Autism need not be life limiting

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As an ambassador for autism support groups, Kirsty McClean, believes user-lead groups provide crucial help where mainstream services can't 

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11th November 2015 by TFN Guest 0 Comments

Jak wasn’t diagnosed with Asperger’s until quite late on in his schooling.

Children found it hard to connect with him while he had no such trouble. He’d just gallop up to folk and expect them to be as fascinated with things as much as him.

By the age of six, this type of behaviour led us to suspect our son was different. It wasn’t a difference with which we couldn’t cope; more a set of circumstances we knew we’d have to adapt to.

Once Jak was finally diagnosed, his school was great and readily adapted to his needs. As were all the staff at the National Autistic Society Scotland who gave us help, advice and support.

The experience led me to become an ambassador for the NHS, raising awareness in north Glasgow among parent and care groups.

The role mostly involves helping parents access services, advice and information. Diagnosis itself can be a battle but for many that’s just the beginning: seeking support can be a minefield. That’s where I’m able to help. 

Support is key in any life-limiting condition

Support is key in any life-limiting condition

Local GPs, health professionals and social workers signpost parents to the fact that external, independent advice is available. And many of these parents in turn become ambassadors for autism in their own right as they often share their experiences with others.

As a spectrum disorder, people with autism display a wide range of behaviours and abilities. That’s why it is so difficult to diagnose.

Some people with autism have severe learning difficulties; some can’t communicate. But while parents and those around them might think there is no hope, there’s much that can be done to develop people on even the most severe end of the autism spectrum.

Lindsey, one of the parents who attends North Glasgow NHS Parents’ Group, believed her son had little hope of coping on his own.

That was two years ago and now, with support, he’s able to get a bus, go to the shops and do basic kitchen tasks such as make tea and sandwiches. That’s a massive step and it’s changed the family’s entire outlook and has given them a lot of hope for the future.

Support is key in any life-limiting condition. Autism doesn’t mean a person’s life is stunted. It merely means there’s more to understand about them, about their needs and requirements. Yes it takes more effort, in many cases much more effort, but that effort does not need to be undertaken alone.

While there is much more that needs to be done at the clinical stage, there is now more support than ever from third sector groups as well as the NHS. And agencies are now joining up to consolidate this support meaning parents and families have more support available than ever before.

Outwith the NHS I think it’s essential support services are user-led. Easier said than done but the NHS realises this and has taken the steps to support these groups. Funding for my role comes from both Glasgow City Council and NHS Greater Glasgow.

It doesn’t need much money but where my role benefits is using both the council and the NHS’s networks to identify areas of need. That has proven invaluable.