How stories are collected
Research Methodology
Prospective members of ASpar are asked to fill in a questionaire, which includes some demographics, and the following open-ended questions.
1. What kinds of behaviours does your parent show that make you think they have AS?
2. How has the AS person affected you and your family?
3. What do you hope will be the benefit to you of joining our support group?
The narratives in this blog are drawn from the group members’ initial responses to these question. They are collected before members actually join the group, so the stories are not influenced by group decision.
Over the next couple of months, we hope to keep adding stories, as permissions come in from the authors. Pseudonyms are used throughout, and place names and other identifiers are changed to disguise family identities.
The “Categories” buttons will give you an idea of the demographic breakdowns of our membership.
Privacy
Unless our contributors choose to be identified, all identifying information has been altered to protect the privacy of the narrators and their families. Readers should assume that professions and names are always altered. Other omissions, changes and insertions, are marked in red. Every attempt is made to substitute data with a near equivalent so that the statistical categories still hold true.
READ MORE ABOUT THIS PROJECT by clicking on the ABOUT tab above.
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I am almost 50 years old and have only recently been able to identify my father’s symptoms as belonging to AS. He has never been formally diagnosed, but all our lives, my brother and I knew my dad was different. We just attributed the symptoms to “he’s just being dad.” We never knew any better.
As children, we were never good enough. Our self-esteem was so incredibly low that we would debase ourselves constantly. Dad would fly into rages in public places and we would sit there in stunned silence wondering what just happened. It was never his fault, it was always our fault or the fault whomever happened to get in his way. Many of his comments were inappropriate. He once asked my father-in-law if he got his coat from the Salvation Army Store. My father-in-law never spoke to him again.
We could never have a two-way conversation with him.
When I was in college, I went to him to tell him I got an “A” in my history class. He began immediately to talk about himself. All I wanted was for him to tell me he was proud of me. The rest of the time he rambled incessantly about his own experiences in high school and went off on tangents about himself. I never understood why he did that until recently.
Most recently, dad had major surgery. Up to that time, my mother who has Alzheimer’s Disease was living with him. He allowed her to sit on the porch by herself while he went to the store to get a newspaper. Of course, when he returned she was missing and the police were called and ultimately returned her. This did not only happen once, it happened five other times. He saw no need to keep her on her medication or to follow medical advice for her care.
When my dad had surgery and was hospitalized, my brother and I saw it as an opportunity to put my mom in a protected environment. Since we had Power of Attorney, we took over her care while dad was incapacitated. The problem was that when he returned home, he wanted to remove her from nursing care. Since then, we have had to play hardball with him. We now have a lawyer and are going to court to get guardianship of my mom. He has basically disowned us. We could not reason with him. He saw no need for anyone else to care for my mom. We could not believe he could not grasp the severity of her condition or acknowledge his past failures to care for her. It was as though he had tunnel vision; only seeing what he wanted and not being able to see what we were saying.
As it stands today, we are not on speaking terms. We have no animosity toward him because we now understand more fully what is happening. I hope that before he dies, we can somehow reconcile(he is 88 years old).