It’s estimated that around 700,000 people in the UK have a diagnosis of autism, with one in 100 children diagnosed with an autism spectrum disorder.
Yet children and young people are having to wait long periods of time to start their autism diagnostic assessment, according to the British Medical Association (BMA).
NICE (National Institute for Health and Care Excellence) guidance states that no-one should wait longer than three months between being referred for an assessment and being seen.
However NHS data, shared by the National Autistic Society, revealed 87% of people had been waiting longer than 13 weeks for an assessment, which the charity branded “unacceptable”.
The impact of such delays is wide-ranging. Not only are children denied the opportunity to understand their response to different situations, but it can also cause extra stress to families and delay the diagnosis of other mental health conditions.
Of course, there are families who do receive a diagnosis and this period can “be a particularly emotional but also empowering time,” says Dr Selina Warlow, a leading expert in autism and ADHD care, while you both learn about autism and adjust your lives to cater for their strengths and needs.
What happens after diagnosis?
Once an assessment is completed, a report is sent to you (the parents) and your child’s GP to summarise the assessment and diagnosis. This report may include recommendations to support your child.
Parents might want to make some immediate adjustments to help their little one – especially after a long wait for answers.
But there is one mistake you want to avoid making, according to Dr Warlow, who is founder of The Nook Clinic.
She highlights the importance of only changing one thing at a time. This is because “too much change in the home can feel overwhelming for an autistic child”.
“For example, if you decide to introduce a visual timetable in the home, have this up for at least one week before introducing another change,” she explained.
It might also help to educate yourself about autism through books, workshops, and reputable online resources.
“Reach out to healthcare providers, educators, or autism specialists who can help guide your decisions,” says Dr Warlow.
While there will undoubtedly be challenges after finding out your child has autism, the expert believes diagnosis should be celebrated.
“Autistic children can have deep passions, creative problem-solving skills, and alternative ways of thinking that can inspire those around them,” she says.
“Autistic children teach patience, empathy, and the beauty of seeing the world differently.”