"If I had a pound for every time I'd been asked that question..."
There are certain questions I and other Autistic people find ourselves answering day-in and day-out. Whether I'm on Twitter, or a guest on a webinar, working 121 with a client, or delivering training, it's invariably the same.
And whilst I do my very best to answer the question as best I can, due to time restraints and repeatedly saying the same things, I often find that there was more I wanted to say and more I wanted to explain.
So I have created this page which lists the questions I am asked the most often.
Each question has a brief overview and then a link to a more detailed article along with any other relevant content.
I hope you find it useful and please do keep coming back as I will update this page as often as I can.
Kieran, The Autistic Advocate
Autism is the name of a type of Human Neurology, which includes the Brain and the Nervous System.
Neurology is the process of the human body taking in sensory information, moving it around the body, processing it and then reacting to it.
Autistic people actively process more sensory information than non-Autistic people and that can create big differences in processing speeds, communication styles and how we interpret and interact with the world. There is no negativity or positivity in this, just difference.
Most descriptions of Autism won't tell you this, they're too busy telling you their perception of the negative impacts of Autistic Neurology.
READ A MORE IN-DEPTH DESCRIPTION HERE: What is Autism?
Asperger’s Syndrome is a Diagnosis with a really complicated and confusing back story and a lot of myth and misunderstanding wrapped up with it. There is also a lot of controversy attached to it for many reasons. It was the diagnosis I received aged 23, although I now choose not to associate with it. I'm Autistic.
Asperger's Syndrome is NOT a subtype of Autism, it IS Autism. There are historical political and clinical reasons for there being two diagnostic labels. The article linked below, as briefly as possible, gives full context to this label, which by 2022 will no longer exist as a new diagnosis.
Please read it in full and try not to get caught up on the smaller, more controversial aspects.
READ THE FULL ARTICLE HERE: Asperger's Syndrome: What's in a Name?
Learning Disability, or LD (known as Intellectual Disability in some cases) is an umbrella term for a number of disabilities which impact on someone's ability to learn and interact with the world very much based on their IQ and the world's perception of what is the 'right way' to learn and exist.
Identifiable Learning Disabilities are co-occurring conditions given to between 15-40% of Autistic people (dependant on the research). Those Autistic people are usually the ones slapped with a problematic 'Low Functioning Autism' label, or worse 'Severe' Autism. (See my FAQ on Functioning Labels)
READ THE FULL ARTICLE HERE: What are Learning Disabilities?
The Neurodiversity paradigm is simply a way of understanding that there are many different people in the world with minds that work a little differently to help make them individuals.
Sub-groups of humanity exist whose Neurological function from conception is markedly different from the rest of Humanity, these are called Neurodivergencies (singular: Neurodivergent) and include people who are Autistic, ADHD, BiPolar, Tourette's and so on.
It is also possible to have acquired Neurodivergence. So for example someone who may have been brain damaged in some way, or developed a Disease like Dementia.
PLEASE READ THE FOLLOWING ARTICLE FOR A MORE DETAILED DISCUSSION: What is Neurodiversity?
Co-occurring conditions are simply any stand-alone conditions that you have. When you are Autistic it is likely that you have any of a large number of co-occurring conditions which occur regularly amongst Autistic people. Although 'officially' research states that most Autistic people have one co-occurring condition, anecdotally it's a greater number.
Through my work I have identified over 60 different co-occurring conditions, some present from birth and some acquired, these range from the obvious like ADHD, Dyslexia and Dyspraxia, to lesser well known ones such as Hyperlexia, Alexithymia and C-PTSD
Masking is a psychological safety mechanism made up of layers of physical and social complex actions which an Autistic person uses consciously and unconsciously to ‘fit in’ and self-protect in an endless variety of differing situations and environments.
This happens by applying, in fluctuating degrees, often uncontextualised and sometimes rehearsed, learnt behaviours to appropriate situations; whilst simultaneously suppressing both natural behaviours and self-identity.
All this happens partly consciously with, over time, the person dissociating from the act; and partly subconsciously: pre-emptive, reactive and unplanned; And all at great mental and physical cost.
It's common amongst Autistic children and Adults and often is cited as one of the reasons that Autistic children are unidentified and not properly supported within schools. The phrase "They're fine in school." is often used by teachers in reference to pupils who Mask.
Autistic Masking is now being recognised as a factor in the high suicide rate amongst Autistic people and is an identifiable factor in Autistic Burnout.
PLEASE READ THE FOLLOWING ARTICLES FOR A MORE DETAILED DISCUSSION:
One of the knock on effects of being Autistic in a world not designed for Autistic people, is how exhausting it is. Constantly combatting sensory overload, communicating in ways not conducive for you, Autistic Masking, all takes up huge amounts of energy. That adds up over time and leads to what is known as Autistic Burnout.
It's similar in physical expression to Clinical Depression and is starting to be identified with Autistic 'regression'.
PLEASE READ THE FOLLOWING ARTICLE FOR A MORE DETAILED DISCUSSION: An Autistic Burnout
PLEASE WATCH THE FOLLOWING VIDEO FOR A GREATER UNDERSTANDING:
Sensory information in integral to all humans ability to live. Without sensory any sensory information we would die.
All that sensory information is taken into the human body through the senses via the central Nervous system. Although there are many sub senses there are 8 main ones which include: sight (Visual), taste (Gustatory), touch (Tactile), smell (Olfactory), hearing (Aural), balance (vestibular), internal messages (interoception) and body awareness (proprioception).
The Nervous system is intrinsically part of the neurological system, so differences in sensory interpretation are very much at the heart of what makes Autistic people different from non-Autistic people.
Autistic people take in more sensory information and often at different rates to non-Autistic people.
Humans help themselves to regulate this information through self-stimulatory behaviour, these are repetitive movements or repetitive (verbal or mental) vocalisations. Autistic people call this Stimming and because we take in and process so much more information, our Stimming can be more noticeable and take the form of things like handflapping, jigging, making noises, singing and dancing and much more
PLEASE READ THE FOLLOWING ARTICLE FOR A MORE DETAILED DISCUSSION: An Autistic frequency
Meltdowns and Shutdowns are overwhelm and trauma responses to a combination of too much sensory information and dysregulated emotions (including frustration, anger, sadness, happiness and excitement)
A meltdown is an externalised physical response, a Shutdown is an internalised physical response.
Neither of these things is a tantrum or 'challenging' behaviour, as neither is a choice. Nor do either have an intended outcome. Though tantrums can lead to Meltdowns.
Many parents struggle with their Autistic children's education and the Education system generally. There many reasons for this, ranging from poor quality Autism education and the way the education is set up.
PLEASE READ THE FOLLOWING ARTICLE FOR A MORE DETAILED DISCUSSION: An Autistic Education
PLEASE VISIT MY PARTNERS PAGE FOR SPECIALISED SUPPORT SERVICES INVOLVING EDUCATION IN THE UK
Finding other Autistic people is imperative to finding yourself. There are supportive Autistic communities Social Media from whom you can learn about Autism from an inside perspective.
Often you'll find that the Autistic understanding of Autism is VASTLY different to the Professional understanding. There are many reasons for this which are described in the articles linked below.
Also if you visit my Partners page, there are links to organisations and services which can support Autistic people around employment and family support.
Please be aware that understanding of Autism outside of the Autistic community is limited and that good services are few and far between.
PLEASE READ THE FOLLOWING ARTICLE FOR A MORE DETAILED DISCUSSION:
There are many and various barriers to diagnosis fro both adults and children, but if you are willing to seek one, the first place to start is your General Practitioner. I would always advise gathering as much evidence as possible around the diagnostic criteria.
For children the process generally involves a multi team assessment involving a Practitioner, Speech and Language Therapist (Pathologist), a Psychologist and partaking of ADOS (an assessment tool).
For adults it usually involves just a Psychologist and ADOS.
For both it's important to evidence not only the now, but historically, as the criteria and process rely on showing that 'defecits' (as they are described) have existed from birth and aren't the result of specific trauma.
The diagnostic criteria is very pathological and views Autistic people through a behavioural lens whereby it actively seeks anxiety behaviours. It can be difficult viewing yourself like this and this is one of its greatest flaws.
PLEASE READ THE FOLLOWING ARTICLE AND WATCH THE FOLLOWING VIDEO FOR A MORE INFORMATION AND VISIT OUR PARTNER PAGE FOR SPECIFIC SUPPORT:
Adults: An Autistic diagnosis
The Jigsaw piece has a controversial and difficult history when it comes to Autistic people.
It was first used in connection with Autism in te 1960's by the UK's National Autistic Society, a parent organisation, to represent what was missing from their children. The multi-coloured jigsaw pieces (and ribbon) were then adopted by other Autism organisations. The colours are very bright and represent children.
Autism Speaks, a huge controversial American charity who were formed to prove that vaccines cause Autism and have continued with cure, used a blue jigsaw piece for their logo and now that colour has also become synonimous with Autism.
For many Autistic people the jigsaw piece is a symbol of EVERYTHING that is wrong with the Autism narrative and why such inequality exists
PLEASE READ THE FOLLOWING ARTICLES FOR MORE INFORMATION:
The language used around Autism and Autistic people is really important.
Things like functioning labels which can create expectations and assumptions around competence and set people up to fail and of course the argument around whether it is best to say Autistic or a person 'has' Autism.
The Autistic community advocates generally for the removal of Functioning Labels and for the use of Identity First Language. (EG. I'm Kieran, I'm Autistic)
PLEASE READ THE FOLLOWING ARTICLE FOR A MORE DETAILED DISCUSSION:
Kieran is a mentor and most importantly a true friend.
He has sat through more versions of The Life of Reilly play than I can count and always provided feedback with an insight that is direct, compassionate and utterly spot on.
Life of Reilly, UK
Since becoming involved with NEAS Kieran has helped the whole charity have a complete mind shift on how we support Autistic people.
We are now 'Going for Gold', we have banned jigsaw pieces and we acknowledge that shifts need to be made in the services we provide.
North East Autism Society, UK
Kieran speaks with warmth and genuine experience which is hard to ignore.
He is a man who wants to make the world a better place for those with complex needs and that starts with educating people.
Best Selling Author, UK
In summer 2018 Kieran launched a major campaign to educate people about Autistic Masking.
It reached across the world, was featured on national news and brought together a diverse range of #ActuallyAutistic adults to discuss Masking.
Two years on it continues to have an impact and a summer 2020 campaign is planned.
This article is a deep dive into the importance of Identity and how the medical model of Autism and societal views towards Autism have a huge negative impact on Identity.
I'm talking to anyone who cares to read and wants to understand why Autistic people are being broken upon the back of the wheel of society. I’m talking to all of you.
I asked the Autistic Community how Masking affects them.
This blog is the Autistic Community speaking.
It is a cry for help. A cry for understanding. A cry for Acceptance.
Heed us please.
You’re breaking us. Every day. One piece at a time until there is nothing left.
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