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.
3 comments so far
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You may go ahead and publish my email,
my websites, anything I ever write you
I wish I’d realized I’d doubled some of my text and left spaces
in my website addresses. Its one in
the morning but I got going good
and did not want to delay.
I don’t even mind Nigerian scams.You
should read the tongue lashings I give
them! I’ve had them write back and
apologize.
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).
After extensive reading of this entire website and your story I feel such a similar family situation.. My dad has never said “i love you” but has shown in practical ways of strange support that he does. At 36 , I am embarking on unraveling my families dynamics but not searching for a “diagnosis” by any means.
My fathers negative constant response to anything, although by no means violent, quite the opposite, left me struggling as an extremely sensitive child. Dad was extremely well educated and chose to go to war (ww2) as did all of his brothers. He only ever spoke of his 7 years war- time in a positive sense, no horrific war stories here….. Perhaps complete dis-attatchment?
He was highly regarded intellect in his field of human relations management after the war,which to this day leaves me bewildered!
Perhaps without any emotion expectation he could manage the requirements of a corporation and as a fighter pilot , yet not meet the emotional needs of his family.
Dad was 50 when I was born. My mother was 20 years younger and was an adopted child with her new parents being an anglican vicar and his quite neurotic wife as a mother.
I take into consideration our generational gap, which is not the norm for parent /child relations I suppose of 50 years instead of say 20 to 30 years!
My father paced incessantly, never sat down, he drank only in moderation, unlike my mother who began to drink in her 30’s up until a cancer diagnosis in her 40’s. Apart from her own personal issues I believe that living with such an “un emotive ” man caused her to delve deeper into her own self worth issues.
Dad never took the ques of social boredom when speaking and just kept on at his subject.
He was completely bewildered and did not understand why she left! In his eyes he had provided and been a dutiful partner and parent.
My brother is extremely angry, psychotic and intense, has been since word dot. He is 2 years younger than I am. My father always fixed his mistakes and told me ” I had to not upset my brother”. My dad has doted on my brother has enabled and protected him to be socially unacceptable . His insistence on such routine things regarding my brother. dinner at certain times etc, leads to still compulsively putting toothpaste on my brother’s brush for him up until age 30!
As I grow, I now think( without the jealousy and envy and anger that consumed our teenage family relations!) that dad knew how disturbed my brother was and just tried to cover it all up.
But… his persecution of me and expectations of me were ridiculous and extreme in contrast of his non expectations of his son. My brother suffers from bi- polar and borderline schitzophrenia ( recently at age 30 diagnosed).
Perhaps just a father daughter / father son relationship difference, yet everyone that knows us sees the extreme deference in which we were delt with.
Such anger I felt as a teen woman living with them now seems to pail into significance as my dad has descended into the journey that is Alztheimer’s .
I see a man stripped to basics, the frustration at his normally highly accredited intellect now means nothing!
I forgive him and his generational war time ethics and modes of obvious generational lines of being.
My mother left him after 14 years and 2 children , yet they remained firm friends. She said she loved him yet could not live with him as he never displayed affection to her.
Obviously, there were her own issues of abandonment to deal with yet reading not just this site, friends comments on my youngest child & many other’s relating it : it is hard not to warrant a look at this subject of asperger’s
I have 2 amazing daughters. My eldest is incredible, frustrating, smart, socially savvy ,generally a hand-full , always questioning ,pushing and exactly as she should be.
My youngest , 5 is one out of the box! everyone who comes in contact with her for 5 minutes comments on how “different, special, unusual, nutty, crazy, frank, connected, weird, odd etc etc” she is.
A friend who has asperger’s kids and also a high school counsellor have commented that she is a “watch this space child”……………….
I adore her incredible insights and often lack of social norms, she is not violent or prone to tantrums, in fact the opposite.(perhaps like her grandad).
She has never had “normal social contact realms” in fact people comment she is like a cat, she comes to you when she wants to. She will ignore normal protocols of hello yet, slide up to an adult moments later with her latest bug…(her pie eyed interest) .
As a child she did not crawl til 11 months, walk til 16 months! Always content, ate slept more than usual, sniffed everything and everyone. Never a discontent moment (which is quite surreal and unusual). We had stairs to an upper story that an child would usually proceeded to want to explore, climb and generally drive their parents mad , yet she never wandered , no need for child locks, gates etc .
Her obsessions with nature have not abated and always she delights me with her observations. Other kids find her odd, yet she observes them and seems to “get” how they act but does not understand why. She interacts with adults intrinsically and often astounds us all with her knowledge of words and of the cuff, frank bizarre remarks.
5 y-olds are competitive and strutting their social prowess. Lola does not display these social norms and is very centered on dead relatives,{ some of whom she ha not met) Incredibly with much love, focused on animals, always first to see the moon or first star and the normal rhythms of nature.
As much as I idealize these traits, for they are things I am akin to, I see such an obvious difference within the spectrum of where here older sister was at at such points.
God knows, if any of this is related? Is it just a new term for connected beings? . Obviously aspberger back in the 40’s saw these emerging creative traits in children. Yet I am open to discussion on this, not foregoing that we can all be to precious at times. I need more convincing I suppose, yet obviously sense a connection and box ticking type criteria yearning to explain an apparant difference.
All children are amazing and insightful and candidly frank at times.
But………………..here I am ,after spending 2 hours researching this related topic to perhaps explain my incredible, mysterious ,gifted, insightful, forth-right, direct ,little loving calm soul..??????????????????????
All children are special and amazing and insightful, giving us much to remember and learn by…….. Perhaps a”diagnosis” is just a term for adults to live by…………Remember your own child within and perspecrive……xxxxxxxxx
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