Over-enthusiastic about autism

[shysnail]

Hi all,

I have maybe an unusual situation with my mum when it comes to autism. When I was diagnosed as a child, she was incredibly enthusiastic about it. She bought a bunch of books (think Simon Baron-Cohen and similar) and has generally enjoyed the whole experience of my diagnosis.

This goes further, into her also believing she is autistic. I think this is incredibly unlikely, based on how she is (very sociable, never struggled with employment or education, very NT behaviour for the most part). This is further backed up by my brother being diagnosed with bipolar, and then she reckoned she had that, too (although she has since lost interest in this diagnosis). She's the kind of person who, if you have a cold, she immediately thinks she can feel one coming on too.

She also likes diagnosing other people with autism. Not to their face (as far as I know), but she will come and tell me that, for example, "So and so loves working on the railways. Typical ASD!"

She doesn't value my input about autism. She'll pretend to listen, but won't take it on board. I was telling her about Asperger's being knocked off the DSM and explaining why. She then went on to say that it was probably because people with Asperger's normally "get by", so it probably doesn't need to be diagnosed anymore.

Despite being annoying that she had completely ignored what I said, it goes to the deeper issue that she has these ideas about autism that she will say to me, the autistic person, without ever asking for my input. For instance, she has this narrative that women with autism grow out of it because women naturally have better social skills. She takes me as proof of that, despite what I feel, which is that I've carved a life for myself more suited to being autistic, not that things have objectively got any easier for me.

She takes ownership of my autism in a way that makes me feel really frustrated. She isn't interested in autism to the extent she will ask me what it's like to BE autistic, because Baron-Cohen has already told her and she's not open for new, contradicting information. She just likes being able to talk about it as if she were autistic as well as being the holder of all autism-related knowledge.

I guess this post is largely a rant, since it's hardly a new problem in my life. I am curious though if anyone has experienced anything even remotely similar, or if my mum is just a real odd duck?

 

[Autistamatic]

Your Mum is typical of a huge proportion of NT people who know a little about autism and even a few autistics who are set in their ways/views. The Internet is full of it. "I read a book once so I'm an expert" seems to be their mantra...

That's one of the reasons that educating people about who and what we are feels like such an uphill struggle a lot of the time

 

[Tom]

Yes, I can imagine that is immensely frustrating. I haven't met anyone exactly like your Mom, but have met others similar in how they handle information, and thought them stubborn, sometimes opinionated. There might be a bit of hypochondria there also.

 

[Bolletje]

I have a friend who bursts into tears every time I hug her because “people with autism don’t do touching”. Never mind that we hug every time we see each other, she won’t stop believing that Something Special has happened whenever we hug.

 

[BraidedPony]

There is also a lack of boundaries, your mom not able to distinguish between herself and her children. Something is off, but I can't explain it.
She really didn't absorb the information she read.

 

[Pats]

Ohhh, that would be more than just frustrating. There are people that take on every diagnosis they learn about. Many medical and psyche students do through that while in school. It's a psychosomatic thing - the mind is a powerful thing. Have you ever watched "Bandits" the movie with Billy Bob Thornton and Bruce Willis. It's hilarious - Billy Bob is convinced he has all the symptoms that Bruce tells him (making them up, of course). But I imagine they do seem real to the person experiencing it.

Of course, there is always a possibility that your mom could be on the spectrum. The you people see does not show the inward struggles and issues. You know your mom best - I'm just throwing it in there.

My sister that was so resistant to my having autism not says she may have it too. I'm not sure if shes serious or if she says it so I'll stop saying anything. So far her 2 reasons is that she is so good with Math and that she easily finds 4 leaf clovers. She travels with people she don't know and has no problem with it, she has a very active social life. She always loved working, and her students and had no problems with parent-teacher conferences and all. She never understood things I used to tell her I would experience - like living in a restrictive box. I could go on and on - she is nothing like me. I find it frustrating. Oh, but I also know she has not done any reading on the subject because anything I've sent her in the past she never read. And she still has friends she had in high school and she's 65 and lives in a different state that we grew up in. Anyhow. I do understand the frustration. And not much we can do about it.

 

[paloftoon]

As she is family and probably supports and truly cares about you, your only way out of this mess is to work on becoming an independent adult. Until then, all you can do is put up with this behavior and keep standing up for yourself firmly and politely as much as possible. Or, you can express your concerns in a presentation for an autism conference workshop as a panelist possibly as well if that is feasible.

 

[china autie]

Wow. My mother and father ignored my dx-- I found out from a cousin in my 40s-- without ever explaining why I was having the difficulties I was having. To be fair, the recommendation was institutionalization and Dad fought that.

Dad taught me stuff. Mom tortured me. [They were divorced].

I don't know if your mom is autistic or not. The bigger issue is that she is not listening to anything you have to say.

I learned from a book to say, "Oh, that's interesting" or "you've given me something to think about."

I second the idea of moving out when you can.

 

[Fino]

My mom is similar in that she has whacky ideas, expresses them in a similar manner, and dismisses all evidence or arguments to the contrary no matter how clear it may be, and if any serious refutation or complaint is made then she becomes enraged immediately, is vicious for a short time, then shuts down and won't speak until she's ready to pretend it never happened.

Now I don't argue and just accept her that way! Instead of me making her angry, I watch others do it.

 

[Pinkie B]

@shysnail , it's funny that you should make this post now because for the last few days I've been thinking about how some people make it their identity that they are autism champions.

You know how every now and then there will be this "true story" circulated around social media showing how some fearless good Samaritan totally shames the heartless bigots by demonstrating selfless kindness to some poor pooped on minority/child/disabled person?

I once read about how a "complete stranger" sat for hours comforting a "child with autism" who had begun wailing on an airplane while everyone else just got irritated and wished he'd shut up.

And I felt like...way to objectify the poor child! It's like autistic children are just a thing that bleeding hearts wave around to show how "woke" and nice and caring and better-than-you they are.

I think this story about your mom has the same flavor. It's like she's using your autism to define her identity as "The Mom of the Autistic Kid" and as such, she's trying to outdo all the other moms, possibly by waving your miraculous "recovery" around.

It sux to get treated that way and I'm sorry to hear that's what's happening with you. But *I* don't think your feelings are invalid! And I think that no matter how normal you look on the outside, you're probably still having every bit as rough of a time on the inside (just like me) because no matter how many one-off victories you have, there's still an entire world of we have no auto-pilot to navigate and that's just exhausting.

 

[Pinkie B]

It's hilarious - Billy Bob is convinced he has all the symptoms that Bruce tells him (making them up, of course). But I imagine they do seem real to the person experiencing it.

That's actually a thing! It's like the placebo effect in reverse. I don't remember what it's called, but you can give someone a pill and tell them it's full of e-bola and they'll get diarrhea even if it's just a sugar pill.

 

[shysnail]

Thanks for all the responses, it's really nice to be able to let off steam and hear what people reckon

@BraidedPony You've hit the nail on the head with the lack of boundaries. My mum definitely sees me as an extension of herself. She's quite emotionally manipulative though so if I ever bring up such a thing with her, I get told that it's because I don't want anything to do with her and I shouldn't worry because she won't ever contact me again. Sigh.

@Pats Thank you for sharing about your sister. She sounds similar to some of the stuff my mum does, like pointing to random things as "proof" of autism that are sometimes just bizarre. It is most frustrating. It's one thing if someone is considering an autism diagnosis because they're struggling, another if they're doing it almost as a way to silence actually autistic people in their lives because they're autistic too, so why would they need to hear from anyone else about autism?

@paloftoon I think it probably speaks to the lack of boundaries I have with my mother that you read it that I'm still living with her. I am an independent adult, she just wishes I wasn't

@china autie That's awful that your parents kept your diagnosis from you! That must have been shocking to find out. The not listening is definitely a big part of it, and one that is just a general feature of how my mum interacts with me.

@Pinkie B I really hate that dynamic in which non-disabled people are the heroes for treating disabled people like injured animals. The story of the kid on the plane is so demonstrative of it. Disabled people are just a plot device with which non-disabled people to prove what Good People they are.

 

[paloftoon]

Since you're an independent adult, if you aren't able to stand up for yourself in your own place, move out. Or, if it's not your own place, move out. If you can't afford to move out, save up and move out ASAP. Being in your own place becomes a part of your independence since your mother is holding you back with you living in the same space as her. You need to make a statement somehow. You deserve some privacy and not being constantly disrespected. Only you can do that.

 

[Pats]

I was thinking about this thread yesterday when I was remembering things from my past and times that I knew I was experiencing things that other people didn't, knowing I was different - like not being able to leave my comfort zone. Times I knew I was being weird but it'd be the only thing I knew to do. I remember through the years telling my sister about some of this stuff and she'd kind of just shrug it off and I knew she didn't understand it. I can't remember anything she ever told me about feeling different or anything so I'm tempted to ask her to tell me something she has experienced that made her feel different - instead of her just agreeing with me with a "yea, I do that sometimes" because when she does it, it isn't such a big deal. And THAT's where a lot the difference lies.