Dr Helen Leonard has been carrying out autism assessments for more than 20 years, and has worked in Newcastle for the last 10. Her team at Great North Children’s Hospital deal mainly with pre-school children.

How many children do you see each year?

When I started in Newcastle the team used to get 36 referrals a year. For the last two to three years, it’s been around 200. There has been a huge increase throughout the country, and that is seen internationally as well, but the North East increase is even bigger.

We know the number of children we’re seeing as a percentage of our population is higher than the published autism incidence of 1%. It works out about 6% and that’s not unusual.

There are far more children referred from deprived communities. Forty-nine percent of families on our waiting lists come from the most deprived 10% of the population, and 2% from the least deprived.


Why are waiting lists growing?

Waiting lists have got longer because the numbers have gone up but there hasn’t been enough investment in services to keep up. There are more children but not more staff, that’s the bottom line. We have done every efficiency saving and service improvement we can, but we can’t do anything else without more resources.

This last 10 years when there’s been the biggest increase has coincided with austerity measures in the UK so there hasn’t been the money available.

A separate question is why there is an increase in referrals. We used to say it was better recognition, and I think that is a part of it. But our biggest increase has been in children with very high needs. We know that autism has a big genetic component but I think there are environmental factors as well to explain the huge increases we’re seeing. Very early environment does have some impact on long-term outcome and we have to start looking at that.


How important is a diagnosis?

We’ve changed the model of working – it used to be you’d wait for your diagnosis, and then you’d get help. Now, because children are waiting a long time, the help is going in while children are on the waiting list and you tend to find a lot of nurseries or schools putting in a lot of support. But for that support to be secure, the diagnosis does help and it gives professionals working with the child a clear understanding of what the difficulties are. Then that child’s support can be tailored to be autism-specific.

The difficulty is that post-diagnostic services are really stretched. Families have the expectation that they’ll get the diagnosis and all this help is going to kick in. And actually, not a lot changes because the help has already been going in.

We try to offer as much post-diagnostic support as we can, but some other services are diagnostic only and some families feel like they’re left high and dry.

There are some evidence-based interventions that can help, like Paediatric Autism Communication Therapy (PACT) which is about teaching parents to spot the cues for communication in their child. But it’s available in very few places and I think that needs challenging. When we’ve got an intervention which clearly helps, I really struggle with the fact that we’re not offering it as standard. It’s down to money and priorities.


Are private assessments a valid route?

For us, it depends on the quality of them. I have seen some absolutely superb private reports done in more detail than the NHS can offer by very credible professionals. But some of them aren’t superb and I wouldn’t accept them. So we don’t have a blanket approach. I would look at whether it’s been a multi-disciplinary assessment, who’s been involved, the quality of information, and whether it matched what we were seeing with the child.

It's the same for the NHS using private providers. Even though we’re faced with huge challenges like waiting lists, I think the people commissioning outside services have to be very careful about looking at the quality of what they’re commissioning.


What can be done to reduce waiting lists?

There’s no way round it – we have to invest in the services. The problem is now we’ve got people purely focusing on the waiting times and numbers, and it’s pointless making a diagnosis unless you have something to offer at the end of it.

We’ve said autism has a big genetic component and we can’t change that. But I do think we need to look at some public health measures around education and offering very early help to change outcomes.

In healthcare, we tend to spend money on solving problems rather than preventing them happening in the first place. We need to look at environmental factors and see what we can do before children get onto the waiting list. 

See our story on waiting lists