Autism: You are not alone - West Sussex families of autistic people share their experiences

Autism is a spectrum, this means everybody with autism is different. Some autistic people need little or no support, others may need help from a parent or carer every day.

Claire Krost, from Rustington launched Waking Up To Autism in 2020. Her two children are autistic, she decided to found the charity to offer support to families.

She said: “I am absolutely passionate about creating awareness and promoting acceptance of Autism - it is so misunderstood within society and it impacts on education, employment and general day to day life.

"This results in many children struggling to access school, nearly 80 per cent of autistic adults struggling to gain employment and why autistic adults mental health is deeply affected.”

Since its launch the charity has supported hundreds of families and Claire has created a CPD Accredited course to support mainstream schools embracing neurodivergent students in the classroom. She is also aiming to expand the training into the work place and bridge the gap between school and employment by creating a mentorship programme and work experience journey for neurodivergent young adults.

On the NHS website, it says: ‘Autistic people may act in a different way to other people, they may: find it hard to communicate and interact with other people, find it hard to understand how other people think or feel, find things like bright lights or loud noises overwhelming, stressful or uncomfortable, get anxious or upset about unfamiliar situations and social events, take longer to understand information, do or think the same things over and over’.

Lucy Pratt, from Chichester, has two children Sophie, 12, and Oliver, 7, both have been diagnosed with autism.

When Sophie was five her grandfather passed away and she began to have very violent meltdowns.

Lucy said: “We put it down to grief. What we didn't realise at the time was it was probably more to do with her age when suddenly things start to change for her, friends didn't want to play her way so she would become aggressive because she doesn't understand. She started to struggle with demands made of her, simple things like wash your hands was a challenge.”

Lucy, who is a qualified early years practitioner, was advised to attend parenting courses.

She said: “I gave up trying to get help for Sophie for a while as I struggled with my own mental health and while Ollie went through diagnosis, aged four. When he was diagnosed I attended a Early Birds course and that's when I realised so much added up to Sophie. The strict routines, the sensory needs, the friends being of the opposite sex and usually younger.

“So I wrote to my GP and listed every concern and this year she was diagnosed with Autism Spectrum Disorder.”

The EarlyBird Plus Parent Programme supports parents and carers of school aged children under ten with a diagnosis of autism.

Lucy explains that Sophie has difficulties from the moment she gets up, the family use visual boards and communicate via text message as it is less stressful for Sophie, who has daily support at school and at home.

Ollie’s diagnosis was very different.

Lucy said: “He was diagnosed very quickly, because we had support from this education settings, there was no parent blame, no parenting courses just support. “He had difficulties from a very young age. He has very physical, violent meltdowns, which came completely out the blue for what seemed like no reason. “

Lucy added: “I've learnt so much from both my children I feel I'm a better person because of autism and I wouldn't change them for the world. Sophie loves everything Harry Potter and loves to read, we spend ages in book shops! Ollie loves Maths and has a wicked sense of humour. He's such a cheeky boy!”

Lucy says its important to know you are not alone and to seek support from others including Facebook groups, and charities such as Reaching Families, West Sussex Carers support and PACSO.

She said: “I had to completely reteach myself. I took a course on autism during lockdown, and signed up for lots of mini courses run by the reaching families charity. Don't give up, you know your child best.”

Charity Aspens provides person-centred care and support to children, young people and adults on the autism spectrum and with learning disabilities, and their families, across East Sussex, West Sussex, Brighton and Hove.

Calum Chambers, 17, lives in Ifold, West Sussex with his family. He is on the autism spectrum and is supported by Aspens’ Specialist Support.

The family approached Aspens as Calum was experiencing anxiety which was resulting in behaviours of concern. At this time, the family were feeling frustrated and let down by a number of services and had been told that Calum’s current school were no longer in a position to meet his needs.

Katie, Calum’s mum, said: “We feel hugely blessed and grateful, to have Simon Cannon (Behaviour Support Specialist) from Aspens assigned to support Calum and us as a family from March 2021.

"Aspens has been an invaluable support and a constant in our lives at a time when it was almost impossible to find any service who could provide us with this type of support, have integrity and just be there for a young person and their desperately worried family.”

For more information on Aspens, visit www.aspens.org.uk

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