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Tyrone mum’s frustration over support for autism

A LOCAL parent has spoken out about the lack of support provided to families of children with autism after being informed just a few months ago that her son was presenting with characteristics of Autism Spectrum Disorder (ASD).
 
 Currently in the North, one in 34 children are diagnosed with a form of autism, a lifelong condition which affects the development of their social and communication skills. 
 
There is no single cause of Autism but increased awareness of the condition can hugely improve outcomes as it leads to earlier diagnosis and thus earlier interventions. 
 
 Before being told that her son was presenting with Autistic tendencies, the mother admitted she herself was completely unaware of ASD.
 
 “On recently being informed that my son was presenting with ASD, I admit I didn’t have a clue what ASD was and was slightly taken aback when I discovered it meant Autism Spectrum Disorder,” she said.
 
“Yes of course, I noticed a few endearing oddities and a few not so endearing meltdowns but I had never quite connected the dots with these being Autistic traits.”
 
Autism is a complex developmental disability and signs typically appear during early childhood, affecting a person’s ability to communicate, and interact with others. ASD is a “spectrum condition” and will therefore affect individuals differently and to varying degrees, some people will be able to live independent lives, while others will require a lifetime of specialist support.
 
It was following several meetings with the school and a referral to the educational psychologist, that her eight year-old son was recommended for a referral to the Western Health and Social Care Trust (WHSCT) Autism Service.  
 
However despite the initial process running relatively smoothly, the mother has expressed her frustration at the huge delay her son now faces before meeting with a WHSCT professional.
 
“While I cannot fault the initial part of this process the frustration begins with the time it will take before the professionals will see my son,” she explained.
 
“The educational psychologist was unable to give us any indication as to how long it would be before the referrals would come through but we could be looking at 12-18 months at best.  
 
“This is a long time to wait to talk to the experts about something that is impacting you on a daily basis.”
 
Last year there was 575 autism referrals in the Western Region, and the local mother believes more should be done to support parents and families during this referral period such as providing them with help and advice, to show “they are not alone”.
 
“My first instinct was to turn to Google but what exactly am I researching?  It’s the not knowing where to go for help.  
“You’re told something, something big that you have to process and then you’re told you have to wait 12-18 months.”
 
As April is Autism awareness month, it is vitally important to raise awareness of the condition as well as supporting individuals with ASD and their families. For more information about Autism or to find out how you can get involved with Autism NI visit www.autismni.org.
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