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

Adults with Autism - We Can Do Better, Much Better

The UK National Autistic Society has published results of a survey, "I Exist", indicating that adults with autism in the UK are ignored and their needs are not being met. The survey results reveal a "stark and often desperate reality", with most adults with autism lacking necessary support and services and living ignored and in isolation.

Here in New Brunswick attempts are made to address the needs of adults with autism but they are, in many areas, grossly inadequate. Families whose adult members with autism live at home have inadequate support, staff in private group homes lack autism specific training, and we have no institutional level facilities to provide residential care for the most severely autistic who are not capable of living in a group home facility. In fact we export our autistic adults and youths to other provinces, even to the United States, in search of treatment.

In the UK and in New Brunswick we can do better for adults with autism, much better.

autism

The Real Autism Argument

Sally Eva, as quoted in the Independent, summarizes nicely one of the most intense points of discussion in world autism debates:

"People with autism range from those at the severe end who can't tell a person from a post to those at the mild end who may be madly over-communicative. The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum. The real argument is between people who believe in "neurodiversity" – that autism is on the normal spectrum and we should work for more public acceptance of it – and those who believe it is a medical condition that needs treating."

- Sally Eva, UK, Parent of a 15 Year Old Daughter with Autism

Autism Heroines Lara Hawkings and Sally Eva

In the United Kingdom parents fighting to help their autistic children overcome the deficits of their autism disorders, fighting to help their children as all parents do, face opposition from a National Autistic Society which has drunk deep from the kool aid of the neurodiversity "movement". In Autism: What are the ethics of treating disability the Independent reports on a letter Treating Autism signed by parents, including Lara Hawkings and Sally Eva, fighting for treatment for their autistic children in the face of opposition by the National Autistic Society.

In the UK the National Autistic Society has adopted the "autism is beautiful" ideology and frowns upon parents like Lara Hawkings and Sally Eva who fight to help their own children overcome and recover from the sometimes debilitating deficits of their neurological disorder. Awareness is helpful. But saying that society should change how it views autism will not help those autistic children who need help for the more serious symptoms of autism, a neurological disorder.

Neurodiversity ideologues are not human rights advocates. They are in fact suppressing the human rights of autistic children; their right to be treated for their neurological disorders. And they are suppressing the rights of parents to help their own children. The UK NAS should be ashamed of itself for imbibing this topsy turvy ideology and for helping suppress the human rights, including the right to be treated for their neurological disorders, of autistic children in the UK.

I wish the best for Lara Hawkings and Sally Eva and all parents in the UK trying to help, to truly help, their autistic children. And for the NAS I wish that some day they will cease swallowing the neurodiversity kool aid and drink from the well of common sense.

Adult Autism Reality in the UK

The joy of autism advocates on the inter-net should read this report from from the BBC on adult autism realities in the UK. It provides some sobering perspective that the neurodiversity movement and the rose colored glasses brigade should consider before they continue to try and persuade the world that autism is wonderful. Hopefully the research necessary to find ever more effective ways to help autistic children, youths and adults will continue. And hopefully governments from Canada to the UK to China and all points in between and around the globe will step up and provide the supports necessary for autistic people to live a decent, happy, life.



Effects of autism 'long-lasting'

The NAS says autistic teenagers need more support

Almost half of adults with autism in England live with their parents, a National Autistic Society report says.

And just 15% of them are in full-time employment, says the society's "Moving on Up?" report.

But the society says this could improve if the right planning and support were offered to young people with autism.

England's Children's Commissioner, Sir Al Aynsley-Green, said the government had made progress but work was still needed to help young autistic people.

It's very scary because I know that when he reaches a certain age he will no longer be entitled to the support he's entitled to as a child Deborah Packenham

The NAS is calling for better support and services for young people with autism during the critical "transition stages" between school, higher education and employment.

Change can be difficult for young people with autism to cope with, and the transition from childhood to adult life can be especially problematic.

Support needed

The government's Special Educational Needs Code of Practice says all children with a statement of special educational needs should have transition planning from the age of 14.

Yet the NAS found that only about half, 53%, of young people receive such plans during their education, and only one third of those in mainstream schools do so.

Rosemarie Mason has five children, three of whom have been diagnosed with childhood autism - twins Sean and Eoin who are now 19, and 17-year old Mehal.

Rosemarie Mason has three teenagers with autism

She said: "Like any parent I want them to do what they want to do, to support themselves and to make decisions for themselves.

"I'm realistic enough to know they're going to need support - they're going to need a network of support."

"But that isn't what's designed for adults with disabilities."

And Deborah Packenham, whose son Ieuan also has autism, said: "It's very scary because I know that when he reaches a certain age he will no longer be entitled to the support he's entitled to as a child.

"He'll be an adult, and support is very patchy."

Transition benefits

NAS head of policy Amanda Batten said many young people with autism were failing to fulfil their potential due to a lack of appropriate support at the vital transitional stage in their lives.

She said: "It is imperative that there is early and effective transition planning for every young person with autism.

"Many have a great deal to offer and should have access to appropriate support.

"If transition fails, young people can find themselves embedded more firmly than ever in the family home, increasing stress on the family and resulting in more isolated lives."

Sir Al Aynsley-Green, Children's Commissioner for England, said: "This research shows clearly why we must be extra vigilant to the needs of young people with autism so that they receive the right financial and emotional support to cope with adult life.

"Recent government initiatives for families with disabled children are welcome, but I continue to be told that poorly co-ordinated services and a lack of adequate resources to help them navigate their way through are adding to their difficulties - this must be addressed as a matter of utmost urgency."

A spokesman for the Department of Children, Schools and Families said it was spending £19m on a transition support programme to give disabled young people more "choice and control" as they move into adulthood.

"We are developing an autism pack for schools, which will include information on good transition planning," he added.

http://news.bbc.co.uk/1/hi/health/6897908.stm

Autism Interventions Ranked - EIBI (ABA) Best - Facilitated Communication Worst

A list of autism intervention rankings by Research Autism, a UK charity, is available online at:

http://www.researchautism.net/interventionlist.ikml

Research Autism in its own words:

Research Autism is the only UK charity exclusively dedicated to research into interventions in autism .

Established in 2003 as the Autism Intervention Research Trust, we commission, carry out and support high quality, independent research into new and existing health, education, social and other interventions. Our goal is the improvement of quality of life and outlook, for the individuals affected and those around them.

We have the active support of some of the world’s leading figures in autism and research. They have given freely of their time and expertise to work with us. We also work closely with our research sponsor, the Autism Research Centre at the University of Cambridge, as well as with the National Autistic Society.

http://www.researchautism.net/pages/About_Us/About_Us.ikml

Not surprisingly, Early Intensive Behavioural Intervention (ABA) received the highest ranking and Facilitated Communication received the worst ranking amongst the numerous interventions ranked. I say not surprisingly because those rankings are consistent with other professional and academic reviews of the efficacy of autism interventions.

EIBI received 3 green check marks indicating Very strong, positive evidence * 2 or more Grade A studies or * 1 Grade A study and 3 or more Grade B studies. The majority of these studies show significant positive effects

Early Intensive Behavioural Intervention(Back)

Ranking :
[Very strong positive evidence]
Type : Behavioural
Introduction

This is a highly structured and intense intervention in which a child is taught a range of skills by a team of therapists.

The therapists break down the skills into small tasks that are achievable and taught in a very structured manner.

Desired behaviour, such as use of language or socialisation is positively reinforced and accompanied by lots of praise. Negative behaviour, such as self harm or aggression is ignored or punished.
Opinion

* There is strong evidence to suggest that EIBI programmes are effective for many children with autism.

* However, individual response to treatment is variable and these programmes do not result in improvements in all areas of functioning.

* For some children, alternative interventions, such as specialist pre-school placements may produce comparable results and may offer greater opportunity for interactions with peers.

* If EIBI is undertaken, the possible impact on parents (in terms of time, finances, organisation involvement with other siblings) should be considered.


http://www.researchautism.net/interventionitem.ikml?id=13

Also not surprising, Facilitated Communication received the worst ranking of any of the interventions assessed - 3 X's - Very strong negative evidence. * More than 1 Grade A study showing no significant positive effects or * 3 or more Grade B studies showing no significant positive effects or * 1 Grade A study plus more than 2 Grade B studies showing no significant effects.

In addition to 3 X's; FC also received 3 question marks indicating Very strong evidence of harmful effects. Any Grade A or B studies indicating adverse/harmful effects.

Facilitated communication is designed to help people with limited communication develop their pointing skills.

Someone else physically supports the the individual so that he can point to pictures, symbols, letters and/or words.

By doing this, the individual can demonstrate what he wants to communicate.
Opinion

There is a significant body of evidence to show facilitated communication is ineffective when used with people with autistic spectrum disorders.

There is also evidence it can lead to significant harm.

For these reasons we do not believe that it is an appropriate intervention for people with autistic spectrum disorders.


http://www.researchautism.net/interventionitem.ikml?id=16