The majority of children put forward for an assessment of autism spectrum condition are struggling. Usually the child is finding learning difficult, friendships (or perhaps the lack of) stressful and/or the sensory bombardments of school are overwhelming them.
So the data showing that waiting times for autism assessments have risen at 86 per cent of all NHS trusts is depressing. One trust said that the average wait has increased to over three years — 36 months — up from 14 months pre-pandemic. Sir 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.”
Mr Harley is right. I have two kids both of whom have been diagnosed with Autism Spectrum Condition on the NHS. It took a year before my eldest son, now 14, received his diagnosis at the age of two; it took two years for my youngest to last year receive his at the age of eight.
Despite being from an autism friendly home — I wrote a book on raising happy autistic children so have done my research — the lack of a diagnosis certainly impacted my youngest, who is now out of school. The school and I had assumed he had ADHD but didn’t see the autism 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
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 cause stress; instead remove the stressor or adapt the environment (having a quiet space your child can retreat to with their favourite fidget toys 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 (or use visuals if your child is younger or has learning disabilities). 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. Be as organised as you can be and try to minimise stress on the family: being autistic in 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. Being autistic and being non autistic both come with their upsides and challenges, after all. People have just assumed being neurotypical is the best, 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. 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 Educational 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.
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).
