The corner stone of the work of IAA has been how we can respond to individual needs of members. This can take the form of one to one advocacy support or group advocacy initiatives. Our advocacy can be broken down into two distinct areas:
- National Advocacy work – On this platform IAA is involved in identifying the need to address matters of policy and matters relating to the quality of lives of families affected by autism. Examples of our work in this area are as follows:
- IAA’s involvement in securing the establishment of special schools for children with autism and complex needs delivering evidence based education intervention including Applied Behaviour Analysis. This is turn has lead to the establishment of two new education patron bodies – Autism Ireland and Saplings Ireland.
- IAA’s involvement in developing a European wide Autism public health initiative. The initial phase being the prevalence study being conducted by DCU on behalf of Irish Autism Action.
- IAA’s Genio project which centres on transition for adolescence/adults exiting second level education and seeking post 18 access to services. This project is being done in conjunction with the Watson Institute, Pittsburgh.
- Individual advocacy support
- IAA has established the following team to address advocacy needs amongst the autism community.
- CEO – Part time involvement in advocacy
- 2 part time advocacy officers
- One part time admin advocacy support staff
- Two part time behaviour analysts
- Part time home based support workers
- The work of the team in directed by our advocacy protocol document and IAA will be establishing a weekly advocacy clinic at our Solas Centre, St Gabriel’s Road, Dollymount, Dublin 3. To make an appointment please contact the IAA national office 044 9371680 or email email@example.com. Please include a brief outline of your case.
- Current case load is 82 cases and a significant increase in demand is being experienced arising from the economic pressures which families are experiencing in addition to the stresses and demands of autism in a family.
- For the complete Advocacy policy of Irish Autism Action, click here
- IAA has established the following team to address advocacy needs amongst the autism community.
Click here for advocacy testimonial from Lisa Naughton.
- IAA sees as one of its primary objectives to increase the awareness and understanding of the needs of families affected by autism. The groups that we target for this purpose are the general public, the media in all its forms, policy and government departments and our fellow service providers in this sector. A significant advancement has been the establishment of the one stop information shop for autism www.autismsupport.ie
- A key date for all our calendars is World Autism Day 2nd April 2013. IAA wish to seek suggestions from any interested parties as to how we might maximise this awareness opportunity. Thoughts and suggestions can be forwarded to firstname.lastname@example.org
- IAA have circulated the following on a national basis with the assistance of a poster campaign to all GP surgeries in the country:
- Over 1500 assessments completed (PSY, OT & SLT)
- Wait time 2 months versus State wait time of 18 months
- Establishment of a counselling service which currently caters for 30 clients
- Information service
- Training programs
In addition to its lobbying work for permanent recognition of the pilot schools IAA also provide services to mainstream and ASD units in an effort to support placements that may be breaking down. This work can take the form of staff training in schools, parents support at home and possibly additional behaviour specialist staff working on site in the school.
Prevalence Study –
A pilot study was undertaken at a mixed national school in Dublin South to test the mechanics of the Irish Autism Protocol. With the permission of school principals study packs were given to eligible children 6-11 yrs of age (born from 1st January 98 to 31st December 03) by their teacher for the attention of their parents / guardians. N = 640 children attending senior infants to sixth class were eligible to participate, girls n = 303, 47% and boys n = 337, 53%. Overall response rates were high
n = 463, 72.3% completed study booklets were received, girls school n = 224, 73.9%, boys school
n = 239, 70.9%.
12.97% n = 59 parents / guardians reported the participating child had a learning disability, communication, or co-ordination disorder. The most frequently reported disorders were speech & language n = 26, 44.07%, slow progress (unspecified) n = 21, 35.59%, ASD / Aspergers n = 6, 10.17% and ADHD n = 3, 5.08%. N = 41, 66.1% of parents / guardians stated the child’s disorder had been professionally diagnosed within the last six months n = 5, 12.5%, 6-12 months n = 3, 7.5%, 1-2 yrs n = 9, 22.5% and > 2 yrs n = 23, 57.5%.
2% n = 9 children screened had high cut off scores on the Social Communication Questionnaire (SCQ) >15. The majority were boys n = 7, 77.8%, girls n = 2, 22.2%. Most of the boys with high cut off scores had a prior professional diagnosis of ASD/ Aspergers n = 4, 57.14% based on parent report. Two boys 28.57% with high scores had a prior diagnosis of dyspraxia based on parent report.
One boy was identified with high scores who had not had a prior assessment of a learning disability, based on parent report, neither did the boys parents express any concerns about the child.
Two boys with a prior diagnosis of Asperger syndrome based on parent report had SCQ below the specified cut off (false negatives). These children’s evaluations will be examined; they may require referral to secondary screening.
Two girls 22.2% were identified with high cut off scores on the (SCQ). One girl had a prior diagnosis of a speech and language disorder based on parental report. The other girl had not had not been diagnosed with a learning disability, her parents had not expressed concerns about the child. Autism positive responses to ADI-R based SCQ questions were evident across the general population of children screened.
The Social Communication Questionnaire (SCQ) scores were strongly positively skewed = 2.641, and ranged from 0 – 3, the scale had good Cronbach alpha reliability = 0.819.
There were significant differences in SCQ scores by gender boys X = 4.06, SD = 4.42, girls X = 3.07, SD = 2.75, p < 0.01. There were significant differences in SCQ scores where parents / guardians reported the child had a learning disability, communication and co-ordination disorder X = 6.71, SD = 6.58 and children who did not have a learning disability X = 3.21, SD = 2.84 p < 0.001.
10.4%, n =24 children were identified with borderline and abnormal range scores on the Strengths & Difficulties Questionnaire (SDQ). Scores were positively skewed = 1.106, range 0 – 26, Cronbach alpha reliability was poor = 0.438 (acceptable 0.7 +).
I propose that the Autism Spectrum Screening Questionnaire (ASSQ) (Ehlers et al, 1999) a first stage population screening instrument for Aspergers syndrome in mainstream primary schools should be included in the study booklet instead of the (SDQ) to identify children with a suspected underlying diagnosis of Asperger syndrome who may not be identified with the SCQ.
For full report click here.
Upon establishment of our prevalence figure for Ireland we then propose to undertake the following:
Once the incidence has been established then undertake an economic study of the whole life cost of autism.
To then undertake economic research which will demonstrate the reduction in life long costs which can be achieved resulting from the front loading of investment in early intervention.
A comprehensive awareness campaign - is planned with regard to the issue of autism on this island. The awareness campaign will consist of the following:
- the development of an all Ireland one stop information and resource website for autism
- the commissioning of mobile information units in the North and in the South. The purpose of these mobile information units will be to ensure that the public in general and more specifically our main stake holders clearly see, understand and are empowered to assist us in achieving our objectives.
- the provision of an ID card for all in Ireland with the diagnosis of autism and Aspergers. A chip to be included in the card which will facilitate access to information on services. This card to be branded as Irish Autism Action. This will serve a dual purpose in that
a) we will encourage greater membership of a national autism organisation
b) we will ensure that relating to our membership and future planning we will have data base information that is accurate and timely.
In partnership with Autism Speaks we wish to undertake the piloting of early screening tools to be used by key disciplines in the health field e.g. general practitioners and public health nurses. The objective here is to develop the early screening tool that works best and in so doing train these key disciplines in its usage. Following on from this, to then lobby on the back of the prevalence study, the economic study, the awareness campaign and best practice in early screening, the introduction of mandatory early screening of all two year olds on this island.
Irish Autism Action in partnership with Sligo Institute Technology has completed a pilot autism specific advocacy training programme for parents.
It is our intention through this research to develop a comprehensive range of training programmes for parents and individuals on the spectrum to facilitate and empower them to create the best possible opportunities for quality of life for all families on this island affected by autism.
- To provide academically capable students with autism with individually tailored support services to enable them to achieve success at the 3rd level institution level.
- Training of staff, developing capacity
- Comprehensive evaluations for each student participant to identify personal strengths and needs.
- Orientation/preparation program for students who are preparing to enter 3rd level institution.
- Supports for matriculated students
- Dissemination of the model
Click on the link for more information on the project http://www.genio.ie/
Update: The Genio interviews took place on the 15th and 16th of December 2010. The successful candidates will be notified prior to our Christmas break. We had a high level of interest in the project and the standard of applicant was excellent. The more we speak about this project through our interview process, we are increasingly excited about it's potential and how the partnership with The Watson Institute can grow and evolve. For those who competed, we thank them for their interest and we look forward to a year of achievement in supporting adolescence and adults through third level transition.
Irish Autism Action is the lead agency in relation to this initiative. The final closing conference on the work of Autism 2010 took place in Dublin on Monday 29th November 2010 http://www.autism2010.eu/index.htm. This project has also received the support of the Executive Agency for Health and Consumers (EAHC), Department of Health and Children and Autism Speaks. Click on the link to read the conference objectives http://www.autism2010.eu/conference_objectives.htm
The exective summary report from the conference can be found here
IAA are proud to have helped financially in the establishment of supported living service for Autism Lifecare Trust at the Blossoms, Stillorgan, Beechpark Apartments. The service provider is the Autism Initiatives Group who IAA look forward to partnering with into the future. For further information click on http://www.ai-ni.co.uk/
Autism in the Media
Boyle tells of relief after being diagnosed with Aspergers
Mon Dec 09 2013
Susan Boyle has been diagnosed with Aspergers Syndrome
Mon Dec 09 2013