Sonya Mallin, who has ten-year-old twin girls, has joined forces with Jess Tomlinson from Warwickshire to call on the government to provide resources to reduce autism and ADHD assessment waiting times for children and adults.
Jess started a petition after waiting nearly four years for her son’s assessment and then joined forces with Sonya to launch the Months Not Years campaign to highlight just how widespread the problem has become.
They have never met in person but they are united in the belief that something needs to be done to resolve the current crisis in the NHS-funded children and young people’s mental health services (CYPMHS).
Sonya said: “We’ve been waiting nearly two years for my daughter to go through the assessment. It’s exhausting! I wish we were an isolated case but I don’t know any family that has engaged with this process and had a positive experience.
“We have to fight for every scrap of support for our children both before and during diagnosis. At the very least, we should expect the assessment to take #MonthsNotYears.
“It’s time to do better and an emergency fund is exactly what could alleviate the bottleneck of assessments waiting to be completed.
“Remember that behind every one of these assessments is a child, like my daughter, struggling to find their place in the world. Diagnosis is a vital stage of that child’s journey to understand who they are and to access support. We are failing our children and we must do better.”
Sonya said girls with the neurological condition autism present differently to boys, which means professionals often miss it.
She explained: “Girls mask their struggles by copying other girls’ behaviour. It’s utterly exhausting for the kids to do this and they come home from school mentally and physically exhausted, often emotional and usually anxious and upset.
“Non diagnosis in childhood can often mean teenagers and women can really struggle, which ends up presenting as anxiety, depression, self harm or anorexia as they struggle to fit in. But the professionals end up treating the symptoms not the cause (autism) and it gets missed again.”
Families can make a referral for an assessment through the health visitor if the child is under five, through a special educational needs co-ordinator, staff at school or their GP.
In Sonya’s case, she spoke to all three but it was only when her daughter was taken to a private counsellor because she was so anxious that the question of autism was raised.
Sonya said: “By that time, she was eight years old. We were then referred in November 2019 and are still waiting for the outcome of the assessment. She’s now 10. It’s disgusting.”
Sonya said her daughter finds the world a confusing and challenging place to be but it is difficult to get support, particularly in an educational setting, because the funding for special educational needs is so stretched.
A few simple strategies would make a lot of difference to her, she added, but it is hard to get these put in place until she has the diagnosis, which the family hopes will come through by Christmas.
Sonya said: “From our daughter being two years old, we have sought help through the health service but were never advised to consider an autism diagnosis and therefore she did not receive the support needed to help her feel safe to thrive in an education setting for years.
“This changed when she saw a private counsellor, who, by chance, recognised autistic traits and flagged autism as a possible cause of the anxiety. From there, we worked with the school to get our daughter referred for a diagnosis. That was two years ago.”
Jess, a mother of three, had been fighting for support for her younger son since 2016 before he was put on the waiting list for an assessment in March last year. Her eldest child, a ten-year-old boy, has been waiting nearly four years.
The government launched its national five-year strategy for autistic children, young people and adults in July but Jess said funding had been agreed only for the first year and no detail had been provided on how they would deal with the immediate bottleneck of assessments.
Tom Purser, head of guidance, volunteering and campaigns at the National Autistic Society, said: “A diagnosis can be life-changing and is vital to getting help and support. But waiting times are still far too long in many parts of the country. Some autistic children and adults are waiting many months or even years for a diagnosis.
“NICE guidance is clear, no-one should wait longer than three months between being referred and first being seen. But it’s a complete postcode lottery and it’s highly probable that coronavirus will have made things worse.
“Bringing down waiting times is a priority in the NHS Long-Term Plan and the Government’s new five-year autism strategy promises to address this with £13million allocated. This is important but only the first year of the strategy has funding at the moment. The Government must honour its commitments to autistic people and families by fully funding the strategy in the upcoming Spending Review.
“For thousands of autistic children, adults and families, progress can’t come quickly enough.”
To sign the petition, visit petition.parliament.uk/petitions/589677.
For more information on the campaign, find Months Not Years on Facebook