ASD diagnosis in late teens?

[Joker]

Dd, 16, is in therapy for what I thought was OCD and possibly ADHD. After some initial testing for ADHD the psychologist had me come in to discuss that she saw a lot of things pointing to autism (high functioning, but still autism). We spent a great deal of time discussing dd's childhood and we're now in the process of testing. I just assumed this was usually always caught much earlier and I'm feeling like such a mom failure right now. 

Is it not uncommon to go this long without anyone saying anything about autism? I have had family members say things about dd before regarding certain behaviors but I've never heard anyone mention autism to me before about dd. 

Also, what would it even mean really to get this diagnosis now? She's developed some good coping strategies in regards to most of school although she really started struggling more with some subjects the past two years.  

Any websites I should check out or books that would be good to read? Any information or advice would be helpful. 

ETA: Dd has had therapists before for the OCD but none were very good. A psychologist finally popped up nearby us on an OCD website so we jumped on it. None of the other therapists ever tested for anything but this one started the ADHD testing after a few sessions because she said she saw more ADHD than OCD. There is definitely ADHD but she said there were many red flags pointing to ASD that she wanted to check out before coming to a firm conclusion. 

[Heatherwith4]

 I don’t have a lot of information about it, but my nephew was not diagnosed with ASD until his freshman year of college.  I think my SIL felt some mom guilt, too.  But they just didn’t know before for some reason.  

[Jean in Newcastle]

Ds was diagnosed with ASD at age 16.  He felt like it was a relief because it explained a lot of things for him that he had noticed on his own.  You can't use testing prior to around this time for accommodations in college so I waited on purpose. 

[Storygirl]

There are a few moms on the boards who have had teens diagnosed with ASD. I may be one of them one day, because one of my sons has spectrum traits and a list of other diagnoses but has not been fully tested for autism yet (it was ruled out by a previous neuropsych years ago who only ran a screening tool).

So it's not uncommon. And especially for girls, who tend to be diagnosed later and exhibit traits not always identified as being related to the spectrum. If you do an internet search for autism and girls, you will find some things about this.

In fact, we have had multiple psychs tell us that DS does NOT have autism, just based on their opinion, but none of them have run full evaluations to see if he meets the criteria. It can be really hard to tell, based just upon observation, without running testing. This is why so many people with high functioning autism can pass through life seeming neurotypical to most others that they interact with.

It's helpful to have the diagnosis, I think. It's good for her to understand herself as well as she can. If she goes to college, she may be eligible for some accommodations, depending on what her evaluations say. And people on the spectrum have a harder time holding down jobs and may need assistance from state or county vocational rehabilitation. Having the diagnosis opens these doors to help. Although people with autism can be social, they may also have social quirks that make personal and work relationships more challenging. People who are known to have autism sometimes get a "social pass," meaning that once people realize they have a disability, they may be more accepting of differences. There may be times when revealing the diagnosis is helpful.

There are some areas of education that are common trouble spots for people with ASD, so it would also give you or her teachers (if you don't homeschool) the opportunity to provide purposeful intervention. Reading comprehension, for example, can be troublesome. Knowing the root cause can help you target the kind of help that is needed.

Also, because ASD can/does include perseverative thinking, it may be helpful for the counselor to be able to consider whether the things she is seeing in therapy are part of the OCD or perhaps are related to ASD.

It's normal to be nervous about new diagnoses, but I really think there are positives to knowing.

It's also normal to feel the guilt, but it does not mean you did anything wrong at all. You are just getting new information now that you didn't have before, and going forward, you will be able to see some things differently and understand more about the root causes.

If you look in at the Learning Challenges board, you may find posts that help you. And feel free to post over there, as well, if it would help you. I find the LC community to be a great support for me.

 

Edited March 20, 2019 by Storygirl

[JenneinCA]

My daughter was 20 when she got the label.  It happens.  You are not a bad mom.  

The diagonistic criteria has changed.  Your daughter may not have gotten the label if you had asked when she was little.  Mine wouldn’t have.  The rules were different.  She hasn’t changed from the person she was, but understanding and support is different now,

Edited March 20, 2019 by JenneinCA
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[gardenmom5]

realty is - girls are often missed.  I think it's great they're catching her in her teens.  I'm on a women with asd group, and many of them were well into adulthood.  my daughter was in her 30s when she was diagnosed with asd.

 

eta: girls often present differently than boys - and those who are doing the testing, are familiar with male asd traits. girls may or may NOT display any of the same traits as boys.  part of the reason girls are missed.  like women and heart attacks - presentation is different, and medical providers are taught how males present because they think it applies to males and females.

Edited March 20, 2019 by gardenmom5

[PeterPan]

Teens, adults even get diagnosed. It's good that the person caught it. I think (and this is just me) that it's good to embrace it and start looking for what it means and where those holes are and what tools can be given to them. I'm reading this right now                                             The Eclipse Model: Essential Cognitive Lessons to Improve Personal Engagement for Young People with Asperger Syndrome, PDD-NOS                                       and it's pretty sharp. Also the Social Thinking site has a lot of good stuff. 

It's hard as a parent to get the diagnosis, but getting it for her MEANS YOU'RE A GOOD MOM. And what you do next, beginning to advocate and figure out what she needs and help her get empowered and not letting people making idiotic statements about her not needing intervention because she's so whatever will show you're a strong mom. You've got this. She's the same child she was yesterday and everything is going to be fine.

PS. If she wants the best book on conversation, check out this                                             Talk With Me: A Step-by-step Conversation Framework for Teaching Conversational Balance and Fluency                                       

Edited March 20, 2019 by PeterPan

[Pawz4me]

DS20 wasn't formally diagnosed until he was almost 17. I was 99 percent sure he was on the spectrum from the time he was about 18-24 months old. He had lots of struggles as an infant/toddler, and we spent lots of time in private OT and ST. But most professionals back then (including his pediatrician) said he couldn't be on the spectrum simply because he made eye contact. Of course the thinking on that changed a LOT in the meantime! I didn't push it because we were homeschooling and mostly he did okay. Fast forward a bunch of years and he started having significant issues with anxiety. After the psychiatrist who he was seeing for that met with him a few times she told me "I think he's on the spectrum. No, I'm positive he is." I told her I wholeheartedly agreed. From there we went to full psycho-educational testing with a psychologist (the psychiatrist can give a medical diagnosis, for any educational accommodations a full psycho-educational assessment is needed), and he now has a paper trail that says he's both on the spectrum and gifted. I don't think it's unusual for gifted kids who are on the spectrum to be diagnosed later. In many ways their giftedness allows them to compensate. And from what I understand that's especially true when the kid in question is a girl.

Reasons to get a diagnosis now include helping her understand herself better (especially as she enters adulthood where more and more will be expected of her socially), and to have a list of accommodations in place just in case she needs them if/when she goes to college.

[itsheresomewhere]

The fact that you have been actively getting help for her OCD shows that you are a great mom and no mom guilt needed for this.  She is lucky to have someone who cares so much that you have sought out different therapists.  You are a great mom.

[Joker]

Thanks so much! It makes me feel better to know being diagnosed in the teen years isn't that uncommon and that there may be accommodations for college. Dd has become really worried about going since she has been struggling a bit these past two years.

I do know the biggest area of concern is that her social anxiety has become really bad lately and even her teachers have commented about her being withdrawn. Dd has never cared that many of her peers find her weird or awkward but her anxiety in social situations across the board is becoming an issue. 

My biggest concern with her has always been her lack of emotion regarding things that are painful or upsetting. She laughs and jokes a lot but she never cries. Ever. I have only seen her cry once since she was about 18 months old. She was actually bit in the face by a dog at age 8 and required an ER visit but she acted like it was any other day. No doctor or therapist seemed to care that much about it until now though.

So many of the things in Stella's post ring true though, especially the escape into fantasy parts. She daydreams a lot. It's actually something she has asked the therapist for help with because she seems to be having trouble controlling how often she slips away - especially in class. She even has binders of stories and pictures about her make believe world of animals. 

I honestly thought she was just a quirky kid. 

[PeterPan]

5 hours ago, Joker said:

My biggest concern with her has always been her lack of emotion regarding things that are painful or upsetting.

You're opening a more complex can of worms than you realize. It's normal to have a flat affect in autism, so I wouldn't necessarily assume the emotions aren't there. However there are issues with interoception (her self-awareness of her body and emotions) and that's a really up and coming thing now to be working on. Here's the info you want for that https://www.kelly-mahler.com/what-is-interoception/  I would start with the Interoception Awareness Assessment, which is $25 or less directly from AAPC, administer that, and see what you think.

I mentioned that ECLIPSE model book. It talks about and some other places I've been reading talk about the idea of knowing when to do therapy in a group vs. individual, how to know when you're moving forward or need to back up to more foundational skills, etc. So if she has been in therapy with psychs for 2 years and isn't making progress, then maybe she has LANGUAGE issues holding her back. It's just a thought. Language (significant effect on verbal communication) is part of the federal definition of autism and the deficits can be subtle or unrecognized in really bright kids. It doesn't do them a service if language issues are holding them back and we say oh we didn't need to test for xyz because they have a high IQ. That's not where the evidence is. 

So just my two cents, but I would not discount your own ability to help her make some progress if you get good materials and tackle foundational issues. I think on the anxiety, again you have an onion of layers to peel back there. It could be actual physical, chemical anxiety, so sure consider running genetics to identify the cause or using anxiety-appropriate strategies. But also she could have some real deficits that are becoming more apparent as the DEMANDS of her situations are increasing. So then identifying what those deficits are (social thinking deficits, etc. etc.) gives you a way to start working on moving forward.

So back to your comment about lack of emotion. Hypo-responsivity is so, so common. This is just my advice, but I think it's less helpful to worry about what other people think of that (which as she rightly points out ISN'T the biggest issue) and to focus on HELPING HER LEARN ABOUT HERSELF. The more she takes ownership of this and begins her own journey, asking questions, learning how to find answers, connecting with sources she feels comfortable with, the better. 

If you can find an OT who is engaged with the interoception issue, it might be a great way to open the door for her in that self-discovery. Once she works on that and improves her own connection to what she is feeling, she'll go through the stages of the curriculum and come out in phase 3 applying it to others. Then she'll go oh my lands and realize she could use Social Thinking materials. She will have the questions at that point.

5 hours ago, Joker said:

She daydreams a lot.

I forget, did they diagnose the ADHD? Does she want meds? She may also just flat be bored or need to do more for her body to help herself stay regulated. The more engaged she is, the easier it will be to focus. Is she complaining about anything like background noise or headaches? That also can be a factor.

5 hours ago, Joker said:

She was actually bit in the face by a dog at age 8

Ok, now I'll throw out something for you. That is trauma, actual clinical trauma, and she probably would benefit from doing some work with someone who specializes in trauma. You can have trauma ON TOP of the ASD, and they really are kind of nasty together. The trauma causes shutting down and pulling in and disconnection (from yourself and others) and the ASD of course by its very nature is already hypo-responsive and falling into the aut. So what she *might* find is that if she does bodywork for the trauma, it will also springboard her interoception and thus improve some of the things that as a mother were bugging you about the non-responsiveness. If you DON'T clear out the trauma, it will be there, holding her back. 

Here's a pretty up to date book on trauma and the effects and options.                                             The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma                                       Mahler behind the Interoception stuff is very interested in trauma also, because the populations and needs and methods overlap. You can post on her FB and gab with her. I highly recommend TRE, because that was what a counselor had me do. It will work for both trauma that she has memories of and trauma that was even pre declarative memory. You can find someone to do it with her and let her work through it if she will. Or don't. I'm pretty private so I never actually did the TRE with a person. The counselor told me to do it, so I went home, watched the videos, did about 40 sessions of it, talked through with the counselor things that came out of it (they were pretty intense feelings), and that was that. But I can tell you that after I did that trauma work my friends commented on the change because it was so radical. I had been like a ghost, flitting through the Y, through life, and suddenly I had 20 friends and knew about people's grandkids and it was crazy. My guess is you and she will be blown away by the progress she could make by working on that trauma.

This is the video I used to learn to do TRE. 

 

Edited March 21, 2019 by PeterPan

[PeterPan]

5 hours ago, Joker said:

I honestly thought she was just a quirky kid. 

You've heard the joke that if you're rich and british you're eccentric and if you're poor you're on the spectrum...  

I don't know if anyone has already said this, but it's normal to go through stages of grief with this, and it's healthful to do that. Like it's fine to show her these posts, but also give yourself time to down a pan of brownies and cry and grieve and be honest. HAVE YOUR SPOUSE GRIEVE. Like really let it all come out. If you go through the stages of grief and the other person doesn't accept and maybe stays at the denial stage, it will create a lot of problems. It is a grief, a loss of what you thought was going to be or what you thought she was or whatever else. The new reality will be good and fine eventually, but for now it's healthy and ok to grieve. 

Then, when you're ready to funnel that energy to work, yeah of course she's quirky!! LOL I mean, what a hoot. You were mentioning her drawings. Definitely she needs to connect with people of similar interests. Maybe she has some interests she has hidden or not felt like she could pursue because of the american obsession with being so diversified. Ask her what she'd like to CHANGE! Might get interesting if she becomes more aware and realizes things about herself. Some people actually embrace their ability to have strong, unique interests and make it work for them. 

[Chris in VA]

Ds went thru a neuropsych when he was 6, and they did not find he had autism. We specifically went for a diagnosis ahain when he was about 9. Still no diagnosis of autism. Then college--and while counseled for something else, he was offered the Aspie/autism diagnosis.  It was a huge "duh" moment. I kinda knew much earlier, but we didn't tell ds. 

Know what's interesting?  I am on tbe spectrum, too. As a girl with autism but no formal diagnosis, I mask a lot. I only put a name on it when I did more research on ds. I had no idea of the why behind certain thought patterns and behaviors. My husband and my parents don't believe me,  but I fit pretty squarely in the criteria. For my parents, it would feel like a failure for them to admit it. They already feel horrible that my brother had a genetic disease and blame themselves for that. 

Anyway don't beat yourself up at all.