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If you have a girl who got a late ASD diagnosis...


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I have three kids diagnosed with autism (sorry, no girls) and they are all *so* different. Really, it's incredible how not alike they are. I don't think you will be able to find unifying characteristics outside of the actual diagnostic criteria.

I've had an autistic baby with awful, awful colic and a super mellow, happy-all-the-time autistic baby. I have an autistic kid who avoids, dislikes, and mistrusts people and another autistic kid who is friendly, makes friends quickly and easily, and loves people. I had a super early talker, a mostly-average talker, and a very delayed talker. Two hand flap, one doesn't. One avoided eye contact (until he learned to mask), two didn't. One of my autistic boys can read facial expressions, small-talk, understand and use sarcasm and idioms, etc. One couldn't mask to save his life. One of my autistic kids is an extrovert and adored by peers, one is introverted and comes off as aloof, and one is a social introvert who is mostly treated like a force of nature by his peers. I've got a sensory seeker, one who is sensory defensive, and one who is sensory under-responsive.

There really isn't an autistic way to hit milestones, make friends, or behave, and how autism presents in an individual can change dramatically over the lifespan.

My oldest was in-your-face neurodivergent as a baby/toddler. I suspected he was autistic from infancy. He did all the classic things: actively avoided eye contact, lined up toys, spoke like a robot, was literal to the extreme, flapped his hands, had extreme difficulty with transitions and changes in routine, etc. But now at 13, the kid can pass for neurotypical when he wants to, which is pretty much always when in the presence of non family members. On the other hand, my 9yo looked like a pretty typical kid until 4-5 years old. It's a lot like he's grown into his autism as he's failed to grow out of behaviors that were once considered age-appropriate. 

The social rules for little kids are pretty simple. Things start to get more complicated by the end of elementary school. I think it's pretty typical for kids who used to get by socially to start having trouble keeping up with the social demands somewhere in late elementary to middle school. I know many families, particularly with girls and/or especially bright children, where the autistic individual didn't get diagnosed until 11-15+.

If your DD really wants to know, she should go ahead and get an autism evaluation, preferably with someone experienced with autistic females. You need someone to look at the whole, big picture because the individual details out of context likely aren't going to be indicative of anything in particular.

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Also, I missed the added details before they got deleted, but I gather that there's some mental health concerns. We've had a long road with mental health for one kid in particular. The first time he was hospitalized for mental heath stuff he didn't have an ASD diagnosis and he didn't really get the right care. We got him stabilized for a while, but nothing got better and he ended up back in the hospital. Once we got the ASD diagnosis, though, the entire approach to his mental healthcare changed -- and it actually worked! He's doing rather well now, all things considered. Mental health is hard to address properly in an autistic individual without acknowledging and adjusting for the person's neurology.

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I haven't known how to ask this on this forum without being seen as ignorant or obtrusive. Please don't quote and be gentle.  Just a bit of background:  husband has a niece about the same age as our daughters. We live very far apart, so have only seen each other  1x a year or every few years.  From the very beginning, this niece was prone to tantrums while at family gatherings (don't know about anywhere else.)  As the babies became young children, she was always the difficult 1 in the group and basically tolerated  since visits were only about a week long. We always looked forward to seeing them, but always ended our visit scratching our heads about her. Never a warm fuzzy socially  when we were at their house. Since she has grown into young adult-hood, she found her own way to handle family gatherings, by going off to her room. She claims she is vegetarian, (maybe an acceptable way to say she doesn't tolerate certain foods or textures? ) so her meals were not always the same as ours. These are just a few observations I have seen, although there are others. 

We always thought she was difficult, but now that I look back and see other ways in which she has been awkward for her age, I am beginning to think she is on the spectrum. If she is diagnosed, idk if it was shared with the rest of the family, or not. Since we live away from everyone else, we may have not been included in the conversation.  My background is in special ed. Autism was just becoming more known when I stopped teaching to raise my family, so it wasn't something I knew a lot about, especially in girls. Given that, I may tend to see more than others do in kids. The last few times we have seen the family, it seems like she does the polite thing and fixes something to eat while we do the usual hello, how are things with school, etc. I feel for her, as I don't think this is something she especially enjoys, and there is never any reciprocation from her. (I am learning on this forum that we can not always guess when someone on the spectrum is anxious, so I have merely guessed.) 

We may be getting together this summer. I know there is nothing I have' to do about knowing, it just seems like it helps to know how to interact, or not with people on the spectrum.  Her parents are very intelligent and 1 is also a teacher, so we have some commonality there. I sometimes have wondered about other people in the family, and it would seem to help if we really knew, but I am not going to come out and ask.    Any enlightenment you can give me on this topic? The families often do things together, but they have been known to go off on their own for a day or so, leaving us to scratch our heads like, oh, that would have been fun to do with them.  But if it is needed as a 'break' from social interaction, I get that.  My kids are old enough to understand different needs, but it seems like if we know there is a label, ok, we know why she interacts or not, the way she does...again, not trying to be insensitive here. 

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Both my adhd'er and my newly diagnosed Aspie struggled with family get togethers, meltdowns, retreated to quiet zones MUCH more frequently than did their cousins. But if you are not super close it sounds like a pretty personal subject to bring up. Or maybe there has been a diagnosis but it's not something they are sharing.  I know I had the choice to share or not share with my sister (whom I'm not super close with).  I decided to let my mom tell her when they talked.   But my son really lands so far in just the quirky side so he can choose to divulge or not when he likes.  

 

Just being aware that sensory overload is a struggle for many people is helpful.  So many families make plans for all day interaction, or day trips out to loud events followed by dinner and hanging out at night, and kids are usually expected to just go along with it.  

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To the original poster @kand,  my son was recently dx'ed and he was the most wonderful baby on earth.  He is a twin and his sister was the bane of my existence, crying non stop, being just generally unhappy and cranky.  We didn't have the energy to get the the root cause (twins PLUS husband deployed, fun!). But my son was so smiley, so easily made happy, hit all the milestones,  eye contact all the time.... And then around age 3 1/it was like their dispositions switched and suddenly my daughter was so easy going and he was NOT.  Like, he could still be happy, but he became for the most part very negative about things and he started showing anxiety.  Not extreme, but always underlying.  He did ok during school but there were things I always noticed and just automatically tried to help him with to smooth things over -- trouble with finding things to do during playdates, struggle with imaginative play (though he WOULD do it with his sister, it was never his choice). He just never adapted well to situations or different groupings of kids.  I always assumed it was the gifted aspect (he didn't enjoy playing things unless they were strategic board games or involved math). But now I see it as a rigidness -- he would rather not be friends or hang out with someone based entirely on what they were planning to do.  Like it might have been a week since he played with friends online, but if they all said they were going to play a certain game he didn't feel like playing, he just wouldn't join.  

The thing that trigger the dx was two fold -- one, he was feeling constantly overwhelmed and overcome with emotions.  They were so big and made him feel out of control.  He knew his sister has ADHD and struggles with her emotions, so he thought maybe he was ADHD as well.  But for us, we noticed around puberty that while his sister seemed to be starting to get the social clues and be very aware of the dynamics of conversation and mood of those around her, he was struggling and even reverting to needing MORE from us, more routine, more scaffolding for everything.  Conversations became more one topic (video games). It was so noticeable, and even when we tried to get him to converse about other things he would usually just not respond. So we got the diagnosis and here we are.

I have read that sometimes people seem to "regress" when they get their diagnosis -- when in actuality it might mean that they were masking so hard before and now they feel able to let the mask go.  I wouldn't think it would last forever,  but maybe she is still processing.  BUT the internet is TOXIC and can lead to ruminating thoughts.  The time my son spent on the internet last year was not healthy and he lost a lot of sleep and happiness.  We have really worked as a family to fill his time with other, more fulfilling avenues.  It has been exhausting sometimes, but he is a lot less anxious and seemingly focused on his own issues.  Demands still stay low, though.  He is probably the smartest one in our family, but he doesn't like having anything in the evening, and he dropped all of his school extracurriculars (they were all virtual anyway and it was too nerve wracking).  He only has TKD in the evening, and even struggles with that.  He enjoys it, but having it in the evening really throws him off.  He could be so much more, but honestly that's not his burden to bear right now.  Just because he is smart enough, doesn't mean he has to, and it is the expectation that he has to be MORE are what really shuts him down.  Fewer expectations = contentment. 

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2 hours ago, ***** said:

it just seems like it helps to know how to interact, or not with people on the spectrum. 

You already know how to interact with your person. 🙂

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3 hours ago, SanDiegoMom said:

Just being aware that sensory overload is a struggle for many people is helpful.  So many families make plans for all day interaction, or day trips out to loud events followed by dinner and hanging out at night, and kids are usually expected to just go along with it.  

Ugh. Yeah, that's a big one. I got SO MANY guilt trips as a kid/teen for needing down time. It made me sullen and uncooperative basically always, when I would have actually been quite tolerant of a fair amount of together time! 

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@***** I can tell that you genuinely care about your niece and being able to relate better to her. Family dynamics are often tricky, and I agree with you that you shouldn't come right out and ask if there's been a diagnosis. It's natural to wonder. My DS got his ASD diagnosis at age 15, and we did not tell extended family, even grandparents. Not because it is a secret or something to hide, but because his diagnoses are not their business, even if they wonder. I know that sounds blunt, but it's just true. If he wants to share someday that he has autism, it's his decision. I'm sure my extended family may wonder even more after he graduates from high school and takes a different path than his siblings and cousins, and I hope that my family will not judge, keep their thoughts to themselves, and just love him as he is, as best as they can.

I'm sure that lines up with what you already know and is nothing really new or helpful for you. I think you just need to keep caring and connecting in whatever way that you can, and try not to be disappointed if she responds in ways that may seem uncomfortable to you. I wish there were easier answers, but this is all I've got!

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