Autism diagnosis ‘like gold dust’, says mother

AFife mother claims hundreds of families are struggling because of a two-and-a-half year wait for an autism diagnosis.

At the beginning of December, 1,085 young people were waiting for a diagnosis with two-and-ahalf-years the average time between referral and a first appointment.

Liza Quin, who runs Autism Rocks in Buckhaven, had to wait three years for her daughter Alannah, 17, to be diagnosed but said others are waiting far longer.

She said appointments were “like gold dust”.

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

She added: “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.

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

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

She said 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 – they are like gold dust.”

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

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

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

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

“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 they are left to it.”

Ms Quin has been home schooling Alannah for the last few years because she has been unable to cope with mainstream schooling.

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

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

Dad Andrew Tennant said: “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.”

The Scottish Greens have said 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.

“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.”

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

They are also introducing a network to support families in the new year and offering more training to teachers.

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 while we appoint to these newlycreated 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.”

FRUSTRATED: Liza Quin. Below, inside Autism Rocks. Pictures by Steve Brown.