Things You Need To Know About The ND Community.
At Sensooli, we understand that not everyone knows the right way to say things and everyone has their own preference on how to say things.
Here at Sensooli we encourage discussion and we don’t make people feel bad for using the wrong words or phrases. Because we believe that most people come from a good place and are open to being informed. So when we explain to them that what they have said or the way they have said it could be taken in the wrong context they are happy to learn more.
The Neurodivergent Community is big and it’s growing every day. We have so many advocates around us it can be hard to know which ones to follow. Or which ones are giving out the right messages. As we have said above most people are coming from a good place. So you can rest assured that we are surrounded by good people.
To help you out we’ve put together a handy list of things you need to know about the ND community.
Not everyone is lucky enough or privileged enough to be able to seek out a formal diagnosis. Depending on where you are in the world, the route to diagnosis differs greatly. In some countries, they may not even diagnose some neurological differences, whereas in other countries, the waiting list may be years long. That long wait can cause lots of stress, anxiety and worry. In some countries, you need to pay to get a diagnosis and for some people, this is financially not an option.
Those of us who do have a medical diagnosis know how lucky we are to have this. We know how important knowing who you are and being your true self is. Self- diagnosis is 100% valid and here at Sensooli we value self-diagnosis. We think when looking for a group to be part of it is important for them to also value self-diagnosis. You know yourself better than anyone else!
Why is Language so important in disability and neurodiversity?
Simply put the language we use can reinforce negative stereotypes, or it can challenge them. Sometimes we don’t mean to do this but it can cause offence.
For example, Disabled Person is preferred to persons with disabilities.
When it comes to Autism, the language we use is very important for many people within that community. But don’t get us wrong it isn’t important to everyone and that’s fine. However, we feel if it’s important to the majority then it’s important to try and get it right for the majority.
First there is something called person-first language which is putting the person before the condition or disability. For example – Person with Autism.
Then there is also something called identity-first language which puts the condition or disability before the person. For example Autistic Person.
Now if you’re diabled or neurodiverse you can choose whichever language you prefer and we know that both person-first and identity-first language is used and preferred by different people.
However, if you are not disabled or neurodiverse then we say go with the majority and the majority of disabled and neurodiverse people prefer identity-first language. Respecting this is really important.
To understand more about this check out this very short video by Kit Autie that explains the use of language perfectly – I Have Autism
What are functioning labels?
Functioning labels are the practice of labelling someone as “high-functioning” or “low-functioning.”
These labels were meant to help people understand the level of support an individual may need. All it really did was miss a huge amount of people that needed support with social and emotional difficulties because they were cognitively able.
Some people within our community also believe that using the term high-functioning makes them come across as superior to others – which they are not.
So that’s why you’ll see a lot of people in the community reject functioning labels and consider the autistic spectrum to be more of a continuous colour wheel than a linear spectrum.do not like functioning labels and do not use them.
Every autistic person has strengths and weaknesses and a simple functioning label is not helpful in ensuring you get the support you need. In fact, it has been proven to be detrimental.
Autism Speaks is one of the largest autism organisations in the world. Founded in 2005 it is not well-liked within the autism community. We do not and cannot support Autism Speaks.
Its history shows that it previously did not help autistic people and actually looked to end or “cure” autism. Originally they had no autistic board members, however, after being heavily criticised for this they did add an autistic member. Unfortunately, he later resigned because the organisation had no respect for autistic individuals and he could no longer align himself with their beliefs.
The organisation has also used very questionable marketing and language in the past. In 2016 it refocused its mission and removed the word cure. Whilst this is a step in the right direction there are still plenty of issues with the organisation. This is a great pity because with their reach they could be helping so many people. Here’s hoping they take on board the criticism and feedback from the autistic community and push themselves forward in the right direction.
The Puzzle Piece is the most commonly used and recognised symbol for autism. But do you know the history behind it? And do you know why the majority of the autistic community do not identify with the puzzle piece?
First used by the National Autistic Society in 1963 here in the UK the puzzle piece was actually part of their first logo. It was created by a board member who believed that autism was a puzzling condition. Next to the puzzle piece was a little weeping boy. Displaying that autism as a puzzling condition and a misfortune predominately occurring in male children. We all know that this is an out of date notion.
From this many puzzle piece logos were made including the puzzle piece ribbon. But the most well-known puzzle piece being the blue puzzle piece adapted by Autism Speaks in 2005. Please see the above section for more information about Autism Speaks.
Some autistic individuals have chosen to reclaim the puzzle piece. Although the majority want to scrap it due to it portraying us as puzzles and a childhood condition that is mainly seen in boys.
A more positive symbol for the neurodiverse community is the rainbow infinity symbol. And lots of our community preferring the colour gold for autism acceptance or red.
Here you can read The Abelist History Of The Puzzle Piece
ABA is a type of therapy used to improve or change specific behaviours. This is where the issue lies. Redirecting dangerous and harmful behaviours is important. However, ABA seems to focus on improving and changing our natural autistic behaviours. For example, forcing eye contact or stopping stimming. This is basically saying that our autistic behaviours are wrong and we need to recondition ourselves to fit in with the neurotypical world.
It is a reward-based therapy that has been likened to dog training techniques. ABA can be as much as 40 hours per week for one child. 40 hours a week of teaching a child to mask and not be their authentic selves. So it is not a surprise that many autistic adults who have been through ABA as children have come forward to say that ABA is abuse. These adults have been severely traumatised and are now telling their stories to help parents understand why ABA isn’t what you may think.
I am a neurodiverse parent because I am neurodiverse and a parent. Coincidentally my children are also neurodiverse.
If I wasn’t neurodiverse but my children were I would not be a neurodiverse parent. I would simply be a parent. People do not call themselves neurotypical parents … why would they?
Lots of parents of autistic children call themselves autism moms, autism dads or autism parents. Most parents will do this without a second thought or realising that it could be the wrong way to refer to themselves. By calling yourself an autism parent you are unknowingly taking on your child identity. Unless you are autistic yourself you are not an autistic parent.
A simple way to look at this is if your child was hearing impaired you wouldn’t call yourself a hearing-impaired parent because that means that you yourself are hearing impaired – which you are not. You are a parent of a hearing-impaired child. It’s the same with neurodiversity. Unless you are neurodiverse yourself you are a parent of a child.
This doesn’t mean that you aren’t an amazing parent and you can’t be an amazing advocate for your child. You just can’t use their identity for yourself unless you are prepared for being called out on it by the neurodiverse community.
Stimming is like breathing – just as natural and just as important.
It is very important that we are allowed to stim and should not be stopped. Stimming helps us to self regulate and self soothe our sensory system. The only time you need to worry about stimming is if the stimming behaviours are harmful or dangerous. If they are then you can look at redirecting to safer stims.
Check out Lorraine’s video on redirecting harmful stims here.
For more information on stimming check out our content hub.
There is no cure for neurodiversity. We do not need to be cured we just need to be accepted. Neurodiversity is a neurological difference not a deficit.
You can help stop people selling dangerous treatments by reporting anything you think might be fake.
Products bought in England, Scotland or Wales, call the Citizens Advice consumer helpline on 03454 04 05 06.
Medicines you think might be fake, visit www.fakemeds.campaign.gov.uk.
Adverts for a fake treatment in the media, on a website or on social media, contact the Advertising Standards Authority.
Aspergers Syndrome is no longer an official diagnosis and was removed from the DSM5 in 2013. It is now under the umbrella term of Autism. Whilst this diagnosis was removed a new diagnosis of Social Communication Disorder was added.
There are lots of proud Aspies out there but do you know the history behind the name and why the majority of our community no longer wants to be associated with it?
Aspergers Syndrome was named after Hans Aspergers an Austrian Paediatrician who was part of the Nazi Regime during World War 2. Hans Aspergers collaborated in the murder of disabled children under the Third Reich. He protected children he felt were intelligent but the others were labelled genetically inferior and sent to their death.
So as you can imagine some people do not feel comfortable having a diagnosis named after such a man.
We’ve all heard this myth before right? “Back in my day, we didn’t have ADHD and all that stuff… it didn’t exist…” It can be super frustrating when you hear this ad infinitum, especially when you know it isn’t true. However, research has shown that there are differences between an ADHD brain and a non-ADHD brain.
It even affects how chemicals like dopamine work within the said brain. One of the main parts of the brain affected is the part that focuses on executive functioning, this makes planning, organising and doing tasks difficult.
While people with ADHD can be perceived as lazy because they may not get tasks done as quickly or effectively as other people. This does not mean they are lazy. Many people with ADHD struggle with executive functioning – this means that they struggle with organising and executing tasks (even what some people consider simple tasks) is difficult. They often struggle with multiple steps and it takes more mental energy for them to complete tasks. This can mean they are seen as lazy but in reality, they really want to succeed in the task they are struggling to initiate.
This is simply not true. While it might SEEM like the symptoms of ADHD for example have lessened with age, it’s probably just that the person has found coping mechanisms to deal with their ADHD. Often this takes years of hard work and practice. By saying that they don’t have ADHD anymore can cheapen their success and frankly can be seen as quite insulting.
Things You Need To Know About The ND Community
It is impossible to please everyone. We don’t expect everyone to get it right all of the time. Hopefully, this blog has helped you to understand more about some of the issues we face. And see why there is negativity over certain aspects.
The important thing is to listen to neurodiverse people as they are the experts in neurodiversity. Your children will grow up to be them.
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