navigating new diagnosis for my child and stimming

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This is long, and my apologies, but I think the background might be important for this one. I am hoping some folks might have some insight or advice!

My daughter is currently 18, but was diagnosed as autistic late, when she was 17 1/2 years old, which was about 1 year ago. Due to all the problems from her physical health the last few years, she is far behind in grade levels for schooling (she home schools, now), and is physically not able to work, so she stays with me at home.

The diagnosis of autism has been SO empowering for her, in so many ways. She reads blogs and articles about autism and ableism and autistic activism.

It saddens me to look back at her childhood and see so much that could have been different if we'd known then what we know now. Especially as she was hitting puberty, because the changes in her life were confusing, and upsetting, and frightening. She'd be told to NOT do something, but never would people realize that she often didn't know what they expected her TO do, and so she was basically in this sea of constant negative commentary about her, her choices, and her actions. And given very little that helped her in a positive way, or that helped her in a way that she could understand, at least. This happened from friends, from her sibling, from we parents, from other family members, heck, from freaking strangers. CONSTANT negative comments.

That's not to say the comments were always yelled, or extremely nasty (although I think some were). They might just be a 'please don't do that' from her friends, or the very frequent 'that's not appropriate,' from friends and family. But there was just so much of it, every single day, that I can only imagine it felt like a mountain of it on top of her. And trying to find ways to stop it never seemed to work well.

So, the reason I mention all this background is that it affects where she's at today. She is highly, highly sensitive to any even perceived criticism of anything about her or her behavior. She cannot accept that she can do anything wrong, or need to 'improve' anything - if it impacts how people feel about her, or whether or not she's being a 'good person' or whether or not her body is 'fine as it is' - because then she's a 'bad' person, or has a body that is in some way bad (ugly, fat, not inherently right or the way it should be).

And honestly, I can see why she feels this way; she's had a lot of crummy things happen to her over the years that revolve around these topics. But at the same time, she NEEDS to change some things, and I don't know how to help her with that. And I'm not even discussing behavior, now, but anything. As an example, she is supposed to start physical therapy exercises for one of her disorders, to keep it from getting worse, and the very IDEA of it makes her wildly upset, because if she needs to change her body like this, then that means that her body isn't okay the way it is, and that means life is horrible, basically.

I don't know what to do about this. I don't know how to help her find a way to process through all the pain and complete slams to self-esteem that people's constant negativity has brought to her. She has things she needs to learn (she is sure she will never learn some subjects - and maybe she won't, who knows - but she refuses to try at all because it is a sign that she's not good enough as she is NOW), and to do (the therapy, for example) that requires her to be able to find some way to tolerate at least some criticism or suggestions, even if they are very minor.

If anyone has any ideas or suggestions that would help, I would be very appreciative. I know for much of it, it might be nothing more than: it'll take a buttload of time because it took a lot of time to get this way in the first place. But we HAVE to find a way to get her to do her physical therapy, because it's making it so her mobility is nearly gone right now without it. And I am struggling to find a way to do this without causing such emotional distress that she completely falls apart, you know?


Stimming is another issue that has come up. She has read up on stimming, as have I, and frankly, if she wants to stim and it helps her in whatever way that is, then that's fine. I think some of these stims we, as parents, had her not do when she was younger, just as part of a 'teaching kids what's socially acceptable' kind of stuff, and wow do I feel crappy about that now, considering what I learn about it.

She has some stims that she's always done that she still does, but she's also exploring, I guess I'd call it, new stims. Or rather, feeling less self-conscious about doing things that maybe her friends or sibling might have teased her about but she always felt the urge to do, you know what i mean?

So right now, she likes to bounce on things when she's happy, and has some stim toys for when she's upset, and sometimes makes repetitive sounds when she's upset, too. No big. It's her body, and if it helps her, more power to her.

But there is one problem that's come up. In terms of stimming, she has read blogs posts about how stimming is a natural thing to do, like, say, smiling when someone is happy. Maybe an autistic gal might stim instead of smile, sometimes. And as a result, she has decided that all stimming, unless it is physically harming you or someone else, should be okay at all times and in all places.

And the thing is, that's not really true. Just as an example, for her, one stim when she is very, very upset, is getting a small speaker, playing very loud music behind her head so she can feel the vibration, and singing at the top of her lungs. Or if she cries, she ends up now having a stim that's basically adding in a very loud, siren-like wail to her crying (this is new, and not her typical way of crying, and she has mentioned it as a stim herself). This helps her control how upset she is, she has told me. I get that. I am fine with that in her room, or outside, or in the house sometimes, even.

But she wants to do this in places like, say, the car. When the sound is so loud it impacts everyone in the car to the point that we can't even think the noise is so loud. I literally almost crashed the car more than once when the loud sounds started (which is obviously a potential physical harm). And at home, if she wants to do this out in the living room, the doors and walls are thin enough in our house that it can't be blocked out that well if it's in a central location. Heck, I can't even wear ear plugs as I react to them. We are all impacted by such loud sounds. People can't think, can't function with this.

If she stimmed with hand flapping, or making certain noises, or gestures, or pacing, or whatever, that was really just her own business in her own bubble, I think everyone else can freaking back off and let her be her own person, letting her react to her own feelings in her own way. But when her stim has such a severe, negative impact on everyone else, that's not quite the same thing.

I don't know how to deal with this, honestly. I know she feels stimming is important, and I don't disagree. But she and the people around her also have to co-exist in a way we can all function. I have tried to talk with her about seeing if we could figure out something that would satisfy her need for that stim with maybe another stim that would work for both her and those around her, and she can't see that as even possible. Because right now, she sees no difference between someone telling someone else to stop hand flapping because 'it's weird' and someone asking her to stop making a very loud noise repetitively because it's making it impossible to think and function.

To her, compromise or asking for it to stop or saying 'it's weird,' it's all simply someone trying to control her and her stimming, which is 'wrong' and therefore the people making this request are all thoughtless and only support her autism when it's 'convenient.'

Anyone have any ideas how to deal with a situation like this? Do you see it the same way? If not, how do you see it?

I am still really new to this. Even though we've had a year, it's been a year with two other diagnoses along WITH the autism, which means I've been struggling all year to learn about all three, and not always succeeding in keeping up. I want to support my daughter, and understand as much as I can about how she experiences the world, and to help her navigate being IN the world, as much as I can.

So when something like this stimming comes up, I feel stuck. I worry that my own prejudices might blind me some to her point of view and her needs, but I also know that we can't go on like we are now, because it's impacting the entire family in a really bad way. And I want ALL of us to find a way to be happy with each other, you know?

So any, ANY, suggestions, ideas, thoughts on this, would be very welcome.

Thanks in advance for any comments you are willing to share!

Ronmom

Good luck. SJWs are incredibly manipulative and I don't know how you help people, like your daughter, that have been sucked in, or how you stop them getting even deeper. I don't know if they just have to find out for themselves or what.

What does she want from life? Has she talked to you about that?

How mature is she?

You know, it's often possible to take her arguments to their logical conclusion, as in saying "So if you do that, what do you think is going to happen?" "How can we find a solution that will make everybody happy?" "What are you going to have to do to achieve your goals?" "Are you not ready for any changes in your life? Do you think you will be in the future?"

I guess she has a lot of emotions to cycle through, but at some point reason has to step in.

Sounds like she could use a good therapist. There were a lot of misunderstandings between you guys in the past; it's hard to discuss things with you without emotion getting in the way.

I was diagnosed at age 55 and a big part of my reaction was relief and joy that what a lot of I had thought were character flaws was just naturally me was liberating and allowed me to be more myself. Finding out a lot my problems was a result of being wired differently and ableism was liberating also. So I do understand where she is coming from but she is overcompensating.

After being bullied and a lifetime of having entitled people imposing things on me I do not take kindly to somebody doing that to other people whether they are autistic or not. The irony is being very noisy is especially disturbing to a lot of autistic people because many of us are noise sensitive. Stimming is as natural for us as much as eating is for everybody. It is not like a rack of clothes in a store to be tried on until one fits.

Maybe she needs to join us and learn from our experiences.

You know, rereading this, I'm struck by how kind and understanding the original post is. You really do try to understand and empathise with your daughter, don't you?

I just wanted to add something about physical therapy; I had to do it after an injury, and I just ran away from it and decided to do excercises on my own, because I just couldn't handle the therapist's jugdmental attitude while working hard on something that was very difficult for me. Try to make sure you are not setting her up for failure. I think part of my problem has to do with always being physically weak and uncoordinated, and being told things like "You can do it". Being gullible, I believed them, as a child, and the shame of repeated failure really took a toll.

You have to make sure she doesn't have additional health issues that impact her ability to perform physically. In my case, vitamin D deficiency made me physically weak, and nobody picked up on that. They just thought I wasn't doing my exercises. Other deficiencies can create similar problems. Particularly if her diet is restricted this can be an issue. She really needs a thorough medical check up.

And I second joining WP; here you get to meet a wide spectrum of autistics, and read about a lot of different challenges and solutions. Exposure to differing opinions can only be good.

Your girl has a double whammy identity crisis; being autistic and being a teenager, which is an identity crisis in itself. And autistics mature late.

I don't agree that all stimming is appropriate in all places. Things that aren't intrusive to others, like flapping, bouncing, spinning, rocking, possibly even humming, should be fine and accepted in all places, but things that are an irritant, painful, or distracting to others, such as loud noises, or running around and invading others' space, should not be accepted without question.

You have the right to ask that she work on finding a way to replace the stims, or to only do them in locations where they aren't a bother to you or those around you. For the music one, she might benefit from a vibrating pillow to put her head on while listening to music as loud as she wants through her headphones. For the wailing, maybe find out what it is about that stim (the noise or the vocal cord vibration) that appeals to her. If it's the noise, maybe she can record herself doing it and add it to her phone/music player. If it's the vocal vibrations, maybe she can do it into a pillow or something that muffles the sound. Regardless, you shouldn't have to suffer needlessly just because she isn't willing to accommodate you.

Remind her, if she has sensory problems, that you try to respect those problems by not needlessly exposing her to them just because it's convenient to you, that you (I assume) go out of your way to ensure that she's comfortable in her environment. Tell her that it's perfectly reasonable for you to expect the same courtesy from her.

I've fallen into that trap too, and that might be a lot of her problem. I think it's usually a phase, but not a healthy one. It's a comfort to read about people who get you, but it can affect one's behavior, like how binge watching a TV show can cause kids to imitate the behavior of the characters.



Unfortunately, this happens to a lot of people who were diagnosed early on too.



Thinking in extreme black and white is common in people with autism. I've gone to talk therapy, and it's helped me to recognize when I'm jumping to conclusions, though it can be hard to think rationally when upset. I like to remember the fictional characters I relate to, how they have sometimes messed up big time but that doesn't make them bad people and a lot of them are fan favorites. I also sometimes think of noteable people who are notoriously imperfect but did a lot of good things.



Is there anyone she looks up to who has to do physical therapy for a similar issue?



Does she have any special interests or things she enjoys learning about? Maybe you could help her relate school subjects to things she's interested in.



You're not alone on this either! My mom did the same thing before my diagnosis (in third grade) and teachers continued to do it. I think Mom regrets it because she hasn't tried to stop even some of my more annoying (to her) stims since then.



It's not uncommon for autistic people to learn new stims as they get older and gain confidence.



Maybe you could teach her some less disruptive stims that could accomplish the same thing, like wearing bass-boosting headphones or abusing a stress ball. There's jewelry that's made for stimming as well, like rings that have a second ring on top of them that spins back and forth. It looks more professional and mature than the brightly colored plastic ones made for kids.



Does she have any sensory issues? Maybe you could relate the situation to her that way. Or give her a taste of her own medicine within reason, if you think she'd listen that way.



Sounds like she's reading too many of those articles. Maybe you could convince her to limit her time on the Internet for a while.


I think a lot of what your daughter is doing is her way of coping with this new information and thinking about what it means to her. Hopefully, she'll mellow out in time, when she can get some distance from all this information and think things through. She's lucky to have such a caring and empathetic mother.

I just wanted to say thank you everyone for your replies. It really helped! Sorry it took me a while to respond; I thought I already had and just realized I'd never posted it. Darn.

I appreciate all the feedback!

For some of the questions - re: vitamins and health, it's highly possible she has vitamin deficiencies, and has movement problems. Lots of health issues affecting all of these.

The stimming problem has come back tonight when we were having the same stimming issue, and I just feel so bad for how much this impacts her. She cannot seem to understand that noise impacts anyone else. It's not something she can see, and she has decided that it might impact autistic people, but it can't possibly impact neurotypical people. In part because I think the idea that she could be doing something that in any way negatively impacts someone else is wildly upsetting for her.

Re: therapy. We have had many therapists so far, including one this last year, but it has not been very helpful. I sit in the therapy with her - she has had some bad medical experiences that involved the personnel not listening to her and does not feel comfortable being alone with a medical professional now. And the therapists don't really seem to 'get' her. She will say something, and even the last one, who knew about the autism and said she worked often with autistic kids, would take what Rose said and assume that her reasons were common ones, as opposed to what they really were. Lots of misunderstandings between them, and not really much practical help (which is the story of all the therapy to date, unfortunately. And we don't really have enough money to choose whoever we want. But we're looking again.)

re: the idea of impacting other people - any ideas? I just struggle to help her understand that she IS having an impact on people around her, but without making her feel like I am saying she is a horrible bad person. Trying to let her know that she matters, that I love her, that I want her to feel comfortable to be herself and act in ways that make her happy, but that at the same time, I want that for the whole family, too. I want us all to be comfortable in ourselves and act in ways that make us happy. But to do that, we all sometimes may have to do things not quite how we would if we were totally alone. Because when we interact with each other, that means we can impact each other, too.

But right now, all she is registering is that she's being asked, for the five millionth time in her life, to 'be quiet.'


I appreciate the suggestion of figuring out what about the wailing appeals to her. I think it's the feel of it in her throat - that seems to be a big thing for her. But she says she hates the feeling of something soft against her face, like something she could scream into, so not sure how to deal with that. Darn.


Again, thank you so much. Any other ideas would be greatly welcomed, even if it's just for how it worked for YOU, for those late diagnosed, trying to deal with how you were treated when you were young, how you coped when you were exploring your diagnosis for the first time, anything!

And also, thank you for the kind words. I am trying to be compassionate, but feel often like I fail, honestly. The only good thing I can say, at least, is that the autism is likely from my side of the family. We have a long history of what we just thought of as 'quirky' relatives (when I read about how many autistic folks get called this, I have to cringe). My great grandmother was famous for it, and a few cousins, and the whole family, when this popped up in a child, just kind of knew and adjusted.

Didn't expect these relatives to 'conform' to everyone else, just accepted that they saw and experienced the world differently. That they might need some help with planning certain things, sometimes, or with frustration, or might react differently then we'd otherwise expect in a given situation (everyone's unique, obviously), so you just interacted with that in mind.

It meant that for my daughter, my own parents, if I brought up things like my daughter needing to chew on a chew toy past the age of 5, or being uncomfortable with strangers, my folks would just nod and go with it. Probably why they and her still get along now. My in-laws...they're more of the 'well you should fix her' mentality. We don't have much to do with them anymore.

Again, thank you very much for all your thoughtful replies. They've given me lots to think about. I hope my daughter can get on here one day and make some acquaintances (she's uncomfortable conversing online right now with people she doesn't know beforehand. Creeps her out. So it may be a while.)

Is it possible to explain to her that everybody hurts each other at times, that it's part of having relationships? And that the only thing you can do about it is talk about it and find solutions? I had to deal with someone who had a similar attitude. In the end, I think what helped change that attitude was the experience that having a few fights won't kill you, and me explaining that going through life without hurting someone is a highly unrealistic goal. Said person was neurotypical, your girl is probably a bit more sensitive. She probably needs tools for communication; for example learning how to ask questions.

It is possible that fixing some health problems may improve her mental state? When people are this emotionally sensitive, I suspect gastrointestinal issues, which are common among autistic people.

Your family sounds really nice!

Would covering your ears with your hands be considered offensive when your daughter is wailing? If not, it could act as a visual reminder that the noise is painful and disruptive to you.

If your daughter is confused by a lack of positive guidance (suggestions, as opposed to restrictions), perhaps you could offer (but not force upon her) behavioural models whom she could copy, and would help her understand 'normal' behaviours without telling her explicitly that she needs to change.

You seem to be supportive and attempting to understand your daughter and her behaviour. I don't really have more advice for you, but please continue to be supportive. My family is extremely unsupportive, and it causes me difficulties and is socially and emotionally damaging for me. I have been told by my mother that it's selfish of me to think that people should accept me the way I am. I am berated almost daily for being 'selfish', 'lazy', and 'heartless', or for 'just pretending to be stupid'. If your daughter is to learn that not all criticism is a personal attack, she must know that she is loved and accepted by at least her family.
Good luck.