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Inverness grandmother to start autism action group to highlight lengthy waiting times

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Jamie McKenzie

An Inverness grandmother has revealed plans to start an action group to highlight the impact of lengthy waiting times for diagnosing children with autism in the Highlands.

Sylvia MacKenzie’s 15-year-old son Kobe Sutherland was not diagnosed until he was 12, despite exhibiting developmental issues at an early age.

And the Press and Journal recently revealed that the 48-year-old now fears the same misjudgments are being made by health and education professionals with her four-year-old grandson, Kayson MacKenzie.

As well as improving waiting times, Mrs MacKenzie also wants to campaign for the provision of better interim support for north children and their families while they are on the waiting list.

Yesterday Mrs MacKenzie, who is planning a launch event for the group in early February, said: “The waiting time is the most important. You can’t get any of the professionals to come into your house until you get a diagnosis. Kayson is in nursery and he does not know how to cope with all the emotions and it is put down to bad behaviour and the parents.

“I remember times with Kobe when I could not get to the shop because I could not leave him, and it made me so low and so depressed.

“The group will be for everyone with children on the waiting list or wanting to go on the waiting list.

“Something needs done to highlight the fact I am not alone in this myself and I am certainly not the only one unhappy about the waiting times.”

Kayson MacKenzie was seen by a pediatrician at Raigmore Hospital in September 2014, but no follow up appointment was made.

In the following months, the youngster was observed by several doctors and in February last year he was eventually referred to The Pines, autism support centre in Drummond Road for a full assessment.

Mrs MacKenzie said her grandson is regularly having problems in school and claims she was recently told by a staff member that this was down to parenting and that there was “no way he was autistic”.

Mrs MacKenzie first reported concerns about her own son when he was two, and again when he was four.

Community paediatricians carried out two formal assessments for autism, but no diagnosis was given. For the next nine years, Kobe continued to exhibit developmental problems and was in contact with health professionals and social workers.

Mrs MacKenzie then sought an independent psychologist’s assessment which concluded that NHS Highland had failed to conduct appropriate assessments up to that point. In 2013, medics at Yorkhill Children’s Hospital in Glasgow finally diagnosed her son with autism.

NHS Highland has said that work is under way in the Highlands to improve waiting times for diagnosis.