"The system is broken" - one mother's hellish wait for her son's ADHD treatment
The never-ending nightmare for parents trying to do their best for ADHD and autistic children
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“Your child will break over and over again while you, their parent, will be helpless to protect them.”
According to recent figures the number of people waiting for an autism and/or ADHD assessment in the Swindon area is in the hundreds. A think tank has said a “radical rethink” of autism and ADHD assessments and treatments is needed if the NHS is to keep up with demand. The National Institute of Health and Care Excellence has set a target time of 13 weeks for those with suspected autism to be assessed. Abbey Meads mother Amanda Wilkins had been told the waiting list for assessment for her 11-year-old boy was three years, so she was forced to get a private diagnosis for the sake of her child. She was then told it would be another three years’ wait before she would receive any NHS treatment for her son. This is her story…
By Amanda Wilkins
My son was diagnosed with autism and ADHD at the age of 11.
Frequent trips to A&E as a result of his kamikaze, no fear, stunt man antics, coupled with an overall Tasmanian devil vibe, meant we always knew he had ADHD. He is the ADHD poster boy; he ticks all of the stereotypical boxes.
The autism diagnosis was a surprise, but when you are surrounded by it (I have three children with ASD) it just feels ‘normal.’ I’ve put that in inverted commas because people get hung up on words like ‘normal’.
It was a late diagnosis mainly because he had been so well supported by an understanding and nurturing primary school that we hadn’t felt the need. However, things changed rather drastically towards the end of primary school and suddenly that diagnosis was vital. Diagnosis is key. It opens previously locked doors to things like support, resources and, most importantly, understanding. Without a diagnosis, a child with ADHD is just thought of as that ‘naughty’ kid who must have dreadful parents.
When it came to getting a diagnosis, we hit a wall, a massive, Great Wall Of China-sized wall. The NHS waiting list for an assessment was three years long. We were at crisis point, we had been for a while and simply could not wait any longer, so we went for a private assessment. We could not afford this by any stretch of the imagination but were fortunate enough to have wonderful extended family who could help.
It cost £2,500.
I know of families who’ve used credit cards and taken out loans to pay for a private assessment, such is the desperation to get the right support for their child.
To be accepted onto the NHS pathway you need supporting evidence from both home and school. The same is true for a private diagnosis. Contrary to popular belief they will not assess your child, no matter how much you pay, if the school does not agree that your child is neurodiverse.
Once we had the private diagnosis, we went to the start of the NHS waiting list (again) for ADHD medication. The THREE year long waiting list. Thankfully as I’m an absolute nightmare of a parent to the medical profession, he was expedited. Despite this expedition, it still took a year and a half to get him an appointment with an NHS paediatrician. He was finally seen at the end of April and is now starting a trial of medication.
I am writing this for all those out there that believe in some of the absolute detritus spread by certain media outlets that it’s easy to get an ADHD diagnosis. That it is the easy option to medicate kids. It is NOT easy; it is NOT quick. It is impossible to get a diagnosis without mountains of evidence from home and school and it takes YEARS.
In that time your child will suffer. They will be bullied; they will be excluded not only from school but also socially, from their peers. They will fall behind in class work. Their self-esteem will plummet. They will self-harm, they will have suicidal thoughts. They will break over and over again while you, their parent, will be helpless to protect them.
The system is broken.