Could use some answers from aspie experts about my spectrummy kid

[chillimom]

Hi! I am mother to an amazing and brilliant 5-year-old girl who is not dx with an asd, but probably falls somewhere on the aspie end of the spectrum.

My daughter is very bright, likely gifted. She started talking at 7 months, has always been 1-2 years ahead for speech & language. She's ahead in other cognitive areas too, loves numbers (self-taught how to add, subtract, and multiply), elaborate pretend play, fabulous imagination, amazing memory for facts.

She has significant spd, which caused some physical delays as a baby (she's since outgrown them). She's a super-sensitive kid and a deep thinker - she definitely lives in her own head a lot and I don't always know what's bothering her as she's innately private about her thoughts and worries.

We haven't pursued any sort of diagnosis beyond the spd as, so far, there's no impairment. Her brain works a little differently from her peers, but so far, that difference isn't a disability, iykwim.

One thing I'd love some input about is her stimming. She's had several tics or stims over the past year. I was inclined to call them tics, as she seems unable to control them. A really persistent one was throat clearing, and even when offered a huge motivator to control it briefly ($5 if you can not do it for 5 minutes), she was unable (I did still end up giving her the $ for trying). The fact that she couldn't stop, and even did it in her sleep sometimes, made me think tic. Her Dr was a joke - said she has postnasal drip and tried scaring her into stopping by saying she was going to damage her throat. Anyway, that one eventually faded, but the new one is an echolalic muttering that she seems unaware of. When she's watching tv, or if I'm reading to her, she will quietly mutter under her breath what you're saying half a second after you're saying it. When I've asked her to repeat herself, she says she didn't say anything. Yesterday, we had an argument about it: I was doing her nails for her as she watched TV, and she was muttering an echo of the show. There were definite clear words in it. I asked her what that was about, and she denied doing it, said she was just making a moaning noise, because she feels like she needs to. I said it was fine that she's echoing, but to please not lie and say she wasn't. She was adamant, I was adamant. It was frustrating for me, as lying has been a real issue lately (she lies about the silliest things for reasons I can't understand), and I even gave her the out of "maybe you didn't realize you were doing it?", but she was insistent that she did NOT say any words. Finally, she started bawling and said she was embarrassed.

I know I handled this badly, I did NOT want her to feel ashamed or like she was doing something wrong.

I *do* want to understand why she's doing this echoing thing, and if she knows she's doing it or if it's completely unconscious.

I worry about teasing from classmates I was really bullied in elementary school and she is such a little mini-me I'm worried she will be too.

Would love ideas on how to talk to her about this too. She is horrified at the idea of being different, was very upset when she first realized she has spd (sobbing "I don't want to be different, I want to be like everybody else"), although that's gotten better with lots of pointing out how her differences make her great, and how we are all different. Autism is an extra-big trigger for her - her older brother (adopted) is autistic and there's a lot of trauma there. He doesn't live at home anymore because it was miserable for everyone, and he was/is mean to her. She has a friend who has HFA and when her dad recently mentioned her friend was autistic, my daughter EXPLODED. "No he's not!" "Don't say that about him", etc. Caught us by surprise as she has positive people with autism in her life too (we used to provide respite for a young man with autism, and currently do respite with two boys with Fragile X who she likes).

Sorry it's so long!

 

[Ylva]

This is not an accusation. More of a warning, perhaps: You can't tell her her brother is mean because he is autistic. That is simply not true. He can be mean because he is jealous, or petty, or a mean person; but not because he is autistic.

If she is that smart she is not going to miss the implications.

I think bullying is awful, but I don't think there's any point in bending over backwards to avoid it. You won't avoid it, you'll just teach your bullies that they can control you with implied threats, and then you will compulsively tell yourself off for not being like they "want" you to all the time.

Echolalia – while I don't remember being told I repeated words, I was often informed I was humming, throughout my teens. It was entirely unconscious, assuming it was true…
I think it's either stimming to deal with stress, an aid to processing information (words for her, perhaps), or in some cases a way to keep my eardrums from vibrating like crazy. All three are compatible with my experience; the last one is probably irrelevant to your daughter, but I included it just in case.

 

[Naturalist]

Your daughter sounds like me at 5-7 years old. I read very early (including the dictionary...loved the dictionary!) and had a very high vocabulary. Especially liked words with interesting sounds and spellings. My favorite numbers all were prime or had square roots, even before I was aware of what a square root or prime number was.

I had a similar tic, purring deep in my throat like a cat. I did that for a long time. Echolalia didn't last long with me because it made my mother really angry, and when she got angry it scared me. (Unless she was in a playful mood, then she would echo me too. And that made ME angry! I think it was embarrassing because I hadn't been consciously aware that I was saying anything aloud.)

I got an abundance of mixed messages growing up, about what was acceptable behavior and what wasn't. Still confused. Whatever you do as a parent, try to be consistent in your reactions and your standards.

On the topic of mixed messages: it is very understandable that you would not want your daughter to experience teasing or bullying at school, and that you would try to teach her behavior that will help to prevent her from standing out as a target. Yet at the same time, you seem to wish to introduce to her the idea that she may be on the autism spectrum. At her age, in her mind, this may equate to you saying that she is different, and wanting her not to be. One of the mixed messages that still affects me is the "It's okay to be different or unique, as long as you make an effort to behave like everyone else" conundrum. I can't "be myself" if I have to be ever focused on what to do next in every social situation.

I am not saying you should not teach her the expected norms where behavior is concerned; you absolutely SHOULD teach these things, since she will be even less likely to learn on her own if she is anywhere on the spectrum of ASD. But she may be too young to be told that she is different, especially if she has a desire to be "normal" (whatever that is!). Autism is too complex for most adults to understand, and if she has had a negative experience with that word in the past, it would be better to help her address some of her symptoms rather than trying to get her to identify with the whole condition. You are certainly making good steps by offering her positive relationships with people on the spectrum, and since she is observant she may eventually identify with them on her own. For young people with ASD, black-and-white thinking really prevails, so the subtle areas suggested by the "spectrum" concept are not likely to make sense to her--she'll have to grow into that understanding more gradually.

Also, do remember that many very bright children have ASD-like traits as children but eventually outgrow most or all of them as adults. Whereas ASD is regarded as a stable lifelong condition; it never really disappears (even though it may become less outwardly noticeable) as one grows up.

 

[AsheSkyler]

Since she's just 5 I wouldn't worry about long-term repercussions of avoiding saying "autistic" around her. She's young and still has a LOT emotional stability to both develop naturally and emotionally. Give her a few more years and she shouldn't react as strongly to the thought of her friends having autism since some of the hurt should dull a bit if her older brother leaves her alone during then.

Might I suggest looking into Tourettes? Sometimes Tourettes and Autism like to be comorbids of each other. As I understand, the difference between stims and tics is that one is voluntary and one is involuntary. It might be Tourettes, it might be Autism, it might be something else, it could be just the SPD and sensory seeking.

 

[chillimom]

Thank you SO much for the replies!

To clarify, I absolutely do not say her brother is mean because he's autistic - I don't even *think* that. He behaves meanly because he has complex mental health issues and a trauma background, including attachment disorder. We adopted him from foster care and he's been through a ton.

I'm pretty sure her idea around autism being responsible for his meanness towards her comes from a conversation we had on her 3rd birthday. He'd been over, he'd been really unkind to her as he typically is. When it was time to leave, she asked him for a hug. He not only refused, but escalated, shouting at her. When he left, she got very quiet (as she does when she's upset) and said "I think he doesn't like me". This led into a talk about how he doesn't like anyone, it's not just her, and that he does love her, but because of his autism it's very hard for him to understand and think about how other people feel.

So anyway, I think from that she deduced autism=mean/doesn't like me. It just surprised me because, as I said, we had a young man in our home all the time with autism who she DID like - she realized the autism was why he had difficulty speaking. And she really enjoys the boys we take care of, who both have Fragile X and present as autistic.

As for getting her to behave typically, I definitely don't. Her dad struggles more with that, the vocal stimming/tics really bother him. He feels it's behavioural and defiant, I disagree. In regards to teasing, I know kids tease about all sorts of things. My thought is to build up her confidence so that if a kid comments on it, she can be comfortable replying "oh that? that's nothing, helps me concentrate" (or something similar). I just feel like I need to understand the behaviour and why she does it in order to teach her to advocate for herself if that makes sense.

Maybe I'm overthinking it?

She's had two days of school so far, working towards her first full day Wednesday, and it's going really well so far

 

[Kari Suttle]

One thing I'd love some input about is her stimming. She's had several tics or stims over the past year. I was inclined to call them tics, as she seems unable to control them.

and I even gave her the out of "maybe you didn't realize you were doing it?", but she was insistent that she did NOT say any words. Finally, she started bawling and said she was embarrassed.

I *do* want to understand why she's doing this echoing thing, and if she knows she's doing it or if it's completely unconscious.

To my understanding (and mostly personal experience) stimming is more of a need, a compulsion. I do it a lot at work when I'm uncomfortable - i work as a cashier, i'm in college. I only ever stim by repetitively twirling a pen or pencil or piece of jewelry around in my hand, that's the only type of stim i've ever had. No ones ever said anything about it though cause it just looks like fidgetting but its not fidgetting.

I've never had echolalia though, and that's what it sounds like your daughter could be doing with the echoing thing. I would google the term and see what you think about it. But so far as stims - and i would think echolalia - i wouldn't try to suppress it. It doesn't do her any harm, it just annoys those around her and that's the only reason its a problem. Its not something she can probably control, either. To a point it is unconscious, though ive noticed as i researched autism and stimming myself i'm more aware of mine.

But can i be honest for a moment? Why was her 'lying' about echoing the tv show even a fight to begin with? I get that you thought she was lying and lying isn't something you want to allow, but to me it just seems like something i wouldn't pick to fight about. Get to the bottom of the muttering, yes, but argue, no.

 

[Nisk]

My Stimming: 101
Why do I stim. I've never really thought about it, until now. I stim as an outward way to express an inward feeling. If I'm anxious I may rock a tiny bit back and forth. If I'm nervous I may start to rotate my hand cracking my wrist. If I'm content I'll usually start humming to myself or if I'm with people I'll sing in my head and chatter me teeth quietly to the song I'm hearing. Can I control these, yes to a degree. I can usually replace one stim with another over time. It would be like telling a NT not to smile when their happy or not to cry when there sad. I'm not an outwardly emotional person but if someone were to watch my stims over time they'd get a better understanding of what's going on in my head.

Maybe try asking her next time she's echoing, what's going on in her head (not so much how she's feeling). It could be a case she's echo when she's relaxed and happy.
You could also try substituting stims for something less noticeable, as someone who didn't know they had aspergers until later in life I substituted the more outwards stims for less noticeable ones. Tapping my finger on my chin instead of spitting for example.

 

[chillimom]

Why was her 'lying' about echoing the tv show even a fight to begin with? I get that you thought she was lying and lying isn't something you want to allow, but to me it just seems like something i wouldn't pick to fight about. Get to the bottom of the muttering, yes, but argue, no.

Ugh, I know I think I didn't drop it because I didn't get why she was lying about it. I still don't understand why. And she's been lying a ton lately about things where I don't see the motivation. I think she's experimenting with the fact that she *can* lie, that she's realizing we don't automatically know whether what she says is true or not. And it's driving me crazy. She lies about flushing the toilet, washing her hands, using the toilet, who coloured on the wall, and even smaller things like what she did in the day. I mean, I get lying about not flushing the toilet and stuff (because what kid doesn't hate flushing the toilet?), but lying about what you ate for lunch? Whaaaat? And truly, when I asked her what she said, it was really neutral - I AM okay with her echoing, just curious about it. And she was insistent she hadn't been echoing.

I'm pretty familiar with echolalia - my son's speech is almost all delayed echolalia. You wouldn't believe how many movie lines I have memorized, as that's basically how he talks

Stimming in some ways I understand. I do it myself and always have. I was a pretty big hand flapper and did a lot of fingers in front of the eyes stuff, which I've managed to curb (because it was embarassing at school and later work!). Now it's more tapping, "typing" words on my legs under a table top, clicking my teeth together to spell words or make a rhythm, wrist circling, toe tapping, I do this constant head scratching/hair play thing, ummm...I'm a bit fidgety lol. I also am embarrassed to admit I have some more obvious compulsions to make weird noises and faces, or clap my hands, but I only do that when I am entirely alone in my vehicle (and typically only when I'm really anxious or over caffeinated). So yeah, a bit spectrummy myself, no dx other than ADD... I wasn't kidding when I said my kiddo was a mini-me. Right down to reading encyclopedias for fun.

Sometimes I wonder if I should pursue a diagnosis for her, but I worry about the huge fall out it would cause in the family (especially with extended family). There was enough of an issue over getting dx and treatment for the spd. She had scoliosis as a baby too and you should've heard the fuss about that - the inlaws were convinced there was nothing wrong, we were being ridiculous, etc. I also don't want anyone to pigeon hole her or assume she's incompetent because of a label - I've seen that happen so much, especially with my son.

 

[chillimom]

that's a good idea asking her what's going on in her head. I'll try that thanks!

 

[Aspergirl4hire]

This led into a talk about how he doesn't like anyone, it's not just her, and that he does love her,

I've often wondered what love means when it's accompanied by hateful or aggressive action. Love, I keep hearing, is not a feeling. It's a verb.

It's not true that someone loves you if there's a consistent pattern of damage or trauma being done. The emotion on the other side is sentimentality. Or worse.

"said she was just making a moaning noise, because she feels like she needs to."

She is telling the truth. She isn't hearing words, necessarily. Your processing of the sounds is different from hers. Do you understand that?

 

[Sass]

At 5 years old, she's still very young. And at 5, you still have some sway with her teachers (that doesn't happen much in high school as I recall, parents having much of a say about anything). Handled the right way, you can help her teachers create an environment that accepts all children, and one where she doesn't need to feel 'apart'. I've done that with my son's class teachers the last 2 years, and he hasn't had any bullying issues because we educate the other kids, we don't try to alter him to make the other kids happy or comfortable. It's gone well, and he's very comfortable in school.

Stimming, as long as it doesn't hurt anyone, is harmless and helps her cope. Making a big deal about it, or pressing her to explain why she does it, well that may not be helpful. Often I will stim because I don't know any other way of expressing myself or dealing with things. When asked to explain why I'm doing it I'm just as unlikely to be able to explain it as I am to be able to explain the feeling that caused it.

It just makes me feel better.

Also, maybe the lying is trying to make others happy? I know I did a lot of that, right up until my late teens.

 

[chillimom]

I've often wondered what love means when it's accompanied by hateful or aggressive action. Love, I keep hearing, is not a feeling. It's a verb.

It's not true that someone loves you if there's a consistent pattern of damage or trauma being done. The emotion on the other side is sentimentality. Or worse.

Can you explain what you mean about the emotion on the other side being sentimentality? I do believe my son loves us, to the extent that he is capable of it. He shows concern for his sisters, he worries about them being hurt, he smiles when talking about them if they're not there, he says he loves them when asked (and he doesn't grasp lying). However, the kids are noisy, they talk to him, they ask him questions, they run around, they are, as most children, unpredictable. It stresses him out. My son is very rigid - everything needs to be just. so. He has a hard time with noise, he gets really anxious when people talk to him or ask questions outside his scripted language. He also has attachment disorder, and probably (maybe?) some jealousy. When he is around his sisters, he yells at them (especially the 5 year old) to "shut up" anytime they laugh, talk, or basically behave like the small children they are. It's a steady stream of grumbling at them to "hey hey hey" "cut that out" "that's it" "enough" "un-unh", and so forth. If my 5 year old gives him a drawing or a gift, he'll refuse it. She asks for a hug, he'll say "go away". She gives him a hug, he squeals and pushes her away. If I try to direct him around any of this behaviour, he tantrums.

I'm very torn on what to do about their relationship. She always wants to see him, she misses him. But her feelings are hurt, and there's lots of meltdowns and acting out after every visit. I know he'll be more tolerant when she is older and able to follow all his quirky rules. But I worry that if they don't have a positive relationship now, when she's young, that *she* won't want one when she's older. And it is so important to my mind that my son have a relationship with his sisters, as they are going to be his longest relationships, and hopefully his advocates once I'm no longer able.

She is telling the truth. She isn't hearing words, necessarily. Your processing of the sounds is different from hers. Do you understand that?

I do - I hadn't realized that could happen, that she actually doesn't hear herself saying words. Is this actually the case for some people? I have issues with auditory processing myself, where I can't understand what people are saying - it sounds like a foreign language, but I've never not understood what I was saying.

Also, I have to ask, as tone isn't easily conveyed through writing - are you meaning to be snarky when you ask if I understand that? If so, have I been ignorant or insensitive somehow?

 

[Ylva]

I do - I hadn't realized that could happen, that she actually doesn't hear herself saying words. Is this actually the case for some people? I have issues with auditory processing myself, where I can't understand what people are saying - it sounds like a foreign language, but I've never not understood what I was saying.

I don't think she was being sarcastic. It sounds like a simple concept if you understand it, but many people would not understand it because they can't see the meaning of a word as separate from any other part of the word, or so it seems.

In the situation you described, your daughter was multitasking, watching tv while having her nails done, which though passive required her to pay attention to two things, so I imagine "pacing" the sounds from the tv was how she concentrated on what was said on the tv.

 

[chillimom]

I don't think she was being sarcastic. It sounds like a simple concept if you understand it, but many people would not understand it because they can't see the meaning of a word as separate from any other part of the word, or so it seems.

In the situation you described, your daughter was multitasking, watching tv while having her nails done, which though passive required her to pay attention to two things, so I imagine "pacing" the sounds from the tv was how she concentrated on what was said on the tv.

"pacing" the sounds - I like that.

While we're on my rambling full of questions thread: any tips on getting her to stop chewing and sucking her toes? She bites her toe nails and chews the skin around them (fingernails are chewed also, but less intensely). They get inflamed, and she's chewed a couple nails right off (like past the quick, down to the cuticle). I hate seeing her hurt herself I've tried chewlery. I've tried redirection. I've tried nagging. I've tried asking her for alternatives. No luck. She says she needs to do it, and will, if nagged enough, simply run and hide to do it.

 

[tree]

Re: nail biting
Maybe increase calcium with magnesium?

I am thinking about the relaxing effect of
these minerals on the strong urge to bite.

 

[Ylva]

If she has tactile hyposensitivity – I don't know if it can be that local – then she needs tactile stimulation, in this case apparently to her fingertips and toes. Maybe find something coarse or rubbery for her to rub her fingertips on?

 

[Warmheart]

Yiva has it. Magnesium supplement (250 md) at bedtime can help calm.
She's very young, but you can talk to her about this redirection in a positive way. "We're going to find you some great chewies and fidget toys to enjoy instead. They're toys just for gnawing and having fun with whenever you want, like when you watch TV, look at books, and even at school."

Next, check out "chewelry."

I think the website Stimtastic has chewy stim toys. Other websites have fidget stim toys too, just google autism fidget toys.

I even use fidget toys!

I've got these-->

 

[dragonwolf]

Ugh, I know I think I didn't drop it because I didn't get why she was lying about it. I still don't understand why. And she's been lying a ton lately about things where I don't see the motivation. I think she's experimenting with the fact that she *can* lie, that she's realizing we don't automatically know whether what she says is true or not. And it's driving me crazy. She lies about flushing the toilet, washing her hands, using the toilet, who coloured on the wall, and even smaller things like what she did in the day. I mean, I get lying about not flushing the toilet and stuff (because what kid doesn't hate flushing the toilet?), but lying about what you ate for lunch? Whaaaat? And truly, when I asked her what she said, it was really neutral - I AM okay with her echoing, just curious about it. And she was insistent she hadn't been echoing.

She's 5. Are you sure she's actually lying? As in, intentionally trying to deceive you? It's entirely possible that she honestly doesn't remember doing the actions you're accusing her of. I don't know about anyone else, but the only thing that irritates me more than being accused of lying is when the accuser insists that I'm lying when I know/believe that I'm telling the truth and trying to convey that. It's not only frustrating, but also calls into question my perceptions of the world/situation, as well as my integrity (which I value highly), which deeply undermines my self-confidence.

Odds are actually pretty good that she is being honest when she tells you things. They may be objectively incorrect, but she believes that things are how she says they are. She's 5. She's going to be distracted by other things and forget to do things sometimes (and even pretty often). Just gently remind her when it's actually reasonably important (ie - washing her hands). If she says she already did so, ask her to do again for you. If you don't catch her in the act on something and she says something you know is incorrect, there's not a lot of point in accusing her of lying, the connection between act and consequence is already gone. Instead, if it's something like coloring on the walls, enlist her help to clean it up.

As for the toilet, most NT kids I know actually kind of like flushing it, or at least go through a stage where they are fascinated by it. However, kids with SPD often don't like the sound, because it can be harsh and painful on their ears. My son despises flushing the toilet, especially in public restrooms, because the sound is too loud. It helps to show ways of coping, such as waiting to flush until you're about to walk out of the room (or stall, in the case of the public restroom).

Sometimes I wonder if I should pursue a diagnosis for her, but I worry about the huge fall out it would cause in the family (especially with extended family). There was enough of an issue over getting dx and treatment for the spd. She had scoliosis as a baby too and you should've heard the fuss about that - the inlaws were convinced there was nothing wrong, we were being ridiculous, etc. I also don't want anyone to pigeon hole her or assume she's incompetent because of a label - I've seen that happen so much, especially with my son.

As someone who was not diagnosed until adulthood, I lean a lot more toward an earlier diagnosis. You don't have to tell the world -- or anyone at all -- about it if you don't want to. However, getting a diagnosis for a child is a long, drawn-out process, but the diagnosis itself can open up an array of help for the child through school, which can prevent them becoming the target of bullying.

Being gifted and Autistic is also quite frustrating, especially if you don't know that you're Autistic, or don't have a diagnosis. People don't understand how you can be so smart, but still have "blind spots" in other situations. I've lost friends and colleagues, because I did or said something that greatly upset them, but I couldn't understand why they reacted the way they did, and when I asked, I would get a response along the lines of "you're smart, it's obvious, figure it out." Having a diagnosis and the support network that can go along with it can go a long way toward helping her learn what happened when stuff like that happens to her.

Don't want her to be pigeonholed because of a label? Then don't pigeonhole her. The biggest thing holding disabled people back are those the people they depend on. Teach her to be independent and to advocate for herself (not just regarding disability or whatever, but in general). Teach her how to set good boundaries and that it's okay to enforce them. In places where she struggles, teach her that it's okay to ask for help.

 

[dragonwolf]

Yiva has it. Magnesium supplement (250 md) at bedtime can help calm.
She's very young, but you can talk to her about this redirection in a positive way. "We're going to find you some great chewies and fidget toys to enjoy instead. They're toys just for gnawing and having fun with whenever you want, like when you watch TV, look at books, and even at school."

Next, check out "chewelry."

I think the website Stimtastic has chewy stim toys. Other websites have fidget stim toys too, just google autism fidget toys.

I even use fidget toys!

I've got these-->

View attachment 20727

Holy cow, that store is awesome! I want like half the stuff on it, like the infinite bubble wrap! How did I never think to look for stuff like that?! (I mean, I kind of did, but more in the typical "desk toys" sense, and not in the sense of stuff specifically designed/marketed for stimming).

It's timely, too. My son's school suspects his thumb sucking habit is a sensory stimulation thing and is trying Jolly Ranchers to satisfy that need instead of his fingers. I'm thinking that if their idea works, I could get him chewelry of some sort to use instead. That way he's not associating the sensory stimulation with food/candy.

 

[Warmheart]

Just another idea, you can see if he enjoys crunchy raw organic carrots. They are cheap at about $1.26 a bag at my grocery.
My OT (occupational therapist) who is designing an ASD sensory program for me, has agreed raw crunchy carrots are calming. Absolutely! Just an idea to try, maybe to pack in his lunchbox.