How to spot early signs of autism in your child

My son Sam was four when a paediatrician delivered the news that he was autistic. Though we had recognised some differences in him for two years or more, the diagnosis was still a shock. It answered a few questions but threw up so many more.

I remember asking one: “What happens next?” The doctor handed me a leaflet for the National Autistic Society’s EarlyBird programme for families of pre-school children and effectively discharged my son. We’ve been largely on our own in the eight years since.

The National Autistic Society believes that more than 700,000 people in the UK are autistic (so more than 1 in 100). A 2021 survey of more than seven million schoolchildren in England indicates a higher prevalence of autism at around one in 57. Autism is diagnosed between three and four times more often in boys than girls. It may be that females are less likely to be autistic, but there is also evidence of biases in society that means girls can slip under the radar more easily.

What is autism and what causes it?

Autism, thought to be caused by a combination of genetic and environmental factors, is a lifelong condition affecting how a person communicates and experiences the world around them.​    

While the genetic connection is established, there is still much​ about it that is unclear, with variations in around 100 genes potentially linked to autism. And as for environmental factors, these are even harder to pin down​ with so many variables at play. It is suggested that complications in pregnancy and birth are one factor associated with an increased risk. High blood pressure or abnormal bleeding during pregnancy, and complications such as caesarean delivery or preterm birth, may all increase the risk of autism, studies suggest. 

​The individuality of each person with autism continues to challenge researchers. While autistic people share some similar characteristics – difficulties with social communication and restricted or repetitive interests – they are all individuals with their own skills and challenges.​ There is a theory that the connections between the different regions of the brain are atypical in autistic people, but few firm conclusions have yet been drawn about this. 

For some, other diagnoses may form part of the picture. Over time, this has proved the case with Sam, who we now know also contends with attention deficit hyperactivity disorder (ADHD), disordered speech and communication, and a learning disability. That better explains the delayed milestones, which don’t typically fit the NHS’s signs of autism in young children. 

Why is early diagnosis so important?

Getting an early autism diagnosis can be life-changing, but with around 157,000 people queuing for an assessment in England alone, it can be a long, lonely and painful wait. The National Institute for Health and Care Excellence (Nice) guidance states that no one should wait longer than three months between being referred and first being seen. But NHS data shows that the vast majority of people have been waiting longer than 13 weeks. 

My husband Graham, a journalist, and I had sought help from our GP when Sam was 19 months old, following delays meeting his developmental milestones. The doctor had referred us to a community paediatrician who highlighted concerns such as Sam’s lack of speech and the relatively few demands he made of us. Compared with his older sister, Isla, at the same age, he was very quiet with little of the babbling you associate with those early years. Autism was diagnosed in March 2015, following a year on the waiting list.

Dr Sarah Lister Brook, clinical director at the National Autistic Society, urges parents not to panic if they find themselves at the wrong end of a waiting list.

“Early diagnosis is not about changing the course of a child’s development,” she says. “Nowadays it is recognised that autism should be seen as a difference, not a disadvantage, and not something that needs to be fixed, and therefore it does not need a ‘cure’. Rather, getting a diagnosis is about helping parents understand their child, not labelling their behaviour as ‘naughty’ – as unfortunately can happen – and putting the right support in place.”

Even during waiting times, support including speech and language or occupational therapy should be available and can help you better understand your child’s needs. Support and advice normally comes from a health visitor for pre-school children and the school nurse or special educational needs co-ordinator (Senco) for those who are older.

There are other reasons to push for an assessment, says Professor Mark Brosnan, director of the Centre for Applied Autism Research. “If you are ultimately told your child does not fit the criteria for autism, you may then have to take a place at the end of another waiting list, perhaps for an ADHD or learning disability assessment, and you want to be able to do that as soon as possible.”

The wait is, sadly, getting longer. A survey instructed by the Westminster Commission on Autism for the Support Surrounding Diagnosis inquiry in 2021 found the average time from first considering an autism assessment to getting a referral was a year and eight months for children – and far longer for adults – with a further year’s wait until the start of the assessment. So knowing how to spot the signs means getting the ball rolling sooner.

What are the signs of autism in young children?

Lister Brook, who cautions that a diagnosis before the age of two is not reliable, says there can be some early red flags that “don’t equal autism” but do warrant further observation and monitoring.

“Look out for a lack of joint attention. That’s where a child may not point at things or make eye contact to share what they are interested in, or they may not respond when others interact with them in this way. Also look at things like persistent feeding difficulties, poor sleep regulation and frequent temper tantrums. All these are common in neurotypical children, but in autistic children they might be more prolonged or pervasive, going beyond the level that most infants experience. 

“Some repetitive behaviours can be evident. There might also be some speech delay and perhaps a lack of requesting help and the child seeming quite passive.”

The NHS also includes the following among signs for possible autism in young children: not smiling when you smile at them; getting very upset if they do not like a certain taste, smell or sound; not talking as much as other children or doing as much pretend play; repeating the same phrases.

Signs of autism in school-age children

Starting school, when a child is expected to conform more, can be particularly hard and may be when autism patterns of behaviour become more noticeable.

Children of this age might not seem to understand what others are thinking or feeling. They may repeat phrases and talk “at” others, and they like a strict routine and have a focused interest in certain activities that they use to make themselves feel better. They may find it hard to make friends or need more time on their own.

But, Lister Brook warns, the signs are not always obvious. “For children who struggle to communicate in the first place, it can be hard for others to recognise their needs.

“They may be working overtime in school to suppress how they are feeling, or they may not be outwardly complaining that the noise level in the class is stressing them out because they might not even be aware that it is happening.”

Instead, look for clues in the way they react to certain situations. Experts often talk of the “iceberg” of autism (in that the largest part of the iceberg is unseen as it lies beneath the surface of the water), where families and teachers may see difficult, defiant or anxious behaviour without necessarily understanding why.

Autism may be even harder to spot in girls, who can be better at mimicking other children’s behaviour and play. 

How is autism diagnosed?

A GP or health visitor refers those seeking a diagnosis to a specialist team, who may put them on the “pathway” towards an autism assessment. This multidisciplinary assessment will be carried out by a team of professionals, with you or your child having one or more appointments, and reports from your child’s GP, health visitor and nursery or school. 

Around 16 per cent of those who contributed to the Westminster Commission on Autism report opted for a private diagnosis, but it is worth bearing in mind that some local authorities insist that it comes from the NHS.

The autism research and campaigning charity Autistica, critical of elements of the diagnostic process, is trialling a digital toolkit to help autistic people get ongoing personalised support.

How to treat autism and support children

A diagnosis should allow families to access extra help, opening the door to support in school and, where needed, towards getting an education, health and care plan (or equivalent outside England) – 30 per cent of children with an EHCP have autism as their primary need. How easily that happens in reality depends on the school or nursery, local authority and the support from the NHS and social care.

But whether a child has a diagnosis or is still waiting for assessment, there is still much that families themselves can do. 

Lister Brook urges parents to focus on building a child’s communication and emotional understanding. She says: “Being able to help your child to understand their social and emotional responses to things is a great investment in their future.” The National Autistic Society’s “advice and guidance section” at autism.org.uk has information on how to do this.

Brosnan urges parents to think of adjusting the environment to better support their child. “The environment that you want your child to be in – a big noisy party surrounded by other children, for example – may not be the one they will thrive in,” he says. “Adjusting that environment, whether at home, school or out and about, can have an impact.”

Both urge families to focus on a child’s strengths, identifying what they enjoy doing and what they are good at. “Building upon those strengths to help support relative weaknesses could be really beneficial,” says Brosnan.

Both Lister Brook and Brosnan warn against invasive, unproven or even illegal interventions which sadly abound. Another survey for the Westminster Commission on Autism found that autistic people had been offered treatments such as crystal therapy, ear candles, exorcism, acupuncture, and even bleach and turpentine. None are supported by evidence, and some are dangerous and could cause serious harm.

Instead, seek out well-tested support like the National Autistic Society’s EarlyBird, EarlyBird Plus and Teen Life programmes.

What support is there for parents?

Getting an autism diagnosis can be hard and, as I know only too well, it is just the first step. Our family has experienced how stretched special needs services are. With little guidance and a shocking lack of joined-up thinking by those in “the system”, we blunder our way through this maddening maze.

We are not alone. The Westminster Commission on Autism reported that just a fifth of people were satisfied with post-diagnostic support and three-quarters struggled to find information about support services post-diagnosis. The onus is on families to be proactive. 

The Council for Disabled Children signposts where you can get further information, depending on which region of the UK you live in.

For families in England, there is a new NHS peer education programme, Autism Central.

With almost eight in 10 people finding the phase after assessment “quite” or “very” stressful, what hope can be offered to families embarking on this autism journey? 

Brosnan says: “It is unfortunate that services are so overburdened, but there is also a great deal of good work and good intentions. The UK is one of the leading countries in autism research and provision. There is a flourishing autistic community with a lot of research generated by autistic people themselves, and acceptance of autism does seem to be increasing year on year.”