Over the past few days, several articles including this one from Dame Uta Frith in the media have discussed false narratives and outdated ideas about autism, including misinformation that autism is being ‘over diagnosed’. Misinformation is hugely damaging and can result in autistic people being dismissed or denied the support they need.

I am proud that at the National Autistic Society, we campaign to challenge harmful misinformation that adds to the discrimination autistic people face. It’s important that any false claims about autism are called out using evidence and corrected.

Autism and ‘subtyping’

Autism is a lifelong neurodivergence and disability and is understood as a spectrum. In the past, people thought the spectrum was a straight line between ‘more’ and ‘less’ autistic, but this isn’t right. Today we understand the spectrum to mean each autistic person has a unique combination of characteristics. Autistic people can be very different to each other, with different sets of strengths and challenges.

Some people have expressed opinions that there are no longer characteristics experienced by all autistic people. This is not true – all autistic people who are diagnosed by a clinical team against strict diagnostic criteria have lifelong differences in communication, behaviours and focused interests compared to non-autistic people.

Autism is complex and it’s simply not possible to fit people into sub-categories, despite how much others might find it convenient. Ideas about further ‘subtyping’ of autism remain entirely theoretical and currently have no clinical value, diagnostic relevance or practical application. We therefore believe that sub-categorising of autism is unhelpful. It could lead to increased discrimination, misinterpretation and can jeopardise access to crucial support. In some cases, it could be used to cut support to people who need it.  

The crisis in diagnosis waiting times

I am hearing increasingly loud, misleading and harmful narratives about autism, including the false claim that autism is being ‘over diagnosed’. But there is no evidence to suggest ‘overdiagnosis’ is happening.

In fact, evidence suggests there is a significant under diagnosis of autism, particularly among women and older people. Research consistently shows more people are seeking an autism assessment and being diagnosed because of increased awareness and understanding of autism.

Autism assessments are carried out by specialist teams of professionals. They have the skills to make professional judgements about someone's social communication, interaction, behaviours and responses and whether they align with the diagnostic criteria for autism. To suggest that people or teachers can diagnosis autism just by meeting someone is absurd.

There is an increase in the demand for autism assessments but a lack of diagnostic assessment services. The impact of this is that we now have more than 254,000 people waiting for an autism assessment in England alone. Nine in ten of those people have been waiting longer than the 13 weeks recommended by the National Institute for Health and Care Excellence (NICE).  

The problem is not ‘overdiagnosis’ – but rather a lack of urgent attention on the growing waiting times crisis and dedicated funding for quality autism assessment and diagnosis services.

Neurodivergence

The term ‘neurodiversity’ includes every single human being, while ‘neurodivergence’ means diverging from what is considered typical. Autism is a lifelong neurodivergence and disability.

Among neurodivergent people, those who are autistic will require specific support or adaptations matched to their strengths and challenges. This must also respect other neurodivergence they may have. At the National Autistic Society, we believe in valuing and respecting people’s individual needs, choices and differences, and that these should be positively and affirmatively supported, not stigmatised.

Women and girls

Historically, it was wrongly assumed that autistic people were mostly men and boys, but we now know that women and girls are more likely to ‘mask’ what is traditionally thought of as signs of autism, making it harder to identify the challenges they face.

I read a recent study published in the British Medical Journal that showed there are comparable rates of autistic men and women, but that women tend to be diagnosed later than men or misdiagnosed.

Misdiagnosed autistic women can develop mental health difficulties, such as anxiety and depression, as a result of a lack of support, being misunderstood, and the exhaustion of masking.

This is why I passionately believe that the experiences of autistic women and girls are not overlooked, and outdated stereotypes and incorrect assumptions are put to rest. Gender should never be a barrier to receiving an autism diagnosis and access to the right support. 

Masking

Evidence shows that masking is a strategy used by some autistic people, consciously or unconsciously, to appear non-autistic. While this strategy can help them get by at school, work and in social situations, it can have a devastating impact on mental health, sense of self and access to an autism diagnosis.

Autistic women and girls and non-binary people may be more likely to mask than autistic men and boys, potentially due to sexism and stereotypes of how certain people ‘should’ behave.

Support for all autistic people

The National Autistic Society is here for the more than 700,000 autistic people in the UK. We will continue to challenge misinformation about autism and campaign for better access to quality autism assessments and tailored support for all autistic people. Our advice is evidence based and follows a rigorous process before it is published – you can find advice, as well as peer-support services on our website.