By Jane Elliott
BBC News health reporter
Jacqui Jackson has not had a proper night's sleep for years.
Jacqui's four boys are autistic
She is the mother of seven children, ranging from nine to 23 years old, four of whom have some form of autism.
Jacqui, whose story was featured in a TV documentary, is used to going for nights without any sleep at all. On other nights she cat naps for two or three hours at a time.
"Physically it does take its toll," she says. "It gets you down and it affects how you work.
"I am doing a PHD into sensory issues in autistic children and I find it very hard to write my thesis when I am so tired.
"We have tried everything to improve the children's sleep patterns, from drugs to homeopathy and massage. I have tried everything I can.
"One thing that did have a slight effect was melatonin, but nothing worked well or for long."
Luke, aged 18 has Aspergers Syndrome and has erratic sleep patterns.
When he was younger he slept during the day, even now his sleeping is fitful.
Ben, who is aged nine and autistic, has still not slept for a full night.
Joe, aged 13 has ADHD and sleeps soundly once asleep, but Jacqui said it takes a lot of time to get him to drop off.
And Matthew, who is 23, who has milder autism, had and still has problems sleeping.
"I am not superwoman, but I can go on with two or three hours a night, sometimes without any sleep at all. But they need 24-hour care.
"They have food allergies, and without somebody watching them they will go rampaging around the kitchen.
"We have alarms on all the doors and on the medicine cabinets," she said.
"We live in a bungalow and the boys sleep downstairs and the three girls upstairs.
"They have locks on their doors and because of all the noise they can now sleep through anything."
Although Jacqui's family's situation is so severe, studies have shown that of the 500,000 people on the autistic spectrum in the UK most have some sort of sleep problems.
Over a third of them suffer from serious sleep problems that are debilitating for their families, partners and carers.
Now Research Autism has set up a forum to get parents, carers and experts together to try and share experiences and see if they can find solutions.
The first meeting was held this month and there are hopes to have similar meetings twice a year.
"They are hoping to help offer practical solutions for different sleep patterns," Jacqui explained.
Richard Mills, director of research for the National Autistic Society and Research Autism, said solving sleep problems was vital to promote well-being.
"We are talking about people having only three or four hours sleep a night.
"Others can be awake at night and asleep during the day, some go without sleep for days and others sleep so much they can not be roused.
"What we are trying to do with this forum is to bring people together with people who might be able to help them."
He said it was vital to remember that the problem also affected adults with autism as well as children.
"This could be people in their 40s and 50s who have had these problems all their lives and have not got better.
"No one thing seems to be effective for everyone, but what we are hoping to do is to look at the problem in its entirety."
He said it was important that the problem was tackled urgently.
"After all sleep deprivation is used as a form of torture by some regimes," he said.
Jacqui Jackson said she was not expecting the forum to come up with an immediate solution to her family's sleep problems, but she did hope to be able to share her tips on sleep management in the hope of helping others.
"I can tell them about a myriad of things that might work for them. What is not working for my boys could work for other people."