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| 'Bail-out' hope for autism carers | 'Bail-out' hope for autism carers |
| (about 5 hours later) | |
| By Stephen Robb BBC News | By Stephen Robb BBC News |
| Mr Corea wants an end to a "postcode lottery" in autism supportProposals intended to improve support for people with autism have been debated in Parliament, with families affected by the disability hoping the plans could eventually transform their lives. | |
| "Ever since then we started this long, hard battle," says Ivan Corea, describing what followed his son Charin's diagnosis with autism in 1998, aged two. | "Ever since then we started this long, hard battle," says Ivan Corea, describing what followed his son Charin's diagnosis with autism in 1998, aged two. |
| "If the government can bail out banks," says Mr Corea, "why is it that as parents and carers we have to fight for a few hours of speech therapy and respite care and education for our children? | "If the government can bail out banks," says Mr Corea, "why is it that as parents and carers we have to fight for a few hours of speech therapy and respite care and education for our children? |
| "That is not right. The government needs to bail out the autism community." | "That is not right. The government needs to bail out the autism community." |
| There are an estimated 500,000 people with some degree of autism in the UK, but few local authorities know how many people in their area have the disability. | There are an estimated 500,000 people with some degree of autism in the UK, but few local authorities know how many people in their area have the disability. |
| The National Autistic Society (NAS) estimates that more than 60% of adults with autism do not get enough support. | The National Autistic Society (NAS) estimates that more than 60% of adults with autism do not get enough support. |
| I can't begin to tell you how many hopes are pinned on this Ann Griffin class="" href="/1/hi/uk_politics/7915261.stm">Autism bill clears first hurdle Mr Corea and his wife Charika's difficulties accessing public services for their son drove them to launch an Autism Awareness Campaign in 2000, and set up the UK Autism Foundation charity two years ago. | |
| Mr Corea, of Buckhurst Hill, Essex, says: "It leaves you totally isolated and feeling very desperate and abandoned by society and by the system." | Mr Corea, of Buckhurst Hill, Essex, says: "It leaves you totally isolated and feeling very desperate and abandoned by society and by the system." |
| Legal requirements | Legal requirements |
| A private member's bill that would put a legal duty on councils and NHS services to meet autism sufferers' needs cleared its second reading on Friday to enter the detailed committee stage. | |
| Meanwhile government proposals for "statutory guidance", rather than legislation, to improve provision of services, have been hailed as a "landmark victory" by the NAS. | |
| "I can't begin to tell you how many hopes are pinned on this going through," says Ann Griffin, whose sons Peter, 28, and Stephen, 18, both have the autistic disorder Asperger's syndrome. | "I can't begin to tell you how many hopes are pinned on this going through," says Ann Griffin, whose sons Peter, 28, and Stephen, 18, both have the autistic disorder Asperger's syndrome. |
| Mrs Griffin says people with autism "desperately need to be understood""If they make it a legal requirement to provide services, and make it a legal requirement to count people [with autism], it would make a huge difference," she says. | Mrs Griffin says people with autism "desperately need to be understood""If they make it a legal requirement to provide services, and make it a legal requirement to count people [with autism], it would make a huge difference," she says. |
| "Up until now what we have had is guidance. If it's statutory and it's a legal requirement that they provide these services, then we have a leg to stand on. | "Up until now what we have had is guidance. If it's statutory and it's a legal requirement that they provide these services, then we have a leg to stand on. |
| "We can go to them and say, 'Why aren't you doing this?'" | "We can go to them and say, 'Why aren't you doing this?'" |
| Mrs Griffin, 55, and her husband Laurence, 59, care for their sons at their home in Hatfield, Hertfordshire; Peter and Stephen are among the 40% of adults with autism who live with their parents, according to NAS estimates. | Mrs Griffin, 55, and her husband Laurence, 59, care for their sons at their home in Hatfield, Hertfordshire; Peter and Stephen are among the 40% of adults with autism who live with their parents, according to NAS estimates. |
| More than 60% are thought to be financially supported by their family. | More than 60% are thought to be financially supported by their family. |
| 'Crisis point' | 'Crisis point' |
| While autism affects sufferers in different ways, a high intellect alongside an inability to perform everyday tasks are common, says Mrs Griffin. | While autism affects sufferers in different ways, a high intellect alongside an inability to perform everyday tasks are common, says Mrs Griffin. |
| Her eldest son has a Master's degree in astrophysics but cannot cook for himself, she explains. | Her eldest son has a Master's degree in astrophysics but cannot cook for himself, she explains. |
| "He needs prompting to put clean clothes on, and for having a wash. It's down to that kind of level. Things that you and I take for granted, he doesn't know how to do." | "He needs prompting to put clean clothes on, and for having a wash. It's down to that kind of level. Things that you and I take for granted, he doesn't know how to do." |
| She says: "He will be the first to recognise that he is heavily dependent on his parents for most of day-to-day living. | She says: "He will be the first to recognise that he is heavily dependent on his parents for most of day-to-day living. |
| "All his financial, practical and emotional support comes from us." | "All his financial, practical and emotional support comes from us." |
| Who will look after my son when I die? That's something that I always think about Ivan Corea NAS research found that 60% of parents believed that a shortage of support led to more severe needs later on. | Who will look after my son when I die? That's something that I always think about Ivan Corea NAS research found that 60% of parents believed that a shortage of support led to more severe needs later on. |
| It is also the cause of the mental health problems suffered by one third of adults with autism, the charity estimates. | It is also the cause of the mental health problems suffered by one third of adults with autism, the charity estimates. |
| "You have to get to crisis point before someone will step in and throw some services at it," says Mrs Griffin. | "You have to get to crisis point before someone will step in and throw some services at it," says Mrs Griffin. |
| "But if they wait until it gets to crisis point, it's much harder to fix the problem." | "But if they wait until it gets to crisis point, it's much harder to fix the problem." |
| She adds that she "wouldn't mind betting" that there are above-average levels of mental health problems among autism carers. | She adds that she "wouldn't mind betting" that there are above-average levels of mental health problems among autism carers. |
| Family breakdowns | Family breakdowns |
| "It places such enormous burdens," says Mr Corea, whose wife gave up a career as a head teacher to become full-time carer for Charin, now 13. | "It places such enormous burdens," says Mr Corea, whose wife gave up a career as a head teacher to become full-time carer for Charin, now 13. |
| "It has affected our careers, it has affected our personal life," he says, adding that the couple's Christian faith has helped keep them together. | "It has affected our careers, it has affected our personal life," he says, adding that the couple's Christian faith has helped keep them together. |
| But he says: "Many, many families are breaking down because people cannot cope with the pressure. There is no support for marriages." | But he says: "Many, many families are breaking down because people cannot cope with the pressure. There is no support for marriages." |
| He goes on to express the fear felt by more than 90% of parents of autism sufferers, according to research. | He goes on to express the fear felt by more than 90% of parents of autism sufferers, according to research. |
| "Who will look after my son when I die?" says the 51-year-old. "That's something that I always think about - his future." | "Who will look after my son when I die?" says the 51-year-old. "That's something that I always think about - his future." |
| "We cope, but we cannot cope forever," says Mrs Griffin. | "We cope, but we cannot cope forever," says Mrs Griffin. |
| "All us parents are just getting older and older; what happens to our children when we die?" | "All us parents are just getting older and older; what happens to our children when we die?" |
| She offers a stark, final warning: "Autism isn't going anywhere." | She offers a stark, final warning: "Autism isn't going anywhere." |