Neurodiversity: the path to diagnosis
From ADHD, Dyslexia, Dyspraxia, OCD to Autism: how to get a diagnosis for your child
I remember the day I got the call from the headteacher at my children’s school.
“We’ve had the SENCO in and she thinks your son is autistic,” she said. “We’ve put him on the waiting list for CAMHS.”
I was holding my youngest, then a toddler in one arm and I almost dropped the phone. I won’t go into everything that had preceded this phone call: the constant demands to pick him up if he’d had a meltdown, the awful things they had written on school forms and the flagrant lack of sensitivity.
So began the long and difficult process of getting a diagnosis, navigating a whole new world of
acronyms, processes and forms. And changing schools.
If you have a child that has an additional need, whether that’s ADHD, autism, dyslexia, dyspraxia or another condition which falls under what is now known as ‘neurodiversity’ the chances are you will reach a point where, like us, you want to get an official diagnosis.
This might be for your own understanding and peace of mind, or, depending on the need, because you want to access additional support at school or apply for an EHCP: Education Health Care Plan (otherwise known as the Holy Grail of SEN.)
But what are the pros and cons of getting a diagnosis and what options are available to you? How long does it typically take and how much does it cost if you go private?
Georgina Durrant, a SEN tutor and author of ‘100 Ways Your Child Can Learn Through Play,’ says the long waiting lists – it can take up to two years to have an assessment depending on where you live - can be one of the main deterrents for parents.
Not to mention the cost, which could be anything from
£350 for a dyslexia assessment to £2000 for autism.
“I always advise parents to start the process as soon as they can, to speak to their child’s teacher, the school SENDCO and their GP to try to get the ball rolling,” she notes. “I also advise them to be organised; keep records of emails, letters, meetings and calls, in case there are any problems they need to chase up.”
Durrant says all though many parents can be reluctant at first to ‘label’ their child, getting a diagnosis can bring huge benefits. “It can help children understand themselves more as they grow up, which is crucial for mental health and wellbeing and, hopefully, make them feel more accepted by society as a whole,” she says.
Having a diagnosis doesn’t change your child, it just helps you to understand them more, Durrant says. “For many parents it can be useful for validating their concerns. You are the expert of your own child and are probably fully aware of your child’s needs before a diagnosis but a diagnosis ensures that other people will too.”
Dr Zirva Khan, a GP and mental health specialist, says parents should prepare to share as much information as possible about their child with their GP, the school and any other professionals involved. “Sharing information about their developments, behaviours and habits is a good start. Getting a report or assessments from school is also super helpful,” she says.
And if a parent went to their GP looking for advice, perhaps because they are struggling with their child’s behaviour at home, or because of issues at school, would Dr Khan usually advise them to seek a diagnosis? It depends on the degree of concern and behavioural challenges, she says. “If there are suggestions that this seems more like an underlying learning difficulty or SEN, I may suggest seeking further advice sooner rather than later. Unfortunately, we find that by the time a diagnosis is made, it’s often at a stage where parents are really starting to struggle.”
For many parents, myself included, it’s also a case of realising that you’re not going to get support without a piece of paper outlining what your child needs.
Hester Grainger, co-founder of Perfectly Autistic consultancy and mum to an eleven and nine year old who are both on the autism/ADHD spectrum, says they realised that without a ‘label’ neither of her children would get the help they needed at school.
One of the issues Grainger encountered was the ill-formed preconceptions from so-called ‘experts.’ “It was originally flagged when my son was three that he may have autistic traits,” she says. “These were quickly dismissed by professionals as he made good eye contact and was affectionate. They assumed that if he was cuddly and could make eye contact, then he wasn't on the spectrum, which is ridiculous.”
Overall, says Grainger, who was also diagnosed with ADHD last year, getting her children assessed was a positive experience. “But simply being handed a report and being sent on your way is tough. So we launched www.perfectlyautistic.co.uk to support those going through the same journey as us,” she notes.
Whatever stage you are at, the main thing to remember is that having a neurodiverse child can open up another dimension of experiences, skills and perspectives. And that having a special educational need doesn’t make them any ‘less.’ I only wish I’d told that to the narrow-minded head teacher who made me feel like it was the end of the world.
Where to go next..
For the uninitiated..
SEN/SEND – Special Educational Needs, Special Educational Needs and Disability.
CAHMS - Child and Adolescent Mental Health Services.
EHCP – Education Health Care Plan.
CAF – Central Assessment Framework.
EP – Educational Psychologist.
Georgina Fuller is a freelance journalist and editor who regularly appears in the national press, and writes and advises about a number of different issues, including parenting.