Autism

Overview

Autism is a lifelong neurodevelopmental condition affecting how individuals communicate, interact, process information, and experience the environment around them. Characteristics include differences with social interaction and communication, engaging in pattern seeking activities or behaviours, difficulties with transitions between tasks, being detail focussed, and sensory differences.

It’s considered a dynamic disability, because an individual’s capacity and functioning can fluctuate, meaning they may be capable of a task one day, but unable to perform it the next. It is not an illness or a disease, and is independent of intelligence or having a learning disability. However, it often co-occurs with learning disabilities and other neurodevelopmental conditions.

Autism Spectrum Disorder (ASD) is the official diagnostic medical term, although many practitioners prefer to use ‘Autism Spectrum Condition’ (ASC) as it sounds less deficit based.

The ‘spectrum’ referred to in ASD:

  • isn’t a linear spectrum which might include ‘not autistic’ or ‘a little bit autistic’ at one end, with ‘very autistic’ on the other
  • is specific to being autistic
    i.e. it is the autism spectrum, so not everyone is ‘on the spectrum’
  • describes the variety of differing traits and support needs an autistic person may have

It’s important to consider that each autistic person will have a unique profile of traits and experiences. This is idea is illustrated by the following quote (commonly cited from Steven Shore’s work and presentations, including his autobiographical book Beyond the Wall, 2001):

If you’ve met one person with autism, you’ve met one person with autism

Further reading:

Autism Spectrum Models

Some people find it helpful to visualise the spectrum in the form of a ‘spiky profile‘ graphic.

This Understanding the Spectrum cartoon by Rebecca Burgess (Instagram: @theorahart) explains different interpretations of the ‘Autism Spectrum‘, and the effects that has. It introduces an alternative spiky profile wheel and the idea that traits can be influenced by circumstances and situations.

TWO: Aucademy bitesize: Autistic basics: The Autistic spectrum, really, Aucademy
Duration: 20 minutes and 18 seconds
In this video, Dr. Chloe Farahar discusses different models of viewing the ‘Autism Spectrum’, including the linear spectrum, spiky profile, a ‘rainbow sausage’, and a three-dimensional Autistic space model (Farahar & Foster, 2018). These models provide a richer way of understanding how autistic experiences and support needs can change over time.

Terminology

Language surrounding autism changes over time, and it’s a personal choice how people wish to be identified.

When someone expresses a certain preference for being identified a certain way, it’s important to respect that in a similar way that their preferred name would be respected when addressing them.
For example, some people prefer to use their first names in full, others prefer abbreviated nicknames, and some names can be abbreviated in different ways. It would also likely make someone feel uncomfortable if they were addressed formally by title and surname, in informal settings.

Different ways of describing someone being autistic include:

  • Asperger’s / Asperger’s syndrome – This is no longer an official medical diagnoses, having been replaced in 2013 by the DSM-5 as Autism Spectrum Disorder (ASD) Level 1.
    Some autistic people identify as having Asperger’s or being an ‘aspie’. Some choose not to identify using this term due to Hans Asperger’s connection with the Nazis.
  • being autistic – identity-first language
    E.g. ‘Autistic person’.
    Most people in the autistic community prefer to identify this way.
  • having autism – person-first language
    E.g. ‘Person with autism’.
    Some autism training recommends using this terminology, with good intentions of seeing the person before the label. However, most autistic people don’t like this as they feel that autism is a part of them, and not something separate, like an illness.

These days, diagnoses often don’t specify ‘type’ or ‘severity’ of autism, and different people will have different strengths and challenges. Nonetheless, some phrases used to describe ‘severity’ include:

  • high support needs / low support needs – these terms are generally preferred over functional labels. Some people dislike the phrase ‘low support needs’, as it can be perceived as meaning ‘no support needs’. Other limitations with these labels are that they don’t reflect the spiky profile nature of support needs, the dynamic nature of autism, circumstances, or environmental factors.
  • high functioning / low functioning – these descriptions are considered more outdated, with a preference for referring to support needs instead. Referring to an autistic person as ‘high functioning’ can be seen to minimise the impact of challenges or need for support.
  • Levels – Autism levels (1-3) in the DSM-5, provide classification according to levels of support needs. Generally, these mean:
    • Level 1 – requiring support
    • Level 2 – requiring substantial support
    • Level 3 – requiring very substantial support

Recommended Organisations

Autism Central

Website: Autism Central
YouTube: @AutismCentralLearn

Autism Central is the National Peer Education Programme for families and support networks of autistic people in England. It is delivered by Anna Freud and commissioned by NHS England.

They offer education, coaching, resources, one-to-one peer support, and events.

Anna Freud

Website: Anna Freud
YouTube: @AnnaFreudNCCF

A mental health charity which provide resources and training to support children, young people, families, communities, educators and mental health professionals.

They provide free training and events, led by people with lived experience.

Leeds Autism AIM

Website: Leeds Autism AIM

Leeds’ Free Advocacy and Information Service for Autistic Adults, who receive little or no funded support. They are part of The Advonet Group, an independent advocacy charity in Leeds.

Leeds Autism AIM provides a wealth of really useful information, resources and downloadable self-advocacy tools.

Aucademy

Website: Aucademy

An autistic-led educative platform comprised of autistic academics, researchers, teachers, speakers, trainers and advocates.

The “START HERE!” menu option from their landing page is recommended, which provides a wealth of useful information, including learning more about:
autism, PDA, EHCP, mental health, and workplace adjustments.

  • Autism
  • ADHD
  • PDA
  • EHCP
  • Mental health
  • Workplace adjustments
  • Checklists

Embrace Autism

Website: Embrace Autism
Instagram: @embrace.autism
Facebook profile: /EmbraceAutismInc

Embrace autism is autistic-led, research-informed, using evidence-based methods in their approach.

In addition to providing screening and assessment services, they provide a wealth of articles and free psychometric tests, which can help with self-discovery before considering a formal diagnosis.

Autistic Realms

Website: Autistic Realms
Instagram: @autisticrealms
Facebook profile: /autisticrealms

Autistic Realms provides consultancy, training, and excellent information and signposting of resources, in particular for monotropism and autistic burnout.

Helen Edgar, the founder of Autistic Realms is a late-identified AuDHD (Autistic and ADHD) write, educator and parent of neurodivergent children. Helen authored the original “Map of Monotropic Experiences“, which has since been widely reshared.

Autistic Realms is active across social media platforms and their posts are very informative and well presented.

Stimpunks

Website: Stimpunks

Stimpunk describe themselves as “Mutual Aid and Human-Centred Learning for Neurodivergent and Disabled People”.

Their content is excellent. They are responsible for some widely shared and well-known content, including the “Map of Monotropic Experiences“, which was done in collaboration with Autistic Realms.

Recommended Individuals

Neurodivergent Lou / Lou Chandler

LinkedIn profile: Lou Chandler
Instagram: @neurodivergent_lou
Facebook profile: /Neurodivergent_lou-100091534964212

Lou is an award-winning writer, speaker, creator and lived experience expert in neurodivergence and mental health.

Lou creates content on Instagram reaching over 3 million people monthly, supporting neurodivergent people. She also works with, and consults for various well known organisations and brands.

Lou’s content is very insightful, informative and accessible.

Pete Wharmby

Website: Pete Wharmby
LinkedIn profile: Pete Wharmby
Instagram: @pete_wharmby_books
Facebook profile: /Petewharmbyauthor

Pete Wharmby is a Neurodiversity author, speaker and advocate, who is active on social media. Pete consults for, and collaborates with many high profile organisations, including Anna Freud mental health charity and AUsome Training.

Pete is author of the following recommended books:

  • Untypical: How the world isn’t built for autistic people and what we should all do about it
  • What I Want to Talk About: How Autistic Special Interests Shape a Life

VIV DAWES Autistic Advocate

Website: Viv Dawes Autistic Advocate
Facebook profile: /aldershotautisticambassador
Instagram: @vivdawesautistic

Viv is a neuro-affirming, LGBTQIA affirming, anti-racist and trauma informed advocate, trainer, consultant and author.

Viv has over 30 years experience working with vulnerable neurodivergent people, including as a Senior NHS Practitioner. She started the Autistic Burnout Network, and offers a variety of resources to support adults, parents and PDA.

Viv is active across social media platforms, and regularly shares insightful and informative posts.

The Autistic Advocate

Website: The Autistic Advocate
Instagram: @theautisticadvocate
Facebook profile: /theautisticadvocate

Kieran Rose is an author and an autistic advocate, who writes about his experiences as an autistic person.