Worthing Mum Calls On Government For Shorter Autism Diagnosis For Kids

A Worthing mum has joined forces with a mum in Warwickshire, calling on the government to reduce autism assessment waiting times.  

Sonya Mallin from Worthing has 10-year-old twin girls, one of whom is going through an autism assessment, and Jess Tomlinson, a mum in Warwickshire, has three children, two of them in the process of being diagnosed.

Jess's eldest child has been waiting for 3.5 years, her middle child for 12 months.   

The two mums have come together to bring pressure on the government and NHS, through a petition and social media hashtag #MonthsNotYears, to deal with the current crisis in services charged with assessing children with an autism diagnosis.

They're asking the government to create an emergency fund for local health services to help them deal with waiting lists and new patients.

Both say there's very little support for children while they wait to be assessed.

However, families in other areas of the country like Staffordshire have waiting times of only 12 weeks, which is proof that the process is working in other areas of the country.

Despite the government launching a new five year autism strategy for England in July this year, the mum's say funding has so far only been agreed for year one and no detail has been provided on how the government and NHS intends to deal with the immediate bottle neck of assessments waiting to be completed.

They agree that, "this must be addressed now. These children don't have time to wait for the politicians to decide how to implement their new strategy, they need assessing now".  

They're also calling on any organisation that comes into contact with children and young people, to urgently consider taking the National Autistic Society training so traits of autism can be recognised more quickly in girls to help earlier diagnosis for autism.

Sonya said:

"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. 

"I urge everyone to sign this petition.  Meeting Jess has made me realise how bad this crisis is - it's not just in West Sussex, but is affecting children and families across England. We had to join forces to highlight just how widespread this problem is.  

"I also urge those who deal with children and young people on a professional basis to consider taking the National Autistic Society training on identifying autistic women and girls too. They don't present the same way as boys and if the professionals don't know what to look for, how can they support parents to know what support is best for their struggling child?" 

Jess said:

"It's sad but true that there are thousands of children and their families STILL stuck in limbo waiting for autism assessments.

"Every single step of the journey for us has been a fight. My two eldest sons are both waiting for assessment. My 10-year-old has been waiting for 3.5 years. Something has gone very wrong here because it was roughly a 2 year wait when he was added to the list so it has doubled in the time he's been waiting.

"For my 7-year-old we have fought for support since 2016. It took until March 2020 to finally get him onto the by Children and Adolescent Mental Health Service (CAMHS) waiting list for an assessment. In the meantime, there is no support other than which is provided by volunteer led groups.  

"Here in Warwickshire Little Pegs are amazing but it shouldn't fall on volunteers to fill the gap when support is needed. I've been incredibly lucky to have found an amazing mainstream primary school that despite my children not having Education and Health Care Plans (EHCP) they go above and beyond to enable my children to learn and thrive.

"However, this isn't the case for most. Without an EHCP the support just isn't there.  

"It's a fight to get an EHCP with a diagnosis so without one its pretty much impossible. This is why a diagnosis is so important. It simply opens the door to the right support. 

"We're now having to seek a private diagnosis funded by a charity. Yet again it falls on charities to fill the gap and this is totally unacceptable.  

"I also question having neurodevelopment assessed by CAMHS. Autistic Spectrum Condition is NOT a mental health issue. It is a neurological condition. Just across my county line in South Staffordshire the waiting list is 12 weeks.

"Their assessments aren't carried out by CAMHS, but are done at a state of the art centre dedicated to autism diagnosis and post diagnosis therapy and support. It shouldn't be a postcode lottery. If it's possible elsewhere then it's possible everywhere. 

"I welcome the governments new autism strategy but it doesn't go far enough. Something needs to change now and focus needs to be put onto clearing the massive backlog across the country.

"It's common knowledge within the SEND world that early intervention is key to enabling a child to reach their full potential. It saddens me to see so many children going without the right support simply because they lack an official diagnosis.

"I urge anyone who will listen to sign the petition and write to your MP. An emergency fund would help clear the backlog and make it #MonthsNotYears before an autism assessment is carried out."  

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 £13 million 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." 

Sign the petition: 

https://petition.parliament.uk/petitions/589677

And take the training: 

https://www.autism.org.uk/what-we-do/professional-development/training-and-conferences/online/women-and-girls