A Fermanagh mother has hit out at the “disgraceful” waiting list length for Autism Spectrum Disorder diagnosis in the Western Trust.

The mother of three who did not wish to be named in fear it would jeopardise her child’s position on the waiting list and future support for her daughter has been waiting for 21 months for an assessment on whether or not her daughter has Autism Spectrum Disorder. She has been on the cancellation list for all three hospitals in the Western Trust since May 2019.

This is despite the trust recommending that children with suspected Autism should only wait for 13 weeks before seeing a specialist. This guideline from the trust is stated in the ‘Six Steps of Autism Care -Regional Autistic Spectrum Disorder Network for Northern Ireland’ which is distributed by the HSC. The Western Trust responded and said: “It is difficult to provide average waiting times for first appointment, however, we acknowledge there are times when children wait longer than 13 weeks. Waiting list and times are regularly reviewed and prioritised and every effort is being made to reduce waiting times for children and their families.”

The Western Trust confirmed that ASD service had resumed in South West Acute Hospital and "on average the Children’s Autism service provides 96 appointments per week".

The mother is desperate for a diagnosis or an indication of what is causing her daughters behaviour. She believes that “geographical discrimination” is a key factor.

The mother was told that the Western Trust will not accept a private diagnosis of autism despite the substantial backlog.

When asked by The Impartial Reporter whether or not the Western Trust take private diagnoses of Autism, The Western Trust said: “Within the Western Trust the autism diagnostic process is informed by the ‘Six Steps of Autism Care,” and the National Institute of Clinical Excellence (NICE) guidelines. Consideration must now also be given to how the assessment was completed in a reliable and valid manner given Covid restrictions. If a child has a private diagnosis we ask for any reports detailing the assessment. If there are any elements of the assessment not completed or outlined with the appropriate amount of detail in the report then we will complete those aspects of the assessment to inform our diagnostic process and decision. When a private assessment meets the guidelines, the child can be removed from the waiting list. "

The worried mother first acted 2 years ago when her child’s mental health began to “completely deteriorate.” She took her daughter to the GP who then referred her onto the Child Adolescent Mental Health team (CAHMS) but CAHMS reviewed the child’s paperwork and concluded she needed to be seen by the ASD team

The long waiting time is having a toll on the family says the mother. “It’s really horrible for the family because we just don’t know what causing it. We don’t know if this is autism or not. We have no answers. Without a diagnosis we cannot work out why she is different to her siblings. It not about her being spoilt or anything like that. Children treated the same and the others don’t act like that.”

The mother has noticed how her behaviour is different to other children and she explained her experience of ‘masking’ - Masking is a process in which an individual changes or "masks" their natural personality to conform to social pressures, abuse, and/or harassment.

“She masks her behaviour in school because she has learnt how to behave in school by watching her friends but when she returns home to her safe place she has a meltdown. Her behaviour is learnt. She is a role model child when she is in the classroom, but that is because she has learnt her behaviour and knows this is how she must behave. She is very aware and vey alert as a child and told me when I took her to the doctors that she wouldn’t speak. You would have thought she almost knew why she was there”

Autism NI CEO Kerry Boyd said: "The challenge is that females with autism can present differently. Every child on the spectrum is different, but with females the tendency can be to internalise their anxieties.”

“Children usually receive a diagnosis when they are in early primary school or even nursery school. With females, their diagnoses tends to come in post-primary, when the social factors linked to autism start to come into play more obviously.”

“Typically, both females and males with autism will face the same sensory challenges, for example, flickering lights or noise in a classroom can be very difficult to cope with. Females will also have a delay in processing instructions that a male with autism will have, and they'll feel the same anxiety. But the difference is, in many cases a female will silently try to cope with all that.”