Autism and ADHD: a Q&A with Thea Stein

You've spoken a lot in recent months about the impact of autism and ADHD (attention deficit hyperactivity disorder) on the health service and on the people affected by it. Where does your interest in this topic come from?

As the head of a think tank that looks at how to deliver and improve health care, I’m very interested in areas where there are clear problems between the demand for care and the service's ability to provide it. Before this job, I was the chief executive of a trust that was delivering these services – during which time I became increasingly aware there was something really profound going on in terms of changing patterns of need and our ability to respond.

Moving back a few years further still, I was a clinical psychologist by training, and I have an enduring interest in neurodiversity and how society and public services respond. All of these experiences have led to my interest in it, but I’m nonetheless very clear that I don’t come at it as an academic or clinician – more through my own professional experience – and I’m always keen to hear perspectives and input from others on what is such a vital subject.

How big a problem is it?

It's really, really significant. The waiting lists we are seeing for ADHD and autism assessments (for both adults and children) are extraordinary. I've never seen anything like it in any service I've ever been responsible for.

The latest figures on autism waiting times published today are striking, but they’re sadly not surprising any more. As we showed in our analysis last April, the unprecedented rise in demand for NHS autism and ADHD services has completely overtaken the system’s capacity to meet people’s needs. NICE guidance recommends that an autism assessment should start within three months of referral, but today’s new figures show that just 4.6% of those referred had a first appointment within 13 weeks. When we looked at this for our QualityWatch programme with the Health Foundation, we found that nearly half of people with autism (48%) also said that they had not received enough support in the last year from local services to help them manage.

So how much of a mismatch do we have between the demand for autism and ADHD services and the NHS’s capacity to provide them?

It's about as a big a mismatch as you could find. It’s like having a pint glass and trying to pour a gallon of water into it. The glass in itself is not the problem. It's not that the NHS doesn't have good ways of assessing autism or assessing ADHD, or in giving prescriptions or providing care for families, children or indeed adults, because it does. But if your glass can only hold one pint and you’re going to pour a gallon of water into it, it isn’t going to fit.

When did you first notice this explosion in demand?

It had been growing before, but I started to notice it during Covid in 2020, especially among children, when I was responsible for these services across Leeds. From then to 2022, you really started seeing the impact of the growth of the waiting lists. The waiting lists for adults to get an assessment for ADHD, which had been low for years, started growing very rapidly from 2020 too and have continued since.

Are there any differences between men and women when it comes to autism and ADHD diagnoses?

When we looked at this for our QualityWatch programme, we found that, while both sexes have seen a rise in autism referrals over the past few years, the rate of referrals for women has actually increased more in recent years than it has for men – it has nearly doubled since January 2022.

In your experience, how has the situation changed over a much longer period?

There are a lot of women coming forward for diagnosis who are in their 30s, 40s and 50s, who are recognising that as their children get assessed and are diagnosed with autism, they're thinking “but that's me, that’s how I was, that's why I've had some of these challenges in my life”.

So you've got this cohort who never went through the health service at the time – who survived and went through the education system – but who probably had a range of difficulties in their lives and are now seeking a referral. And as that cohort have done that, they've told other people about it, while also seeing high-profile women in the public eye also talk about it. It’s all made people think “maybe this is what's going on with me”.

The history of autism over a longer period is fascinating. It’s been a very culturally embedded concept that goes back many years to terrible old theories – which are thankfully now debunked – that a child was autistic due to a cold and withdrawn mother. There was also lots of stigma around having a diagnosis. Fortunately things are now changing for the better. Such stigma is still there, but it’s less, and that has to be a good thing. It means more people are coming forward.

This feels like it has come to light very quickly. Should the health service have seen it coming?

It’s a fair question and of course hindsight is a wonderful thing, but I don't think the health service could have really seen it coming. There probably was a point earlier in the growth curve where people could have gone “oh my goodness, what on earth are we going to do?” But it's very difficult and the reality is what would you have done and what should you have done?

An important question is also how much of this should be managed and understood by the health service, and how much of it is for society at large. But if you assume for argument’s sake that it should be all on the health service, you’ve got to recruit qualified psychologists, psychiatrists, advanced nurses, mental health nurses, other staff who are interested in this area – all in greater numbers than you've already got qualified anyway. So what would scaling up have meant, especially if you're going to scale up with the current model? That current model is not going to work with the needs and demands that we've got.

What should happen differently?

What some families and individuals want is not only “thank you very much for telling me that my children or I are on the autistic spectrum”, but also “how now should we live? How do I cope with my children's meltdowns? My children’s refusal to go to school, how do I manage that?” But capacity for ongoing support – both for children and adults – is also a problem. There are some fantastic voluntary sector groups in this space but many of them are overwhelmed.

There are lots of people who are not “neurotypical”, which is something that both educational and health services need to understand and cater appropriately for. Some institutions are already doing better than others on that, but we need to normalise everywhere the idea that some people will need quite particular and comprehensive support. That's going to be one of the ways to manage this in future, but that's a 10-year change.

So is there a way to fix all this?

There are different responses needed, with the first being a short-term response. Your room is flooded: what are you going to do about that? There are lots of people around the country experimenting with different ways of doing things on both autism and ADHD to provide support, help and intervention before diagnosis, and thinking of different ways to work with schools and children. There will be lessons from that to help deal with the current situation.

We know there’s a percentage of the population who are on the autistic spectrum and who potentially have ADHD. The actual numbers who are coming forward and on the waiting lists have in all likelihood not yet hit those percentages, despite being so remarkable. However, there may be a point when we do hit those percentages and my hope is that, if we scale up adult services for maybe eight to nine years and get it right for children, there should be a point in future where you have a very small number of people again coming forward for adult assessment for ADHD and autism, because we supported them as children.

Further into the future, we need to have a clear conversation as a society about how much of this is something that the health service should deal with, and what should happen more broadly in society. Or are we really prepared to put the necessary resource in to make the current or a new model fit for purpose?

Might diagnosing autism and ADHD earlier help people in the long run?

For the majority of people who are on the autism or ADHD spectrum, the earlier they can be supported, the more likely it is that their lives are going to be easier. If you do support children better, they should learn better, be able to more easily sit in a classroom, be able to better navigate life and navigate relationships. We know there are many people undiagnosed with autism and ADHD in the youth offending system. Wouldn't it be wonderful to think that if they were more supported earlier on in life that they might not be in the youth offending system later?

You’ve mentioned who should deal with these issues in the future. What do you think the split between the health service and society should be?

Fundamentally it is not just an issue for the health service to solve. The ADHD national taskforce is working hand in hand with the group that's been set up in the Department of Education, which is excellent. It absolutely is something that needs to be discussed hand in hand with education and justice departments.

Further on, there is a wider conversation to be had about how we describe ourselves as a society, because it's about what “normal” is. We have to work out how as a society we want to support and develop everybody – those who are called neurotypical and those who are neurodivergent. We need to create educational establishments and work establishments that allow everybody to flourish.

How would you rate the current approach to fixing the situation?

I'm really pleased that there's a national taskforce on ADHD, but I’d like to see us go further and have an overarching taskforce on neurodiversity, which would cover autism and other neurodiversity conditions. I would like to see a similar level of focus on the waiting lists for autism and ADHD as we have on elective care recovery. If this was hips or knees, we would be putting it in the elective reform plan, we would have a tariff around it. While it’s not all about money – you can't buy your way out of this problem – you would have a national focus that says it’s as urgent and as important as hips and knees, and it is.

For many people, their experience (especially with young children) is that it feels like life and death. There are also a number of mental health issues that we know are very significant for young people, as well as for adults. There needs to be a parity of approach to these really significant issues that is just not there yet.