Part of aspire’s mission is to advance and support research in the field of Asperger Syndrome/High Functioning Autism. On this page we will publish the results of research that we have conducted as well as offering opportunities for others to publicise their work and findings.
From time to time we may ask you participate in a study. It is only with your participation can aspire hope to change and help improve the situation for those with Asperger Syndrome. We hope we can count on your continued help and support.
Research conducted by aspireEvaluating the Needs of Children with Asperger Syndrome and the Needs of their Parents
This research project was commissioned by aspire, the Asperger Syndrome Association of Ireland, in order to determine and highlight the current needs of children with Asperger’s Syndrome (AS) living in Ireland, as well as their parents.
Parents who were members of aspire were surveyed to find out what their children were receiving in terms of educational supports and services, and how this compared with their actual needs. This report focuses on children and young people up to the age of 18, with a further report on the needs of adults with Asperger’s Syndrome currently in progress.
Evaluating the Needs of Children with Asperger
Syndrome and the Needs of their Parents
---------------------------------------------------
The MRI Reward Study
The MRI Autism
Reward Study is a brain imaging project that is
being carried out by researchers from Trinity
College Dublin in the new Centre for Advanced
Medical Imaging (CAMI) at St. James’s
Hospital. The purpose of this study is to improve
understanding of brain systems that are important
for processing different types of rewards. We are
looking for right handed males, aged between 12 and
25, who have a diagnosis of Autism or Asperger
Syndrome, to take part in this study. Participation
involved two testing sessions. The first session
takes place at Trinity College Dublin, and involves
doing some pen and paper tests, as well as some
computer based tasks. The second testing session
involves doing computer based tasks while lying in
the MRI scanner at CAMI, in St. James’s
Hospital. If you are interested in taking part,
please read the information sheets provided. There
are separate versions for participants who are over
18 and those who are under 18. Please feel free to
contact us if you have any further questions, or if
you would like to take part.
Contact Details:
Sonja Delmonte
Email: [email protected]
Tel. (01) 896 2464 / (01) 896 4102
Information Sheets:
Under 18s |
Over 18s
-----------------------------------------------------
A Study of the Economic Costs of the Non-Provision of Services for People with Asperger Syndrome in Ireland
aspire undertook a small-scale study examining the economic costs associated with the non-provision of services for people with AS in Ireland. This study examines the costs to society when parents or other family members are compelled to leave their jobs in order to take care of a child or adult with Asperger Syndrome due to the lack of professional services available. Specifically, these economic costs refer to the loss of this income to the state, total funding spent on disability allowances and benefits, and the long-term costs associated with a person with AS being unable to work due to the inadequate levels of social skills training, education or employment training which they have received to date.
The findings of this study are put forward, not to provide absolutely accurate figures but to suggest a different approach or methodology when the provision of services in the area of autism is being considered.
---------------------------------------------------
Comhairle/Disability Federation of Ireland (DFI) Study Accommodation Needs of People with Disabilities: Experiences and Perspectives
aspire participated in the above research project which aimed to assess the housing needs of people with disabilities in Ireland. Our focus was on adults with Asperger Syndrome/High Functioning Autism and we greatly appreciate all the adults and families who took the time to help us with this research. Your information will be hugely beneficial in changing the current housing situation once the final report has been completed.
Study details:
The study was a joint venture between Comhairle and DFI. Its focus was on the accommodation needs of people with disabilities in an evolving policy context. The need for the study arises because of ongoing and emerging difficulties experienced by people with disabilities seeking appropriate accommodation, which have been identified by DFI member organisations and other NGOS. The research focused on the actual experiences of people with disabilities, their families and representative organisations in relation to accessing appropriate accommodation and community supports necessary for independent living. The study is considered to be particularly important in the context of the proposed new housing strategy for people with disabilities arising from the Disability Act 2005.
Recommendations from this report included:
-
Assessment of housing needs should include protocols for systematic consultation with individuals, and where appropriate, advocates to ensure that people’s wishes are understood and accommodated
-
Local authorities should give a person with a disability a housing services statement (akin to the service statement required for the health and education services in the Independent Needs Assessment required under Part 2 of the Disability Act 2005) setting out the type of housing and supports s/he requires and the timeline for their delivery
-
There should be substantially increased provision of housing supports for people with disabilities and more provision for different models of support at both personal and community infrastructural level
-
community based case-management approach should be applied to identify and meet the housing and related support needs of people with disabilities
-
Sufficient resources should be provided to ensure that strict enforcement of Part M of the Building Regulations following the introduction of new regulations and strengthening of enforcement mechanisms
----------------------------------------------------
External Research (Current)
Please do not hesitate to get in touch if you would like your research to be included here.
Caring for Children with ASD: A Qualitative Exploration of Family Adaptation, Coping and Resilience
Aoife Hickey, a postgraduate student on the MSc in Applied Psychology course in Trinity College, is conducting a research project on the adaptation of families with a child (or children) with ASDs, their coping resources and resilience. The project is under the supervision of Dr. Elizabeth Nixon.
Raising a child with a disability can be a life-changing experience. Regardless of the severity, families are confronted with unique challenges. This study is interested in how families come to cope with these challenges and adjust over time. In order to explore these questions, Aoife is seeking to recruit parents of a child (or children) with ASD aged 12 years or younger. Additionally, the participation of both the mother and father of the child is desired.
This research involves partaking in one in-depth interview with the researcher. This can take place in the participating family’s own home and is expected to last between 45 minutes and 120 minutes. The interview with include questions on the practical day-to-day aspects of caring for their child, the adaptation process of parents of children with ASD, the coping strategies they employ and the positive contributions of their child to their family’s life and well being.
While there will be no direct benefits to participating parents, studies like these can make an important contribution to increasing our understanding of adaptation and coping in families of children with ASD. Parents will not be offered any monetary or other rewards for their participation.
If you have any questions about the research study please feel free to contact Aoife or Dr. Elizabeth Nixon (contact information below).
Contact information for the research team:
Researcher: Ms. Aoife Hickey, Ãras an Phiarsaigh School of Psychology, Trinity College Dublin. Contact: [email protected]; 087 6399628
Research Supervisor: Dr. Elizabeth Nixon, Ãras an Phiarsaigh, School of Psychology, Trinity College Dublin. Contact: [email protected]; 01 8962867
---------------------------------------------------
TRACT project
Researchers in Trinity College Institute of Neuroscience are looking for participants for the TRACT project. This is an exciting brain imaging project in which brain structure and connectivity in individuals with Asperger syndrome or high functioning autism is being investigated. This project is funded by Molecular Medicine Ireland and has full ethical approval from Trinity College Department of Psychology and the Linn Dara Health Service Executive ethics committee. Participants will have two MRI scans in Trinity College Dublin. At present, we are recruiting right-handed males who have a diagnosis of Asperger syndrome/high functioning autism and are aged between 12 and 25.
TRACT information sheet download
----------------------------------------------------
----------------------------------------------------
For more information about these projects or
anything else that aspire is involved with, please
send an email to [email protected]
