Teen girls diagnosed later with autism — how is she doing now?
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Anonymous
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I’m hoping to hear from parents whose daughters were diagnosed with autism in late elementary, middle, or high school rather than in early childhood.
What led you to seek a diagnosis when you did? Were there subtle signs in younger years that, in hindsight, might have pointed to autism? Did the symptoms start becoming more obvious as school and social demands got harder? What did you notice that made you finally pursue an evaluation? How is your daughter doing now — in high school or college? How are friendships, academics, and daily independence? For example, is she managing her own schedule, homework, self-care, or other responsibilities on her own? Has the diagnosis helped with self-understanding, anxiety, or navigating social situations? What does she still struggle with most right now? Looking ahead, what are her goals for the future — college, career, independent living? How are you supporting her in reaching those goals, and what challenges have come up along the way? It seems like autism in girls can look very different than what many of us expect, and later diagnoses can bring a mix of clarity and new challenges. I’d really appreciate hearing your experiences — both the successes and the ongoing struggles — at this stage of life. |
Anonymous
oof, I could write a book 
MY DD was diagnosed at 16, after years of all the things -- anxiety, depression, SI, school refusal. Traditional therapy never really worked. Eventually she stuck with someone, and it helped a little but something was clearly missing. Good student, good grades, had friends but it was always a source of stress. in 9th grade, new school, new kids, new pressures, things got a lot worse. Still, no one (including us) ever thought autism. After a particularly bad stretch, her therapist and psychiatrist both suggested BPD was possible and thankfully got her a great DBT program. It was that team who after about 3 months said.. we're thinking she should be evaluated for autism (They are pros, they didn't say it exactly like that.) Long story short, we went from -- um WHAT? to.. omg it's so obvious. And in hindsight -- I can see it all the way back to the toddler years, and honestly, even infancy. While hard, of course, it was a relief to her. It explained so much. Just one example, the intense "panic attacks" and extreme disassociation were actually prolonged, intense autistic burnout after years of masking. Fast forward 2 years -- it has of course been so so hard, and she/we have done A LOT of work. There are so many successes.. unmasking, much better emotional regulation (so much better.). And I am so thankful she was diagnosed at 16 rather than 24 or 40 as often happens for some women. But I wish there was more time.. as she prepares to head off to college, her dx informs a lot of that process.. and I'd give anything for another year or 2 for her to build her life and skills to set her up for success. Will she lead her best life? Definitely. Will it be hard and will there be many, many bumps? Oh yes. Will she need more "help" along the way, maybe even forever? yes. Will the next 4 years look different for us as a family than many of our friends and their college kids? yep. That's part of the work we as parents have done and continue to do - being okay with that. Racial acceptance is my best friend
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Anonymous
| PP, how did they know it was autism versus BPD, etc? Especially if she has friends? I thought challenges in social communication was a hallmark of autism. My own DD has been evaluated several times and they always say she is too interactive/demonstrates reciprocity too well to be autistic, but then I’m so puzzled when I hear of others who might even have active social lives who are diagnosed - both here on dcum and in our own circle. It almost seems like it all boils down to where you are evaluated. |
Anonymous
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Here's our story:
1. DS: I knew my son was high-functioning autistic since he was little. He was diagnosed very late, because his global developmental delay, severe ADHD and learning disabilities masked everything else during his first several childhood evaluations. We were already doing social skills groups, narrative support, and all we could to address the socio-emotional symptoms of his autism, so I didn't lose therapy time with his tardy ASD diagnosis. His childhood was spent in therapies for all his needs, and he worked really hard to get into college. He's academically successful but totally asocial and has no friends, which hurts him professional and privately. He doesn't know how to network. He might not ever get married. 2. DD: this year, at 15, and with her older brother as comparison, she asked to be evaluated for mild ADHD. She was diagnosed with autism instead. We were all very surprised, but in hindsight there were subtle signs we did not connect to autism: she had selective mutism in preschool, has always been very shy, but I thought that having one best friend and being able to relate to others showed that she was not autistic. She will have to navigate her social anxiety, but apart from that, she seems entirely functional. Honestly, if this was 20 years ago, I don't think there's any way she would have been diagnosed! 3. DH and I. My husband is similar to my son (no friends, finds it hard to relate to people, but hey, he did manage to be attractive enough to get married!), and I am similar to my daughter (small friend group but tons of social anxiety). It appears we're a little autistic family We are all reconciled to our psychological profiles.
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Anonymous
| ^ and when I say social anxiety, I mean I've been formally diagnosed with GAD and Panic Disorder. It's been challenging to manage at times. Autism always comes with some form of anxiety, but it manifests itself differently in different people. |
Anonymous
What supports have helped most? |
Anonymous
PP here -- she "had friends" but I say that loosely. Social communication is a very clear deficit. She is/was an excellent masker but it took a major toll. |
Anonymous
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We are starting to suspect our 17yo DD may have autism. She is really struggling with anxiety and severe depression, as well as inattentive ADHD, and she’s not getting any better despite all the things - meds, therapy, PHP…
For those who have had a teen diagnosed with autism, how did that diagnosis change things therapeutically? Did things improve after the diagnosis? |
Anonymous
The diagnosis was one thing, but the gamechanger for our teen was DBT. I believe it's the goldstandard for BPD, and now being more widely used for any emotional dysregulation, particularly in neurodivergent young people. |
Anonymous
NP here. I want to thank you so much for taking the time to post this reply. I have been off and on with thinking my daughter may have autism, but everyone always says no. She is too social, talks so well with adults, etc… and I’m talking psychiatrists and therapists with decades of experience saying this. but I see a lot of masking. She also lies ALOT and I feel this is masking as well. To the point she doesn’t know why about even little things and doesn’t understand it. May I ask who your DBT team is? Even if my daughter doesn’t have it, she has ADHD and a lot of missed social cues and plenty of emotional instability. She did some DBT in partial hospitalization and I haven’t found a good program or group yet. |
Anonymous
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Also if ANYONE knows any support groups for teen girls with ADHD/autism, please let us know
It would be so nice for teens to meet others like them, talk in a group setting with a therapist, and even have parent connections if interested. I feel like all teen therapy groups for girls are for ED’s, which is definitely needed, but I wish there were more for ND girls especially ones that are late diagnosed or in denial etc.. |
Anonymous
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My daughter was diagnosed in college. She had anxiety for a number of years and was in therapy (as well as on meds). She was working with a new therapist who did DBT and CBT and after about 6 months the therapist suggested she get tested. I would say the biggest benefit of her diagnosis is that she feels a sense of peace. She's really leaned in to her diagnosis, which I'm not sure is the best but that's not for me to decide.
Looking back there were a few signs she was on the spectrum. She always hated loud noises. But I would say most of the signs didn't appear until middle school. She always had friends in elementary school but as she approached puberty she had more trouble relating to people her own age. I think this is still her biggest issue. She does great with adults, but struggles with her peers. |
Anonymous
FWIW, my now-20-yr-old daughter has mild autism and severe social anxiety. She is/was a decent masker but socially awkward in conversations with small groups and even one-on-one she would get nervous about what to say next or how to read people. But she was socially aware enough and high-functioning enough to recognize her own deficit in this area. When I suggested at 13/14 that we might find a social skills/conversation group therapy-type situation she literally rolled her eyes and said “I don’t think being in a group of people who also have a hard time with this is going to help me be better at this.” And she wasn’t interested in bonding with other people about the situation (her words). So instead I just became her safe place to bounce ideas off of and “practice” cues and expected conventions of conversation that come naturally to most people but needed to be explained to her. To be fair to the parents of kids whose autism manifests in non-verbal and/or little-to-no communicate or ability to function socially apart from mom and dad , I feel like there ought to be a different diagnosis than autism to define her circumstances and others like her. But the struggle she has with social anxiety in particular is definitely real as compared to a neurotypical child. |
Anonymous
| Re "lying".. I thought the same about my DD. And then I realized she was just creating a "neurotypical" persona in her mind, which because of such heavy masking, really did become her realty (in her head.). So she'd describe herself in ways, or talk about things she did, which I knew were totally false. So I called it lying. But it was leaning into this masked persona so she could deal with life. |
Anonymous
| Capital Youth Services. Formerly Rathbone. Very strict adherence to the DBT framework (not all places are.) Time intensive, very expensive. Entire family has to be bought in. And so worth it for us. |