20 year old newly labeled with Autism?!?!

[JenneinCA]

My 20 year old daughter received an official diagnosis of anxiety/depression over the summer.  She had seen a counselor for years before who identified the anxiety but was not able to prescribe anything due to not having a medical degree.  Daughter absolutely refused to even think about meds or talking to someone else.  So I counted my wins and kept going.  Freshman year at college was quiet emotionally difficult.  Sharing a room with someone and schoolwork related stress were awful.  This past summer she was finally willing to talk to a psychiatrist who immediately put her on meds.  The meds worked!  Daughter is happier and calmer and in every way possible better off.  But the psychiatrist really wanted her to have a therapist to talk to at school.  So with some effort my daughter found someone.  A psychologist, the kind with a PhD in psychology.  

This psychologist is in Arizona and we have never met.  My daughter likes her and that is the important part.  But here is the deal...  the psychologist says my daughter meets the definition of autistic.  Many years ago when she was much younger I looked into this.  But she didn’t have enough of the traits.  I finally stopped dealing with getting labels when she was about six, in late 2004.  I decided to just deal with the kid in front of me and hope for the best. The sensory wonkiness that drove me nuts, the total rigidity of opinion, the inability to read emotions or regulate the tone of her voice or tell when someone else is upset or happy or anything like that.... it was real and terribly hard to understand.  But we survived.

So what is the deal?  Did the rules change?  Is this psych in Arizona right?  And more important what does this mean now?  Is it possible that the psychiatrist that prescribed the meds knew this too?

From my point of view I have always known she was different but i was roundly ignored by everyone when I was looking for answers.  She looked at people.  She could cope with social settings, for a limited time with lots of coaching and always with advance prep and an exit plan from me.  And the colossal crying melt downs that no one else had to deal with because she saved them for me. Could I have saved me or her from a lot of heart ache if I had kept trying the get the labels?  Could I have made it better if I had known more?

[Rosie_0801]

Probably not. She's still the same kid you have in front of you.

You could see her challenges. You helped her work around or through them.

In the end, that's all anyone does about it. Whatever "it" is.

[Tanaqui]

Technically, yes. With the DSM 5, the rules did change.

However, it's more likely that your previous diagnosticians weren't really experienced in how autistic girls tend to look. This is a common problem.

Even if having a diagnosis earlier would have helped, it's not your fault she didn't have one and it's all done now anyway. You're off the hook.

[Lawyer&Mom]

Can you use the diagnosis to get her a single room?  Sharing a room was quite difficult for me in college.  I also could have used more help structuring my routines.  Like exactly where and when to study, when to do laundry, when to exercise.  College provided a lot of unstructured time which was stressful for me.  But hey, I didn’t know I was autistic until I was 36, and I made it through okay. Think of it as a blessing that you know at 20.  There is still a lot of support you can give her to help make the transition to adulthood go more smoothly. 

[City Mouse]

My DD made it through school and was not diagnosed with autism until she was like 21. I always suspected, and dealt with her like she was already labeled. The only difference the label has made is some recognition and awareness (by others) of her quirky behavior at work. She could manage and navigate school, but managing the adult world of work has been difficult for her.

[Terabith]

Any recommendations of great people to diagnose gifted older girls?

[PeterPan]

7 hours ago, JenneinCA said:

I finally stopped dealing with getting labels when she was about six, in late 2004.

Well that's why she didn't get diagnosed. Girl ASD is harder to catch and that ASD1 presentation, an aspergers presentation, etc. is often much later, like 10-12 or even teens or adults. 

7 hours ago, JenneinCA said:

So what is the deal?  Did the rules change?  Is this psych in Arizona right?  And more important what does this mean now?  Is it possible that the psychiatrist that prescribed the meds knew this too?

Yes, the DSM criteria changed. You now have a whole bunch of separate labels from the spectrum thrown under one umbrella. They clarified the criteria, so some things, like effect on language, which were part of what distinguished ASD from Aspergers, are no longer in the criteria. So if she had no language delay, she might not have fit an "autism" diagnosis under the DSM 14 years ago but definitely seems to now. It's fine. It's better to know than not to know, and it sounds like she's getting good care now, which is wonderful.

7 hours ago, JenneinCA said:

Could I have saved me or her from a lot of heart ache if I had kept trying the get the labels?  Could I have made it better if I had known more?

On a light note, I'd like to think we'd all be better parents if we had a chance to start over. Nobody is perfect. Also, there just wasn't the kind of helpful intervention then that we have now. So they weren't diagnosing as carefully then and there WEREN'T THE INTERVENTIONS. It probably wouldn't have mattered. NOW it matters. Well maybe it would have then? My dd has a friend who is that age and he got really good intervention. But again, a boy, and probably with effect on language so he flagged earlier.

NOW we have lots of great interventions. https://aapcpublishing.net  Here, you could go to this site and probably buy out the whole store, there's so much great stuff, lol. But all this stuff is NEW! So assuage your guilt. You did the best you could and you can make a difference NOW by accepting what the psychs are saying, doing your grieving privately, and putting your energy into facilitating her learning process.

It will not go away, but it sounds like she's ready to make a lot of strides if she receives good counseling. She might like to work with an SLP and OT as well. It would NOT be crazy to get her an OT! In fact, I'll throw out a crazy idea. If you go over to FB to the Interoception FB group run by Kelly Mahler, there are hundreds of OTs just waiting and salivating to use her new interoception curriculum coming out. Interoception is THE KEY to understanding yourself and why you feel the way you do, which then in turn allows you to make choices to self-regulate better and helps you understand others. It's phenomenal work, and you could possibly find an OT on that FB group who would work with her. It might BLOW HER MIND. She might love it. 

The SLP would be for pragmatics and possibly narrative language. The counselor/psych is probably working on self-advocacy and problem solving. Just keep giving her access to services like that. We never stop learning, so it's not like oh you messed up. It sounds more like she's interested and wants to learn, which is really most of the battle. So many people CAN'T GET their teens to go to counseling and services. Your kid is there! So keep facilitating and she'll learn and grow. We all do. 

[Pawz4me]

My youngest DS, who is now 20, wasn't formally diagnosed until he was 16/17 (I can't remember exactly, it was near his birthday).When he was two he had a multi-professional evaluation and was determined to have some slight developmental delays. For several years he had speech and occupational therapy. Sensory issues were a pretty big problem. He was tested again to see if he qualified for any services before he started public kindergarten. I asked every professional we met if he could be on the spectrum, and they all said no. He was too social, he made eye contact, etc. As the years went by I was more and more convinced that he was indeed on the spectrum, but he got by okay. He's gifted and in his case that was, I'm positive, a big help. Fast forward to his teenage years and he developed fairly debilitating anxiety. His overall health suffered, his weight plummeted. In the course of dealing with that we saw a psychiatrist. I never thought to mention my suspicion that he was on the spectrum, but after meeting with her a couple of times she told me that she was positive he was. From there we went to a psychologist for a full psycho-educational evaluation, so now he has that diagnosis from two professionals. I believe the thinking did indeed change from the time he was a toddler/preschooler until his teenage years. Not only changes in the DSM, but also more general awareness among professionals of how autism can present. And I think with very gifted kids (he's profoundly gifted in some areas), and probably especially with girls, it takes finding the right person to get an accurate diagnosis.

Edited December 18, 2018 by Pawz4me

[Lawyer&Mom]

15 hours ago, nwahomeschoolmom said:

I can relate to this a lot...Undergrad was one of the hardest times of my life.  I did great in grad school since I had structure in my life, was engaged/got married.  Undergrad was awful!  If the OP's daughter can use a diagnosis to get a single room in college, that would be so awesome for her. 

 

Grad school was so much better than undergrad.  Smaller, much more focused programs.  A finite set of classmates and professors.  First time I lived with my parents, second time, in a single room *across the street* from the law school.  I can’t tell you what a difference this made.