Supporting people with autism – Experts by Experience

As part of this year’s Learning Disability Week, we’re highlighting our Experts by Experience Programme. Welcome to John, one of our ‘Experts by Experience’ sharing his feedback and ideas to support for people living with autism.

John was diagnosed with autism in 2012 aged 52.  He is an expert by experience for the CCG and helps to ensure we communicate and engage effectively with people living with autism.

He is keen to receive information in easy to understand formats and appreciates different methods work well and there is no one way. He said:

Some people like text, some like charts or rich pictures. Some like lots of in-depth information, some prefer bite-size pieces of information. Some people with autism can’t take in more than what to do in the ‘now’ let alone ‘next’ or the ‘days and weeks’ ahead’ and the implications of the current situation’.

‘Giving information and ensuring that information has been understood is what is important plus frequent reminder of what has been discussed and understood. I don’t think it would be wise to rely on one single source’.

‘People with autism may need support accessing sound information and what it means for them. Some people with autism may need help to manage the fear and stress that lockdown and the pandemic is creating. 

John finds shopping more stressful in lockdown and has shared his tips for helping others, which include:

  • Don’t binge watch the news channels.
  • Try to get a new routine if possible. I go for a walk instead of the gym, (I drive to do this somewhere I feel safe).
  • Carry an autism alert card in case approached by the police.
  • Try to think it won’t be forever. Use a support network.
  • Watch your favourite movies and TV shows to calm yourself.
  • Use services such as C.A.L.M. (for men only) if you feel able to (a big ask if you’ve not done this before, it can be very scary).
  • I’m also trying the Wim Hof guided breathing technique to help mental health and immunity along with a short cold shower daily.
  • I also take vitamins to support immunity, (but remember to check with your GP first, particularly if you have health conditions).

John has also found the following support groups really helpful:

  • NHS Sheffield Adult Autism Neurodevelopmental Service (SAANS).
  • A.L.M. (tel 0800 58 58 58, 17:00 to 24:00 7 days per week, just for men.

John said: ‘Life for everyone has been altered dramatically due to Coronavirus and the lock-down. It has created a loss of opportunity, isolation, loneliness and the ability to do simple things easily like buy food and exercise. It has required the need to change with little notice to prepare, it has caused frustration, anxiety, inconvenience, stress (even fear) and has affected health and well-being. It has thwarted people’s ability to work, to earn money, to sustain self-esteem and confidence and to enjoy a well-rounded personal and family life with all the good things these bring’.

He continued: ‘For people with autism, this loss and lack of opportunity, isolation, stress, anxiety, fear, frustration, lack of employment and income are common, every day occurrences.  Not because of a virus, but because of a neurological condition which affects them and their ability to function well in a world that is not yet set up to fully meet their needs’.

So, when you think of how Coronavirus and lock-down have affected you, please try to think of the impact that autism has and will carry on having on the lives of the autistic community, who live near you and around you’. 

Find out more #LDWeek2020

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