165 days after finding out their son had autism, the Evans family had still received no professional support. This is their story.
My son Ethan was diagnosed with autism on Saturday 9 August, 2014. We were told to wait for an appointment with a more specialist doctor who would refine the diagnosis.
I walked out of the surgery holding Ethan’s soft little hand, the usual one-sided grip, and smiling reassuringly into his big blue eyes. We returned home to wait for the appointment.
I read articles and ‘googled’ autism on the net – everything that as a specialist nurse I warn my own patients not to do without the professional support to put things into context. It was a time of great anxiety, uncertainty and unpredictability.
Nothing happened for 165 days. I reached a point where I couldn’t go on. I rang Wirral Autistic Society’s Rainbow Resource Centre in Birkenhead and Terry invited me in for a chat. She very calmly and confidently took me by the hand and gave me the tools I needed to help me reach my child and communicate with him. I cried with relief.
We still had 43 days to wait to see a doctor.
Had we ‘slipped through the net’? Were we just unlucky? After that first consultation we received no direction on how to deal with everyday life with Ethan and how best to support him. The mental pressure and heartache were enormous.
We have been involved with the society for a few months and I cannot stress enough how crucial the service is to families like ours. We now have a real snap-shot into Ethan’s day at school, we use emotion faces and similar communication tools that help him to explain his day to us. We are still working through friendships, what is appropriate and what is inappropriate. Who in Ethan’s life are good, safe and real people, the relationships he can forge, and who he turns to in times of need. We are making sense of the environment confidently, and reinforcing what we learn. We are growing together.
Ethan enthusiastically attends the computer club on Thursdays and goes to sleep smiling. He thinks he may even have made a friend. This is all pretty special as Ethan had no friends.
I simply cannot thank the Rainbow Resource team enough for their support, recognition and understanding. But I cannot believe that an individual can receive a diagnosis then be sent off to wait, with no support or help. If I could change anything about this system, it would be that every single GP in our region knows and understands the importance of what the Wirral Autistic Society does and how you are willing to help and support people during this awful period of limbo.