Angela joined the autism workshops for parents in Kent and Medway while she was waiting for an autistic assessment for her 12-year-old daughter. Here she shares her story about how she and her family found the experience helpful.

“The workshops and drop-in sessions have been life changing. Before these workshops, I didn’t know very much about autism. We were all struggling a lot as a family and felt no one understood. 

“I have learned so much about how we can do things differently, and how we can adapt the environment to help my child. Hearing other people’s experiences and questions has been so valuable because now I know we are not alone and there are others whose experiences are very similar. 

“I get access to highly skilled professionals who are non-judgemental, kind, understanding, extremely caring and helpful and who can answer even the most difficult of questions.

“I have developed knowledge and skills to help my daughter at home and at school, with her relationship with her sibling, with all the difficulties she faces with every part of her life from the time she wakes up in the morning to going to bed at night and everything in between, including sleeping!  

“It has brought me closer to her because I can now see the world through her eyes and I can understand why and how she struggles, her behaviour and sensory sensitivities, masking and the effects of that, and the dysregulation (meltdowns), and what I can do to help her navigate life.

“I have learned that with demand avoidance behaviour I need to rephrase what I say so that it’s not a demand and I now try to motivate more. For example, one of my child’s intense interests is Taylor Swift’s music. For every task done to get ready for school e.g. getting dressed, I give a fun fact about Taylor Swift. This worked brilliantly well for weeks until it didn’t anymore and so I looked for other similar ways like quizzes to motivate and to also be involved in her interests.

“I am more aware now of how to regulate my own responses to my child’s challenging behaviour, how to negotiate and how to adapt the environment. I have also learned about time-blindness and we have found ways to help her manage this using watch reminders which vibrate quietly.

“We have made so many changes at home in what and how we do things, and I have also helped implement changes at the school to help her. She now feels confident to wear ear defenders at school, in the supermarket, and when people are eating to cope with chewing sounds. 

“My daughter feels she understands herself so much better, she accepts herself and feels confident, and she also feels we understand her better and accept her. 

“Family and friends have always been very accepting but are also now more understanding of her and have empathy for the difficulties she experiences all day, every day.

“I now understand that autism is a spectrum that is not linear and ‘if you have met one person with autism then you have met one person with autism.’

“I have had so many lightbulb moments going through the assessment process with my daughter, and learning about neurodiversity and about mental health that my own life has also started to make sense for the first time ever. I am very happy to have been referred by my GP for an autism assessment (at 44 years old!), and I feel able to ask for the support I need.”

The workshops are open to all parents and carers on the current waiting list but also those who think their child is autistic. If you want to find out more, please email NLDS.APS@nelft.nhs.uk