The autism diagnosis that took half a century

A pensioner who has devoted half a century to looking after her autistic son tells Health Reporter Diana Prince about her lifetime of care.

GREAT-GRANDMOTHER Sheila Baker said it took 50 years for doctors to diagnose her son with autism.

Sheila, aged 75, of Whitleigh, cares for her son Paul and daughter Catherine around the clock. Both are in their 50s and have learning disabilities.

An earlier diagnosis may have helped other people understand and manage Paul's condition, said Sheila.

The mum of six told her family's story to raise awareness of a new Plymouth support group launched to help carers of people with autism (see panel).

Understanding of the lifelong disability, which affects how people communicate and interact, has changed dramatically in the past century.

Paul was diagnosed as 'mentally handicapped', a term no longer used, when he was four years old.

The family was last year told he has autism.

Sheila said: "It's taken 50 years, a lot of heartache and headaches but we got there in the end.

"I often thought he was autistic through knowing other children with the condition, but nobody picked up on it. I became 100 per cent sure and I'm not one to give in if I know I'm right.

"It doesn't make a difference now, but it may have done before. Sometimes people don't understand why Paul acts as he does.

"Everything has to be in its place. He won't go to bed unless he's straightened up all the knives, forks and spoons in the kitchen. His room is immaculate. You could shift a book and he would immediately know. He collects things, key rings and football shirts."

Paul, aged 50, and Catherine, 53, who has learning disabilities and severe epilepsy, have lived with their parents their entire lives.

The family moved to Plymouth from Strete, near Dartmouth, more than 40 years ago so Paul could attend Downham School.

Sheila said support has changed over the years.

From the age of 16, Paul attended Newnham Resource Centre in Plympton. He was there for 25 years, until the day centre closed just over a decade ago despite protests from families.

Sheila said Paul had thrived at Newnham, where he regularly took part in athletics. Through the centre, he competed in the Isle of Wight Special Olympics, winning a gold medal in the men's 400m in 1987.

Sheila and Bryan provide their children with 24-hour care. Sheila often sleeps in her daughter's room, in case she has a seizure.

"I care for them because I love them," she said. "And I will care for them for as long as I can, until I go out in a box.

"It's been hard work, but that's not because of my children, it's because of other people who don't understand.

"I've never treated them differently than my other children. I've brought them up to do things, to help around the house. They are wonderful and loving.

"I've got a good family; they will make sure Paul and Catherine are properly looked after."

Sheila and Bryan also have 13 grandchildren and seven great-grandchildren.

Sheila and Bryan receive help from the Older Carers Advocacy Service. They have also started attending a new support group started by Carers Champions. The group aims to fill a gap in services for older carers of people with autism.

Sheila said: "It's absolutely smashing. You meet people who are in the same situation as you.

"It's lovely to be able to have a cup of tea, a bit of cake, share stories and find out you are not the only one dealing with these things.

"It does make a difference to your life when you know somebody is there to help."

Help at hand

A support group for carers of adults with autism has been launched in Plymouth.

Organisers Carers Champions are keen to hear from anyone interested in taking part.

Sarah Tuhill, of Carers Champions, said: “We have started this group so that carers of those with an autistic spectrum condition can meet others in a similar position to get mutual support and help them cope within their caring role.

“We found that when we were out and about doing outreach work in the community, we didn’t really have anywhere to refer people on to. We are trying to get the group off the ground so there’s somewhere for people to go to meet others in their situation, talk and get support.

“We have spoken to carers of those with autistic spectrum conditions of various ages and decided to open this group to adult carers of other adults including carers of those aged 16 and over going through the transition process from children’s to adult services.”

The meetings include free support and information for unpaid carers, and speakers from local services. Carers Champions, funded by Plymouth City Council, provides free support and information to unpaid adult carers of other adults within Plymouth.

Launched in January, the group meets monthly at Scott Business Park. To attend, email Carers Champions at carers@colebrookhousing.co.uk or call 01752 211348.