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Asher is 18 years old, has autism and a Pathological Demand Avoidance (PDA) profile. Her mum, Paula, talks about their journey getting the right support.
We have been fighting to get recognition, support and services for her needs, literally from her first day at school at the age of 5 when she began self-harming and attempting to kill herself. This has often been a lonely battle.
I was forced to get a private autism and PDA diagnosis, as we were refused both of these locally. I used a solicitor to get my daughter a place at an out-of-county specialist school in a PDA unit where her needs were met. She absolutely loved her school. However, her mental health was still very poor and she was not receiving any meaningful help. Her anxiety was massive and she was struggling to even get to school.
Cue help and support from Kids’ SENDIASS service, particularly in school meetings with all the professionals. I recall one meeting where I was accused by a social worker of abusing my daughter because I was not giving classic boundaries and consequences. Kids and others at the meeting were quick to dispel that comment and back-up my alternative, PDA-friendly parenting!
Asher faced more challenges but has since gone on to teach dance to neurotypical and neurodivergent youngsters, and to studying at the Northern School of Contemporary Dance, where she hopes to get her degree. She plans to open her own fully-inclusive dance school when she is qualified. She has also done voluntary presentations and training sessions in autism, PDA, mental health and eating disorders for various organisations.
Kids were the first people to ever back me up in meetings regarding education. They were knowledgeable, supportive and helpful in every way. This was the first time in many years that I had met any professionals (other than those at the special school) who understood and supported both me and my youngster. I totally trusted them so when I was approached years later to join Kids, I rushed at the chance!
I had not worked for some time due to the needs of my daughter, but I have been so welcomed and wanted here at Kids. I started in February as a sessional practitioner, delivering the Healthy Parent Carer Course for the Community of Experience. I am now a Senior Practitioner helping to run the Community of Experience, and I am part of the befriending scheme. I feel that my work is so important because I am supporting and empowering parents just like myself.
A large part of my journey has been extremely lonely and isolating and there was little to no support from people. I am now able to be an integral and important part of that support for others. As well as my work for Kids, I also support other parents who have autistic and PDA youngsters with eating disorders and I am just beginning to train for the PDA society.
We’re on the side of two million children and young people with disabilities and special educational needs and their families. With your help we can create life-changing opportunities for young people like Asher.