This is a personal account of how difficult it is to find accurate and reliable information about autism interventions .
Please note that it is a personal view and does not necessarily represent the views of Research Autism.
My daughter, who was diagnosed as on the autistic spectrum when she was 6, had sleep problems from the day she was born, as do many children with autism. Not only did she battle against going to bed or to sleep, but also she would wake up throughout the night and then have difficulty falling back to sleep. She had no respect for night or day, dark versus light!
Sleepless nights are to be expected when you have a baby, but what I didn't expect was to be sleep deprived for 13 years!
My husband and I had advice from our health visitor and our GP, we referred ourselves to a clinical psychologist, we watched every self help programme on TV and read every book about sleep problems we could find. Over the years, we found out - drip by drip - about various ideas and interventions that might help. We tried each discovery in turn - we bought special white noise tapes, set up reward programmes, slept on the floor beside her bed or sat up all night listening to her scream. Some things worked for a little while and some made no difference at all.
Then, two years ago we heard about Melatonin. Back we went to the Internet to find out more - mostly from research papers published in the USA. What we read was encouraging - so armed with information we approached our GP. My daughter was given Melatonin and I am happy, no, ecstatic to say, we haven't looked back since. At last she slept and so did we.
But, it took us 13 years to find out what we did. I know that if there had been a website like Research Autism earlier in my daughter's life, we would have been saved time, money and more importantly lots of distress. What a difference it would have made if we could have looked at all the various interventions, in one place and at one time, and weighed up what might work for us based on factual evidence rather than anecdotes and suggestions. Any parent of child with autism has to become an expert about their child, this website helps them to have authority too!
If you are the parent or carer of someone with autism and you would like us to publish your story on this website please email firstname.lastname@example.org
Please note that we reserve the right not to include your story if we feel that it is not appropriate.