Highly functioning autism or just a strange behavior in my 10 year old?...

[newhere]

I know I need to go to the doctor and ask, but since many wonderful people here might just give me some life feedback on this forum, I would highly appreciate it!
My dahugher, who is now 10 has some slightly unusual behavior, and I wonder if it's simply her personality, or I should get her tested...
Many things got MUCH better with time, so maybe it will all "work itself out"?...

1. A little hard to have a conversation with her as she only wants to talk about subjects she brings up. She would answer yes/no, and switch to the topic interesting to her.
2. Hates when somebody takes her picture, does not smile, would close her eyes on purpose, look to the side, etc.
3. Started speaking relatively late, around 3, was ignoring other kids, but now, finally is talking up a storm, engages into games with all different kids. Huge progress all of a sudden, which makes me feel like I am overthinking this...In school prefers to work by herself, not in a group. Says kids make too much noise.
4. She does not like loud noise. Hates when people sing, can even start crying (she has a "perfect pitch" herself - can tell you what note is being played on the piano without looking, so maybe that's why?..)
6. Has so much trouble falling asleep. It takes forever - I am the same though.
7. Very attached to old posessions. Does not let me rearrange or change furniture/decor in her room. But I was like that too as a child.
8. Sometimes would get mild voice tics a few times a year (like making "hmmm" sound when exhailing, or "aah" quietly. when overtired , overwhelmed. Later tics go away).
9. Kind of fearless, not afraid of heights, exploring, etc.
10. Hard for her to be organized. Her teacher always complains that she "does not pay attention", "doodles instead of listening" ,"her desk is a mess". But she has good grades and is great at math. It's behavioral complains only.
11. Has lisp, trouble pronouncing "s", "sh" sounds. Working with a therapist, almost no results.

She is a super kind, positive, smart girl. Happy kid. Would never hurt anyone. Helps people in need always. She does have a best friend, they are very loyal and adore each other, play well. Finally came out of her shell, started playing with other kids, telling funny stories,

Why I think she is not on the spectrum:
She has no trouble telling how I feel about things, reads emotions well, compassionate when I am upset, etc.
Never had any hand flapping, etc. Responded to her name early on. Had typical baby/toddler emotions/responses.

I would say, onlly 3 years ago, we were checking way more boxes. Many things got better, and I do not want her to realize I am doing these tests on her, what it is about, if it is not necessary. Maybe it's just her personality, and I need to leave her alone?..

I would truly appreciate other moms and forum members feedback. Thanks much!! Sorry for a long thread...

 

[Hypnalis]

One possibility: very intelligent HFA with "flaky" ADHD.

Intelligent Aspies can present as normal to NTs, and at 10 won't think much about their differences (that requires a good understanding of "NTs vs self"). That will show as adaptation (things "working themselves out") - which, if she's HFA, is both genuinely adapting to the real world, and a "false negative".

If that's the case she may be hard to diagnose, even at 10.

 

[Rodafina]

Hello and welcome, @newhere.

I am not a mom, but I was a 10 year old girl with autism 33 years ago.

Some of the characteristics you describe are definitely relatable and all of these things are definitely worth bringing up with your child's doctor.

Two things about autism that I'd encourage you to keep in mind are the wild diversity among us and the propensity to learn how to mask at a very young age. Do you know about masking?

Many of us have experienced a situation where we are very skilled and proficient at some things, but quite lacking in others. Sometimes our challenges can be overlooked because we are quite competent in other areas and can compensate for any deficiencies in functioning that we have. This can work for awhile, but can get exhausting and ineffective over time. It is important to get children any support they need early on so that they can develop the skills they need to be a high functioning adult and reduce the risk of developing co-morbid conditions (e.g. anxiety and depression).

 

[Neri]

Hi. Any other autistic people in the family? That's an easy tell. Or ADHD? Otherwise it's quite a bit harder to tell, with what you've said. I don't think anyone here could definitively tell you. I have a lot of autistic children of differing presentation, so it can certainly look very different, for different people, but, the easiest way, to have a little more clarity, is to pinpoint it in the genetics, as it tends to be a genetic condition.

The "messy desk" makes me think more AuDHD, if anything (I have that, and I am very creative and chaotic female person) but, it could be something completely different. She does sound a little "twice exceptional" though. That's something you could research and see if it sheds any light.

 

[kriss72]

Hi @newhere , welcome to the forum - as the others have said, maybe... (to both autism and adhd) there are some traits that sounds familiar (I have both, incl a daughter, but she isn't autistic), is your suspicion something you could talk to her teacher(s) about?

 

[Misty Avich]

Maybe ADHD and some learning difficulties? Children with learning difficulties can also be bright in some things. My sister (not ASD but has learning difficulties) could play the piano at age 5, with two hands.

Unless she is struggling and is anxious in school and poorly behaved at home (which it doesn't look like), I wouldn't try and get her assessed. Many children dislike having a label and knowing they have one can actually set them back emotionally and affect their social life if it somehow gets blabbed out to everyone and their dog. Not saying that happens to everyone but it did me.

So maybe just leave it for now. But that's just my take and you don't have to listen to me of course.

 

[AuAL]

As some have already noted, twice exceptional is a real thing. This can cover up some of the “expected” symptoms, e.g. speech development may not be abnormally delayed and “catch-up” can be rapid. Do not pay too much attention to the ”autistic = unempathetic” trope; many autistic people are very empathetic. Masking can start very early, as @Rodafina mentioned - it can be a response to feelings of social awkwardness felt quite young. (I speak from personal experience, as I am sure others here do, too) it may be quite helpful to seek, and listen to, the opinions of her teachers as to what they see her needs may be. Above all, shed any feelings of stigma - autism is not a defect. I hope you and your daughter can find what she needs to achieve her full potential, and grow from a happy child into a happy and accomplished adult.

 

[MNAus]

Hi there,

One of the tricky things with ASD - and I sincerely hope they sort this out soon - is that ASD covers a massive footprint of behaviours and traits. The first problem is that two people on the spectrum can be utterly different in how they experience autism. The second problem is that the spectrum is so wide that it makes it very easy to have confirmation bias when reviewing an individual's behaviours. My hope is one day they identify something like 4 archetypes that bring more precision in diagnosis.

So my honest answers is we can't know. If your daughter had a suspected broken arm, we might be able to give a more confident answer. But from what you say, it's "perhaps". And that's no help to you at all. I guess the big question is whether you feel this is causing her distress or she needs supports? If so I'd recommend you contact a professional. Masking (as others noted) can hide symptoms with a pretty high mental-load price. You sound like a caring parent, otherwise you wouldn't be here asking questions. Perhaps professional advice might serve you well.

 

[newhere]

Maybe ADHD and some learning difficulties? Children with learning difficulties can also be bright in some things. My sister (not ASD but has learning difficulties) could play the piano at age 5, with two hands.

Unless she is struggling and is anxious in school and poorly behaved at home (which it doesn't look like), I wouldn't try and get her assessed. Many children dislike having a label and knowing they have one can actually set them back emotionally and affect their social life if it somehow gets blabbed out to everyone and their dog. Not saying that happens to everyone but it did me.

So maybe just leave it for now. But that's just my take and you don't have to listen to me of course.

Thank you, dear all, for answers. I agree with Misty Avich...Exactly! I don't want a label slapped on..and thats why I still did not diagnose her..She does not needs meds, so what is the point?..we are already working on all sorts of skills improvements...If it was me, I know I would have been set back by it emotionally.

As for other family members: I am suspecting ADHD in my older daughter and her cousins. Both my kids have very hard time staying organized. But they are finally staying on task, without wondering off to something else. So great progress. But in elementary school I constantly heare teachers complaining. But it does get better!! Girls have chores and expectations at home - it helps.

10 year old has great math understanding and is talented in music. Maybe not talented, but better than average for sure.

 

[newhere]

Maybe I should ask this:
Dear members who replied, being assesed/diagnosed, did it help you? If so, how? Or do you think it would have been better now knowing?
Were there any practical exercise/ technics that actually helped?

 

[330]

I did not do hand flapping , and I had a very messy desk as well. She sounds extremely similar to me as a child almost everything you described was how I was as a child and how is still am . I did learn to adapt with certain situations as a survival technique. I am diagnosed ASD2 .
I don’t believe in the word Aspie or identify with that.
It may not be so black and white ,She could be learning to mask which could be very harmful to her later in life. I would try to find and reputable specialist who would be able to help and look at all variables . Good luck and continue to be the supportive parent you are . She is lucky to have you !

 

[AuAL]

@newhere, just to let you know - I self-diagnosed at age 64. I fit into 2e, so not really much to gain from formal diagnosis at this stage. My wife works in early childhood education where the needs are often very different. So my focus would be on understanding what your daughter needs. With or without labels.

 

[kriss72]

Maybe I should ask this:
Dear members who replied, being assesed/diagnosed, did it help you? If so, how? Or do you think it would have been better now knowing?
Were there any practical exercise/ technics that actually helped?

Yes, for me it has been a life changing thing to get diagnosed, I went from always trying to copy others, doing what I thought others wanted me to do, what I was supposed to do, to learn that my own view on things was valid, that it was ok to be me, that there was I reason I couldn't be like everyone else.

I wish I had known when I went to school, I might have had an education today, if I had gotten the help I needed - I managed to get along anyway, getting married, having a child, a job, but it have had a high price, like many, many years where it was about surviving, rather than living.

 

[MNAus]

Maybe I should ask this:
Dear members who replied, being assesed/diagnosed, did it help you? If so, how? Or do you think it would have been better now knowing?
Were there any practical exercise/ technics that actually helped?

I can answer on behalf of my kids, I guess, because I was quite late. For my kids, it's been life changing. But to be honest it's not like there's any doubt with them. You'd have to be a pretty poor psychologist to miss it. If you were in the same room as them for 5 minutes you'd know. They're both high functioning, but it's really quite obvious, so not sure of the applicability to your little one. But for what it's worth, it's been incredibly important. Here's why:
- Therapies are expensive. I'm not convinced they're even slightly good value for money, but regardless the benefits are essential
- Their school takes them seriously now
- We're able to be positive: our house is packed with autists (except poor mum) and we embrace being autistic. There's no doubt, we're that and we're kick***.
- It allows you to take a different viewpoint. you can ask "what if he/she isn't just being naughty?" There's no answer on where typical kids pushing boundaries ends and the autism begins, but you can at least take another perspective.

 

[newhere]

I did not do hand flapping , and I had a very messy desk as well. She sounds extremely similar to me as a child almost everything you described was how I was as a child and how is still am . I did learn to adapt with certain situations as a survival technique. I am diagnosed ASD2 .
I don’t believe in the word Aspie or identify with that.
It may not be so black and white ,She could be learning to mask which could be very harmful to her later in life. I would try to find and reputable specialist who would be able could help. Good luck and be the best supportive parent you can which seems you already are by checking around here on the forum.

Thank you so much!! Stupid question: why is masking bad? Isn't it learning how to adapt?..Isnt' it the same as my mom making me say "thank you" after somebody gave me candy, even if I didn't feel like it?...If it is harmful, what other solution can there possibly be?...I apologize if I am off, not sure how to ask this right....I just genuinely try to understand how otherwise people would adapt if not "mask"?..what would other solution be?

 

[Neonatal RRT]

@newhere Well, I think you may be onto something there. As one of my physician mentors used to say, "If it quacks like a duck, has a bill like a duck, has feet like a duck, has feathers like a duck, walks like a duck,...it's probably a duck."

From your description, it would appear that if, indeed, it is autism (likely), then she would be in that ASD-1/Asperger's category. In other words, could have life-long communication and social difficulties, sensory issues, etc. but likely has the intelligence to mask her symptoms and could, at times, pass for neurotypical to the untrained eye. Like many of us, will have varying intelligences. In other words, could really struggle with certain academic subjects, or even the way that her instructors are teaching, but then there may be one or two subjects that she excels at.

Sometimes home schooling is a better option for autistic children, not only academically, but from a social, emotional, and mental health perspective. Cross those bridges if and when you get there. I did OK in public schools, but I was also an insecure boy who found athletics and weightlifting, and was not bullied. I didn't have social media, which can be a horrible thing if there are bullies online. We are living in a different era. Some things much easier, some things much more difficult. Knowing what I know now, despite her protests, I would keep her away from social media platforms, at least until after high school. Kids can be nasty online.

 

[Misty Avich]

Maybe I should ask this:
Dear members who replied, being assesed/diagnosed, did it help you? If so, how? Or do you think it would have been better now knowing?
Were there any practical exercise/ technics that actually helped?

It didn't help my life. The social services forced and threatened my parents into getting me assessed, which was stressful. I absolutely despised my label and felt embarrassed and ashamed of it. My mum told literally everyone (family, extended family, friends of family) believing it was the right thing to do at the time, and my teachers all knew at school and then the whole class knew. And kids and labels don't mix, so the other kids (who I fitted in well with before) suddenly thought differently of me like I was some sort of leper. They thought having a label meant I was "stupid" and they felt embarrassed to be seen with me. And it wasn't just them, I hated being singled out.

Having a diagnosis made me feel more different than the disorder itself. And because I was shy in school, I didn't qualify for ADHD, even though I definitely had ADHD (I'm diagnosed now as an adult). This was the '90s, so back then ADHD still meant "naughty schoolboy". I think getting diagnosed with ADHD in childhood would have helped more, as I would have been able to be prescribed medication to help with my challenging behaviour at home and my attention difficulties in school.

 

[MNAus]

Thank you so much!! Stupid question: why is masking bad? Isn't it learning how to adapt?..Isnt' it the same as my mom making me say "thank you" after somebody gave me candy, even if I didn't feel like it?...If it is harmful, what other solution can there possibly be?...I apologize if I am off, not sure how to ask this right....I just genuinely try to understand how otherwise people would adapt if not "mask"?..what would other solution be?

For me this is a question of extent. Everyone learns how to get along ,You ask "how are you?" without caring about the answer. You nod with interest when someone relates a story about their last hiking holiday. That's the normal to-and-fro of maintaining social bonds. For me the difference with autism is that you have no social bond as a result. It isn't about social hygiene to maintain relationships you value, it's about putting up a charade that prevents people from identifying you as someone who has no social connection. You are the used car salesman of social interaction in that it's almost manipulative, but it doesn't come from a desire for personal gain. It comes from a desire not to be exposed as completely unable to instinctively navigate social interaction.

 

[MNAus]

Well, I think you may be onto something there. As one of my physician mentors used to say, "If it quacks like a duck, has a bill like a duck, has feet like a duck, has feathers like a duck, walks like a duck,...it's probably a duck."

But also, when you hear hoofbeats, think horses not zebras,

 

[AuroraBorealis]

Maybe I should ask this:
Dear members who replied, being assesed/diagnosed, did it help you? If so, how? Or do you think it would have been better now knowing?
Were there any practical exercise/ technics that actually helped?

I wasn't diagnosed until I was 25, and pursued it myself. My cousin is very surely autistic, although not officially diagnosed, as far as I know.
I think I would have benefitted from getting diagnosed at around the age your daughter is. But probably less because of the diagnosis itself, but because it would have meant that my parents would have been more attentive and accepting to my needs, discomforts and traits, instead of just trying to "raise them out of me". I secretly hoped at several stages in higher school that a teacher would ask me what was wrong and tell my parents, because I was struggling but lacked the ability to tell an adult straight-out.

So, I think that right now your attitude and behavior, as well as the school's, is more important than an official diagnosis. As @Misty Avich said, a diagnosis could even be harmful for your daughter (big "could"). You seem to be a considerate and attentive parent and she seems to be developing into a healthy direction. Maybe rather than getting your daughter assessed, it could be more beneficial to keep educating yourself about neurodiversity and support your daughter as best as you can, keeping in mind that she might be on the spectrum. If, at some point, you get the impression that she might start suffering from anxiety, depression, being taken advantage of, whatever, you could reevaluate.
As your daughter gets older, you could bring up the topic of neurodiversity, like you suspecting ADHD running in your family, so that she as a teenager and young adult maybe gets some input to do some research by herself, if she wants to. She might tell you about suspecting it for herself, then.

why is masking bad? Isn't it learning how to adapt?..Isnt' it the same as my mom making me say "thank you" after somebody gave me candy, even if I didn't feel like it?...If it is harmful, what other solution can there possibly be?

Up to a certain point, masking is certainly helpful and a practical tool, if used consciously. It helps to blend in and to navigate the world as a neurodiverse person. But, and that's important, masking is very, very exhausting. If you spend all day masking, you're done in the evening, have meltdowns, or internalize and get depression and/or anxiety (not meaning to generalize, though, obviously there are exceptions). Also, if HFA autistic people grow up masking unconsciously, a lot of them lose their sense of who they really are. If you spent your whole adolescence masking, you might burn out when you reach university or your first job, suddenly you can't deal anymore and you don't know why. And you don't have any alternative coping strategies because you never learned them.
I think masking is a very useful skill, as long as you can use it consciously, know yourself and know alternatice strategies, and as long as "your whole life doesn't depend on it".
Edit: Also, you could compare it a bit with the "saying thank you when you don't really mean it because it's polite", but the difference is that for NT children, that's, like, one moment. Autistic masking is doing stuff like that constantly, and also figuring it out by yourself, not having your mom standing next to you who tells you every step of the way "now you should smile, now you should look at their faces, now you should say this", etc. It's just very, very exhausting, and often feels very uncomfortable, like giving a kiss to your aunt when you don't want to, but all the time, on a daily basis.