Predictors of Success Factors: A Phenomenological Pilot Study of Females with Asperger Syndrome Pilot Study (2013-2014)

In early 2014, Dr. Amanda Webster and I were involved in a Pilot Study entitled “Predictors of Success Factors: A Phenomenological Pilot Study of Females with Asperger Syndrome Pilot Study”

We wanted to first interview a small group of females diagnosed with Autism within Australia, with the exclusion criteria being that no participant was assessed or diagnosed by either Dr. Webster or myself. The goal was to then to interview a much larger group in a variety of other countries.

Brief project description

Details

There exists a great need to understand Asperger Syndrome/Autism from the point of view of the adult female, diagnosed with the condition. So far, research has mainly focused on the male presentation. This pilot project aims to give females with Autism a voice, through telling their lived experience/stories.

The primary outcome of this pilot study is to begin identifying internal and/or external factors or predictors that were crucial in leading females with Asperger Syndrome to achieve success in life. This project is designed to capture the meaning of several adult females of their lived experience of Autism. The outcome of this study will be achieved through interviewing adult females who have a formal diagnosis of Autism. Females will participate through the use of telling or sharing their story about living with Autism. The participants will describe their experiences of living as a female, with Autism, in writing, or spoken form. In particular, what helped or hindered them in their life journey, to date, in terms of having a successful life.

Information gathered will be used to develop early intervention recommendations, provide knowledge and information about Autism in adult females including: assessment and diagnosis, late diagnoses, benefits of earlier diagnoses, the need for and the barriers to accessing diagnosis and interventions/therapies, accessible and affordable  interventions.

Inclusion criteria: Must not be known to either researchers in a professional way, must have had a formal diagnosis prior to participating in the Pilot Study by a professional other than the researchers.

E3. Participants

Details The target participant group is adult females with a formal diagnosis of Autism (Asperger Syndrome), in Australia. Individuals within the target group will be invited to participate in interviews over a three month period (late September  to December, 2013). Advertisements will be placed on Facebook, in Australian Autism groups or organizations.

E4. Data collection

Details A phemenological inquiry method similar to that used by Moustakas (1994) to gather stories from adult women, will be utilised to gather information from females with Asperger Syndrome. The Griffith research team will introduce themselves and provide a general overview of the project. Individuals will be provided with information sheets about the project including discussion topics. Participants will also be informed that a sound recording will be made of the interviews for transcription purposes only. Time will be given for participants to discuss and ask questions about the information provided.  Participants will also be given the option of scheduling an individual session at a location of their choice or of telling their story in written form and submitting this by e-mail or post to the research team. To get at the essential meaning of the experience, abstracting out of themes will occur. This will continue until a full abstraction and presentation of themes essential to the participants lived experience. Only then can we be able to present the unique experience in a way that is understandable & recognizable to other adult females with Asperger Syndrome. Any individual differences will be noted (for e.g., a participant(s) may be gay or transgender, and this would represent individual differences within the group. We aim to glean the essences of being a participant with Autism.

E5. Informed consent

Details The interviews will only proceed if the participants provides their full and informed written consent. It will be made clear to all participants that they are welcome to remove themselves from the research process, at any time. It will also be made clear that all identifying information will be removed from the information collected before it is analysed and published. Publications will only occur with participant’s full and informed consent. If participants feel their information should not be used, we will organise for their information to be destroyed or returned to them.

E6. Communication of results / reporting

Details Following examination and analysis of transcripts, participants will be invited to follow-up meetings organised by the Griffith research team, to discuss the findings and obtain feedback.

From these meetings and/or interviews,

The information may also be published in peer-reviewed journals and in a book highlighting the stories presented.

POSSIBLE QUESTIONS INCLUDED:

1. Please tell me what your formal diagnosis is and any co-existing conditions.

2. Please tell me about what the process was like for you, in terms of getting your formal diagnosis.

3. Please tell me how your life has been since your formal diagnoses, as opposed to how your life was before you were diagnosed. Please be detailed in your description as possible.

4. Please tell me about any significant mentors or positive events in your life. How did they make a difference?

5. Please tell me about any significant negative people or negative events in your life. How did they make a difference or contribute to where you are now in your life? Please be detailed in your description.

6. Tell me how you function in a world full of Neurotypicals. Please provide a full description of your experience, including your thoughts, feelings, images, sensations, memories, along with a description of the situation in which your experience occurred.

7. What context or situations have typically affected or influenced your experience of Autism?

8. Tell me the affect that Autism has had on your lived experience?

9. What is the experience of living with Autism like?

10. How did the idea that you had Autism come about? What was the experience of the assessment process and the ultimate diagnosis like for you? What was it like telling others about it? How did you announce or tell others about Autism? How long time wise did it take you to accept the diagnosis? Or, had you always somehow just known, and receiving the diagnosis just solidified it for you?

11. In what way are the themes of males different from females?

12. Please describe, in detail, a situation or event in which you felt was significantly altered the course or outcome of your life, to date. Be as specific and detailed as possible.

13. How has your diagnosis altered or impacted your life? Positively? Negatively? Describe in detail any changes that occurred post-diagnosis.

14. Describe what have you experienced, in terms of a female adult, living with Asperger Syndrome?

15. Tell me about accessing intervention/therapy post-diagnosis.

Research Questions

How do the participants describe their experiences of living with Autism?

How do the participants understand and make sense of their experiences of Autism?

How are individual differences reflected in the participants accounts of their experiences of Autism, (late diagnosis)?

How do women with a late diagnosis of Autism describe their lived experiences of Autism?

What is the nature of the experience of being an adult female with a late diagnosis of Autism?

What is it about being female and having Autism versus being male with Autism?

References

Moustakas, C. (1994). Phenomenological research Methods. Thousand Oaks, CA: Sage

This Pilot Study has now concluded

To reach Tania, please contact her at tania@aspiengirl.com

For more information about female autism please visit:

http://www.aspiengirl.com

http://www.taniamarshall.com