Autism: East Sussex families of autistic people share their experiences

More than one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK.
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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.

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Chloe Cotton, grew up in Bexhill, her son Henry, 6, was diagnosed in April.

Being autistic does not mean you have an illness or disease.Being autistic does not mean you have an illness or disease.
Being autistic does not mean you have an illness or disease.

As a qualified teacher Chloe recognised that Henry had a few autistic traits.

She said: “He was very blunt, he is fussy with food, he needed hardly any sleep. As a toddler he would headbutt the floor or wall if frustrated.”

She adds that he has a fantastic memory - one of his superpowers, he loves Maths and picks up new learning topics quickly.

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“He doesn’t like loud or busy places and prefers to have a couple of good friends to being in a crowd. He gets upset when people don’t follow the rules and likes to know what everyone is doing.”

Chloe and HenryChloe and Henry
Chloe and Henry

Her advice to a parent whose child has recently been diagnosed is to ask for help.

She said: “Help doesn’t seem to naturally be available and it is essential to have a support network. My son attends a local group for neurodivergent people and he loves it, I attend the parent support group which I have found really useful.

“I think it is really important to ignore looks and stares from others when out and about. Henry will often dress inappropriately- a suit in the park, a thick coat in summer, shorts in summer but as long as he is happy we pick our battles and try to work with what he is telling us he needs.

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“I think it is important to listen to a child. Henry recently didn’t attend the school disco, he said it would be too hot, too loud and too many people and so he didn’t go. We don’t force him into situations we know he won’t enjoy, this can be difficult as society feel they know best sometimes but Henry’s happiness will always come first.”

Charity Aspens supports families and those diagnosed with autism and learning difficulties.Charity Aspens supports families and those diagnosed with autism and learning difficulties.
Charity Aspens supports families and those diagnosed with autism and learning difficulties.

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’.

Diane Cook’s son was diagnosed with autism when he was four.

The Hastings resident said: “He was diagnosed when we noticed that there was something in his behaviour that was very different to our other children but it took two years to be confirmed that he had autism.

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"Ryan, now ten, suffers from autism and anxiety life for him is hard. He can’t take change, cannot take being away on school trips his anxiety hits a all time high, he cannot take being in a very busy environment, and as for the behaviour I’ve learnt when things are changing, his consultant said it’s like waiting for a kettle to boil. He does well academically, and is very knowledgeable but people can be very ignorant to this condition and just label them naughty.”

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.

The charity’s services in Sussex include children’s and young people’s groups, activities and support, support for families, specialist support, registered care homes, supported living, community outreach, day services and a national live chat helpline service.

The charity’s support for young people and young adults helps them to develop skills to boost their independence and confidence. The support they provide helps to increase understanding, challenge perceptions and encourage acceptance. Aspens offers support, advice and guidance to parents, siblings, grandparents or friends of someone with a disability, of any age.

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Michael lirette, who lives in Eastbourne, said: “Having an autistic child is a joy. The children struggle to cope with the world. There is a saying I would not change my child for the world but I would change the world for my child and this is universally true. It is a case of not breaking routine not taking the child out of their comfort zone. They do have to cope with this confusing complicated world but why make it any harder for them?

“It is a rewarding role looking after an autistic child but it takes it out of you and leaves you emotionally drained most days. Unless you step in a person’s shoes you should never judge and with autism there is a bigger picture.

"The obsessions create talented gifted people because whatever interests these people they will give it their all. I love my child for who he is not for what he is not for his society demands he fits in. Everyone finds a niche in life it just takes time.”

Every family we spoke to highlighted the importance of seeking support and wanted families to know they are not alone support is available to you.

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

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