The latest thinking about autism suggests the idea of a single autism spectrum may be misleading, outdated and unhelpful.
A concept which has shaped thinking around autism since the 1980s, the idea of a single autism spectrum, ranging from mild to severe, is now being called in to question by researchers and many people in the autistic community.
Writing for The Conversation earlier this month, Aimee Grant argues that the term ‘autism spectrum’ has “outlived its usefulness.”
Aimee Grant is a Senior Lecturer in Public Health and a Wellcome Trust Career Development Fellow, researching gender, disability and health, at Swansea University. She believes that the idea of a spectrum leads people to think that autistic people can be ranked from “less autistic” to “more autistic,” which undermines the complex nature of autism and the lived experiences of autistic people.
Autism spectrum suggests a ‘single line’ to measure all autistic people
The term ‘autism spectrum’ was coined by Dr Lorna Wing, a psychiatrist whose work was initially considered groundbreaking.
The concept transformed perceptions of autism from a rare, narrowly defined condition to one encompassing a wide range of traits and experiences.
However, Aimee Grant says that the concept can make many people think of a straight line, running from ‘mildly autistic’ to ‘severely autistic.’ This, she argues, is unhelpful because autism “is made up of many different traits and needs, which show up in unique combinations.”
Autism also has links to physical conditions, such as hypermobility. It is these complexities and range of different elements that mean there can be no single line which measures all autistic people.
Working on a similar theme to the ‘autism spectrum’ concept, the American Psychiatric Association’s diagnostic manual suggests there are three different levels of autism, which are based on the amount of support the individual requires. Level 1 is classed as “requiring support,” while Level 2 is “requiring substantial support” and Level 3 refers to an individual “requiring very substantial support.”
Grant argues that this model is still “static” and does not represent the potentially evolving nature of autism, with each person’s needs and the level of support they require often fluctuating over time.
For example, she recently co-authored a research article which demonstrated that significant life stages such as menopause can increase support needs.
Arranging autistic people on a ‘spectrum’ can cause harm
Grant also discusses the Lancet Commission’s use of the term “profound autism” to refer to individuals who require a very high level of support, and the now outdated term “Asperger’s Syndrome” which referred to autistic people with much lower support needs.
Most importantly, she explains:
“Underlying all these debates is a deeper concern that dividing autistic people into categories, or arranging them on a spectrum, can slip into judgments about their value to society.
“In the most extreme form, such hierarchies risk dehumanising those with higher support needs. It’s something some autistic campaigners warn could fuel harmful political agendas.
“In the worst case, those judged as less useful for society become vulnerable to future genocides. This may seem far-fetched, but the political direction in the US, for example, is very worrying to many autistic people.”
Grant points to recent rhetoric from President Trump’s administration about confronting the US autism “epidemic” and the much-criticised, unfounded claims that autism in children is linked to their mother’s paracetamol use in pregnancy.
Recognising autism in all its diversity
Focusing more broadly on our use of language and its meaning, Grant suggests that referring to individuals as being “on the spectrum” can be a way of avoiding the term “autistic.”
Grant writes that this is “well meaning,” but “rooted in the idea that to be autistic is a negative thing. Many autistic adults prefer the words “autism” and “autistic” directly. Autism is not a scale of severity but a way of being. It’s a difference, rather than a defect.”
Finally, Grant concludes:
“Language will never capture every nuance, but words shape how society treats autistic people. Moving away from the idea of a single spectrum could be a step towards recognising autism in all its diversity, and valuing autistic people as they are.”
Oliver McGowan Mandatory Training
First Response Training (FRT) was one of the first training providers in the country to be approved to offer essential training in line with the Oliver McGowan Mandatory Training on Learning Disability and Autism.
They are quality assured to deliver Oliver’s Training through the Quality Assured Care Learning Service from the Department of Health and Social Care and Skills for Care.
The national training provider aims to empower and educate staff to transform their practice by embracing the lived experiences of autistic individuals and those with learning disabilities. Through the collaborative strength of their trios—facilitating trainers and experts with lived experience — FRT aims to inspire lasting change in how individuals are understood, supported, and valued.
If you want to learn more about the Oliver McGowan Mandatory Training Framework, you can book a free consultation with their Project Lead, Perry Leeks, to find out all about the programme and how FRT can address the needs of your organisation and staff.
FRT are hosting a series of open, public Tier 2 courses in London, Manchester and Birmingham in the coming months. You can book a space on any of these courses online now. They also offer open Tier 1 webinar sessions.
FRT have also developed a free-to-download quick guide to the new Oliver McGowan draft code of practice.
This guide explains what the new code of practice means for health and social care providers, how to stay current, and how to meet new legal duties.
You can also download FRT’s free Oliver McGowan Mandatory Training brochure.
Providing an alternative training solution
To offer health and care providers flexibility and choice, FRT have also developed their own Tier 2 Mandatory Autism and Learning Disabilities Training package.
Fully mapped to the core capabilities framework, Oliver McGowan Mandatory Training Code of Practice and externally accredited, this package offers providers an efficient, affordable alternative solution.
Please note that, while fully interactive, this webinar-based training solution does not meet the code of practice’s requirement for the training to be ‘face-to-face’.
The training is designed to meet statutory standards and equip health and social care staff to deliver more empathetic, person-centred support.
A trainer at FRT explains:
“This isn’t just about compliance. It’s a chance to improve outcomes, reduce bias, and truly understand the lived realities of autistic individuals and people with learning disabilities, helping to improve care and support and prevent avoidable deaths.”
You can learn more about how FRT developed this training package here.
For further information on other types of neurodiversity training, visit their webpage or download the brochure.
You can contact FRT via freephone 0800 310 2300, send an e-mail to info@firstresponsetraining.com or submit an online enquiry.