BOOKS, LETTERS AND RESOURCES

OAARSN book review

National Post Letter of the Day, Saturday, October 31, 2009

Life with autism is like 'a bad movie scene-- with me as the anti-hero'

Re: “Mother 'Couldn't Accept' Plan For Son,” Oct. 27.

I am a man with Autistic Disorder. Also known as classic autism, this is probably the same affliction that beset the unfortunate teenager, Tony Khor, with his mother now accused in his death.

Several things came up in the article regarding peoples' understanding of autism. It was reported that the boy was "a low-functioning autistic unable to speak, often making noises in an attempt to communicate." I would fit this description also. I have low muscle tone and movement difficulties, so I cannot verbalize. I communicate on my voiced computer and it terrifies me to imagine where I might be today if I had not been assisted in learning this skill.

"The boy's autism was so bad it often spooked people who were not familiar with his condition." I have many obsessive-compulsive behaviours, including pica (a medical disorder characterized by an appetite for non-nutritive substances) that must be alarming to onlookers.

"The boy would grow agitated around visitors no matter how often they came to visit." People with classic autism have hypersensitivity to sensory stimuli and difficulty with relationships. When friends and family visit, I want to interact with them but my body won't co-operate. Moreover, I become frustrated and anxious in such situations. Often it seems like I'm looking in on a bad movie scene -- with me as the anti-hero.

Not only must the law continue to protect disabled and vulnerable persons from abuse and death, but they need to be better understood. We also want the right to manage our own lives. For myself, I have recently left a group home to pursue a self-directed life. I will soon have a service dog that will be a companion and who will help control my compulsive behaviours. Personal support, training and ongoing education will be provided to enhance my independence.

Tony Khor and his parents should have known that they had options such as these.

Kevin Vasey, Petrolia, Ontario. Kevin co-authored The Road Trip – Life with Autism by Gloria Pearson-Vasey and J. Kevin Vasey (published by Novalis, Saint Paul University, Ottawa, Canada. 2005). He is also a member of the communication support group, Bridges-Over-Barriers.

Adults with autism 'cast adrift'

"Adults with autism in England are often not being diagnosed or supported properly, MPs say. The Commons' Public Accounts Committee said the lack of understanding about the condition among GPs and social care staff was a key problem. But MPs also attacked the arrangements in place to oversee the transition from child to adult services which led to people being "cast adrift". The government said a new strategy for autism would be published next year. There are about 400,000 adults in the country with the condition, split evenly between those with a learning disability, sometimes known as low-functioning, and those without one, known as high functioning.

"While children are often supported through the school system, adults require a very different network of help. They will often need concerted and individual support across health, social care, housing, education and employment. But the cross-party group of MPs said this was not happening. They blamed the poor transitional services being run by local Connexions services, which provide integrated services for 16 to 24-year-olds. Such services were often unaware of the needs of their clients, the report said. There was also a basic lack of data on the number of adults needing help. Just a fifth of local authorities and their NHS partners were aware of the numbers with low-functioning autism, while only 12% had details of those with the high-functioning form.

"The MPs also identified a weakness in diagnostic services. It is estimated that GPs see two adult patients with undiagnosed autism in each six-month period, but previous research has shown eight in 10 GPs felt they needed extra training and guidance on the condition. Less than a third of areas commissioned specialist diagnostic services to pick up those cases not identified in childhood, the report added.

"Committee chairman Edward Leigh said: 'Adults with autism are being left to fend for themselves with all the consequences this has for their access to further education, benefits or employment and for their mental health.'"

Autistic jobseekers 'written off'

People with autism are condemned to financial hardship by poor employment and benefits support, according to the National Autistic Society (NAS) in calling for a national strategy to help people with autism into work. People with autism are said to experience "anxiety, confusion, delays and discrimination" when using services.

The Department for Work and Pensions said it was "determined to provide the best support possible" to them. Launching its "Don't Write Me Off" campaign, the NAS says a majority of the over 300,000 working age adults with autism in the UK want to work but only 15% are in full-time paid employment. The charity says a key problem is a lack of understanding of autism among Jobcentre Plus staff, who determine eligibility for benefits and provide employment support. It is calling for the government to introduce autism coordinators who would work with frontline staff, local employers and employment support services.

A related story in The Guardian notes that adults with autism can be highly numerate and analytical.

New Center for AAC & Autism to Promote Communication Skills in Children with Autism

The new Center for AAC & Autism, based online at AACandAutism.com, is dedicated to helping children with autism learn to communicate through the power of alternative and augmentative communication (AAC) devices.

"More than half of the thousands of children diagnosed with autism spectrum disorder (ASD) every year are unable to communicate verbally," explains the Center's Director, Cindy Halloran, OTR/L, who has worked extensively with children with autism during more than 20 years as an occupational therapist. "Our own experience and published research show that AAC offers many of these children a viable method of independently and spontaneously expressing themselves." Focusing attention on the promise of AAC for nonverbal communicators is a key mission of the Center. "A voice output AAC device gives a nonverbal child a way to communicate, which can improve social engagement, decrease frustration and aberrant behavior, and help others to see the child's true potential," Halloran adds.

ANNOUNCEMENTS OF EVENTS

OAARSN welcomes discussion of ideas and topics related to adults with autism. We support freedom of information and expression, and encourage everyone to try to see all sides of issues and to understand the viewpoints of others.
The OAARSN service is for information and awareness. We cannot endorse or be held responsible for the validity of any information or the value of any therapy or service. Nor do we necessarily agree with opinions that may be expressed.