Waiting times for child autism assessments are rising relentlessly, according to an NHS report published earlier this week.
In one area, there’s a shocking 36-month backlog and on average, across all trusts, there’s been an 86 per cent increase in waits to be seen.
Julian Harley, chief executive of NHS Providers, warned these long waits 'have far-reaching implications for a child’s social development, school readiness and educational attainment.’
It also means families are being left to struggle alone — wondering whether a child’s challenging behaviour could actually be a sign of something more serious.
Here, Dr Punit Shah, a professor in psychology and expert in neurodiversity from the University of Bath, breaks down some of the potential giveaway signs, and Jessie Hewitson, author of Autism: How To Raise A Happy Autistic Child, gives her advice on how to cope when facing an agonising wait for a diagnosis…
In one area, there’s a shocking 36-month backlog and on average, across all NHS trusts, there’s been an 86 per cent increase in waits to be seen for an autism assessment
Sign One: Avoiding eye contact
Some infants show hints of autism in their first months. In others, behaviours don’t become obvious until they’re toddlers.
Some don’t show any signs at all. Not giving eye contact during a conversion is one telltale signal, and this can occur from a very young age.
The reason many children with autism avoid eye contact is because it helps to reduce anxiety, explains Dr Shah, who appeared on the first episode of the 2023 BBC docuseries 'Inside Our Autistic Minds’ presented by Springwatch host Chris Packham.
’The reasons for why some autistic people avoid eye contact vary and not all autistic people do avoid it,’ he added. 'For some that do, it is to reduce anxiety, which helps them to manage better in social situations.’
It can also help children with autism better understand a social situation by reading the person’s facial expressions.
Some infants show hints of autism in their first months. In others, behaviours don’t become obvious until they’re toddlers
Some show hints in their first few months. In others, telltale behaviours don’t become obvious until they’re toddlers — and officially, it’s not diagnosed until kids are at least two.
Dr Shah said: 'For others, it can help them process other stimuli better, without the complexity of the social information from the eyes and face.’
Sign Two: Sensory sensitivity
Becoming distressed at loud noises is one sensory difference often noticeable in children with autism.
Julian Harley, chief executive of NHS Providers, warned long waits for autism assessments 'have far-reaching implications for a child’s social development, school readiness and educational attainment.’
These sensory sensitivities can make it hard to filter out irrelevant noises making it hard not to become uncomfortable or distracted leading to an overwhelming feeling.
’Generally speaking, autistic children have sensory sensitivities to different things,’ Dr Shah said.
’This can often be to predictable things, like bright lights and loud sounds, but also unusual colours and patterns.
’It really depends on the person.’
Sign Three: Speech difficulty
Echoing words and phrases, not talking as much as other children and talking 'at’ others are all signs of autism.
Dr Shah said: 'Speech is generally a bit delayed in autistic children, but not always.
’Another sign can be repetitive sounds or speech – sometimes known as echolalia – which can be a feature of autism.’
Taking language very literally is also a communication difficulty that autistic children often struggle with, according to the NHS.
For example, they may not understand phrases like 'break a leg’ and instead take it too literally.
Communicating what they want can also prove to be a challenge for some autistic children.
Charity Child Autism UK gives the example of taking an adult to the biscuit tin rather than asking or pointing.
Sign Four: Repetitive behaviour
Preferring a very strict daily routine and getting upset if it changes is a sign of autism in children, the NHS says.
Dr Shah explains this need for routine can present itself in different ways and can be idiosyncratic, meaning children will have unusual habits or ways of behaving.
However, this does depend on the individuals interests and needs.
’Typically, this can take the form of needing the daily routine to be predictable based on timing of daily activities,’ he said.
Children with autism who like routine and show signs of repetitive behaviour may play with the a toy in the same way each time or line items up, according to Child Autism UK.
The charity highlights that signs can also include 'being restrictive around certain activities such as eating only yellow food, watching the same programme over and over or only wearing a favourite jumper’.
Sign Five: Repetitive movements
It’s not just a repetitive routine, children with autism can also do the same movements on repeat.
In young children this could present itself as flapping their hands, flicking their fingers or rocking their body, the NHS says.
It’s not just a repetitive routine, children with autism can also do the same movements on repeat
However, children may also want to seek out specific visual or auditory experiences, Child Autism UK says.
The charity suggests this could be relative actions such as spinning wheels on a toy train, looking at the bars of a fence, or listening to the themes tunes of favourite programmes.
Sign Six: Misunderstanding emotion
It can be harder for children with autism to make friends and they often chose to play alone, according to Child Autism UK.
Some children may also struggle to say how they feel and sometimes do not understand what others are feeling, the NHS says.
However, misunderstanding emotion and not seeming to understand what others are thinking or feeling can be a sign of several conditions.
Dr Shah said: 'This really depends on the person and can often be related to conditions that overlap with autism, such as alexithymia (or emotional blindness) rather than autism itself.’
This can also present itself differently in young girls with autism as they may hide some signs of autism by copying how other children behave and play, the NHS says.
Many girls with autism also appear to cope better with social situations, but this could be because they are copying other children.
’Although we know there are sex differences in autism, these are not well understood,’ Professor Shah said.
’Because the very diagnostic criteria of autism have been shaped mostly by clinical observation of boys, we are still very much learning what autism 'looks like’ in girls. This will take time.
Children will struggle without a diagnosis… but here’s how you CAN cope, by Jessie Hewitson, mother of two autistic children
The majority of children put forward for an assessment of autism spectrum condition (ASC), as it’s known, are struggling.
Usually the child is finding learning difficult, friendships (or perhaps the lack of) stressful and/or the sensory bombardments of school overwhelming.
I have two kids both of whom have been diagnosed with ASC. It took a year before my eldest son, now 14, received his diagnosis at the age of two.
And it took two years for my youngest to last year receive his at the age of eight.
After my eldest was diagnosed, I wrote a book on raising happy autistic children so have done my research.
There are things you can do while you wait for your child’s name to get to the top of a very long list,says Jessie Hewitson
But the lack of a diagnosis certainly impacted my youngest, who is now out of school.
We all assumed he had ADHD but didn’t 'see’ the autism, despite our experience as a family, and he struggled as a result.
This is one reason why a diagnosis matters very much.
It’s key information for children and adults: an explanation for the young person why everyone else can navigate the social dynamics of the playground but they can’t.
Children who are autistic but don’t know tend to give themselves different labels, like 'odd’, or 'stupid’.
A diagnosis allows them to go easier on themselves; it also enables schools to make their support more specific.
There are things you can do while you wait for your child’s name to get to the top of a very long list, however.
Below is what you can do if you think your child is autistic, to help while you wait.
Keep a diary so you can better cope with meltdowns…
This will become helpful evidence when your child is being assessed, and will allow you to support your child better in the meantime.
Notice what triggers meltdowns and write it down, what your child’s sensory profile is: do they love smells but hate being touched?
What are they good at? What makes them happy and relaxed? What makes them anxious?
If you keep a record, you can spot patterns and do less of what stresses your child out, and more of what makes them happy.
On a related note, don’t expect your child to cope better in environments that causes stress; instead remove the stressor or adapt the environment (having a quiet space your child can retreat to with their favorite 'fidget’ toys to keep their hands occupied, and an audio book for example).
Up the structure and routine…
All autistic kids like predictability — it’s a way to feel safe and lower anxiety — so write down what the plan is for the week on a whiteboard in the kitchen or your child’s bedroom.
Other things that reduce anxiety for autistic kids is to make sure the social demands are tolerable (ie there’s not too many of them) and there are plans to mitigate noise if that’s difficult for your child, whether it’s ear defenders, or not going to chaotic places too often.
All autistic kids like predictability — it’s a way to feel safe and lower anxiety — so write down what the plan is for the week on a whiteboard in the kitchen or your child’s bedroom
Be as organised as you can be and try to minimise stress on the family: being autistic is a world built for 'neurotypicals’ (ie non-autistic people), is stressful enough without extra dramas.
Also, allow your kid to luxuriate in their special interests. There was a time when parents were encouraged to limit their child’s autistic obsessions but I’m glad to say those days are over.
Your child’s special interest is likely to be what brings them joy and may help them make friends. Down the line, it could even help them find a job so join them in their interest and nurture it.
Don’t expect your child to be non-autistic…
The conclusion to my book, Autism, How to Raise a Happy Autistic Child (which has just been updated with a new chapter on healthcare) is that the best way to help your child be happy is to allow them to be authentically autistic.
This sounds easy but isn’t. Autistic and ADHD kids who go to mainstream schools will 'mask’ to try and appear non-autistic or non-ADHD as a way to minimise their chances of peer rejection.
This is a process that happens subconsciously, so allowing your child to be 100 per cent themselves at home — and raising them to believe being autistic is just as good as being non autistic will help massively, too.
The best way to help your child be happy is to allow them to be authentically autistic
Being autistic and being non autistic both come with their upsides and challenges, after all.
People have just assumed being neurotypical is the best b, because it’s more common.
Discuss with your child the things that autistic people typically excel at (being honest, spotting patterns, being logical) and the things neurotypical aren’t so good at (detail-orientated work, tolerating difference and being precise with their instructions).
Keep communicating with the school…
The school shouldn’t be waiting for a diagnosis before it introduces support if it’s evident a child is struggling.
The school can make a referral for a speech and language therapist or an occupational therapist (who will look for sensory differences and if your child needs help regulating themselves) before a diagnosis
If there is good reason to suggest your child will end up with a diagnosis you could ask for your child to be put on the SEN register, which should mean regular meetings with the Special Education Needs Co-Ordinator and form teacher.
Keep lists of what your child is struggling with – if they have come out of school in floods of tears or had a meltdown soon after, what was the trigger – and communicate this with the school.
It’s a delicate balance of not bombarding the school with information but also making sure your child’s needs are recognised.
The best way to achieve this balance is not to overly communicate, but to group together a few incidents and ask for a meeting or ask the school can come up with a plan.
The school can make a referral for a speech and language therapist or an occupational therapist (who will look for sensory differences and if your child needs help regulating themselves) before a diagnosis.
Some other points to consider: Should I go private?
If you can afford it, it’s a valid option, though this can cost several thousands of pounds depending on where you live.
Schools and the NHS aren’t as sniffy as they once were about a private diagnosis as the reason people do it is obvious.
It’s a good idea to use a private doctor who also has an NHS practice or used to. Be aware that not all health insurance companies pay for assessments.
… And a reminder why you shouldn’t give up
Author Sarah Hendrickx received her own diagnosis in her early forties.
When people ask what a difference it can make at her age, she responds: 'All the difference in the world.
’Confirmation means that we weren’t wrong, stupid or rude. It means that all these decades of being frowned at because you said something „weird”, being missed off invitations, wanting to talk about permaculture when everyone else wants to talk about EastEnders and hitting the deck with your hands over your ears at the sound of a passing police car are all explainable.
’And the explanation isn’t — as you had suspected — that you are crap at life, it is because you process information differently.
’You see things that others don’t; you miss things that others see. Intricate detail and social signals are given different priorities in the autistic brain.
’Diagnosis means you can find your tribe: people who nod with empathic recognition at your tales of faux pas.’
Jessie Hewitson is the author of Autism: How to Raise a Happy Autistic Child (Orion Spring)
