My Life With Autism

Act Now For Autism

Last July, we published blogs featuring autobiographical accounts sent to us by supporters who very kindly agreed to share their experiences.

As part of Autism Awareness Month we are continuing this series of blogs with 4 more accounts written by parents of autistic children - we are very grateful to all the families concerned.

Lynne's story: 

"2002 was to be an eventful year for me. In March that year I was 7 weeks pregnant with my 2nd child when after a series of infections, I was struck by a pain I've never felt the like of before, along with the inability to move. After a few weeks it was gone only to return 3 months after Rory was born that September. Many, many months later, I discovered this was the start of my own disability - arthritis.

Rory was born by c-section, looking healthy, except for his feet. They were curled up and and wrapped back around his own legs, something I'd never seen before. But we did the physio...they slowly improved.

Rory's wasn't feeding properly - he practically choked every time I fed him...midwives thought I was overreacting till they saw it for themselves. Still nothing was done, no one was interested, so I supported him through it. Both of these things were due to benign congenital hypotonia. It took me till march 2004 when Rory was 18months old, to get them to listen and to get that diagnosis. Kevin, Rory and myself sat in front of a panel of 'professionals' at the local hospital as they dismissed my concerns, and told me that his eye contact and interaction was fine " he'll never be an athlete, but he will be fine by the time he is 5. It's benign, congenital hypotonia, nothing else". Its amazing what they 'knew' after seeing him for only 20minutes. Kevin was relieved at the reassurance from them, but I never believed they were right, much as I wanted it to be true.

Rory slowly met most of his milestones late, but he met them all bar one. He was a happy, chatty wee boy. He adored his sister, loved to sing, play, learn, dress up in her clothes, walk around with her hairband on, carrying her handbag, pretending to chat to someone on his toy phone. Play tea parties with his teddies on a picnic mat in the garden...

In 2005 he started mainstream playgroup. I remember he loved his wee friend that he made and played with him, gave him hugs, shared things with him. It was during these next few months Rorys speech started to lessen and his eye contact all but disappeared. He couldn't cope at playgroup and became scared of the other children. Eventually on one of the days I was at playgroup helping out and saw him screaming, scared if another child came near him, walking round the edge of the room trailing his hands on the wall, picking up chalk and eating it, I made the decision to take him out of playgroup.

I worked so hard with him at home but couldn't reach him and watched all the things he'd learned, the love he had for life, disappear before us.

I researched every night once he'd gone to sleep until I found a website with a checklist of all the symptoms Rory had. I ticked them off one by one. I remember the empty feeling in my gut, it felt like the child I knew had died and I was grieving.

I knew autism had taken our son. And we had to watch the process of him slowly disappear in front of us no matter what we tried. It took from that time until July 2006 to get the diagnosis that by this point we so both wanted and dreaded - Rory has autism."