
You may be interested to read what Wikipedia has to say on the subject.
This is the term used by the neurodivergent community to describe discrimination by someone on the basis of a person’s perceived lack of capability – through disability or other impairment. On a par with racism, sexism, etc.
Bristol Autism Support have written an article about Ableism, which you might find helpful.
Person-first vs Identity First language
This can be a tricky one as different individuals have different preferences. In the autistic community, there is definitely a preference towards Identity first – in other words, saying ‘autistic person’ rather than ‘person with autism’.
In other circles, for example when people are trained to work with autistic individuals, they are taught to say ‘person with autism’. This can create a clash of understanding. With other neurodivergences, it appears less clear cut – for example, if a person has ADHD or Tourette’s Syndrome.
Probably the best thing to do is just ask the person what their preference is (if they have one).
Terms relating to Sensory needs
A little bit about sensory perception:
Neurodivergent people often get to see, hear, feel and taste things more intensely. They are not imagining it, and they're not over-sensitive. This can feel beautiful, but it can get overwhelming if her senses have to take in too much at once. It's really important to believe what your girl is telling you about how her body feels. If you are neurotypical, she experiences the world through her senses in a different way from you, which may be hard for you to empathise with. But she's not imagining it.
Regulation / dysregulation
Contrary to what you might think, this has nothing to do with rules or directions. In fact, it is to do with the nervous system.
Neurodivergent people often have stronger sensory input than their neurotypical peers, and this can lead to overstimulation, and eventually meltdowns or shutdowns. This state is called dysregulation.
When a neurodivergent person is feeling calm and not overstimulated, they are regulated or in a state of regulation. Different things can help with regulation – for example, bouncing on a trampoline, sitting under a weighted blanket, or anything which activates or calms the senses – it varies from person to person. This is called Stimming.
Stimming is short for self-stimulating behaviour. It is a normal part of the neurodivergent experience, and is necessary to help with regulation. It can be repetitive movements, sounds, actions, or even watching the same thing over and over (in my case, many episodes of Doctor Who!)
Bristol Autism Support have written an article on stimming which you might find interesting.
Sensory seeker / Sensory avoider
Sensory Seeking is a way to describe people who seek out sensory input (examples include jumping, spinning, or other forms of stimming which they find fills a sensory need).
The opposite of sensory seeking is sensory avoidance – e.g. dislike of loud noises, bright lights, or some physical stimuli such as clothing labels. For many neurodivergent people these stimuli can actually be painful or distressing, and even if they are not experienced as such by anyone else, that person’s distress needs to be taken seriously. There is anecdotal evidence that repeated exposure to these stimuli do not result in reduced distress, but in increased masking, which may well have negative consequences later on.
The National Autistic Society have written an article about Sensory Differences, which you may find helpful.
Often in online conversations with autistic adults, you may come across statements like ‘I haven’t the spoons for that today’, or some variation along those lines. This is not referring to literal cutlery, but to a blog post by Christine Miserandino which used spoons as an example of units of energy. There is a summary of it on Wikipedia.
There is also an adapted one written on the Neurodivergent Insights blog which may help you to understand.
Spin / Special Interest
This refers to what have in the past been described by professionals as ‘obsessions’. Think of the stereotype of a boy who likes trains. A neurotypical boy would be described as having a hobby, but an autistic one with the same level of interest would be described as having an obsession. This graphic from Autistic not Weird illustrates this perfectly:
And so does his blog post on the Autistic not Weird website.
The neurodivergent community describe these intense interests as being Special Interests, or Spins for short.
All people, whatever their neurotype, benefit from having others accept and engage with their interests, even if they are not the same as everyone else’s. This boosts self-esteem and helps create a feeling of being able to be their true self with others.
You may also be interested in one of our blog posts, which explains how it feels to enjoy a special interest.
Double Empathy Problem
I discussed this in a previous NeonDaisy blog post about emotions.
In short, the way that neurodivergent people express empathy is different from the way that neurotypical people do. This can lead to misunderstandings on both sides as each misread the other’s meaning and intentions. It is important to recognise that autistic people are not deficient in empathy, but that our outward expression of it may be in a way which is not as easily understood by the neurotypical people around us. The effort to understand one another should be extended both ways. If you have access to Facebook, this post by Neurowild sums it up beautifully.
Helping your Daisy to connect with people they can be their true self with is good for them. Read more on our website about Helping her to find her tribe.
Confusingly, this does not stand for Public Display of Affection, although in conversations with those who do not know, it has occasionally led to some rather entertaining conversations! This actually stands for Pathological Demand Avoidance.
People with PDA experience anxiety induced by needing to make their environment predictable and easier to cope with. This can lead to them being hyper-vigilant as they perceive demands being placed upon them from all aspects of their lives, even internal prompts like being hungry or needing the toilet.
Some people prefer to use the term ‘Persistent Drive for Autonomy’ or ‘Pervasive Desire for Autonomy’, rather than the medicalised ‘Pathological Demand Avoidance’, as they feel it describes them better. Many children with PDA find the traditional model of schooling does not work for them as the structure makes them feel overwhelmed and unable to manage.
PDA demand avoidance is caused by anxiety induced by the demand itself, however it is possible for people to experience demand avoidance outside of PDA. This is caused often by the sensory issues involved in an activity, or some other problem with the environment etc. A good way to note the difference is that with PDA, people often experience anxiety over the demand of doing something that they actually want to do, i.e. attending a birthday party or going to a water park etc. rather than the demand avoidance just being limited to things that may be difficult.
As with all neurodivergences, this does not go away when a person reaches adulthood – and there are a number of insightful pages on Facebook which are written by adults who have PDA – for example, Sally Cat’s PDA Page, and PDA Our Way.
Anything to add?
We hope that you have found these explanations useful. Are there any other terms that you would like explained? Please contact us to ask!
Laura Webb is a director of NeonDaisy