How to get to know if my aunt is autistic?
For some time I am curious if my aunt, Alina (name changed for privacy) is also autistic:
She is "mentally ret*d" (she got disability pension and lives with my grandma because of this). Her body language is really awkward. She always sits on one chair in corner of room, thats her favorite chair, noone else can sit there. She tries to participate in the family talks but can't do it (she says stuffs totally out of topic and her voice is very silent and got weird modulation) but she can hold logical conversation for a while if you talk directly to her. She tries her best to be social, she goes to the church and speaks to people but everyone considers her crazy. She hangs out with teenagers (she is 70 year old) and she seem to be oblivious to the fact they only make fun of her. Grandma always tells her to stay away from them but she won't listen. She is also obsessed with cleaning. As a child I was thinking she is my grandmas maid, not daughter.
My family was always comparing me to her. Before I got diagnosed with Asperger they were often saying "Don't act like Alina!" everytime I did something awkward. At first I didn't really know why they don't want me to be like her - she was always nice to me, everytime I visited her she was giving me sweets and money, taking me to forest to gather blueberries etc. - but soon I learned to consider it an insult. I realized what the "mentally ret*d" and "crazy" labels mean and I didn't want to be called such names as she was.
Anyway. Recently I started to "sniff around", looking for reasons why I ended up the way I am. The aunt seems like a strong trace.
I asked my parents but all they were able to tell me that aunt was like this since she was a small child, she is on disability pension, she was never married or anything and she worked just a few years - as a cleaning lady. She was living with my grandma her whole life, never moved out the childhood house.
Today I visited my grandma and the aunt to see if I can figure anything out myself (and to tell my grandma about Asperger, I got diagnosed recently, she still has no clue). But anxiety made me unable to do anything.
My dad, grandma and younger aunt were doing some small talk, me and Alina were sitting back and listening. I heard Alina saying something out of blue, she was trying to join the conversation. I wanted to join it too but I was busy thinking how I should make the conversation go my way. Should I just say "Grandma, I got diagnosed with Asperger, you know?" or maybe explore "Have you heard about Asperger before?" or maybe I should go straight to the autism thing? "Have you ever hear about autism?" or perhaps, "Grandma? Is aunt autistic by any chance?". Something told me the last idea would just be rude so I decided to not say anything and wait till I will be visiting grandma with my mom - she tends to say the Asperger stuff casually to anyone since I got diagnosed so she will be able to deal with it. Besides, I am not sure if they should know, they all call aunt "ret*d" and "crazy" and I still don't want to be called so. Mom will figure out their reaction better, she will decide if they should know or not.
Instead I started to watch Alina closely. She was sitting on her chair, her body position was awkward, very "closed up", arms close to body, hands together with knees, legs "glued" together, I sit like this sometimes when I am stressed. I also realized she looks like an elderly me, she got exactly the same nose, arms, she is same height and body build as me... She realized I am looking at her, she smiled to me and nod her head, I smiled back and looked somewhere else. After a while I got back to observing her. This time she got up and brought some cookies to the table. I thanked her but didn't touch the cookies, I got obsession with expire date and proper storage and the cookies apparently were stored incorrectly (chocolate melted). They would probably taste well and were not poisonous but my OCD didn't let me eat any.
She got back to her chair and I got back to staring at her. This time she tried to start a conversation with me, asking me why I don't eat the cookies "I am not hungry." - I answered politely and escaped the eye contact again. It repeated a few times. She couldn't get the polite forms of "I am not going to eat the cookies" and I knew my dad would make a fuss if I say honestly that I hate how they look.
Then aunt got up, went to another room and fixed a curtain there. I was about to laugh. Did I said "fixed"? Well, she tried to fix it but the curtain ended up just the same way it was before. She was thinking it is enough to push the curtain a little but the curtain was missing one of the clips so to really fix it she would need to get on a chair and put it back on the clip. Apparently she didn't realize that. She got away from the curtain as if she really fixed it and she went out to dark kitchen. I decided I am going to talk with her face to face, got up and followed her. I was sure she got out to the garden since the kitchen was so dark and the back door were open but soon I realized she is staying by a cupboard, looking for something. I went outside, acting as if I wanted to take some fresh air.
Then I heard her. She was staying on the other side of open door (I mean it, the door wing was between us) and talking to me. She was asking again why I didn't touch the cookies. I didn't want to tell her the real reason so I told her that I got my own cookies at home and I am not in mood for cookies at the moment. At the same time I was wondering "Why the hell won't she go to the garden? They can hear us when we stay in door like this". I made a next step outside and fortunately she got to the correct side of door. We could talk now.
- Aunt, you got a disability pension, right? - I asked.
- Yes.
- Whats the reason you have it?
- I am ill.
- I mean: Why you got it?
- They were dragging me to a lot of doctors.
- What I want to know is what exact diagnosis you have.
- It is 500 something... I don't remember...
- Might it be autism by any chance? Since I got diagnosed with Asperger recently and I wonder since it looks similar to the thing you got but terribly... I mean much... softer.
- A girl in church told me her friend got a baby and it is a baby girl. And where are your cousins (meaning: younger aunt daughters, living on 2nd floor of the house) by the way?
- Aunt, it is not what we were talking about.
- Should I call your cousins? Did you see them today? They won't even get down here to say "hi"...
- Aunt...
- And why didn't you eat the cookies?
- ... Well... We are going to go home soon, it is getting late.
I ended the conversation - realizing the logical part is over and she got back to her usual out of topic babling - and I went back to rest of family. They asked me where I was and I told them I went to get some fresh air because I got a headache (that was true, I got an sensory overload earlier today and was still sick because of it). Then I started to wonder how to tell my dad I want to go home... but somehow he got the message because he got up and said we are leaving.
Anyway. I still wonder how to get the knowledge about aunt diagnosis. I think my grandma would know anything but I am afraid to ask her. Even if she won't judge me its no way to talk with her because she is half-deaf and I would have to speak very loud for her to hear me. And then dad would definitely tell me I am being rude and "putting my nose in other peoples business". Besides. There is a chance grandma doesn't know. Aunt got the "mentally ret*d" diagnosis before 1960 so she could not have the "autism" label.
Any ideas? Or perhaps I should just give up?
Maybe your aunt would be willing to "take a quiz" like the Aspie Quiz with you so you "can compare scores." That might work especially if she likes puzzles and trivia and quizes, anyway.
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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)
The Aspergers diagnosis wasn't really used in America (I am assuming you're in the USA) until the late nineties, and it took a few years after that for doctors to realize that females could have it too. Your aunt may never have been diagnosed. She may not even know what Aspergers is.
Autism, according to ICD 9, is numbered 299.0
"500" is a lung disorder caused by working at a coal mine.
In ICD-8, created in 1965 when your aunt would have been diagnosed., "500" was enlarged tonsils and adenoids.
"500-something," unless there's some kind of Polish diagnosis list, is definitely wrong.
It seems as if it might be easier to ask your father than your grandmother. Your grandmother is from another generation--a generation which was much more prejudiced against mental disorders than the generations after them. People who were "mentally ret*d" back in the old days would have been seen as "disgraces of the family." They might have even been hidden from society, kept in a house constantly. I wonder if this happened to your aunt.
I could understand your curiosity, and your desire to help your aunt, and to feel a kinship with her.
I would think, unless there was a diagnosis sought recently, that your aunt was NOT diagnosed with autism at any time.
Thanks for the ideas.
I could make her take the quiz but the problem is they got no computer or Internet there. But perhaps I would do something about it. There is a weak gsm signal there and I can make my mobile phone a modem for laptop so it could work. But the aunt never used any computer before (they even still use the old, round phone. Can you imagine?), I doubt she would be able to do it. But I might try.
I live in Poland, not US.
She might get the number wrong. I was thinking it could be something like. 5.00 or 50.0 as well but I don't know how they evaluate disorders. Perhaps she got more than just one disorder and she got the disability pension for something else? I mean - a lung problem wouldn't rather cause this... Well, perhaps she would be like this if she couldn't breath for too long and her brain got damaged because of lung problems. But even then I doubt it is the case. She looks pretty healthy, at least for her age. She is very slim but it is common in our family, everyone is like this. She does all psychical works around the house, she takes care of the coal heating stove in the winter, she walks a lot... It doesn't look like she is sick any other way than mentally/neurologically.
I already asked my father and he doesn't seem to know anything. He was born when aunt was 20 years old so he was not yet born or still a child when she was diagnosed. In fact he was raised by her as if she was his mother because grandma was working at the time and aunt was house sitting. To be honest I wonder if it is impossible for her to be illegitimate biological mother of my father and perhaps his younger sister too. She was 20 and 25 year old when they were born, grandma was 38 and 43 then. Alina is naive and spends a lot of time with people so she could have been "used", especially since she must have been nice looking when she was young.
Anyway, I would rather talk to my grandma than anyone else from the family. From what I see grandma is pretty accepting. She comes to conclusions but she seems tolerant. At least now, when she got a TV. I'm not sure how she was before TV era.
I remember her suggesting me to get a sex change surgery if I don't want to be a woman anymore when I started to wear boy only clothes as a teenage. She was not joking, "she seen it in TV so it is OK".
She was also pretty understanding when I told her I don't believe in God anymore. She told me that God exist and I should believe in him but if I decide not to it is my choice, even if in her opinion it is a wrong decision. So no, she is not much of a problem.
I am more afraid of the rest of family reaction. Especially my father. He is paranoid about "what people say". He makes a fuss whenever I do something wrong in his family presence. Apparently he wants to be considered "successful, with a perfect family", and I am his "disgrace".

