Page 59 - SEN113 SEN Magazine July-August 2021-V3

Autism About the author Mother to autistic teenage twins, Debby Elley is co-founder and co-editor of AuKids magazine together with Tori Houghton. She is the author of 15 Things They Forgot to Tell You About Autism and co-author of a new children’s book, The Ice Cream Sundae Guide to Autism. aukids.co.uk @aukidsmag “To be proactive requires time, effort and energy” help, there are others who have the opposite problem. Keenly aware of government cuts and limited budgets, we tend to self- assess whether we are as deserving of help as other families. For a long time, I self-assessed sufficiently to talk myself out of asking for respite. There were those worse off, we were managing, we are quite a resilient family... We were tired, but others were tired, too... I was unable to be objective about our needs. We’ve run out of physical energy In the town where I’m based, there’s a fantastic organisation called Signpost for Carers. The volunteers who work there have immense knowledge and experience. They aren’t called upon nearly enough despite advertising on parent forums and on social media. You’ve got to ask yourself why parents and carers seem so apathetic. To be proactive requires time, effort and energy. Day calls are hard to make if you work, and by the evening you’re too tired to do much even if an advice centre is open. It’s a Catch 22 – you need respite in order to find out how to seek respite! We’re tired of explaining In addition, some of us are quiet because we are tired of going through lengthy explanations. We’ve done it so many times, and sometimes we’ve given organisations great detail on our lives only to find that they haven’t been that helpful. There’s a certain skill required when it comes to reducing your entire history into a nutshell. It can be exhausting. The best professionals are the ones who realise this and ask guided questions, explaining what sort of information is needed and why as they go along. We’re not used to being negative In order to ask for help, we have to highlight those aspects of our lives that cause us the most difficulty. Sometimes, we struggle to admit this to ourselves. I’ve forged a career encouraging others to champion their autistic children, and to focus on what they can do rather than what they can’t, to emphasise what’s great about them before the more challenging aspects of their nature. If you view autism in terms of positivity and opportunity, you enable your children to be confident in who they are. In order to ask for support, parents like me need to entirely switch that thinking. This is something we aren’t used to doing. We’re seen by the outside world as ‘copers’ and our positive energy may well give us great resilience. But there’s a limit – and sometimes we just don’t recognise when we’ve reached ■ exhausted parents it. And even if we sneakily suspect we have, we just don’t have the inclination to sound like a ‘moaner’. We’ve adapted to stress When you have a child, you expect life to be stressful. Once you know they have autism, that extra stress doesn’t really reduce, your system just accommodates it as the ‘new normal’, to coin a topical phrase. It usually takes someone else to point out that you’re constantly on red alert. Alarmingly, research shows that even when carers aren’t reporting feeling stressed, they still have increased levels of the stress hormone cortisol, which has been linked to heart disease. We’ve given up on the system By the time your child has moved through junior school, you have sat through a lot of meetings and been in contact with 59 senmagazine.co.uk SEN113