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On_A_Journey
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09 Aug 2022, 3:25 pm

Hello, I am new here. My daughter is 17. As a baby, toddler, and young child, we didn't observe anything unusual, developmentally, other than her scores as gifted on every measure at school. Since the onset of puberty, everything changed, and she has suffered tremendously. She has symptoms of major depression including suicidal ideation, anxiety (especially social), extreme sensory sensitivity, and OCD. A psych assessment diagnosed her with autism after she divulged private stimming and masking, despite some question about whether she meets DSM-V criteria since there is no evidence from early development.

She has had terrible outcomes with meds before, but she wants to try again. My questions:

1. Does it make sense that a girl would show no autistic symptoms until puberty?
2. How worried should I be about whether autism is a correct diagnosis?
3. How important is it to find a psychiatrist with significant experience with autism?

Thanks for any insight.



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09 Aug 2022, 7:38 pm

Hello and welcome. That sounds very rough for both you and your daughter.

I think it's important to keep your goals in mind, whatever they are. (Obviously your big picture goal is helping her feel better.)

BTW, has her doctor given her a full medical workup to rule out any health problems? A boy I know's teachers were convinced he was autistic, but it turned out he has a chronic illness and was behaving the way he was because he felt bad all the time.

1. I think it's actually quite possible for someone to start manifesting autistic symptoms at any age. Yes, I know that's not what the diagnostic criteria say, but... why? We don't know what causes autism. Well, we know what causes *some* cases, but not most of them. It's not like the flu, which is caused by the influenza virus. Rather, autism is defined by a list of symptoms. Could something have happened that triggered these symptoms? Sure, why not?

2. I wouldn't worry. As a philosophical question, "how exactly should we define autism and is it the best label for my child?" is interesting and I think about it all the time. On a practical level, it's not important. I think of the term autism as like the term "disabled." A blind person and a deaf person can both benefit from things intended for "disabled" people, even though their individual needs are very different. You'll most likely benefit from approaches aimed at autism generally, and from approaches that address your daughter's specific sub-conditions of depression, anxiety, OCD, etc.

3. I have no idea, but I suspect "very.'

Good luck. I hope your daughter feels better soon.



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10 Aug 2022, 6:13 am

The neurological variant that presents as Aspergers frequently has a high IQ associated with it. It may be that your daughter had milder and less discernible other aspects. Aspergers is known for higher sensitivity (both sensory and cognitive).

At the time of puberty there is a common neurological change in that abstract thought is suddenly experienced. For example if someone tells a ten years old, "You stink", he might reply, "So do you". A 13 year old in response to the same assertion might think, "Do I?" or "Why do they hate me?".

If your child has always had a higher level of sensitivity but not so much as to be triggered by routine childhood experiences, it might not appear to be present at all. However, the onset of adolescent trauma might be sufficient to make it more pronounced.

One way to think of the changes we all went through, but often forget is to use the illustration of suddenly becoming telepathic. If you were bombarded with everyone's thoughts it would almost be incapacitating. However, after five years, one would expect to have developed the skills to manage such an avalanche of perception.



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11 Aug 2022, 4:06 pm

Sorry to make this about myself but I had a similar experience as a child, except I showed no symptoms until the age of 4 when I started school, but even that was anxiety symptoms more so than autistic symptoms. But because of the sudden change in my normal behaviour I became a bug under a microscope and so a diagnosis of Asperger's syndrome was revealed 4 years later. If I hadn't have shown such drastic behaviour changes due to severe anxiety on my first day of school then I probably would have gone unknown until at least puberty.

When I hit puberty (aged 10 or 11) making and keeping friends became harder and I was lonely at school. Before puberty friendships didn't seem much of an issue. So it might be due to the social demands adolescents face.


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DW_a_mom
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12 Aug 2022, 3:39 am

On_A_Journey wrote:
Hello, I am new here. My daughter is 17. As a baby, toddler, and young child, we didn't observe anything unusual, developmentally, other than her scores as gifted on every measure at school. Since the onset of puberty, everything changed, and she has suffered tremendously. She has symptoms of major depression including suicidal ideation, anxiety (especially social), extreme sensory sensitivity, and OCD. A psych assessment diagnosed her with autism after she divulged private stimming and masking, despite some question about whether she meets DSM-V criteria since there is no evidence from early development.

She has had terrible outcomes with meds before, but she wants to try again. My questions:

1. Does it make sense that a girl would show no autistic symptoms until puberty?
2. How worried should I be about whether autism is a correct diagnosis?
3. How important is it to find a psychiatrist with significant experience with autism?

Thanks for any insight.


Welcome.

I would assume any medication would be for the depression or other co-morbid, as there really is no medication for autism. I'm not a fan of medication with teens as too many work differently and potentially dangerously. It really should be a last resort, IMHO. Still, she is old enough to provide accurate feedback if she does wish to pursue medication, and it is important, I believe, that she be the lead on any such choice, not the adults around her.

As for timing, girls seem to be consistently under-diagnosed when it comes to autism. They tend to mask well, and signs they do show tend to be misread. She likely has had the symptoms all along, but they weren't severe enough to be noticed, and/or blended in well enough with the behaviors of other kids as to not stand out. As stress factors and co-morbid conditions aggravated her symptoms, or as other kids outgrew similar behaviors but she didn't, her symptoms became more noticeable. Regardless of why, it isn't uncommon for girls who do get diagnosed to receive the diagnosis at a much older age than boys do. My son's girlfriend got hers at 23.

I think of labels as a tool, and if applying the tool helps a family, it doesn't really matter if it was the "right" one. If the tool isn't helping, keep looking.

Throughout this forum you can find protocols for dealing with the typical issues faced by ASD individuals. Look, in particular, for how to prevent melt-downs, how to handle sensory issues, and the function of self-calming stims. The symptoms of ASD can often be effectively mitigated by conforming the environment to the needs of the child, instead of forcing the child to conform to the realities of the world. Once they've figured out how to thrive in an adapted environment, they can slowly readjust to different real world scenarios they find difficult. A lot of these protocols are effective for other conditions, as well, so if they work, use them.

Good luck.


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12 Aug 2022, 4:30 am

I am so glad to read this post. My daughter is EXACTLY the same. No visible symptoms til she was a teenager. She preferred playing alone but she is an only child so that isn't unusual, and she had laser focus but again, it wasn't unusual.

Then suddenly as a teenager she showed all the autism symptoms, it was like she suddenly became a different person. She does a lot of muttering to herself and repetitive movements that she didn't do before, she has also been horrendously anxious including suicidal thoughts. She is 16 now and was diagnosed age 15 after it took years for the tests and paperwork to go through.

She had a lot of counselling over the last year after I got angry and demanded that someone help her instead of being told 'go here, go there for help' and being sent to different organisations all the time and going round in circles.

I would really appreciate some advice and thoughts about her, sorry to distract from the OP but I don't have any friends or family to ask.


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klanka
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12 Aug 2022, 1:44 pm

I felt like it suddenly hit me when I was 12



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13 Aug 2022, 12:51 am

Wow, just registered and the first post I read is spot on for my own daughter, same age etc.etc.
She thinks it is ADHD inattentive type and we are close to a diagnosis or other result after two years of going here, there and everwhere. I think she is right in regards to ADD but flutters somewhere on the spectrum too IMO. My son is not diagnosed but would now most likely be called high functioning autistic. Both only started to run into problems since puberty as their symptoms are either well masked or reasonably compatible with NT society. Daughter has always done stimming, but again, in a very acceptable manner that is not very noticable.
I discarded most other things that could have been "signs" as she is a lot like me when I was younger and I simply understand her so it never occured as "different"(yep, reading into my children's issues, brought home how NT I am myself...NOT! :D ) and she looks people in the eyes...or so I thought. She recently told me she actually taught herself at a really young age, to look at people's eyebrows, because looking people in the eye made her feel very uncomfortable and apparently I had told her that it is polite in our culture to look people in the eye when interacting. Her brother on the other hand really tries to look people in the eye but he really cannot seem to master it but he is stubborn like that and will not use a trick like my daughter does.
So thanks for asking the question, I will follow responses.



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13 Aug 2022, 3:22 am

klanka wrote:
I felt like it suddenly hit me when I was 12


Hi Klanka,

What did you notice?



KitLily
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13 Aug 2022, 4:51 am

I think with us, we made a lot of adjustments for our daughter without realising we were doing it, but when she went to secondary school aged 11, the teachers noticed that she was like their other high functioning autistic students, and recommended we get her assessed.

But no one noticed before she was 11 or 12. I wondered if something had actually happened to her around that age to suddenly make her autistic but I assume that's not possible?


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13 Aug 2022, 5:08 am

What if you just didn't notice her symptoms before puberty?


I mean I had autism all my life, but my parents did not really see it. They always thought I was just being oversensitive or making problems out of nothing I did not get an autism diagnoses till adulthood. With mostly not much help from either of them....I mean I love my parents but they are idiots.


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KitLily
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13 Aug 2022, 5:24 am

Sweetleaf wrote:
What if you just didn't notice her symptoms before puberty?


I mean I had autism all my life, but my parents did not really see it. They always thought I was just being oversensitive or making problems out of nothing I did not get an autism diagnoses till adulthood. With mostly not much help from either of them....I mean I love my parents but they are idiots.


That was probably the case- she is our first and only child so we didn't know what to expect. We just took good care of her and made adjustments for her without realising we were doing it, I suppose. And apparently I'm autistic too so she didn't seem unusual to me. We definitely didn't think she was oversensitive or making problems out of nothing, we let her show her emotions and do what she needed to do.


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kraftiekortie
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13 Aug 2022, 7:57 am

I am one of those who was blatantly autistic from a very young age (infancy/toddlerhood). I had the “classic” Kanner symptoms. No speech till age 5 1/2—at a camp where they were researching autism, no less.

I never had a moment where I ever thought or knew I was “normal.” I guess I’m “fortunate” in that sense.

I feel like many things become more blatant in adolescence because people become more self-aware at that age, and social situations become more complex.

There are certainly girls who show all the classic autistic symptoms at a young age. But there are other girls who are “missed” because their symptoms are less overt than the symptoms of boys. They tend to cause little trouble, and to seem to be “just shy.”

Boys just “act out” more, so they force teachers to assess them, and refer them for professional assessments. Because these boys are disruptive to the stability of a class.

I was both: blatantly autistic all my life, and disruptive in class.



On_A_Journey
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13 Aug 2022, 8:23 am

Plot twist (I'm the OP): To learn more and help my daughter, I took all the assessments at Embrace Autism. I scored as autistic on every measure except one where I scored as having a mixture of autistic and neurotypical characteristics. I was surprised. Maybe I missed the signs with my daughter because we are very similar.

The difference is that I'm not depressed. I am trying to find help for her for the depression. It's so frustrating to contact healthcare providers and they don't respond. It's not just mental health providers who don't respond. I needed an emergency surgery last month, and I couldn't get that scheduled, either.

I appreciate all the responses. It really helps.



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13 Aug 2022, 8:31 am

Were you depressed as an adolescent?

Sorry about the emergency surgery. I hope you’re doing much better now.



On_A_Journey
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13 Aug 2022, 8:42 am

kraftiekortie wrote:
Were you depressed as an adolescent?

Sorry about the emergency surgery. I hope you’re doing much better now.


Thank you.

Good question. I wasn't depressed. As an adolescent, I was single-mindedly focused on academic achievement. I wanted to escape a bad family situation and be the first person in my family to attend college. After starting college, I was extremely anxious, though. I have anxiety in common with my daughter.