First Published Monday, 2 March 2009

Andy Coghlan

Positive people may owe their optimism to a gene variant that helps them dwell on the good and ignore the bad.

That’s the conclusion from a study examining people’s subliminal preferences for happy, neutral, and threatening images.

More…

From the Archives

Both personality and happiness largely hereditary

Happiness in life is as much down to having the right genetic mix as it is to personal circumstances according to a recent study.

Psychologists at the University of Edinburgh, Scotland, working with researchers at Queensland Institute for Medical Research in Australia found that happiness is partly determined by personality traits and that both personality and happiness are largely hereditary.

Using a framework which psychologists use to rate personalities, called the Five-Factor Model, the researchers found that people who do not excessively worry, and who are sociable and conscientious tend to be happier. They suggested that this personality mix can act as a buffer when bad things happen, according to the study published in the March issue of Psychological Science.

The researchers used personality and happiness data on more than 900 twin pairs. They identified evidence for common genes which result in certain personality traits and predispose people to happiness.

The findings suggest that those lucky enough to have the right inherited personality mix have an ‘affective reserve’ of happiness which can be called upon in stressful times or in times of recovery.

The researchers say that although happiness has its roots in our genes, around 50 per cent of the differences between people in their life happiness is still down to external factors such as relationships, health and careers.

Dr Alexander Weiss, of the University of Edinburgh’s School of Philosophy, Psychology and Language Sciences, who led the research said: “Together with life and liberty, the pursuit of happiness is a core human desire. Although happiness is subject to a wide range of external influences we have found that there is a heritable component of happiness which can be entirely explained by genetic architecture of personality.“

Weiss A, Bates TC, Luciano M. Happiness Is a Personal(ity) Thing: The Genetics of Personality and Well-Being in a Representative Sample. Psychol Sci. 2008 Mar;19(3):205-210 [Abstract

First Published Monday, 2 March 2009

By Tracey Meloni / Photography by Jonathan Timmes

Alex Plank is a 17-year-old film student at George mason with Asperger’s syndrome. Frustrated with the lack of information available, he started a website for others like him to connect.

Lively 6-year-old Joey’s an expert in dinosaurs and loves to talk about them, but play dates are a challenge, as his passion prevents other children from sharing their interests. Patrick could read when he was 4 and loves books, but becomes agitated by non-literal idioms, like “raining cats and dogs.” Second-grader Alice cries when the sound of rustling papers and background chatter in the classroom derails her concentration.

Each of these children has been diagnosed with Asperger’s Syndrome (AS). AS belongs to a group of disorders known as pervasive developmental disorders (PDDs), or autistic spectrum disorders. Experts agree that, if you meet one child with Asperger’s, you have met … one child. Each is individual, unique.

Mapping Meaning
Patricia Velkoff of Vienna is a clinical psychologist specializing in lifespan development and family therapy. She describes the differences between Asperger’s and the layman’s view of autism:

“Children with both AS and autism have some degree of difficulty with social attunement and emotional self-regulation. The AS child’s challenges, however, are much less severe. They may isolate themselves when social contact becomes exhausting. They may repeat an idea that excites them even when others are bored. They may insist on their own way and not understand the needs of others. Each of the diagnoses applies to children who do not all look alike; a child’s individual profile must be understood before interventions are designed and implemented.”

According to Velkoff, each child’s diagnosis varies in strengths, challenges and “areas of average skill.” “An AS child, for example, may have highly developed, expressive language and memorization skills.”

Alex Plank took the matter of limited information on the condition into his own hands. At age 17, he launched WrongPlanet.net, which now has registered users from Austrailia to Germany. “At the time, there were no resources that met my needs with a positive message of where people like me fit in the world. I wanted there to be a positive environment to help [those with AS] better understand themselves.”

Diagnosed at age 9, Plank is now a film major at George Mason University, and is producing a project interviewing autistic individuals about their experiences.

His advice to those newly diagnosed with AS? “Get online, and read other people’s stories. It’s also a good place to make friends.”

School Space Challenge
Lucia Claster, who coordinates the Asperger Syndrome Information and Support group in Arlington, points out that students with high-functioning autism, Asperger’s syndrome and other related issues often fall through the cracks in school. Each demonstrates the isolating difficulties of being in one’s own world.

“These kids can ‘pass’ as normal in many ways, but not in theirs. Most are of normal intelligence, and some are of superior intelligence in certain subjects, so it seems to outsiders that they should be able to ‘access the curriculum.’ Yet because of their processing difficulties and social communication skill deficits, they aren’t able to take in information or express what they know in the same way that typical learners do.”

Easily overwhelmed by sensory stimuli that wouldn’t bother the average student, “they cannot focus on their learning.” Classroom behavior deteriorates because they are stressed and anxious, “and teachers see the change as a ‘behavior problem.”

Claster adds that, instead of giving AS students more support, “teachers sometimes feel the students are willfully acting out and will isolate them, give them a time out, send them to the principal’s office, take away their recess time, which makes these kids even more overwhelmed.”

She says AS students need a structured program geared to individual abilities as they progress through “the broadening of academic expectations, and the shift from [fact-based] task-learning in the early grades to more complex education [abstract concepts].”

Philadelphia-based certified relationship development intervention specialist Lisa Kowalski attempts to address the other-world difficulties with social interactions faced by her high-functioning Asperger’s children. “They don’t process much of the non-verbal information that is communicated within social interactions. Frequently they can tell you exactly how they are supposed to respond, but in the moment it’s so hard for them to actually do it.”

Professionals and families agree that people without AS rely on body language to regulate social communication and interpret unspoken implications. Those with AS have problems reading body language and thus become more isolated and misunderstood. “Many of the weaknesses can be remediated with specific types of therapy aimed at teaching social and pragmatic skills,” Kowalski says.

Autistic Self Advocacy network coordinator Durbin-Westby read at a third-grade level at age 4.

The Adult Sphere
Those who grew up before AS could be properly diagnosed tell heroic tales of lonely discovery. Like Plank, many felt they were living on the “wrong planet,” and many have turned adversity into success.

Paula C. Durbin-Westby is Virginia coordinator for the Autistic Self Advocacy Network (ASAN) and board member in charge of the East Coast region. She learned about Asperger’s syndrome some two years ago while at work indexing a scholarly monograph. “I saw the acronym PDD-NOS in a book I was indexing. I looked it up, saw a link to high-functioning autism … I clicked and read my life story.”

Durbin-Westby printed out the description, deleted the word “autism,” and showed it to her husband. “He read it and exclaimed, ‘Wow! What is it?’ in a voice that told me he was discovering the same thing I was.”

By the next day she had read enough about the criteria for AS and associated conditions to know that “I was on the autism spectrum.” And she discovered that “literature by experts … pathologizes qualities that are seen to be different, regardless of whether or not those qualities could also be positive.” Durbin-Westby, born in 1959, knows that a diagnosis today can cause feelings of devastation in parents. Her own parents had “no feelings of devastation at all.”

She joined her first online group for autistic adults and asked, “Would you tell people other than your family and maybe a close friend that you are on the autism spectrum?”

Ari Ne’eman, the founder and president of ASAN, provided her first reply. Then, ASAN was in its early stages of formation, so Durbin-Westby’s journey has always been intertwined with that of the organization.

Ne’eman’s reply: “It depends what your particular situation is. It’s not something to be ashamed of, though, and recognizing who you are may help you. Do what you feel comfortable with, but you shouldn’t be afraid to be openly autistic. I think it’s my right to be open in my neurology and to let my abilities speak for themselves.”

Ne’eman’s assertion reminded Durbin-Westby of the way she had lived her life: “I have never wanted to hide who I am … Every week I read posts by people on the autism spectrum who are trying to fake it, living in fear of making a social mistake that will cause them to lose their livelihood.” She hears from people who are “exhausted both from trying to do the things they need to do to survive and pretend they are something they are not.”

Durbin-Westby’s work with ASAN began seven months after her initial discovery. The organization has a broad agenda, including policymaking, education and outreach, a speaker’s bureau, social and support groups for people on the autism spectrum, as well as non-autistic parents, friends and other family members and allies. Through ASAN, Durbin-Westby made the happy discovery that, “I am good at networking.”

Consequently, she is interested in the proceedings of the National Institute of Mental Health’s Interagency Autism Coordinating Committee. “Advocacy is such a large part of my life.” She also is an organist and choir director, wife and mother.

Durbin-Westby demonstrates the intense interests displayed by those on the autism spectrum. “I was reading at an advanced third-grade level when I was 4.” The ability to read at an early age is common in children on the autism spectrum. Durbin-Westby also began studying piano at age 4.

Charles Bowen, 41, lives in Fairfax with his wife and two daughters. The son of an ordained Baptist minister in Danville, he remembers what he calls his first obsession.

“I have always obsessed on things. A week before my fourth birthday, lightning struck [our] church, and the sanctuary burned to a shell. Well into second grade I would obsessively talk about the church fire.”

Bowen says he was a loner in school, although he did have a few close friends. Puppetry, another of his obsessions, had a positive link: “I met my wife while doing puppet shows at her church in 1989.”

Another special interest triumphed when Bowen’s brother married a woman from Brazil. “I began to study Portuguese,” and found out that he was “an aspiring polyglot,” with a knack for languages. Bowen overcame social-skill challenges by reaching out to those of different languages and cultures. Since 2002, he also has taught English as a second language on a volunteer basis.

Charles attributes a work-related plus to his AS: “Office politics go right over my head.”

Martin , 50, who does not wish to disclose his last name, came from a family that emphasized the importance of learning. “My social skills were immature, and emotionally I was detached, more of an observer than a participant,” he says. “I wasn’t used to running with a group. I did well academically until college, when my poor study skills, emotional problems and lack of social graces led to near-failure.” He explains that he engaged in risky behaviors, defying authority.
“I was fired from jobs repeatedly. The worst part of it all was the loneliness.”

Today Martin is a computer programmer for a government agency. “AS hasn’t been as much of a problem here as it was in my prior jobs. Much of computer work is solitary. I have a general feeling of acceptance among my peers. I’ve benefited greatly from the stability and independence of this job.”

Psychologist Patricia Velkoff warns of the stress associated with Asperger’s evaluation.

Looking Up
As Velkoff points out, “After diagnosis, some parents know what services are needed; for example, help with pragmatic speech.” When parents are not clear about what help to pursue, she recommends asking the evaluator if services are needed with several aspects of care (see list at right).

Perhaps most importantly, Velkoff stresses that “children with AS benefit from an aggressive program of interventions in all necessary areas at the youngest possible age. This improves outcomes and reduces the gap with their same-aged peers.”

When multiple caregivers are involved regularly with a child (e.g.; parents, extended family and other care providers), Velkoff believes it is “most helpful if each caregiver is included in the treatment process. This helps all become skilled in working with the AS child.”

Before diagnosis, however, comes the evaluation, a step involving preparation for both child and parent.

“If your AS child may be stressed by the evaluation, you may wish to visit the building with them, and even arrange to greet the examiner briefly, a day or two before the evaluation,” Velkoff advises. “Parents want to find out details such as: whether a parent will be with the child throughout the evaluation, whether snacks are allowed, what kinds of tasks will be presented.”

With the help of the ever-expanding number of online resources, information and support, today those with Asperger’s are in touch with themselves and know they are, indeed, on the “right planet.”

Velkoff cautions that “Asperger’s is a new specialty for professionals, with AS included in IDEIA [Individuals with Disabilities Education Improvement Act] only since 1990. Training, experiences and services across professionals vary widely. Think of these as long-term relationships.

“Do your homework about each person in advance so that your time, effort and money are well invested. Keep communication open about what you need and what they can provide.”

The needs of children with Asperger’s change over time as well, so services and providers may need to be flexible as progress is made and new stages are reached.

What to ask your  evaluator:
AS can affect mny different aspects of life. Be sure to go over the following:

Health: allergies, medications, diet, sleep, sensory reactivity, motor coordination

Education: accommodations for alertness and focused attention, slow work speed, language processing, visual-spatial tracking, pattern recognition, grapho-motor skills, endurance, adaptability, rule mastery

Extracurricular activities: exercise for motor skills, coordination, circulation, emotional stability, social contacts and relationship opportunities

Family life: equally balancing the conflicting needs of all family members, managing the financial and logistical burden of pursuing specialized services and day-in-and-day-out care

Online Resource
Perhaps the most comprehensive online resource for parents, especially, is OASIS—Online Asperger Syndrome Information and Support located at www.aspergersyndrome.org.

(February 2009)

Source:   http://www.northernvirginiamag.com/health-and-beauty/health-beauty-features/2009/02/19/aspergers-sydrome/

Comment:

Overall, a great article.  But, just one thing … To read this article in full, you will note that the author claims that those born with AS are without the capacity to empathize.   Important to note that this statement is incorrect and as such encourages a negative stereotype.  Those considered AS have empathic feelings, and for some these present more strongly than found in your average non-AS person.  For many, their actions will speak far louder than words.  There are a good many on the spectrum working in the ‘caring’ fields and providing for and meeting the needs of those in their care admirably and with warmth.  Empathic feelings may be expressed in a myriad of ways and as such may be misinterpreted by others.

First Published Tuesday, 3 March 2009

A statistical modeling study suggests that problems with alcohol abuse may lead to an increased risk of depression, as opposed to the reverse model in which individuals with depression self-medicate with alcohol, according to a report in the March issue of Archives of General Psychiatry.

A number of epidemiological studies have shown that alcohol abuse or dependence is associated with major depression, according to background information in the article. However, it has previously been unclear whether one disorder causes the other, or whether a common underlying genetic or environmental risk factor increases risk for both.

Using data gathered from a 25-year study of health and development in New Zealand, David M. Fergusson, PhD, and colleagues at the Christchurch School of Medicine and Health Sciences, University of Otago, Christchurch, New Zealand, examined the associations between alcohol abuse and depression. A sample of 1,055 participants born in 1977 were assessed for both conditions at ages 17 to 18, 20 to 21 and 24 to 25 years and also asked questions about lifestyle and demographic factors.

At ages 17 to 18, 19.4 percent of the participants met criteria for alcohol problems and 18.2 percent for major depression; at ages 20 to 21, 22.4 percent had alcohol disorders and 18.2 percent major depression; and at age 24 to 25, 13.6 percent met alcohol disorder criteria and 13.8 percent had major depression. At all ages, alcohol abuse or dependence was associated with an increased risk of major depression-those who fulfilled criteria for alcohol abuse or dependence were 1.9 times more likely to also fulfill criteria for major depression.

Three models were tested to fit the data-one in which major depression and alcohol abuse disorders had a reciprocal association within time, a second in which alcohol disorders caused major depression and a third in which major depression caused alcohol disorders. “This analysis suggested that the best-fitting model was one in which there was a unidirectional association from alcohol abuse or dependence to major depression but no reverse effect from major depression to alcohol abuse or dependence,” the authors write.

“The underlying mechanisms that give rise to such an association are unclear; however, it has been proposed that this link may arise from genetic processes in which the use of alcohol acts to trigger genetic markers that increase the risk of major depression,” they continue. “In addition, further research suggests that alcohol’s depressant characteristics may lead to periods of depressed affect among those with alcohol abuse or dependence.”

The causal links also may include an increased risk of depression due to stressful life circumstances brought by alcohol problems, including social, financial and legal issues. “However, further research is required to elucidate the nature of the possible links between alcohol use and major depression,” the authors conclude.

The study was supported by grants from the Health Research Council of New Zealand, the National Child Health Research Foundation, the Canterbury Medical Research Foundation and the New Zealand Lottery Grants Board.

Fergusson DM, Boden JM, Horwood LJ. Tests of Causal Links Between Alcohol Abuse or Dependence and Major Depression. Arch Gen Psychiatry. 2009 Mar; 66(3):260-266   [Abstract]

First Published Tuesday, 3 March 2009

By Andy Walker

AN autistic man from the region impressed expert judge and international photographer Rankin to win the photography category in a national creativity competition.

Andrew Hewitt, from Northallerton, North Yorkshire, had his work showcased after winning the competition, launched by the National Autistic Society (NAS).

It was displayed along with the efforts of other winners in an exhibition, at the Gallerina, in London’s Pall Mall, last week.

The unique collection of works, also judged by adults with autism alongside experts in each category including political cartoonist Gerald Scarfe and poets Wendy Cope and Lachlan MacKinnon, offered insights into what it is like to live with the much misunderstood condition.

Mr Hewitt’s winning photograph is of a lady he met on the way back from Northallerton fair who had a giant stuffed tiger in her pull along shopping trolley.

The 35-year-old said: “I am really happy that I have won, as my photograph reflects my sense of humour.

“It is called Strange Encounters and reflects the strangeness of life in general – not just because I might see things in a different way to other people.”

The exhibition forms part of the NAS I Exist campaign, which found that many adults with autism are prevented from reaching their full potential due to a lack of support.

The works are a real testament to the contribution adults with autism have to give. Many are powerfully expressed and consider how a condition which affects the way people communicate with and relate to the world can provide an interesting and unusual perspective.

Mark Lever, NAS chief executive, said: “Congratulations to Andrew.

“There are more than 500,000 people with autism in the UK – that is one in 100 – and many adults with autism tell us how important art and creativity are in their lives.

“We have been overwhelmed by the quality of Andrew’s work and hope it will bring home to Government, local authorities and the general public just some of the realities faced by people with autism across the UK today.”

An online gallery of the pieces carried in the exhibition is at think-differently.org.uk

Source:   http://www.darlingtonandstocktontimes.co.uk/news/4163593.Northallerton_man_wins_photography_contest/

First Published Tuesday, 3 March 2009

The Government wants to improve the employment rate of people with autism. This target is in Public Service Agreement 16. Public Service Agreements are targets the Government sets when it decides how much money it will spend. Public Service Agreement 16 was set in 2007 when the Government decided how much money to spend from 2008 to 2011.

The Government is now writing a plan to help more people with autism get jobs. The plan will also help people with a learning disability get jobs.

If you want to tell the Government what you think would help people with autism to get jobs, answer the five questions below and email your answers to LDEmploymentStrategy@dh.gsi.gov.uk by 11 March 2009.

The National Autistic Society would also like to read your answers to the questions. If you are happy for us to read your answers please also email them to policy@nas.org.uk

Here are the questions that the Government would like you to answer.

1. Can you tell us about any projects or other things that have helped you get a job?
2. Not many people with autism have a job. Why do you think this is?
3. How can we help more people with autism believe that getting a job is a good idea?
4. What changes need to be made that would help more people with autism get jobs?
5. Is there anything else you would like to tell us about getting more people with autism jobs?

When you have answered the five questions, write your name and your contact details in case the Government wants to ask you some more questions about what you have said.

The Government will need to know:

• *your name
• *your organisation (if applicable)
• *your email address or phone number.

By answering the five questions, you are saying that the Government can use your comments for their work. If you tell the Government about things that have happened to people you know, you should not use their real names. If you tell the Government about things that have happened to you, the Government will only use your name if you say they can.

Related resources

Relevant areas/articles elsewhere on this website Welcome to Prospects

Source:   http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1522&a=18860

First Published Tuesday, 3 March 2009

ALL parents believe their child is remarkable but there are few words to describe little Rosie Homersham.

At eight years old Rosie, from Coleshill, has launched her first art exhibition in aid of the National Autistic Society.

Rosie was diagnosed with Asperger’s Syndrome as a toddler and uses her artwork to communicate her thoughts and feelings.

“Most people see her as eccentric but she loves to draw and is finding something new to obsess about all the time,” said mum Patricia, 34.

“Asperger’s isn’t a condition that many people know about so we hope through Rosie’s exhibition that people see a bit of her character and learn a little more about the condition.”

Asperger’s syndrome is named after Austrian paediatrician Hans Asperger who, in 1944, described children in his practice who lacked non verbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy.

But despite Rosie’s social difficulties there are subjects she thrives in at Southerop School near Coleshill.

“She does so well as school and although her social interaction isn’t the same as other children she has lots of little friends and gets on well with her teachers,” said Patricia.

Rosie and her work

The youngster’s favourite artistic muse is Elvis and the family’s home is littered with hundreds of portraits of The King.

“He’s my favourite because he’s really good looking,” said Rosie.

“But I think I’ll stop drawing when I am 19 because I’ll have loads of other things to do.”

As well as Elvis, Rosie’s picture passion has jumped to high-heeled shoes, goldfish and vegetables.

“When she finds a subject she likes she’s totally fixated on it,” said dad Henry, 34.

“She took 146 photos of vegetables in a catalogue and put them with her drawings. That’s her current obsession but before that it was heels and to start off with baths.

“She used to draw bathroom plans with all the pipework and everything. It was astonishing.”

But for all of Rosie’s adorable traits there are some who have found her condition hard to swallow.

“Some people are cruel and hurtful in the past,” said Patricia. “Because Rosie’s condition doesn’t manifest itself physically they find her behaviour difficult to understand sometimes.

“Here in the village though, she’s just an eccentric and people haven’t batted an eyelid and that’s all we’ve wanted for her.”

To donate to the National Autistic Society, visit Rosie’s exhibition at Coleshill Village Shop and Tearooms or log on to www.nas.org.uk. The exhibition is running from 10am until further notice.

Source:   http://www.swindonadvertiser.co.uk/news/4164020.Rosie_helps_autistic_charity/

First Published Wednesday, 4 March 2009

Hello,

Recently, the National Institute of Mental Health released several Request
for Applications (RFAs) on services-research topics relevant to autistic
people and our families as part of a broader effort to identify NIMH’s
priority areas
<http://www.nimh.nih.gov/recovery/recovery-act-nih-challenge-grants-nimh-areas.shtml>for
use of stimulus funds. The RFAs utilize funds specifically allocated under
the recently passed American Recovery and Reinvestment Act (aka: the
Stimulus bill). As you may be aware, the Autistic Self Advocacy Network and
the broader autistic and disability communities have been lobbying for
increased representation of services-research and bioethics issues in the
NIH research agenda for some time. We’re pleased to share with you these
RFAs, which hopefully will yield research that will have a positive impact
for our community.

04-MH-104      Access to services by individuals with autism and their
families. Engage well-characterized subjects and families in existing autism
research activities in preliminary studies exploring variations in access to
and use of services, identification of targets for services interventions,
and exploration of how variations in service use affect family functioning
in diverse populations. Contact: Denise M. Juliano-Bult, M.S.W.
301-443-3364, djuliano@mail.nih.gov

02-OD(OSP)-104*              Ethical Issues in the Translation of Genetic
Knowledge to Clinical Practice. Genetics and genomics have great promise for
the development of personalized medicine, yet the ethical, legal and social
implications of both the research and application of genetic and genomic
knowledge and technology are far reaching. Studies are needed to better
understand the factors that influence the translation of genetic information
to improved human health and the associated ethical issues. Examples of
studies include those to address ethical issues related to broad sharing and
use of new genetic information and technologies for research to improve
human health, human subjects protection in genetic and genomic research, the
identifiability of genetic/genomic information and how our understanding of
identifiability is evolving, return of research results and incidental
findings to subjects, alternative models of informed consent for broad data
sharing for research, and the impact of intellectual property (IP) issues on
development of new technologies. OD(OSP) Contact: Abigail Rives,
301-594-1976, rivesa@od.nih.gov; NIMH Contact: Jean Noronha, Ph.D.,
301-443-3367, jnoronha@mail.nih.gov

05-MH-101*      Leveraging Existing Healthcare Networks for Comparative
Effectiveness Research on Mental Disorders and Autism. Existing large
integrated healthcare networks are needed to more efficiently conduct
large-scale effectiveness trials in “real-world” patient settings. The NIMH
solicits individual or collaborative, linked grant applications from
researchers with experience conducting studies within large integrated
healthcare delivery systems to develop and test infrastructure to
efficiently conduct trials on the effectiveness of treatment, preventive and
services interventions to improve care for people with mental disorders and
autism. Applicants can propose studies to 1) demonstrate the ability to
identify, recruit and enroll large patient populations into clinical trials,
2) harmonize electronic medical record data across multiple integrated
systems for research use, 3) pool data for common analyses, and 4) build
capacity for the collection and storage of biologic material. Contact: David
Chambers, D.Phil., 301-443-3747, dchamber@mail.nih.gov

05-MH-103*      Collaboration with AHRQ Comparative Effectiveness Research
Program
In FY09 and FY10 the Agency for Health Research and Quality (AHRQ) plans to
support research grants (PA-09-070) on comparative effectiveness of clinical
treatments and services as authorized in the Medicare Prescription Drug,
Improvement, and Modernization Act (MMA) Section 1013. MMA section 1013
mandates two mental health categories: Depression and other mental health
disorders; and Developmental delays, attention deficit hyperactivity
disorder and autism. NIMH is interested in funding ancillary studies
including but not limited to: 1) studies on the comparative effectiveness of
important new or existing technologies; and 2) assessment of the comparative
effectiveness of treatments that are commonly administered to children but
have been evaluated for safety and effectiveness in adult populations. Two
year studies will contribute to successfully implement the mental disorders
components of MMA Section 1013 by utilizing AHRQ networks ( e.g. EPCs,
DEcIDE, CERTs, PBRN, ACTION, etc) to generate information for health care
decision-making. Contact: Agnes Rupp, Ph.D., 301-443-3364,
arupp@mail.nih.gov

04-MH-105      Developing interventions and service delivery models for the
transition to adulthood. Conduct pilot studies to develop and test
developmentally appropriate, evidence-based prevention interventions and
service delivery models for youth with who are at high risk for, or
experiencing severe mental illnesses who are transitioning to adulthood.
Studies would propose strategies to address discontinuities in service
systems and health care financing. Contact: Joel Sherrill, 301-443-2477,
jsherril@mail.nih.gov

Furthermore, NIMH also released the funding of the Inter-Agency Autism
Coordinating Committee (IACC) Strategic Plan as an RFA. ASAN has been active
in lobbying for the inclusion of quality of life oriented research in the
IACC’s priorities since this IACC’s inception in 2007. While having both
positive and negative components, the IACC Strategic Plan includes services-
and quality of life-research components, including research on meeting the
needs of autistic adults. It can be found below.

04-MH-101*      Autism: Addressing the challenge. Target research gap areas
identified by the Inter-Agency Autism Coordinating Committee (IACC)
Strategic Plan for Autism Spectrum Disorder Research, including biomarkers,
novel interventions, and new tools for screening, among other topics.
Contact:  Ann E. Wagner, Ph.D., 301-443-5944, awagner@mail.nih.gov

We encourage you to transmit this information to your contacts in the
research and scientific communities, encouraging them to apply for funding
for projects that will positively impact the lives of autistic people while
working with the self-advocate community to ensure inclusive and
participatory models of research, as we practice through our partnership
with the Academic Autistic Spectrum Partnership in Research and Education
(AASPIRE) <http://www.aaspireproject.org>. Please feel free to e-mail us at
info@autisticadvocacy.org with questions on ASAN’s research advocacy and how
you can get involved. If you are a researcher, interested in interfacing
with ASAN and our research partner AASPIRE on research priorities, design
and implementation, we encourage you to contact ASAN Board Member and
AASPIRE Project Co-Director Dora Raymaker at dora@aaspireproject.org.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530

First Published Wednesday, 4 March 2009

AUTSCAPE  2009: EFFECTIVE  LIVING
Tuesday 18 August – Fri 21 August 2009
London, UK
http://www.autscape .org/

C A L L  F O R  P R O P O S A L S

Deadline: Friday, 01 May 2009.
Submission form: http://www.autscape .org/proposals/ proposalform

Please distribute freely.

Contents

What is Autscape?

Autscape is a conference with a difference. Rather than talking to a
primarily non-autistic audience about autism, this conference is
specifically by and for autistic people. Some of it isn’t even about
autism at all! Non-autistic people are also welcome, but the environment
and content of the event are centred around autistic people’s needs,
interests and sensitivities.

What we are looking for

We are now accepting proposals for seminars and workshops to be
presented at Autscape 2009. Proposals for poster presentations, leisure
group leaders, videos, leaders for structured or semi-structured evening
discussions, and other ideas will be sought in the near future.

Theme

The theme for this year’s Autscape is Effective Living.

Brief theme description: As Autistic people we have a variety of issues
that affect our quality of life, whether difficulties with socialising
or public transport, organisation and procrastination, or sensory
issues. At Autscape 2009 we plan to explore ways of dealing with these
issues to enable us to gain more order and enjoyment in life.

Presentations which conform to the theme will be given priority. For the
full theme description, please visit:
http://www.autscape .org/proposals/ theme

We wish to explore these key concepts of autistic being in many
different fashions. This can be through formal presentations or
workshops, and may be theoretical or practical. Many different types of
input are welcome: traditional lectures, creative expression, physical
activity, interactive workshops and more.

Audience

Although we welcome non-autistic professionals and family members, the
aim of this event is primarily for autistic people, not about us!
Workshops geared towards parents and professionals may be accepted, but
must be positive in their support for autistic people and their right to
be different.

Examples

For some examples of what has been presented at Autscape in the past,
see last year’s presentations at:
http://www.autscape .org/archive/ 2008/presentatio ns

We are also likely to enjoy similar workshops to those that have been
presented at Autreat, in the USA. See: http://www.ani. ac/

Non-verbal workshops

Although many of the autistic people who are attracted to an event such
as Autscape are highly verbal, others may have difficulty with an event
so centered around language. However, we want to welcome and fully
include all kinds of autistic people, including less ‘wordy’ ones. We
are also seeking workshops which are not primarily focused on the spoken
word. (Presenters may still use speech; it is just not the main content
of this type of workshop.) Examples: dance, relaxation, music, art,
construction of some kind. These workshops are different from casual
leisure sessions in that they have more structure, preparation (from the
presenter), relevance to autism and the event’s theme, and duration.

A few notes of caution

* Cures:
Workshops about curing or preventing autism are likely not to go over
well at all and are best avoided altogether, unless it is from an
advocacy standpoint.

* Problems:
The problems of non-autistics coping with autistic people could
inadvertently reinforce negative attitudes.

* Personal Experience:
We all have personal experience of autism. If your presentation is
primarily based on your personal experience, think carefully about its
relevance here; the story needs to be one which can help attendees to
find new understanding of their own situation. Please let us know what
you’re hoping those present will gain from your presentation.

* Suitability:
Every workshop, no matter who it is targeted towards, should be suitable
for autistic people to attend without feeling objectified or put down.

What do we expect from you?

* Attendance:
If you submit a proposal, we do expect you to be there! Please be
prepared to attend Autscape and give your presentation on the day and
time scheduled. If you choose not to attend Autscape for the whole 3
days we will do our best to fit the schedule around your needs.
Travel is the responsibility of each individual presenter. We cannot
subsidise travel or off-site expenses for anyone. If your proposal is
accepted, we will send you a formal letter of invitation if this will
help you to secure your own funding.

* Discussion groups:
Presenters may be expected to run an evening or afternoon discussion
group on their topic, for those who would like to explore the issue
further. If you may have problems with this, we will try to find a
volunteer to help you.

* An article:
We would like an article about your presentation for inclusion in a
proceedings booklet to be prepared and printed at a later date. This
booklet will be sold to raise funds for Autscape.

* Presentation materials:
Please send copies of any handouts and computer presentations (e.g.
powerpoint) ahead of time. These will be made available for download by
Autscape participants and printing for those who require it.

* Archive:
We would like to include your presentation summary, biography and any
electronic handouts you provided in our website’s archive area.

* Recording:
Please allow us to video or otherwise record your presentation. These
records may be made available to others by Autscape. If you submit a
proposal we will assume you are happy with these expectations. If you
have any questions or objections, please let us know so we can discuss
it.

What can you expect from us?

* Attendance:
Presenters will be accommodated on-site for the day of their
presentation including the night before or after. Only one place can be
subsidised for each presentation, regardless of the number of
presenters. Unfortunately, due to the funding situation we cannot offer
free attendance at all of Autscape this year.

* Participation:
Whenever you are not presenting you can enjoy the event, including other
workshops and the setting, just as any other participant.

* Involvement:
One thing you can expect by joining us is the opportunity to shape an
emerging self-advocacy event and autistic community. There will be
opportunities at the event to get involved in the future of Autscape.

* Audience:
A rare opportunity to be heard by a significant number of autistic
people. A chance to have some influence and get some feedback from the
people who matter most in the field of autism.

How to submit your proposal

To submit your proposal, please use one of the following:

* online form: http://www.autscape .org/proposals/ proposalform
* e-mail: info@autscape. org <mailto:info@autscape. org>
* or post to: Autscape, 4 Falcon Street, London, E13 8DE, UK

All proposals must be received by 1 May 2009.

Please include the following information.

1. ABOUT YOU
a. Name
b. Country
c. At least one of:
*e-mail address (preferred)
*phone number
*postal address
d. Experience (A summary of your relevant experience, including
any presentations or other education/advocacy activities
elsewhere, and the nature of your interest in autism and/or in
general disability issues.)

2. INFORMATION FOR THE PROGRAMME
a. Your name or alias (for public use)
b. Biography (50-150 words)
c. Presentation title (1-12 words)
d. Summary (100-200 words)

3. ABOUT YOUR PRESENTATION
a. Type of session (choose one)
*Lecture (audience mostly listens)
*Workshop (audience participates verbally)
*Hands-On (audience participate physically)
*Other (please describe)
b. How does your presentation relate to this year’s theme
‘Effective Living’?
c. Please describe your presentation or activity for the
decision makers.

4. Other comments not addressed above

First Published Wednesday, 4 March 2009

In January 2009, the Autistic Self Advocacy Network submitted the following
testimony to the NJ Department of Human Services, which had published draft
regulations in reference to the creation of an autism registry, at that
juncture mandated by legislation. Given that the registry’s creation had
already been established, our comments were oriented at ensuring that it
would be implemented in such a fashion as to respect the privacy rights of
autistic people and avoid unauthorized disclosure of information and
unethical research practices.

COMMENTS ON PROPOSED N.J. AUTISM REGISTRY REGULATIONS

CHANGES ARE NEEDED TO ADDRESS PRIVACY CONCERNS AND THE POTENTIAL FOR STIGMA AND MISLEADING DATA

The Division of Family Health Services has proposed new rules and amendments
at N.J.A.C. 8:20 to establish a birth defects registry, which would include
an autism registry and a severe neonatal jaundice registry. The Autistic
Self Advocacy Network has several concerns about the autism registry
proposal: (1) The use of the term “birth defects” is inaccurate and
stigmatizing as applied to autism; (2) Alternatives to the use of personally
identifying information should be implemented; (3) An opt-in, instead of opt
out, procedure for personally identifying information should be used; (4) A
civil cause of action for the revealing of personally identifying
information should be created; (5) Data obtained from the registry is likely
not to be comprehensive given the number of autistic individuals who are
undiagnosed; and (6) Written consent along informed consent guidelines
should be required for the use of registry information in research.

â–ª “Birth defects” ordinarily refers to conditions such as severe neonatal
jaundice that result from factors associated with pregnancy. Registries
track the occurrence of such conditions for the purpose of improving
prenatal and neonatal care. Autism, however, has not been shown to be
caused by events that occur during pregnancy. Rather, autism is a
developmental disability that reflects genetic differences. As such, the
term “birth defects” is inappropriate and has a significant potential to
stigmatize the autistic population by characterizing citizens on the autism
spectrum as defective.  The Autistic Self Advocacy Network recommends that
the term “birth defects” not be used in connection with an autism registry
or any autism-related initiatives.

â–ª Alternatives* to the use of personally identifying information should be
carefully considered and should be implemented to the fullest extent
possible. As stated in the Recommendations on Confidentiality and Research
Data Protections adopted by the National Human Research Protections Advisory
Committee (http://www.hhs. gov/ohrp/ nhrpac/documents /nhrpac14. pdf<http://www.hhs. gov/ohrp/ nhrpac/documents /nhrpac14. pdf>),
“Protocols should be designed to minimize the need to collect identifiable
data by determining whether there is a legitimate reason to collect or
maintain identifiers. Data can often be collected anonymously, or the
identifiers can be removed and destroyed after various data have been
merged.” Moreover, where unique identifiers are needed for research
purposes, they can consist of unique codes, instead of personally
identifying information.  The Autistic Self Advocacy Network recommends
that if an autism registry is created, alternatives to the use of personally
identifying information should be developed and offered.

â–ª Opt-in *is necessary to ensure the public’s understanding of the privacy
rights of citizens on the autism spectrum and their families. Individuals
on the spectrum and their families should be required to opt-in to offering
identifying information rather than be required to opt-out if they decide
they do not want to. The opt-out procedure currently proposed would not
necessarily result in informed decision-making by parents who might be
unaware that they had the right to opt out. Parents who have just received
an autism diagnosis for a child often feel overwhelmed by all of the
information that they receive concerning services and therapies, and a
notice about an opt-out process might be overlooked. The Autistic Self
Advocacy Network recommends that if an autism registry is created, an opt-in
procedure should be used for all personally identifying information. We
furthermore recommend that this is particularly vital if said registry is
extended to the autistic adult population.

â–ª A civil cause of action for unlawful disclosure of personally
identifying information would help to ensure that privacy rights would be
taken seriously by all involved. The existence of an autism registry, in
and of itself, creates a significant potential for stigma and discrimination
because most disabilities do not have mandatory reporting. State-mandated
collection of personally identifying information on citizens on the autism
spectrum suggests that autism is unlike other disabilities and could result
in a negative public perception of autism. Strong measures are necessary to
prevent potential harm. The Autistic Self Advocacy Network recommends that
if an autism registry is created, a civil cause of action for unlawful
disclosure of personally identifying information should also be created.

â–ª Incomplete data is likely because a significant number of children on
the autism spectrum do not receive a formal diagnosis. Some parents,
concerned about the possibility of stigma and discrimination, choose not to
seek a diagnosis. Other parents are simply unaware that their child has
autistic traits. Consequently, data obtained from an autism registry may
not be comprehensive and could give rise to misleading research results. The
Autistic Self Advocacy Network recommends that if an autism registry is
created, clear statements should be made indicating that the data may not be
comprehensive.

â–ª Written consent should be obtained in a manner similar to the informed
consent procedures that are required to be used in research studies. At the
time of diagnosis of a child, the parents could be given a consent form
about the registry, which they would need to read, understand, and sign
before any identifying data could be entered. The consent form would
explain what the data was, how it would be used, the choices that the
parents had regarding consent, the risks and benefits involved, the privacy
concerns, who had access to the data and under what circumstances, and how
to opt out at a later date. The Autistic Self Advocacy Network recommends
that if an autism registry is created, written consent along informed
consent guidelines should be required.
Compiled by ASAN Board Member Meg Evans. Direct questions to Ari Ne’eman of
The Autistic Self-Advocacy Network at
aneeman@autisticad vocacy.org<aneeman@autisticadv ocacy.org>.
Further information about The Autistic Self-Advocacy Network can be found at
http://www.autistic advocacy. org <http://www.autistic advocacy. org/>

—
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autistic advocacy. org
732.763.5530

First Published Wednesday, 4 March 2009

http://www.presscon nects.com/ apps/pbcs. dll/article? AID=200990303032 0

Broome Developmental Services (BDS) is planning to build a new group home
for eight children with autism in the Town of Union.

Southern Tier Independence Center strongly opposes this project. If instead
of spending over a million dollars to build a group home, plus hundreds of
thousands more for staffing, those funds were used to provide more
individual respite, supports in the child’s home, and behavioral
intervention services, many more families could keep their autistic children
in their own homes.

If there are children whose families cannot keep them, development of family
care homes with appropriate services for these children would be better
because, unlike group homes, family care provides a much warmer real-family
environment.

This project is part of a larger Office of Mental Retardation and
Developmental Disabilities pilot project to build four group homes for
autistic children around the state to conduct research and demonstrate new
techniques. But those techniques can be even better applied in children’s
natural homes or family care homes.

In recent years OMRDD Commissioner Diana Jones-Ritter has promoted a new
emphasis on community integration for people with disabilities in New York,
both in her work at OMRDD and as chairwoman of the state’s Most Integrated
Setting Coordinating Council (MISCC).

STIC was hopeful that with Ritter’s appointment of her MISCC point person,
Carl Letson, as director of Broome Developmental Services, that promised
direction would be followed locally. But Letson told me they would not
consider stopping the project, which has been in the works for more than a
year.

Group homes are far from the most integrated setting appropriate for
children with autism. Better options are available, and STIC is now gravely
concerned that the changes promised to people with developmental
disabilities in the Greater Binghamton Region and across the state won’t
happen.

Residents of group homes have told us that they are just small institutions
where they are unable to be independent or to truly take part in the
community. Letson says these homes are “community-based, ” but that isn’t
what people who live there think. Consumers don’t want group homes, so why
are they being built?

—
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autistic advocacy. org
732.763.5530