Lack of Adult Autism Facilities Separates Families In Scotland

Our autism heartache tells the story of the Browe family in Scotland that must travel 600 miles to visit their adult autistic son Darren in England because Scotland lacks specialist care facilities for autistic adults. The story describes the severity of the son's condition and the difficulties faced by traveling such distances to visit their son. Sometimes after traveling 600 miles they don't get to see him because he is having a bad day. The evening times report that such families are not unique in Scotland: "A UK autism charity says more than half the adults with autism in Scotland do not receive enough support to meet their needs and face having to move away like Darren."

The situation in Scotland is not unique to that country either. Here in New Brunswick, Canada, we are still exporting autistic adults to the United States because we do not have dedicated residential facilities for autistic adults and nothing suitable for severely autistic adults. We have placed an autistic youth on the grounds of a corrections facility simply because we have no facilities. An autistic adult has resided on the ward of a hospital in Saint John. Our province takes no action to address this need regardless which party is in power.

autism

Kaufman To Sell Son-Rise In Scotland

Scotland on Sunday reports that Raun Kaufman is off to Scotland to sell parents of autistic children on his Son-Rise program. The article quotes several voices urging caution with respect to Son-Rise and Mr. Kaufman's claim including Dr Richard Mills, director of independent charity Research Autism:

"Anecdotal reports of recovery are not evidence. There have been no independently conducted, peer-reviewed scientific trials of the Son-Rise method so we cannot recommend it to parents."


The MADSEC Autism Task Force Report (2000 Rev.) described Son-Rise as:


page 6:

• Without scientific evaluation of any kind: Greenspan’s DIR/”Floor Time,” Son-Rise.

page 54:

Discussion

There have been no peer-reviewed, published studies of The Son-Rise Program’s effectiveness or outcome statistics. Son Rise: The Miracle Continues chronicles the experiences of Barry and Samahria Lyte Kaufman as they created a program to meet the needs of their young son, diagnosed with autism and an IQ under 30. According the Kaufman (1997), their son currently has a near genius IQ, and no traces of his original condition.

Conclusions

There have been no studies of the Son-Rise Program’s effectiveness. Researchers should consider investigation using research protocols. Professionals considering Son-Rise should portray the method as without scientific evaluation of any kind, and should disclose this status to key decision makers influencing the child’s intervention.

autism

Autism Crisis In Scotland - Invisible Autistic Adults

In Scotland Lacks Autism Services I commented on an article on healthcarerepublic on July 6, 2007 and the lack of services for people with autism in Scotland. That article, Call to find autism early in Scotland, focused on guidelines published by the Scottish Intercollegiate Guidelines Network (SIGN) calling on doctors to look for signs of autism in children and adolescents, including problems with social interaction and play, speech and behaviours. The article also expressed the doubt of many professionals in Scotland that early diagnosis would make much difference because of the lack of autism services available in Scotland.

In Revealed: ‘invisible’ adults living with autism, the Sunday Herald today reports, on an impending report by the National Autistic Society, the lack of services for autistic adults in Scotland, their dependency on family members for support and the isolation in which many spend their lives:

"Issues in the report include limited access to diagnosis, with 56% of those surveyed saying they found it hard to get their condition recognised. One adult said: "The GP did nothing. She didn't see any point in diagnosis for an adult."

But even after diagnosis many say they do not get the support they need. One participant in the survey commented: "I have had little or no support ever - my mother has done everything."

...

Bill Welsh, president of the Edinburgh-based Autism Treatment Trust, said the plight of many adults with autism had been "swept under the carpet", yet one child in 100 in the UK was diagnosed with the condition and the cost to society for each autistic child was estimated at £4 million. He added: "A major social, health and financial problem is upon us and urgent action is required."

autism

Scotland Lacks Autism Services

"Scottish guidelines urging GPs to pick up autism sooner may have little impact because there are too few services to refer patients to, experts believe."


- healthcarerepublic, 06-Jul-07

Autism Awareness is great. The more people who understand that Autism is a serious neurological disorder, that the autistic child screaming while he and his mom wait in a store check out line is not just a "bad kid", that the student who bites his hands while sitting in a regular classroom is overwhelmed by the stimulation of the activity around him the better. With awareness though comes the need to take action to do something to improve the lives of autistic children and adults with autism disorders. In Scotland, according to the following healhcarerepublic article, and Scottish autism experts, awareness is of little help because autism services are generally unavailable.







Call to find autism early in Scotland

06-Jul-07

Scottish guidelines urging GPs to pick up autism sooner may have little impact because there are too few services to refer patients to, experts believe.

The guideline, published this month by the Scottish Intercollegiate Guidelines Network (SIGN), calls on GPs to look for signs of autism in children and adolescents, including problems with social interaction and play, speech and behaviours.

It says GPs should use the checklist for autism in toddlers (CHAT) to give strength to suspicions, but not to rule out autistic spectrum disorders (ASD).

The guideline gives advice on the value of intensive behavioural therapy, communication interventions and use of medications, such as risperidone.

But experts have cast doubt on whether it will improve access to diagnostic services and therapeutics for autism.

Essex GP Dr Jamie Nicholls, who has an autistic son, said the latest SIGN guidelines add to the 2003 National Autism Plan for Children, which he helped the National Autistic Society to compile. He said the SIGN guideline is laudable, but essentially a 'big wish list'.

'From a practical viewpoint, if there's no enforcement behind it, there's a difficulty in saying if it will be implemented,' he said.

GPs need to identify children showing traits of ASD and refer them to appropriate services for rapid referral, said Dr Nicholls.

'SIGN suggests that every area should have a referral point,' he added. 'In some areas they exist, but coverage is rather patchy.'

Dr Judy Gould, director of the diagnostic centre at the National Autistic Society, said there can be long waits for diagnosis after GP referral to specialist child development services.

'GPs are terribly important because they are the first person the parents go to. The sooner we pick up autism, the sooner we can offer appropriate management,' she said.

'In reality, we have tremendous waiting lists for children. There can be a one- or two-year wait to see a specialist team.'