This is a question that is a hot topic at the moment, I get asked about it all the time, but what is the answer? Are there many more Autistic children and young people now that a few years ago, or is there another explanation for the changing data?

I’ve been working in the additional needs space for about 12 years now, and have been Dad to an Autistic son for nearly 23 years (20 years since his diagnosis). When I first started talking about this, the commonly used figure for the number of Autistic children and young people was 1 in 100 (1%).

At the time, most children’s and youth workers I spoke to felt that there were more Autistic children and young people than that, so it wasn’t a surprise when over the years different research changed the figure to 1 in 88, then 1 in 58 (Cambridge University study), then 1 in 34 (‘The Lancet’ referencing 2018 data), gradual yet significant changes.

Then, more recently, the Department for Health, Social Services, and Public Safety (DHSSPS) in Northern Ireland suggested that around 1 in 20 children and young people are Autistic (2023, Prevalence of Autism in School aged children, DHSSPS).

So, in the 12 years since the figure of 1 in 100 children and young people being Autistic was used, have we seen a five-fold increase?

It is important to make the distinction between the number of Autistic children and young people, and diagnosis rates.

A recent BBC article quoted a study carried out by University College London (UCL) which showed that in the 20 years between 1998 and 2018, Autism diagnosis rates (across all ages) increased eight-fold, which the study leader, Ginny Russell, an Associate Professor in Psychiatry at UCL described as “exponential”.

So, a lot more people, including children and young people, but adults as well, are receiving an Autism diagnosis, but does that mean there are many more Autistic people now than 12, or 20 years ago?

An important point that the BBC article makes helps here; it says that “a rise in the number of people diagnosed with Autism is not the same thing as a rise in the number of people who are Autistic”.

Why then could there be a disconnect between the two… the number of people, including children and young people, being diagnosed as Autistic, and the number of people who are actually Autistic? There could be a number of factors involved in this…

Better awareness?

There is much better awareness about Autism today, thanks to many Autistic people, and their allies and advocates, working together to effectively inform the wider population about neurodivergence.

This has resulted in parents/carers/guardians, school staff, medical and social care professionals, children’s and youth workers, and others who are a part of a child or young person’s life, being more aware and better educated about Autism, making it easier to identify in children and young people.

Girls are autistic too!

For a long time, Autism was widely viewed as something boys were diagnosed with. Girls often slipped through the net and their neurodivergence wasn’t picked up.

Autism can ‘look different’ in girls, who are often better than boys at masking their differences, and at mimicking their peers, making it harder to spot that they might be Autistic.

An interesting consequence of girls slipping through the diagnosis net is that as they become adults, and some of them have children of their own, many find themselves taking their child through a diagnosis process while mentally ticking the boxes for themselves, and in some cases they take the step of seeking a diagnosis for themselves, which of course increases the numbers.

More adults being diagnosed?

It’s not just Mum’s that are getting a late Autism diagnosis, Dad’s are too, and many other people whose neurodivergence was overlooked as children and young people are now getting a diagnosis to help them to understand their differences.

While there may be some scepticism about so many late diagnoses being given out, there is another way of thinking about this. In the BBC article, they quote Ellie Middleton, an Autistic and ADHD content creator, who says “…how did all of these people spend so much of their life undiagnosed, unsupported, and let down?”

What about environmental causes?

There’s a whole furore at the moment with certain politicians stirring stuff up, and a few media channels giving them air time, creating misinformation in the public space about whether vaccines cause Autism, not least because the new US Administration has been pushing this agenda.

It has no basis in actual peer reviewed scientific or medical study, and raises memories of the debate about the MMR jab fuelled by an article in The Lancet by Dr. Andrew Wakefield in 1998.

This link has been widely debunked, and Wakefield was struck off, but the speculation continued.

When my son James was diagnosed as Autistic with Learning Disabilities aged 2½ in 2005, we were asked about whether he had received the MMR vaccination.

As it happened, his older sister had reacted badly to her first MMR jab, so we had subsequently paid for both of them to have their remaining inoculations (Phoebe’s second dose and both doses for James) by separate injections. That James hadn’t had the MMR jab and yet was Autistic was quite a story at the time.

Factors such as older parents, pregnancy and birth difficulties, etc. are felt to have a marginal impact on the figures for Autistic children, but generally neurodivergence is understood to be a genetic difference, with only minor environmental aspects.

Conclusion

So, we started with the big question, ‘Is there an increase in Autistic children and young people?’, and we’ve found that the answer to the question isn’t as simple as we thought.

There is an increase in awareness, understanding, diagnosis, etc. but not necessarily a significant increase in Autistic people, including children and young people, themselves.

One thing we can be sure of is that the debate will continue, and more research will be done, which can only be a good thing if it involves, and is for the benefit of, Autistic people themselves.

Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.