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Lismore Island, Scotland

Autism: it’s time to think differently

Published on 12 Jan 2010

Thousands of adults with autism are missing out on vital services because of a disjointed approach to the condition, claims an MSP who wants to introduce a national autism strategy.

Liberal Democrat MSP Hugh O’Donnell has proposed a member’s bill at Holyrood that would require the Scottish Government to take the lead in co-ordinating services for children and adults with autism ­spectrum disorders (ASDs).

Mr O’Donnell says the Scottish Autism Strategy Bill is part icularly designed to address the problems people with autism encounter at transitional stages of their lives, such as switching schools or moving from education to work.

“Disruption and changes to ­routine can be much more traumatic for young people with autism than for ordinary teenagers – and heaven knows it can be traumatic enough for them,” he says. “So the thrust of this is to try to make sure that these young people, at a crucial stage of their lives, don’t have setbacks that can wipe out any success they may have had in the education system.

“Because autism isn’t a mental health issue or a learning disability issue, in terms of statutory obligation it falls between a number of stools. As a result the service package available is patchy to say the least. A lot of local authorities don’t even know how many people there are in their area with a diagnosis of autism.”

it only takes a few small adjustments and a positive attitude to allow me to contribute in a ­meaningful and healthy way

Elkie Kammer

The National Autistic Society Scotland, which last week launched its own campaign entitled We Exist – A Bill For Autism, A Bill For Scotland, says 94% of people it surveyed ­wanted to see a Scottish autism ­strategy. Figures compiled by the National Audit Office suggest that failure to meet the needs of people with autism is costing the Scottish economy £2.3bn a year through lost job opportunities and the increased burden on public services and families.

With the passing of the Autism Act at Westminster in November 2009 and the establishment of strategic action plans in Wales and Northern Ireland in the past two years, Scotland is now the only part of the UK without a central strategy for people on the autism spectrum.

Support services for autism, which affects an estimated 50,000 people in Scotland, are currently run by health boards and local authorities and can range widely, including speech and language therapy, classroom support, social work and respite care.

The proposed bill would make it a duty for ministers to draw up a ­strategy for autism, incorporating national standards. Mr O’Donnell hopes the bill will be ready to present to Holyrood by the summer, ­following public consultation.

He explains: “At the moment there is a postcode lottery and we need a national approach. Government is supposed to take a lead in these ­matters. It’s not good enough for them to bat it back to health boards and local authorities.

“The idea is to make ministers responsible for a regular annual review of where local authorities are in terms of developing co-ordinated services for people with autism. It would be down to the local authority to have those plans in place and to make sure that those plans met with the national strategic objectives. It’s what’s done in other areas such as heart disease and epilepsy.”

In a survey of people with ASDs ­carried out by the National Autistic Society Scotland last year, one-third of respondents said they had had to go to a tribunal to get the right support.

There are also big information gaps. Last year, four local authorities were unable to provide figures for the first Scottish Government survey of the number of adults in the country diagnosed with autism.

Parents and carers have spoken of the difficulties involved in transition between schools, or moving from one local authority area to another, while young adults often find themselves effectively barred from employment because of a lack of basic support.

Gillian Naysmith, from Dunfermline, has a four-year-old son, Sam, who has been diagnosed with autism and global developmental delay. She says his care has been held up ­repeatedly by poor transition and conflicting advice from professionals.

“On leaving the child development centre, nobody told me that some services would stop and that I would have to physically go to Sam’s paediatrician or GP or health visitor to have him re-referred,” she says.

“We then had to be put back on the ­waiting list, which took around 10 months – a lot of wasted time when they say that early intervention is the best thing possible to help our children.”

She adds that the varied advice offered by experts is confusing for parents. “As a mum, I am looking for advice from the people who should know what the best options are for my son,” she says. “Transitional ­periods should be much smoother. People affected by autism should get all the help they require.”

Problems also often become compounded when children leave school. An NAS report compiled in 2009, ­entitled Don’t Write Me Off, found that only 15% of adults with autism had a full-time job.

James Cusack, who is about to complete a doctorate at Aberdeen University, believes it was only due to the persistence of his parents that he was able to go into higher education. The 24-year-old, who has Asperger’s syndrome, says: “My parents fought desperately to ensure that my local education authority met my needs. The LEA agreed to offer an education and this changed my life. The evidence really does show that without this I would have been in residential care, and on benefits, for the rest of my life.”

One of the strengths of the ­proposed autism bill, says Mr O’Donnell, is that it is a low-cost approach. Much of the data collection, for example, can be achieved using existing surveys. “It would not need a completely new recording methodology,” he says.

“It’s a very simple bill. We don’t anticipate that in terms of cost and workload it will be a huge burden, and that’s important given the circumstances local authorities face.”

Freezing people with autism out of the workforce is not just frustrating and debilitating for the individual concerned; it has a huge cost for ­society through benefits and the cost of deteriorating mental health. The National Audit Office has ­estimated that if just 4% of adults with ­Asperger’s syndrome – a form of autism – were identified and given support, the services would ­effectively pay for themselves through the costs saved to the public purse.

Elkie Kammer, who works with children with developmental disorders in Inverness and has been diagnosed with Asperger’s syndrome, says it sometimes takes just a few small adjustments to allow someone with an ASD to lead a productive life.

The 46-year-old struggles with hypersensitivity to noise, a common manifestation of autism. “At work, electronic noise, background noise or too many people talking at once would cause me so much stress that I had to change jobs very frequently,” she says. “Yet it only takes a few small adjustments and a positive attitude to allow me to contribute in a ­meaningful and healthy way.”

NAS Scotland says the Scottish autism strategy needs to include a duty on the Government to identify the numbers of people with autism. Councils should be required to draw up service plans and train staff. Carol Evans, NAS national director for Scotland, says: “The Government must recognise that people with autism should not be disadvantaged, and support our campaign.”

The case for a national strategy

  • About 50,000 people in Scotland are believed to have an autism spectrum disorder (ASD).
  • About 4900 schoolchildren with ASDs have additional support needs.
  • Half of all appeals to the Additional Support Needs Tribunal are made on behalf of children with autism.
  • Only half of specialist teachers in Scotland have had autism-specific training.
  • Fewer than three-fifths of councils offer specialist units for secondary-age children with ASDs.
  • More than half (53%) of adults with autism say they received no support on leaving school.
  • Only 15% of adults with autism are in full-time employment, yet 79% of those on incapacity benefit said they wanted to work.
  • The National Audit Office believes services for adults with ­Asperger’s syndrome would be cost-neutral if 4% of those adults were offered support, due to savings in medical treatment and benefits from those who could find work. Supporting 6% could save £38m per year UK-wide.
  • 95% of people in the UK surveyed by the National Autistic Society believed councils and health boards should have a legal duty to improve services for people with autism.

 

The proposal for the bill is available on the Scottish Parliament’s website. Visit www.scottish.parliament.uk/s3/bills/MembersBills/index.htm.

Source:   http://www.heraldscotland.com/news/health/autism-it-s-time-to-think-differently-1.997865

 

O’Donnell launches Autism Bill

Liberal Democrat MSP for Central Scotland Hugh O’Donnell has launched a Members’ Bill to introduce a national strategy for autism services in Scotland.

Scotland is the only part of the United Kingdom without a national autism strategy, which leaves people with autism in Scotland and their carers facing something of a postcode lottery in terms of service provision. Mr O’Donnell’s Bill will ensure national standards of service and provision and guidance to local providers.

Commenting, Mr O’Donnell said:

“Some of the most successful laws passed by the Scottish Parliament focused on helping marginalised, vulnerable and neglected sections of our society. I want to continue this spirit by launching my Scottish Autism Strategy Bill.

“Scotland is the only part of the UK without a national autism strategy, which means that people with autism across Scotland and their carers face a postcode lottery when it comes to services.

“Although there is some guidance for autism services, none of it is enshrined in law and many areas in the country aren’t providing a basic level of service.

“There are gaps in diagnostic services, crucial if previously undiagnosed Scots are to be identified and the right services provided. There are gaps across the country in many vital support services like child and adolescent mental health services, school support and support into employment.

“Services for families and carers, like respite breaks, also vary wildly.

“My Bill is a first step on the road to equality and better standard of care for all people with autism across Scotland, their families and carers.”

Source:   http://www.scotlibdems.org.uk/news/2010/01/odonnell-launches-autism-bill



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