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WAADF Volume 1, Issue 3

Inside this issue:

Hello everyone,

WAADF has had a very busy and productive year in 2006. Our second AGM in September saw some changes in the Board. Kate Smith and Wendy Mar-shall resigned. Kate has moved over to the Justice Department and Wendy Marshall has re-cently had a new baby boy (Drew). The Board would like to thank them both for their outstanding commitment and hard work for WAADF. We also welcome Helen Bolton and Sandra Gray who have joined the Board as Co-Secretaries – their personal organization and efficiency has enabled a seam-less transition. Ongoing Board members include Ritu Camp-bell, Suzanne Midford, Robyn Weinstein, John Wray, Jane Lesslie, Alana Maley-Berg, Jane Klinken and Sabrina De Beer. Sabrina has also taken over as Editor of WAADF’s quarterly newsletter and is doing an out-standing job – all items of inter-est are happily accepted so please send them to Sabrina who will keep them for inclu-sion in upcoming editions.

WAADF also had the opportu-nity this year to make its pres-ence known on the interna-tional stage. I had the honour of presenting WAADF at the 2nd Autism Congress in South Af-rica. Our presentation (attached to the December Forum minutes) was well at-tended and several delegates were interested in purchasing WAADF’s publications. A par-ticularly interesting outcome has been the follow-up contact

received from the Northern Ireland Diagnostic Special Inter-est Group. In addition to them purchasing several copies of our booklets, we are currently discussing ways in which our groups can form a collaborative and ongoing relationship with the potential to mutually ex-pand and strengthen our think-ing and practices in a variety of areas. In a similar vein, Glenys Dixon was discussing WAADF with fellow delegates at the autism research conference in Canada earlier this year. There is a lot of interest in what we are doing here in WA, in fact Glenys ended up giving her copy of the Assessors’ manual to a member of the Centre for Diseases Control in the US. It will be interesting to see where all of this leads….we’ll keep you posted!

The WAADF Board is working towards developing and ex-panding the group as a whole and its members services in particular. One part of this has been the ongoing refinement and expansion of the website – under the talented guidance of Alana Maley-Berg. We are cur-rently working on developing a Members Only part of the web-site as well as reviewing and refining the general access por-tions ~ please drop by and check it out when you have a chance. All feedback is appreci-ated!

Ritu Campbell has done an excellent job this year of put-ting together a wide range of speakers, including case discus-sions as well as topics of inter-

est. If any members have a case they would like to present or other suggestions for speakers or topics please contact Ritu directly.

Suzanne Midford has continued to manage the job of WAADF Treasurer, including dealing with the ATO and the inevita-ble paperwork that incurs! We have just completed a review of our membership and realise that not all past financial mem-bers have renewed their mem-bership. There will be a flyer going out soon to all non-financial members reminding them of the renewal date and the benefits of membership. If you receive one of these flyers please take a moment and con-sider supporting WAADF so that it can continue to grow as an effective voice for autism in the community as well as a practical support to practitio-ners.

We hope that you enjoy this edition of the newsletter ~ please feel free to provide sug-gestions and feedback so that it can continue to develop to meet your needs.

On behalf of the WAADF Board I want to wish you all a happy and safe holiday season, and fun and relaxation with friends and families over this summer period. We look for-ward to seeing everyone in 2007.

Regards,

Sarah MacDermott

WAADF Chair, 2006-2007

SUMMER 2006

VOLUME 1, Issue 3

Chairperson’s Update Sarah MacDermott

Inside this issue:

Chairperson’s Update 1

Research Report 2

Upcoming Conferences 2

WA Autism Register Overview

3

Book review 4

DVD review 4

Research

Genetic Link to Autism

5

Board Member Details

Web Link

7

Waiting Times

Dates of Meetings

7

Support & Information programs

6

It is really important that the child's dis-ability not become the entire focus. The child should live in your house rather than you living in their house. Otherwise the family is defined by the dis-ability and the child, the marriage and the other children all suf-fer. The child has spe-cial challenges and he is also a member of the family.

Dr Mark L Batshaw

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WAADF Volume 1, Issue 3

UPCOMING CONFERENCES:

Progress & Challenges in the Behavioural Treatment of Autism

Association for Behaviour Analysis International

2-4 February 2007 Boston, USA

More info: www.abainternational.org/autconf

A Seminar with Tony Attwood

(an AISWA targeted program)

23 March 2007 Floreat WA

More info: www.ais.wa.edu..au

We’re always on the look-out for volunteers to share diagnostic case studies with members at the WAADF meetings. In the past we have

had wonderful presentations from our members on topics such as elec-tive mutism, visual impairment, Down Syndrome and semantic-

pragmatic disorder. These presentations not only make our meetings more interesting, but add to the professional development of our diag-nostic community. If you have a case to present, don’t be shy! We’d

love to hear from you. Please contact the WAADF agenda coordinator, Ritu Campbell on ritucampbell@bigpond.com. Cheers!

Inside the Autistic Mind Excerpt from an Article in TIME Magazine Sunday May 7, 2006

Call for Case Presentations

THE AUTISTIC BRAIN

Whether the cause is maternal antibodies, heavy metals or some-thing else, there is no question that the brains of young children with autism have unusual features. To begin with, they tend to be too big. In studies based on magnetic resonance imaging (MRI) and basic tape-measure readings, neuroscientist Eric Courchesne at Children's Hospital of San Diego showed that while children with autism are born with ordinary-size brains, they experience a rapid expansion by age 2--particularly in the frontal lobes. By age 4, says Courchesne, autistic children tend to have brains the size of a normal 13-year-old. This aberrant growth is even more pro-nounced in girls, he says, although for reasons that remain myste-rious, only 1 out of 5 children with autism is female. More recent studies by Amaral and others have found that the amygdala, an area associated with social behavior, is also oversize, a finding Amaral believes is related to the high levels of anxiety seen in as many as 80% of people with autism.

Harvard pediatric neurologist Dr. Martha Herbert reported last year that the excess white matter in autistic brains has a specific distribution: local areas tend to be overconnected, while links between more distant regions of the brain are weak. The brain's right and left hemispheres are also poorly connected. It's as if there are too many competing local services but no long distance.

This observation jibes neatly with imaging studies that look at live brain activity in autistic people. Studies using functional MRI show a lack of coordination among brain regions, says Marcel Just, di-rector of Carnegie Mellon's Center for Cognitive Brain Imaging in Pittsburgh, Pa. Just has scanned dozens of 15- to 35-year-old autistic people with IQs in the normal range, giving them thinking tasks as he monitors their brain activity. "One thing you see," says

Just, "is that [activity in] different areas is not going up and down at the same time. There's a lack of synchronization, sort of like a difference between a jam session and a string quartet. In autism, each area does its own thing."

What remains unclear is whether the interconnectivity problem is the result of autism or its cause. Perhaps all that excess wiring is like the extra blood vessels around the heart of a person who has suffered a heart attack--the body's attempt to route around a problem. Or perhaps the abnormal growth of the brain has to do with the immune system; researchers at Johns Hopkins have found signs that autistic brains have chronic inflammation. "It's impossible to tell the chicken from the egg at this point," Just says.Autistic people have been shown to use their brains in un-usual ways: they memorize alphabet characters in a part of the brain that ordinarily processes shapes. They tend to use the visual centers in the back of the brain for tasks usually handled by the prefrontal cortex. They often look at the mouth instead of the eyes of someone who is speaking. Their focus, says psychologist Ami Klin of Yale's Child Study Center, is "not on the social alle-giances--for example, the longing gaze of a mother--but physical allegiances--a mouth that moves."

Do these differences reflect fundamental pathology, or are they downstream effects of some more basic problem? No one knows. But the fact that early intervention brings better results for children with ASD could be a clue that some of the odd brain anatomy and activity are secondary--and perhaps even prevent-able. Studies that look at whether early therapy might help nor-malize the brain are beginning at York University in Toronto, but results are probably years away.

A wealth of new brain research--and poignant testimony from people who have autism--is lifting the veil on this mysterious condition By CLAUDIA WALLIS

" ... If we could eliminate the genes for things like autism, I think it would be disastrous. The healthiest state for a gene pool is maximum diversity of things that might be good."

Kirk Wilhelmsen.

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WAADF Volume 1, Issue 3

WA REGISTER FOR AUTISM SPECTRUM

DISORDERS

Background

Autism spectrum disorders include all autism-related conditions described medically as Perva-sive Developmental Disorders. These are: Au-tism, Asperger syndrome, Childhood Disintegra-tive Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Although Rett syndrome is also categorised as a Pervasive Developmental Disorder, people diagnosed with Rett syndrome are not included on this register.

Autism spectrum disorders are characterised clinically by significant impairment in three areas of development: a) poor social interaction; b) deficits in communication; and c) restricted range of interests. Symptoms may be apparent before 30 months of age, but diagnosis is tenta-tive before this time. Many children have difficul-ties integrating into society (e.g. in school, social gatherings and sporting activities), and each require varying degrees of supervision and sup-port in daily living.

Current understanding of the aetiology and intervention strategies for autism spectrum disorders is limited. The WA Autism Register serves as a primary resource to researchers, clinicians and service providers to assist with our knowledge of these complex disorders. Western Australia (WA) has a variety of com-prehensive state databases and its geographic isolation and centrally distributed population makes it an ideal location to manage a register. The WA Autism Register is prospective, collect-ing information on all people diagnosed in WA since January 1999.

Purpose and aims

The Register collects information that is useful in describing the pattern of autism diagnoses in WA, including;

• The number and ages of people diagnosed

• The severity of disability

• Shared biological, psychiatric and developmen-tal features

• Group changes over time

The Register has several applications;

• Research

S Epidemiology

S Biology and psychology

S Longitudinal studies

• Planning for services

S Health

S Education

S Disability

Types of information collected

The Register collects simple demographic and diagnostic information such as;

• Date of birth, gender, primary language at home

• Diagnostic criteria used

• Diagnostic methods

• IQ (verbal and non-verbal) and/or develop-mental abilities

• Other cognitive assessments

• Comorbidity (the presence of other condi-tions)

• Language assessments

• Adaptive behaviour

The Advisory Committee

The Register is governed by an Advisory Com-mittee. It currently comprises of one parent representative; two psychologists, one psychia-trist, and one speech pathologist in private prac-tice; and representatives from the two major diagnostic centres (Disability Services Commis-sion and the State Child Development Centre). Each member was nominated by the institution they represent. The Advisory Committee meets on a regular basis. Issues that are discussed at meetings include the running and methodology of the Register, ethical issues, political concerns, diagnostic issues, and diagnostic training oppor-tunities.

Confidentiality

The Register is bound by a confidentiality proto-col (see Appendix). Information is stored on a non-networked computer that is kept in a locked room on secure premises at the Tele-thon Institute for Child Health Research, and is password protected. Requests for simple data are made to the Registrar, and the Advisory Committee considers requests for more com-plex data.

Ethical approval to collect data for the Register was received from the University of Western Australia, Princess Margaret Hospital, Disability Services Commission, State Child Development Centre, and the Royal Australian and New Zea-land College of Psychiatrists.

Notifications to the Register

A data collection form for each newly diagnosed case is completed by a clinician at the time of diagnosis and sent to the Register. The clinician fills in the diagnostic and demographic details that are available to them. For the confidential information (name, date of birth, postcode) to

be included with the entry, consent must be obtained from the parents or persons them-selves. The confidential information helps to eliminate double entries of notifications to the Register, to recognise changes in diagnoses within the same person over time, and to assist with the manual checking of numbers received at the Register with numbers diagnosed at each centre. At the end of each year, the major diag-nosing centres review their records for any cases that have been missed.

Register documents

The Register has several formal documents – a data collection form, consent form, information sheet, and a research interest form. It also has documentation of the terms of reference and confidentiality guidelines.

Changes in documents over time

Several of the documents have been modified since the Register began data collection. Minor changes to the information sheet and consent form and several changes to the data collection form have been made. All changes were ap-proved by the relevant ethics committees.

Requests for information

Since its inception, the Register has received a large number of requests from local, interstate and international sources for data, information, and research participants. Requests have been made from government departments, autism service providers, researchers, students, and the media.

Funding

Initial funding for the Register was received from two sources; the Disability Services Commis-sion, and the Australian Rotary Health Research Fund. Since 2002, funds have been received from both the WA Department of Education and the WA Department of Health to maintain its activi-ties. The financial support of these Departments is greatly appreciated.

Register correspondence: WA Register for Autism Spectrum Disorders Telethon Institute for Child Health Research PO Box 855 West Perth WA 6872 Australia Phone + (61 8) 9489 7777 Fax + (61 8) 9489 7700

autismreg@ichr.uwa.edu.au

The WA Autism Register an overview by Dr John Wray Spokesperson for the Advisory Committee.

"It seems that for success in science and art,

a dash of autism is essential.” Hans Asperger

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WAADF Volume 1, Issue 3

An Asperger Dictionary of Everyday Expressions 2nd edition

BIC: CGD JC VFPD

Praise for the first edi-

tion:

'This is a truly inspira-tional book and teach-ing tool and a very successful dictionary for all. It should be on the bookshelves of every inclusive class-room, house and of-fice.'

– Good Autism Prac-

tice

'A useful addition to the reference library of par-ents and professionals working with children and adults with Autistic Spectrum Disorders.'

– The National Association for Gifted Children

'...illustrates just how complex the English lan-guage is... A brilliant idea if you're not sure what an expression means or which one to use.'

This revised and expanded edition adds over 300 new expressions that help unlock the meaning of everyday expressions.

Both informative and entertaining, the book ad-dresses an important aspect of social communi-cation for people with Asperger Syndrome, who use direct, precise language and 'take things literally'. This dictionary aims to dispel any con-fusion that arises from the misinterpretation of language. It provides explanations of over 5000 idiomatic expressions and a useful guide to their politeness level. Each expression is accompa-nied by a clear explanation of its meaning and when and how it might be used. The expres-sions are taken from British and American Eng-lish, with some Australian expressions included as well.

Although the book is primarily intended for peo-ple with Asperger Syndrome, it will be useful for anyone who has problems understanding idio-matic and colloquial English. An essential re-source and an informative read; this dictionary will assist in a wide range of situations.

Asperger Syndrome A Different Mind

Narrated by Simon Baron-Cohen, this DVD presents viewers with the opportunity to both see and hear about the nature of Asperger Syn-drome from children and adults themselves who have AS, as well as from their fam-ily members and school teach-ers.

With video footage from a range of contexts, including leisure time at home, lessons and playtime at school and individual accounts of experi-ences of AS, it provides imme-

diate insight into the lives of six individuals, from Joe, aged 5, to twins Peter and Matthew, 22. Asperger Syndrome: A Different Mind introduces the viewer to the special interests, speech and language charac-teristics, social interaction dif-ficulties and cognitive chal-lenges of people with AS. It also highlights the positive developments that have taken place in recent years, within schools particularly, towards a better understanding of, and more effective provision for, children with AS. This is an excellent introduc-tion to Asperger Syndrome for parents, teachers and other professionals.

byIan Stuart-Hamilton

Paperback, ISBN: 9781843105183, 256pp, 2006, £13.99, $19.95

Have You Heard About…? New Resources

Book Review

Simon Baron-Cohen

DVD, ISBN: 9781843104711, 2006, £19.99 + VAT = 23.49, $35.00

5 www.waadf.org.au

WAADF Volume 1, Issue 3

Let’s Talk About… Research!

The following excerpt of an article

came from the Autism Speaks website.

The website has a UK and Canada

focus ,but contains some interesting

resources and is worth having a

browse! www..AutismSpeaks.org

In a multi-center study of 222 families in the United States,

scientists have found a strong

genetic link to autism on chromo-

some 7. The study, in which five

large universities participated, was

part of the National Institutes of

Health Collaborative Programs of

Excellence in Autism, or CPEA.

The results were published in the

August, 2006 issue of Molecular

Psychiatry.

Autism, a neurodevelopmental

disorder in which a child exhibits

impaired development in social

interaction and language, and

repetitive, or a restricted range of,

activities, affects up to l.5 million

Americans, and is the nation's

fastest growing development dis-

ability.

Statistics show that most children

develop symptoms of autism in

their first year, but about 25 per-

cent seem to develop normally,

then show regression in the sec-

ond and third years of life. Previ-

ous studies indicate that there is a

genetic role in autism: if one

identical twin has autism, the

other is 69 percent -95 percent

more likely to have the disorder

also. Fraternal twins are only 0

percent -24 percent more likely to

share the disorder, similar to non-

twin siblings at 2.8 percent-7

percent more likely.

Specific Genetic Link to Autism

The search for a genetic link to

autism has been elusive. Accord-

ing to the researchers of the cur-

rent study, the extent of genetic

variation in autism is unknown,

and if extensive, could make it

very difficult to detect specific

locations in the genome. But they

suggest that the differences in

results across previous linkage

studies may also reflect the wide

variety of study designs and the

inconsistency of diagnostic criteria

used.

In this study, the researchers used

the strictest diagnosis of autism in

affected individuals. In previous

linkage studies, autism has been

associated with various regions of

chromosomes and, more recently,

with relatively rare single gene

disorders, such as fragile X syn-

drome, the most commonly inher-

ited form of mental impairment

according to the Fragile X Re-

search Foundation.

Among the regions that have been

identified in various studies are 1p

(“p” signifying the long arm of the

chromosome), 2 q (the “q” signify-

ing the short arm of the chromo-

some), 7q, 17q, and 19q, with the

2q, 7q and 17q regions giving the

strongest signals.

Link to Chromosome 7q

To identify regions of the genome

containing autism genes, the

researchers performed a genome-

wide linkage scan using the geno-

types (the genetic make-ups) of the

individuals in the participating

222 families. The strongest link to

autism was observed on chromo-

some 7q, overlapping positive

results of analyses from the Inter-

national Molecular Genetic Study

of Autism Consortium, and other

previous studies.

The research team attempted to

duplicate gender-related links

found on chromosomes 4, 7 and

17 in previous studies. They

found the strongest signal from

the primary genome scan of both

male and female families was seen

at a localized point on chromo-

some 7, with a stronger result

from the male only families com-

pared to female only families. The

strongest male only signal was on

chromosome 11 and for the fe-

male only group on chromosome

4, the latter comparable to find-

ings from the Autism Genetic

Resource Exchange consortium.

The team observed no signal for

either sex on chromosome 17.

The researchers also sought to

replicate previous studies related

to regression, where linkage sig-

nals had been observed on chro-

mosomes 7 and 21. The families

were analyzed in two groups,

those with at least one affected

individual with regression versus

families with no cases of regres-

sion. The researchers observed

modest linkage signals for the

regression-positive group on chro-

mosomes 10 and 14, and more

significant peaks in the regression-

negative group on chromosomes 3

and 4. Using language acquisition

data as a quantitative trait in their

linkage analysis, the researchers

observed a chromosome 9 signal

among the regression-positive

group.

Discussion and Caveats

Because of the high male -to-

female ratio of autism (three-to-

four males to every female with

the disorder), the researchers

suggest that the observed differ-

ences in gender linkages present

the possibility that there may be

male- and female-specific genes, or

more likely, that the ability of

some susceptibility genes to effect

male versus female subjects is

significantly different.

When only regression-negative

families were considered, evidence

for genetic linkage on both chro-

mosomes 4 and 3 increased mark-

edly, suggesting differences in the

genetics underlying regression

versus the genetics of early devel-

oping autism in non-regression

subjects.

In comparing their study results to

other studies, the researchers

believe they “provided strong

support for a chromosome 7 au-

tism locus and lesser but still

compelling support for loci on

chromosomes 3, 4 and 11.” They

were unable, however, to repro-

duce significant signals reported

by others previously. They believe

this may be explained by the fact

that not all studies have the large

sample sizes needed and the possi-

bility that some of the smaller

signals, including those reported

in the current study, may have

been false-positive results.

The variation in findings may be

due to differences across studies

in the definition of traits and in

the gathering of family history.

The research team tried to mini-

mize the variations by using a

rigorous diagnostic protocol and

the strictest criteria for autism.

But some signals were more sig-

nificant for the broad diagnosis

than for the strict diagnosis of

autism. Thus, the researchers

believe that the strict criteria used

may actually have reduced the

evidence in favor of genetic link-

age by eliminating some families

or individuals that would have

added to the evidence for linkage.

The researchers called for larger

sample sizes for linkage identifica-

tion and replication to establish

their significance in the field, but

not at the expense of increasing

the heterogeneity, or variation of

characteristics, among the study

groups. They believe it may be

useful to identify subgroups of

phenotypes, the observable sets of

traits or characteristics of people

as determined by genes and the

environments in which they devel-

oped.

Analysis of autism endopheno-

types, which are characteristics

unseen by the unaided eye that

are normally associated with a

condition but are not direct symp-

toms of the disorder, may permit

mapping of genetic locations that

contribute to the specific domains

of autism (social interaction, lan-

guage, restricted range of activi-

ties) that would be difficult to

genetically map using only diagno-

sis as the trait.

Finally, additional tools may be

needed and designed specifically

for quantitative traits related to

autism in both affected and nor-

mal individuals so that phenotypic

information from all family mem-

bers can be used to increase the

power to detect linkage.

Authors: Schellenberg GD, Daw-

son G, Sung YJ, Estes A, Munson

J, Rosenthal E, Rothstein J, Flod-

man P, Smith M, Coon H, Leong

L, Yu C-E, Stodgell C, Rodier PM,

Spence MA, Minshew N, McMa-

hon WM, Wijsman EM

Multi-Center Research Team Discovers Genetic Link to Autism

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WAADF Volume 1, Issue 3

Support and Information

Autism Association of Western Australia (Inc) ABN 54 354 917 843

Have you heard about the following programs?

Both commence in February.

7 www.waadf.org.au

WAADF Volume 1, Issue 3

Disability Services Commission:

Metropolitan

Preschool: 1- 2 months

School Aged: 18 months

Country

Preschool: 3- 4 months

School Aged: 6- 8 months

Waitlist Times

Dates of Meetings

John Wray

John.wray@health.wa.gov.au

Alana Maley–Berg:

alanam@dsc.wa.gov.au

Robyn Weinstein

robynweinstein@optusnet.com.au

Jane Lesslie

jane@hitechnology.com.au

Jane Klinken

janek@dsc.wa.gov.au

Sabrina de Beer

sabrinad@dsc.wa.gov.au

Forum Meetings are held on the first Thursday of the last month of the quarter:

Venue: Conference Room

State Child Development Centre.

Time: 9.00am-11.00am

Next meetings: Thursday 1st March

then: 6th June, 6th September, 6th December

Board Meetings are held every 4—6 weeks

(next meeting 1st February 2007)

Please contact a Board Member if you have any

issues you would like discussed.

NEWSLETTER CONTRIBUTIONS

To keep the newsletter coming out

quarterly, we need your help!

Please forward contributions for the next

newsletter to Sabrina de Beer by

mid February to allow for early March

publication.

sabrinad@dsc.wa.gov.au

State Child Development Centre:

Preschool: 4-6 months

School Aged: 24 months

Andrea Way CDC:

Preschool: 4-6 months

School Aged: 12-15 months

Private Practice:

within weeks– up to 1 month

We’re on the web! Visit www.waadf.org.au

Chairperson:

Sarah MacDermott

vegemite@westnet.com.au

Vice Chairperson:

Ritu Campbell

ritucampbell@bigpond.com.

Treasurer:

Sue Midford

suzannemidford@hotmail.com

Secretary:

Helen Bolton & Sandy Gray

waadfsecretary@iinet.net..au