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(UK) NI: 21 month wait just for ASD assessment; Mom: "It's really horrible"

Sept 14, 2020, Impartial Reporter: Mother hits out at ‘disgraceful’ waiting times for autism diagnosis (Northern Ireland) 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. … 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.


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