Hoping to get some opinions on my sister's odd ideas

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My 19-year-old sister and my dad both have autism. My mom thinks that she has it, too, but she's schizophrenic, so who knows? (I don't have it, but I'm also not neurotypical because I have bipolar disorder and ADHD.) The school psychologist intentionally misdiagnosed my sister with PDD-NOS when she was seven so they could get grants. She was diagnosed with Asperger's when she was 12. When my sister was diagnosed, the psychologist told my dad that he has it, too, but he wasn't officially diagnosed until recently. My sister identifies as autistic. And she has some ideas about autism that seem pretty odd. She's into the autism rights movement (which I supported when I first heard about it, but now I'm not sure what to think, thanks to my sister), but she insists that it's called the autism acceptance movement and Wikipedia is wrong. I actually can't remember everything we discussed, and somehow all the text messages she and I exchanged before January of this year got deleted, so I can't even look it up. Maybe I'll remember more as I write about what I do remember. I do recall that there were some things she said that didn't really sound right to me and weren't mentioned in the Wikipedia article about the autism rights movement, so I asked her to send me links to some autism rights movement forums so I could ask about it. She said, "They're aren't any. It is not our way." She then proceeded to send me links to some ARM blogs on Tumblr. I suppose she might say that you people are only on forums because people are trying to make you act neurotypical, but my sister was actually using forums herself at a VERY young age. She was lying about her age and posting on the forums on Neopets when she was only seven or eight.

It was back in spring of 2016 that I started to question the things she said a lot more. She had sent me a text telling me to wear orange instead of blue during Autism Awareness Month, and I suggested that we make and sell our own shirts and stuff for Autism Awareness Month according to the perspectives of ARM. I sent her the ideas I came up with for things to print on T-shirts. Some of them were combating those ransom note ads from 2007 (I didn't realize just how long ago that was). I came up with versions for both autistic people and their parents, but the ones for parents to wear sound better, so here they are:

"Autism DOES NOT have my son. My son CAN care for himself. My son CAN interact socially. His future is only beginning."

"Asperger's syndrome DOES NOT have my son. My son CAN socially interact. My son WILL NOT live a life of complete isolation. It's all up to him."

(Note that these are rough drafts. They would've been revised to sound better.) You know what my sister had to say? She said they were pretty good but not all people with autism want to act neurotypical. So she thinks that there are autistic people who don't care about being able to take care of themselves and have absolutely zero interest in ever engaging in any social interaction whatsoever and that this is completely normal. Now, I know that Wikipedia isn't always accurate, but that contradicts some pretty major things in that page about ARM. I don't think it specifically covers taking care of oneself, but that's probably because it kind of goes without saying that you need to be able to take care of yourself. And it says that the autistic behaviors that therapy tries to remove are attempts to communicate, and it says that there should be social networks and events that allow autistic people to socialize on their own terms. She also thinks that "allistic" is the actual term for people who aren't autistic.

And here's where things really get weird. I don't remember exactly how this conversation came up, but I said something about her being high-functioning, and she said that she's not. I explained that low-functioning means intellectually disabled (according to a standard IQ test) and high-functioning means normal intelligence, which means that she's high-functioning because she's really smart. She insisted that those terms refer to behavior, not intelligence. She then said that she knows someone quite well who thrashes and screams and flaps her hands all the time and a bunch of other very disruptive (no offense) things that some people with autism do and asked if I would consider that person high-functioning. I asked if this person has ever taken a standard IQ test, and she said, "No, but you're the one who keeps saying that this person is so smart. That person is me." I told her that she wasn't always like that (I don't see her often anymore because I came to live with our grandparents five years ago), but she insisted that she's always been like that. She claims that she even goes "completely non-verbal" some days. Obviously she has no idea how this works if she thinks that being non-verbal is something that comes and goes. If she really does have days where she doesn't talk at all, that's probably due to psychological trauma because she was abused by our mom and the special education program. (IF YOU HAVE A CHILD WHO NEEDS SPECIAL EDUCATION, STAY AWAY FROM THE BLUE VALLEY SCHOOL DISTRICT AT ALL COSTS.)

So. Opinions? She's just plain wrong about a lot of these things, right?

She's not wrong.

I'm very confused. Autism Acceptance is a thing, but I'm not sure why she wants to wear orange in April. I thought it was #Redinstead if you didn't support the LIUB movement by Autism Speaks. Allistic and neurotypical are interchangeable (Yes, allistic is a real term). Some autistic people are unable to speak when under stress or overload, so being non verbal can actually come and go. That being said, I wouldn't class somebody as "low-functioning" until I met them or they have been diagnosed with ASD level 2-3. There are also people with so called "low-functioning" autism who are very intelligent, like Carly Fleischmann. Low-functioning is just a label, not a diagnosis. I could be completely wrong though, since I am very baffled as to what you are asking.

I agree with a lot that she has to say.

Yeah, same here. I'm very confused as to why what she says is "wrong."

I go completely non-verbal some days.
I suppose I'm wrong too?

High functioning and low functioning does not describe intelligence, but the amount of deviation from "normal" functioning.

She thought people should wear orange because it's the opposite of blue. She doesn't think that allistic and neurotypical are interchangeable. She thinks that allistic means someone who isn't autistic, neurotypical or not. People with ADHD aren't considered neurotypical, right?
My sister does not do the things that she described (other than maybe the part about going completely nonverbal), or at least she didn't for the first 14 years of her life. Our dad wouldn't have spent years insisting that she's not disabled if she actually did those things.
I'm asking for opinions on my sister's beliefs. I figured this would probably be the best place to ask. Sorry if that wasn't clear.


I didn't say that I thought that EVERYTHING she said was wrong. She was saying things that contradicted things I'd read elsewhere, and she was saying things about herself that I'm sure are wrong because I know her and I thought maybe she'd been reading confused things online. And she is very confused about other topics, which leads me to doubt unusual things that she says. (An example of a topic that she'd very confused about is that she thinks that Trump wants to torture and kill gay people. My dad says that she "has chosen to listen to crazies online instead of paying attention to the real world around her.") I'm gonna go die of embarrassment now. (Not literally.) Sorry for wasting everyone's time.

^ you're not wasting our time.
It's nice that you're concerned about your sister.
True, you can't believe everything you read on the internet.
But you also seem to be negating some of her personal experience of autism.

Well, after she said all that stuff about her behavior, I forwarded the text to our dad because she really didn't do the things she described, and he said that the message was full of half-truths designed to confuse and manipulate me. This was actually a pretty important conversation. When I was still living with him, our dad was a pretty awful dad and didn't seem to care about my mental health issues, so when my sister, Christine, started telling me about how she has social anxiety disorder and our dad wasn't doing anything, I believed her. I told our dad that she needed counseling, and he said that she wasn't at a point where she would do anything a counselor said. Then later, Christine said that she had actually ASKED our dad to take her to counseling and he'd said no. She said that our dad thought that her problems would just go away if she was removed from what caused them in the first place (which was school). But during that important conversation I had with my dad, I learned a lot about what's really been going on with him. Turns out his sense of normalcy was all messed up from living with my mom (who refuses to get help for her schizophrenia) for 15 years. He's getting his sense of normalcy back and he's trying to "get the right kind of help for once" for Christine. (She did see a counselor because I convinced her to tell her priest, but it was a total disaster. The counselor didn't understand her and told her that nobody should tell her what to do. So she thought that it was okay to just ignore what people tell her and always do what she wants even if it harms others.) He also has a porn addiction and has been in recovery for a year now, and the addiction was why he was such a bad dad. And we had a conversation that I can't talk about because it's very personal, and now I trust him. I wish I could remember all the behaviors my sister described that she claims she's always done when she really truly didn't for at least the first 14 years of her life. MAYBE the part about going completely nonverbal is true, but not the other stuff. My dad would know about it. The school would've told him or he would've observed it himself.

Yikes! Looks like your dad's got more problems than your sister...


One thing that I struggle with is that, while I can basically act neurotypical (although people do tend to think I have some quirks even then), social situations tend to be either stressful or boring. Interacting more with people tends to lead to more social situations, which, once again, will be either stressful or boring.

Do you think that maybe some of the stuff your sister said about "Not all autistic people want to act neurotypical" comes from something like that?

Personally, I learned to repress a lot of my behaviours because I knew they were socially unacceptable and made me look like a bit of a freak.
It's quite destructive though, because then you have no outlet.
The behaviours are, to a large degree, calming behaviours.
In recent years I've allowed myself to exhibit more of the behaviours and risk looking more autistic because it is actually far better for my mental health.
I wonder if you sister feels the same, or has done something similar?

She may well remember it that way. She may be hyper-vigilant about what she does now and that can replace memories of the past. The more you learn about who you are, the more you are aware of what you do. You can then question "Have I always done this?".

I know my memory is much more focused on the negative of my past and, thus, it seems to be more of what my past was about. My own view of my past can distort what it was actually like. This may or may not be related to the autism, and may be another aspect of my mental makeup. A disruptive childhood, and having parents with mental illness of their own, can have a big influence how we remember it. The details of the past are less important than the supportiveness in dealing with the present. Having the support of someone she feels comfortable with is something that cannot be overstated. If she asks, simply say you don't remember as opposed to saying she's wrong.

Everything your sister says is true and that is how lot of autistic people feel and some also don't want to get better or act normal and being nonverbal can come and go. Some autistic people go non verbal when very stressed or anxious or when they have a sensory overload or get very upset. Also I don't know her so I don't know if she is exaggerating or creating false memories in her head about her symptoms but for me I remember things in my childhood my mom might deny I did. It's possible she might have repressed her behavior as a child because she knew it was not something you do in public because no one else did it and she only did it when alone. Also did you grow up with her?

I do agree with telling her you don't remember her ever doing those things she says she does. That makes it sound more valid and not invalidating her experience.

Also I had a bad counselor too. He didn't do a good job explaining things to me so when he told me I didn't need to follow all the rules and it was called being flexible, I started to get defiant and break rules and not listen because I was being flexible. He probably meant not all rules are meant to be followed and they are only there as a guideline like seeing signs in super markets above check out counters that say "15 items or less" and it doesn't meant you need to have 15 items because of you are a little above, that is okay, they just don't want someone coming to that lane with 50 items. So they need to put a low number in so people know it's for people with some items so they are not wondering "what is some items?" "Is ten items too much?" This was very confusing for me as a high schooler so he shouldn't have said anything about it at all. Plus he would use sarcasm or do jokes and I would take them seriously.

Hmm, this makes more sense than my dad's explanation... But I can't be there to support her. She lives in Kansas and I live in Arizona. And she wouldn't ask me anyway. Besides, we don't get along at all in person. She once told a social worker that we're "mortal enemies." (We're not. Either she didn't understand what a mortal enemy is, or she didn't understand that you shouldn't exaggerate like that when someone from the CPS is interviewing you. Or maybe it was a little of both. That was seven years ago, but we still don't get along.) Sometimes she's really nasty to people. One time, she told me that everything I do is wrong, even though thinking that everything I did was wrong was what led to me becoming severely depressed and attempting suicide so many times I lost count. And I'm actually dealing with major problems of my own right now. It's not nearly as bad as it used to be, but it's so bad that a close friend of mine thinks I should go inpatient.


We grew up together. She's only a year younger than me. And we were home schooled until she was seven and I was eight. Normally that doesn't lead to social isolation because there are home school support groups, but our mom made all the other home schoolers hate her, so we didn't really interact with other kids that much. But believe me. If she was repressing those behaviors because she knew they weren't socially acceptable, she wouldn't have been doing many of the other things she did. The reason she was in special education was because of her behavioral issues. A few months after we started going to school, she chased me and tackled me at recess, and I was screaming the whole time. I heard that her teacher actually quit after that year. She once was lying on the floor in the school hallway mumbling about Neopets. She was still biting people even after a year of going to school. One time she bit this boy at Kindercare when he didn't even do anything wrong. Or maybe he did do something wrong but he didn't get in trouble because he'd already been bitten by an eight-year-old. I don't remember. I was nine. One time when she was 11 or 12, our dad talked to her about needing to stop being so extremely different from others. He said that he was a little bit out there and I was a little more out there than him but Christine was WAY out there. She didn't care. Believe me. She wasn't concerned about behaving in a way that's socially acceptable.

What things?



Why did she have them? For me it was because of anxiety. In 6th grade it was because I was being picked on and 7th grade because I thought I was being picked on. Of course my mom says I didn't have behavior in 6th grade and then she did knowledge it but had it in air quotes and said I had anxiety so of course I had a behavior.

As for her other behavior you listed, I don't know. Are you sure she has autism? You say she was misdiagnosed with PDD-NOS and but you say in your OP she has autism and you are saying she didn't do those autism things she says she did.

The only thing would disagree with is the label of low function. It takes a IQ of under 60 to qualify. Might I suggest that she is well over that thresh hold.