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Living with Autism - a personal story for Autism Awareness Month


April is Autism awareness month and much is being done to alert people to the problems encountered by those who are autistic and their families.
The National Autistic Society defines Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and how they make sense of the world around them.
Having a child with autism can be difficult for families, especially when there often seems to be a lack of support available.
Amanda Jones of Pontypridd is a mother of a child with autism. Here, in her own words, she describes her experience:
"My 13 year old son was diagnosed with ASD in November 2013 (then aged 12), 2 years after he was referred to CAMHS. I received his diagnosis in a letter and have not seen his doctor to be able to discuss his needs and how I can help him. I was informed in January 2014 that I had missed an appointment which I hadn't received, and now have to wait until May for the next appointment, 6 months after his diagnosis.
"I recently met Sue Vaughan from CAMHS when she came along to a group I have joined, and she gave me the booklet "Autism: A guide for parents and carers following diagnosis" which she informed me I should have been given when they gave me the diagnosis, she was quite disgusted that I had received my son's diagnosis in the mail. This book is very helpful but I should have received it in November not in February. She also informed me that one of the main reasons that there is so much pressure on the CAMHS service in RCT is that it is the only borough that does not have primary care in children's services. The funding for this was removed in March 2013.
"Knowing that your child is different to other children, having many issues from behaviour problems to social and sensory difficulties is very stressful for parents, but when they then have to battle with the system to get a diagnosis and support can lead a lot of parents to the point where they are suffering from health problems of their own as well as trying to cope with their children.
"A couple of parents have set up a group** with the help of Home Start and Action for Children, to offer advice and support to other parents with children with challenging behaviour such as ASD or ADHD. They were hoping to get about 10-15 parents to attend, but they were really shocked when 40+ people walked into that first meeting, and 35+ have been attending week after week looking for the help and support they need so badly. This shows that there is not enough information and/or support for these people who only want to give their children the best care that they can.
"My oldest son had Attention Deficit Disorder and we went through the system 15 years ago to get him diagnosed, it took 4 months. I would have expected that the service would be better all these years later but from what I have experienced I am sad to say that they seem a lot worse.
"We need to have all the services working together and communicating better with each other to help these children to achieve the best they can with their lives. We don't need plans being set up that take years to implement, we need action now!"
Autism is a 'spectrum' condition, which means that, while all people with autism share certain difficulties, their condition affects them in different ways.
Some are able to live relatively independent lives whilst others may have quite severe learning disabilities and need specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.
Some people with autism have said that the world, to them, is a mass of people, places and events which they struggle to make sense of, and which can cause them considerable anxiety.
In particular, understanding and relating to other people, and taking part in everyday family and social life may be harder for them. Other people appear to know, intuitively, how to communicate and interact with each other, and some people with autism may wonder why they are 'different'.
Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.
They tend to see things as 'black or white' and take things very literally - they cannot distinguish irony or sarcasm, this can make socialising very difficult.
The three main areas of difficulty for people with autism are:
social communication
social interaction
social imagination.
People with Autism need our understanding. 


** The next meeting of the support group will be at St Catherine's Church, Pontypridd at 10 am on May 1st. Anyone looking for more information is welcome to contact Amanda on 07813 365144

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