Research and resources

Limerick autism group are currently partaking in a study in collaboration with the Bernal institute in the university of Limerick. The Bernal institute will be undertaking research in to links between autism, genetics and nutritional intake. This is supported by the University of Limerick and analog devices.

We would like parents to get involved with this research as I will help all autism organisations and services to support people with autism

To partake please visit www.cellular-neurobiology.ie/cellular-neurobiology/questionnaire.html

A new study is being carried out at NUI Galway to determine if the risk for Autism can be identified by analyzing ultrasound pregnancy scans. This may potentially lead to a reduced age of detection and earlier intervention.

Specifically, we are interested in studying the differences in brain size that occur prenatally in the womb. Some previous studies demonstrated that the brains of children with Autism are smaller at birth which may suggest that differences in brain maturation may be occurring during their development in the womb. There are also some birth complications that might be related to Autism which we intend to study.

Participation in this study involves giving us permission to view your ultrasound pregnancy scans that are stored in hospitals in Galway, Ballinasloe, Limerick, Sligo, Portlaoise or Cavan. We are also looking at collaborating with Waterford and the Coombe and Holles St. Hospitals in Dublin. All information would be confidential and anonymised so that your child’s records would not be identified.

If you would like to find out more and would like your scans to be included in this study, please contact Kamila at k.janik1@nuigalway.ie.    

Parental Experiences of Family-Centered Music Therapy with Children with Autism.

 If you are interested in taking part please read the information below and contact Katerina Cussen at 17073065@studentmail.ul.ie.

Katerina Cussen is a Music Therapy MA student in her final year of training at the Irish World Academy of Music and Dance (University of Limerick). As part of a Masters programme she is carrying out a research project on Parental Experiences of Family-Centered Music Therapy with Children with Autism.

Much evidence supports music therapy as an effective creative intervention for children on the autistic spectrum and their families. Music can be used to address non-musical goals such as making contact with others; bonding and forming healthy relationship; supporting routines in a creative way; and communication and self-expression. Currently, music therapy is not part of public health service in Ireland. Families can only access this service privately, at a cost. In addition to this, first hand experiences of those who undertake music therapy are largely anecdotal. As the modern health care model develops service user perspectives are becoming more and more important and valued.

Having worked musically with children with autism and their families (as well as being a mum of an aspie), she believes this project will contribute to opening new discussions and opportunities for the autistic community. The research project is also aimed at developing knowledge for music therapists for working with the autistic population.

She would like to interview parents of children who have a recognised diagnosis of autism and have an experience of music therapy about their experience of the music therapy process .

Please note:

The music therapist who carried out work with the child/family must be registered with the Institute of Creative Arts Therapists in Ireland (IACAT). A list of registered practitioners can be found on www.iacat.ie. University of Limerick does not support music therapy practices conducted by persons who are not suitably qualified.

If you would like more information or are interested in taking part, email 17073065@studentmail.ul.ie or phone Katerina Cussen on 086 3317253. Alternatively please ask your music therapist to contact her.

DSM-V Explained

As many of you will be aware that American Psychiatric Association (APA) recently announced the publication in May 2013 of their new diagnostic manual which will remove Aspergers Syndrome as an independently listed condition (as well as Pervasive Development Disorder – Not Otherwise Specified) and instead replace it with a sole diagnosis of Autistic Spectrum Disorder (ASD). This has generated a significant range of opinions and also worried many people who fear their diagnosis or that of a loved one will no longer be recognised. In this article, we try and address some of those concerns and attempt to clearly explain what DSM-V will really mean for those affected by Aspergers Syndrome in Ireland, now and in the future.

Why is Aspergers Syndrome being removed?

The decision was passed by a vote of the APA, on the basis that it made sense both clinically and in real-world terms to classify all types of conditions on the autistic spectrum as autism, as in the behavioral sense they are deeply connected though autism in all its forms affects each person in a different way. In particular, it was pointed out that the existence of a separate diagnosis for a condition which was also on the Autistic Spectrum has caused confusion and misdiagnosis in the past. One reprieve for Aspergers Syndrome was that while it will no longer remain as a diagnosis it can continue as a label for people who wish to describe the condition as such, though all diagnosis will now be under the new sole term. Under this term the classification system will include 3 levels for the varying levels of severity of the condition

Will the new criteria affect existing diagnosis

No, those currently  diagnosed should expect to remain diagnosed whether it is decided to continue to use the term “Aspergers” or “ASD”. In truth, many doctors are likely to continue to use the term for many years to come and those currently holding a diagnosis can rest assured that their condition will continue to be recognised and that their statutory entitlements should remain the same.

What about diagnosis rates, will people who would have met the AS criteria qualify for the new criteria

In truth this is a question which only time will answer. It was the intention of the APA that anyone likely to have been affected by what we now know as Aspergers Syndrome who does not meet the new criteria for ASD and a study by a leading architect of DSM-V, Dr. Catherine Lord, found that 91% in this bracket would continue to qualify automatically for the new ASD criteria and that the majority of the remaining 9% would quality with additional imput from doctors. This 9% includes those affected by Pervasive Development Disorder- Not Otherwise Specified which is also being removed from the manual, though it is hoped that those affected by PDD will instead quality for a diagnosis of Social Communication Disorder.

However, there have been other studies which indicate between 10-55% (its varies greatly!) of those who would currently meet an Aspergers Syndrome or PSS-NOS diagnosis would not meet the new ASD criteria. I think the vast array of percentages in it self shows the uncertainty and in truth we will have to wait and watch to see how doctors interpret the manual before we can truly pass judgement.

How will this affect the AS community

This is a question which arises again and again, as many people fear they will be viewed differently if seen as “autistic” instead of having AS as well as those who fear the unique culture and identity which has grown around the AS diagnosis may be affected.

While there are some who would argue that the “Aspergers-like” label which Doctors may continue to use when diagnosing ASD as well as they severity level system should dispel these fears, however others still see the removal of a condition which for several decades has had its own unique characteristics and research as a negative development which will reduce funding in research and affect public perception.

In truth, we must wait and see how things work out in practise and also remember that it is not without question that the diagnosis may be resurrected in a future manual. However it is the view of this website that during this important teething period that we continue to discuss developments in the forum so that we can keep tabs on how people are feeling and are being affected by the manual upon it implementation in May.

For further information please see the following websites (our sources for this information)

Official website of DSM-V

Information on Aspergers Syndrome Diagnosis and how it will be impacted by DSM-V

Official Website of the Autism Research Institute

USA News Health Article on AS & DSM-V