Mum in the Highlands still waiting after 10 years to get autism assessment for son
There is a note of exhaustion and despair in Zoe Willis France’s voice as she reflects on the 10 years she has been waiting to get an autism diagnosis for her son.
Her son, John, was aged two when a health visitor first flagged up a potential issue.
He is now 12 and still awaiting an assessment - a milestone which seems further away than ever as NHS Highland acknowledged significant pressures on the region’s neurodevelopmental assessment service.
'These children are simply being forgotten'
As she outlines the day-to-day practicalities and struggles of life with a vulnerable son, the meltdowns in public places, wearing out her trainers due to long walks to avoid stressful situations, Zoe, a single parent in Inverness, is reluctant to point the finger of blame but nevertheless feels she is passed from one department to another.
All she wants is an official diagnosis which, she maintains, would give her a clearer idea of the way forward and access to more support.
“Without that diagnosis I foresee stretching ahead of us years and years of me having to explain everything that seems different about my son,” she says.
“Until we have anything solid, I feel we have to constantly justify ourselves. I constantly have to premeditate and risk assess everything we do.”
A health visitor first indicated a possible problem when John was a toddler in the last of a series of developmental checks.
“It was the first time I remember someone saying you might want to get some extra checks because of some form of global development delay,” she recalls.
“It all sounded very dramatic. I envisaged we should look at it.
“But 10 years down the line we are still on the waiting list. We are still waiting to see someone.”
Zoe feels her son's strongest attributes and qualities are often overlooked or go against him in how he is perceived.
“Although he may not learn things in a conventional way, he is very intelligent and creative,” she says.
“He has an eye for detail, an acute awareness of things going on around him which I can tell by the way he remembers things in great detail.
“However, as soon as he is put on the spot by someone, or feels uncomfortable, that can all go out the window and they won't see that side of him.
“He can seem to say the wrong thing or mix things up, so reality and imagination combine.
“Equally, he can find it disconcerting when things aren't in the order he would like them. This can cause a lot of upset and anxiety.”
She is grateful for the efforts by teachers at her son’s primary school which, despite the lack of an assessment, has given as much extra support as possible such as a pupil support assistant under a child development plan which is reviewed every six months .
“School does as much as it can but they can only give so much time and attention to one child,” she says.
“It seems to be without a diagnosis that is the best you can get in terms of support. It is a big gaping hole.”
He is now about to move to secondary school and Zoe worries about what lies ahead.
There have also been issues out of school with other children who sometimes pick up on her son’s vulnerabilities and taunt him.
“My son doesn’t want to disappoint anyone,” she explains.
”He wants to be everyone’s friend. That leaves him vulnerable.
“Also, he can sometimes have meltdowns in public if the bus doesn’t turn up, or he gets annoyed about something.
“It’s quite a struggle to stay invisible when you have a child throwing himself about.”
She tries to avoid situations where they might unexpectedly come across his would-be taunters which has often meant walking everywhere rather than catching a bus.
An application was finally submitted for a neuro developmental assessment in 2020 but she understood it had been delayed because of the Covid-19 pandemic and lockdown.
Despite checking every six months, she says she is no further forward and speculates whether her son will have left school by the time he gets a diagnosis.
She explains the importance of a formal diagnosis.
“There is a gaping hole. I don’t know how many times I have been asked ‘does he have a diagnosis?’.”
She hoped, for example, to get the fencing at their housing association home adjusted to give more privacy for John in the garden and to avoid any awkward encounters.
But she was told without a formal diagnosis, the housing association could not secure the funding for the fencing.
“On the one hand, I am told it doesn’t make a difference but on the other, from what I am also being told, it does make a difference.
“It is not just about John but me, too.
“I feel we have to constantly justify ourselves.”
There have also been uplifting moments and help from other organisations such as Connecting Carers.
“When I explained to them about the horrors of being scared on the bus and walking miles and miles, Connecting Carers secured funding of £2000 for me to get driving lessons,” she says.
“They also secured money to get a new pair of trainers because I had worn out my others.”
John enjoys classes at Eden Court Theatre and also goes to Rokzkool Academy which provides activities such as music lessons, arts and crafts, social groups and community projects at its base in the Eastgate Shopping Centre.
It has provided a safe space where John can be safe and be himself while Zoe, who is a volunteer, feels she does not have to give explanations.
“If it wasn’t for Rokzkool, we would have nowhere to go,” she said.
“It is one place I don’t have to look around and assess the situation - who is going to be there I might bump into.”
She said John had a natural ear for rhythm and music which Rokzkool had picked up on and nurtured and he had been able to learn from others there, too.
“It is great to see him flourishing that way,” she reflected.
“It has been an immense effort for us to get to this point but it relies on constant effort and input.
“The challenges continue.”
