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‘Trying to get blood out of a stone’: Fife families struggle as autism diagnoses take two-and-a-half years

Liza Quin, founder and chair of Autism Rocks

A Fife mother says hundreds of families are struggling because of the two-and-a-half year wait for an autism diagnosis.

At the beginning of December, 1,085 young people were waiting for an appointment to get an autism diagnosis, with the average waiting time between referral and first appointment standing at two-and-a-half-years.

Liza Quin, who runs Autism Rocks in Buckhaven, had to wait three years for her daughter Alannah, 17, to get a diagnosis – but she says others are waiting far longer.

She says appointments are “like gold dust” and trying to get one is like getting “blood out of a stone”.

‘It is a constant struggle’

Ms Quin says the problems with autism diagnoses in the area are down to a lack of professionals and a lack of funding.

She said: “Since the pandemic you can’t get face-to-face assessments and trying to do any assessment for autism or anything like that online is not possible.

“The pandemic has delayed everything, but sadly they can’t use that excuse for before the pandemic hit.

Liza Quin

“It all boils down to a shortage of professionals and funding for said professionals.

“It is a constant fight and a constant struggle.”

She says assessments also need to be more in depth and have all the professionals in one room at the same time, rather than having to endure multiple stressful appointments.

Ms Quin added: “Trying to get an appointment is like trying to get blood out of a stone.

“Appointments are like gold dust.”

She adds some families at Autism Rocks have had to wait up to seven years for an official diagnosis.

Families judged for invisible disability

Currently Autism Rocks supports 2,350 families with autism in and around Fife.

She says coping with a family member who has autism is isolating and hard work, but adds this can be even harder for a family who are waiting on an autism diagnosis.

Inside Autism Rocks in Buckhaven

Ms Quin added: “I only have one child on the spectrum but some families at Autism Rocks have two or three on the spectrum, or have one diagnosed and another waiting for a diagnosis.

“It is an invisible disability and people don’t understand it so we get judged because of it.

“My daughter is very pretty and it doesn’t look like there is anything wrong with her.

“But people come up to me and ask ‘what is wrong with her?’ and I get annoyed.

“Some get a diagnosis when they are 35 because they have got so far in life thinking they are fine and they can cope, but on the inside they are not coping.

“Things are hard and isolating if here is no one to talk to, and I am not the only one going through this.

“It all boils down to money at the end of the day, and it shouldn’t be that way.

“Early intervention is key because if they don’t get any early intervention they are left to it.”

Liza has been home schooling Alannah for the last few years because her daughter has been unable to cope with mainstream schooling.

Greens: ‘Simply not acceptable’

The Scottish Greens say it is “unacceptable” the situation has been left to get this bad in Fife.

Mark Ruskell, Green MSP for Mid Scotland and Fife, said: “Families in Fife who are waiting for autism assessments for their children are at crisis point.

“The pandemic brought a halt to face-to-face assessments, leading to a backlog of more than 1,000 young people waiting for appointments.

Mark Ruskell, Green MSP for Mid Scotland and Fife

“These ongoing delays are having a major impact on those young people waiting and their families.

“I welcome the recruitment plans put in place by NHS Fife – if this goes to plan, not only will young people be seen quicker, but our hardworking NHS staff will finally have the capacity to meet the needs of families in Fife.

“However, it is simply not acceptable that the situation has been allowed to reach this point.

“We need to see progress fast to ensure all those who are waiting receive all the support they need.”

Appointments to increase in 2022

Fife Health and Social Care Partnership says it is investing in autism services to bring the number of appointments available each month to 164.

They say they are also introducing a network to support families in the New Year and offering teachers more training.

Rona Laskowski, head of complex and critical care services at Fife Health and Social Care Partnership, said: “Significantly investment has been put in place to develop a new neurodevelopmental pathway and the key appointments necessary to implement this.

“These new roles will enable us to significantly increase our monthly assessment capacity from 32 to 164.

“Furthermore, an external provider is being commissioned to provide additional assessment capacity and reduce waiting times whilst we appoint to these newly-created posts.

“We are committed to ensuring that both young people awaiting assessment, and their parents or carers, are supported through the assessment process.

“In partnership with Fife Council we have recently commission Autism Network Scotland to provide one-to-one advice and support for families.

“This new service will launch in early January and will be provided by phone or video conference initially due to the impact of Covid-19.

“We are also continuing to provide post-diagnostic support for families, such as our six-week parent awareness programme for autism spectrum programme.

“Similarly, as part of the initial roll-out of the Fife neurodevelopmental pathway, we have also begun the targeted implementation of training for colleagues in education and wider children’s services to ensure that children and young people with autism spectrum disorder in Fife are well-supported in these settings.”

Backlog in ‘social circumstance reports’

The Tennants from St Andrews have also found issues trying to get help and support for their 16-year-old son Blake.

They have been waiting months to sort out guardianship for him, and say they do not get enough help and support as a family.

Samantha and Andrew Tennant with son Blake

Dad Andrew Tennant said: “We spoke to a solicitor to apply for guardianship prior to Blake’s 16th birthday and we were told it is quite slow to process that in Fife.

“We filled out all the forms but since then we have heard nothing and until we do we are in limbo.

“Legally, if he decides he wants to move out or leave school, he is 16 and considered an adult.

“We were living in England and it still took painfully long to get him diagnosed, but from speaking to other parents in Fife, the waiting time is abysmal.”

Mum Samantha Tennant added: “We need support but it is not offered, and when it is we have to travel a long way to access anything.

“We don’t get respite support.

“They need more staff, it is so under-staffed because there is no one to do any assessments.

“There is a huge backlog and a huge amount of work to do and I just don’t think it is being done.”

In response to the Tennant family’s situation, Ms Laskowski said: “Unfortunately, there is a waiting list for social circumstance reports, which are prepared by mental health officers, to accompany local authority and private applications for guardianship.

“This is due to a combination of the closure of courts and the increase in emergency detentions during lockdown.

“We are dealing with the highest priority cases first, for example, where someone cannot be released from hospital until an order is in place or where they may be a risk to themselves or others.

“We recognise how important these processes are, and have recently agreed additional investment to enable us to increase capacity and therefore respond to requests such as these in a more timely manner.”

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