Our Chief Executive, Dr James Cusack calls for a step change for autism diagnosis and support in the UK, so autistic people can access the personalised support that they deserve.
The nine-year journey to my autism diagnosis
When I was 12 years old, I found myself staring at the patterns in my mum’s Renault Clio car seats, completely bemused as to why I was sitting in a car in the middle of the hospital car park. At the same time, my mum was sitting inside a clinical psychologist's room.
It turns out that we were both there because my mum was about to find out I was autistic. It was 1997, and it had already been a nine-year journey to hearing this diagnosis. The wait we endured may be shocking but what is both incredible and appalling is the fact that, 27 years later, things have become worse.
Lengthy waiting lists and patchy support
The number of families waiting and receiving nothing from our health system is staggering. Currently, 183,000 people in England are waiting for a diagnosis. That is the size of Swindon, or enough people to fill Wembley Stadium twice as well as a dedicated fan zone!
As if long waitlists weren’t already a deterrent to seeking a diagnosis, even when you’ve finally made it to the front of the queue, there’s no guarantee that the quality of care you’ll receive is consistent from that of someone in a neighbouring town. Depending on where you live, there are significant discrepancies and inconsistencies in diagnostic rates up and down the country, and many health practitioners find themselves scrambling to be able to offer appropriate next steps for those with an autism diagnosis.
Everyone deserves to understand themselves and be understood by others. Right now, those 183,000 people are being denied."
Increased public awareness and understanding
In many ways, the increase in demand for autism diagnoses is due to an increased public awareness of neurodiversity and improving attitudes towards autistic people. We need to recognise, however, that this relatively recent sensitivity regarding neurodevelopmental differences means even more people realise that they, or someone they love, may be neurodivergent and eligible for additional support or resources.
The UK is leading the way in terms of changing attitudes and reducing stigma towards neurodivergent people. This may lead some people to argue that we are, to some extent, victims of our success. As more people who either start to self-identify or seek diagnosis are referred to autism assessment services, the more apparent it is that the current approach to diagnosis and support in this country is neither sustainable nor fit for purpose.
What needs to change
The goal is simple: we need to make diagnosis a quicker and more empowering experience for autistic people."
For the next government, investing in more of the same won’t cut it. We don’t have the healthcare professionals to deliver diagnoses, even if our health system had the money to invest in more diagnoses, which they don’t.
What is damning is the current failure to innovate and adapt to the circumstances we face, like we have when acute needs are faced in other groups. Not only do we need to be willing to innovate radically. We can’t just say we’d like to do things differently: it’s imperative that any proposed changes to the system need to be underpinned by a commitment to rigorously researching the effectiveness of different approaches to assessment and support.
The goal is simple: we need to make diagnosis a quicker and more empowering experience for autistic people. We also need to recognise that increasing numbers of people are noticing neurodivergence in themselves and others due to improvements in attitudes and better awareness and understanding. That is fantastic, but we need to create the systems that ensure they get the support they deserve. We need to work out who needs what, and the quickest way to get that to them.
It is crucial that we continue to normalise the discussion around neurodiversity. As part of this broader discussion, it’s imperative that we accept that each person’s diagnosis journey will be different. Some people will meet the criteria for autism but may not need to go through a full assessment pathway, whereas others will require significant support.
For the next government, investing in more of the same won’t cut it"
Solving the diagnosis crisis
Living an empowered life, regardless of who you are, starts with being understood and getting the support you need."
It has been 27 years since my own diagnosis and, despite an increased awareness and understanding of autism and what it means to be autistic, inordinate waiting times mean that we seem to be heading backwards, which is extremely disappointing.
But it doesn’t have to be this way. At Autistica, we are committed to supporting the next government to solving the diagnostic crisis facing our country. Living an empowered life, regardless of who you are, starts with being understood and getting the support you need.
With the right support, I feel hopeful that, by the time I reach the 30th anniversary of my diagnosis, we can reduce these waiting lists and offer autistic people the tailored support that they deserve.