ASD and preparing to leave the nest...

[BlsdMama]

We've thought DD (16) has Aspergers pretty much her entire life... at least by the time she was 2-3.  About two years ago, we decided to go through our university to see if that was true.  They said the diagnosis could go either way - ASD or anxiety.  They chose anxiety because she acts differently at home with us rather than in public, i.e., her comfort level.  I believe this to be a false way to determine, most especially in young women, but I tell you this just for pertinent background.  FYI: She is a senior this coming year.

She needs an incredible amount of "to herself" time and I'm trying to determine the health of it.  She meets and exceeds all academic expectations.  She is homeschooled, but until Covid, took a couple classes at our CC and two classes with a teacher at our homeschool program.  The teacher is a friend and connects with DD and DD genuinely likes her and feels comfortable talking/sharing in that class to some degree.   Her CC classes have been successful in that she enjoyed the teaching and the writing/work.  She missed two deadlines in one (misunderstanding of time of due date) and did not contact professor to ask if she could turn in the assignment anyway, hence a B+.  She took a History class and an Environmental Science class with success.  The Sociology class was difficult for her. The teacher wanted papers from the perspective of a college student, such as drinking and peer pressure... As the (at the time) 15yo homeschooled kid she had zero experience to offer and he felt her papers were impersonal.  (She is most comfortable writing either fantasy or research papers.)

We are prepping for her senior year here.  She is registered for Comp 1, Biology, and a history course at the CC.  Two are online and the other is a hybrid with a lab.  Due to Covid, it will not be face to face teaching.  She'll do fine.  
Our questions are largely this year and beyond.  Her "escape" is watching people watch movies and make commentary.  She likes seeing their reactions.  She could watch these several hours each day.  I think if I suggested a reasonable limit/schedule, she'd be happy to comply and I just want to help her set healthy boundaries.  Suggestions? She's recently become fairly controlling about her food intake and it concerns me. She is a person who, when armed with knowledge, will make her life comply.  Thinking of suggesting a book or two to emphasize healthy eating. 

I'm wanting to equip her for a healthy college life.  She has people who will ask her how she is, make small talk, etc., but no close friends.  She decided not to do play last year as part of the choir and this year the homeschool play will be very different from previous years (traditional/tryouts, etc) so she is not going out.  I think perhaps she would love something physical like martial arts that would help a healthy transition.

All of our other kids began a job their senior year so we could help them learn to juggle life/work/school balance. We are trying to think of a job that could be low urgency and a gentle introduction to this. As we go into this year, I have expectations that her ACT/SAT is going to be sky high so she would be offered solid merit scholarships by our state schools.  However, has anyone done this with regrets? I cannot fathom her functioning well in a dorm setting.  DS (now 21) was incredibly social and decided to have a single dorm his second year for less chaos.  But if she did that, I doubt she'd make friends on campus.  We have a solid CC about 25 minutes away. The state flagship is almost an hour but she prefers a different state school who offers her two biggest interests - architecture and veterinary science.  It's 2-2.5 hours away. She is just beginning to drive and is very tentative.

I guess my questions are: What can we do to begin laying foundation for success? Schedules? Considerations?
How do we discern whether or not the U is a good idea compared to CC for her freshman year of college? 

[kbutton]

1 hour ago, BlsdMama said:

We've thought DD (16) has Aspergers pretty much her entire life... at least by the time she was 2-3.  About two years ago, we decided to go through our university to see if that was true.  They said the diagnosis could go either way - ASD or anxiety.  They chose anxiety because she acts differently at home with us rather than in public, i.e., her comfort level.  I believe this to be a false way to determine, most especially in young women, but I tell you this just for pertinent background.  FYI: She is a senior this coming year.

So, most of what you describe to me sounds like ASD, not anxiety since you didn't mention big red flags for anxiety other than being not contacting teachers/offering up her thoughts in class, both of which I can think of explanations for that don't involve anxiety. The contacting teachers--could be a lack of confidence or could be "didn't occur to me" or "I didn't know that was okay" (that is more ADHD or ASD). There are NT people out there with individual ASD type traits, and I am going to answer from the perspective of being someone who has some our your daughter's traits and having a friend or two from college with them as well. We're both NT. I have one of the more rare MBTI types which explains a lot of my preferences. Her success later on will be how limiting these traits are all mixed together, not so much about one trait or another. 

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She needs an incredible amount of "to herself" time and I'm trying to determine the health of it.  Our questions are largely this year and beyond.  Her "escape" is watching people watch movies and make commentary.  She likes seeing their reactions.  She could watch these several hours each day.  I think if I suggested a reasonable limit/schedule, she'd be happy to comply and I just want to help her set healthy boundaries.  Suggestions? She's recently become fairly controlling about her food intake and it concerns me. She is a person who, when armed with knowledge, will make her life comply.  Thinking of suggesting a book or two to emphasize healthy eating. 

To herself time is a big introvert trait, and some of us take it to different levels, lol! Some of us cope by losing sleep or saying no to things others enjoy. Some of us use multiple strategies. 🙂 That alone wouldn't worry me, but yes, dorm life can be difficult. 

To me, if she's able to be flexible with her alone time (even if it's not a big preference), it's not that big of a deal. If she tends to rotate through a variety of interests over time, no big deal.  If she is irritable about one specific pass time a great deal of the time, that will be more problematic, and she will need skills to work through that or need to be able to accommodate this need. Also, some people obsession where some people see efficiency or a routine. I remember being labelled something like obsessive by roommates during a summer internship where I stuck to a pretty careful routine. In actuality, I devised the routine to be less disruptive to the other people I was living with--doing what I needed to in the kitchen when they were less likely to need it, etc. It was a long, annoying summer with double standards and lots of discourtesies from roommates that, ironically, were often more rigid than I was. 🙂 

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The Sociology class was difficult for her. The teacher wanted papers from the perspective of a college student, such as drinking and peer pressure... As the (at the time) 15yo homeschooled kid she had zero experience to offer and he felt her papers were impersonal.  (She is most comfortable writing either fantasy or research papers.)

Personal papers are intrusive. They just are. It's okay to not like them. I consider personal papers, journaling, etc. to be emotional rape. No one is entitled to originality or insight from me as an assignment. Analysis? Sure. But at some point, it's not like I'm the first person to have had to think about this--insisting on originality or insightfulness is a bit irritating. Other than on the boards, I don't tend to share my thoughts with strangers, lol! 

I wouldn't have been able to write a personal paper from that perspective either, and I was not homeschooled. Some people are not really swayed or influenced by peer pressure. Some of us wish we could be more go with the flow, lol! 

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I'm wanting to equip her for a healthy college life.  She has people who will ask her how she is, make small talk, etc., but no close friends.  

That's also okay unless she feels bad about it. One of my college friends was this way, but by the time we graduated, she had a couple of close friends. Even then, doing things together all the time wasn't necessary. 

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All of our other kids began a job their senior year so we could help them learn to juggle life/work/school balance. We are trying to think of a job that could be low urgency and a gentle introduction to this.

Something with either flexible scheduling or predictable scheduling, especially if the schedule is published in short increments. The job won't matter as much as the schedule, IMO. I had a job in high school where if you played sports, they would work around your sports schedule without question, but if you didn't, asking for a specific evening off meant you got crappy shifts for basically weeks at a time. The schedule came out weekly and went from Sunday through Saturday, so I could never make weekend plans with my family without being a nag. Family events were important to me, so this was a major source of stress. I also missed a fair amount of church even though other people were allowed to ask for Sundays off. 

Once she's at a point she could do this, I strongly suggest having her apply to be a grader or a TA. My introverted friend that didn't need a lot of people did this very successfully.

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I cannot fathom her functioning well in a dorm setting.  DS (now 21) was incredibly social and decided to have a single dorm his second year for less chaos.  But if she did that, I doubt she'd make friends on campus. 

She might make friends in classes with people who have a common interest. She could join an organization that does volunteer work. She could get an on campus job.

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We have a solid CC about 25 minutes away. The state flagship is almost an hour but she prefers a different state school who offers her two biggest interests - architecture and veterinary science.  It's 2-2.5 hours away. She is just beginning to drive and is very tentative.
 

I can't help much on this one as I went to a small school and lived in a dorm.

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I guess my questions are: What can we do to begin laying foundation for success? Schedules? Considerations?

Try to help her be flexible within whatever limitations she has. None of her issues sound like something that she can't overcome from the way she described them. Make it okay for her to be herself, but help her gain new skills where needed. I would focus on broad skills, not specific ones, unless she has some really specific struggles I'm just not seeing from your description (meltdowns, obsessive behavior, rigidity, inability to problem solve, etc.).

[PeterPan]

The anxiety vs. ASD thing is a false dichotomy, as you say, because it can be BOTH. Did they do pragmatics testing? And just honestly, are you considering meds for the anxiety? This would be the year to work out meds. What I find with my ds ASD2 is that with meds his anxiety goes down and his ASD becomes more apparent. What I find with myself is that meds were a tool to help me turn the anxiety symptoms on and off to actually feel them. If she's on the spectrum, we would anticipate deficits in interoceptive awareness. https://www.kelly-mahler.com/what-is-interoception/ 

So the two top things you can do to get her ready are improve her interoceptive awareness and get her on meds for anything she needs meds for. Interoception improvements will help her *self advocate* and realize how she's feeling in stressful feelings to problem solve. Really hard to problem solve when you don't know what your problem is. So there's never too much working on self-awareness and self-advocacy.

Ironically, getting the anxiety diagnosis *may* be more useful in a dorm setting than the ASD. Your doctor can write you a letter stating limited people in the dorm. You should DEFINITELY take that. She will still be able to find people to hang with based on like interests. I keep up with a whopping *two* of the people I roomed with through college and grad school (out of 10 people). The strain of having random people and those dynamics is not worth the benefit. If she finds *one* person she is compatible with, she could try that. My dd uses dorm accommodations and has always had only one roommate. The stupid university thought roommates ought to be this "learning" experience, so they'd give her upper classmen, people who were totally different. FINALLY they gave her someone who was actually peas in a pod. They could ignore each other happily in the room and it was tolerable. So no, don't force the roommate thing. Get the paper trail for dorm accommodations.

How are her emotions and sensory? Is she very hyperaware or hyporesponsive? My dd is so so over-responsive, being on campus with lots of people basically kills her. She's not wanting to go back into that for her last year but will try to live off campus. Me, I was the total opposite, largely oblivious. For me, dorm life was *superb*. Food comes on conveyor belts, everything is predictable. I do great on cruises, in hotel rooms, anything that is small, consistent, and doesn't require me to clean or cook. You'll find other people saying this too. This is a great book and she talks about university life https://www.amazon.com/Pretending-Normal-Aspergers-Syndrome-Spectrum-ebook/dp/B00N18C0OW/ref=sr_1_1?dchild=1&keywords=pretending+to+be+normal&qid=1590593739&sr=8-1

Sounds like her academics are fine. Why martial arts? Does she want that? I lifted in high school, didn't have much time in college, and started again as an adult. Weight lifting is way better for calming your body and feeling good. 

1 hour ago, BlsdMama said:

Her "escape" is watching people watch movies and make commentary.  She likes seeing their reactions.  She could watch these several hours each day. 

So you've got two things there. Obviously screen addiction can tank her. That's a problem we didn't have in college, lol. But also, it sounds like she's trying to solve a problem she has with nonverbals. Have you thought about not graduating her and instead giving her another year of serious intervention for nonverbals, social/pragmatics, etc? It sounds like she's young and there's little benefit to launching early when she could continue taking things at home. 

RDI https://www.amazon.com/s?k=relationship+development+intervention&crid=I8Y0VWHWA6TX&sprefix=relationship+deve%2Caps%2C159&ref=nb_sb_ss_i_1_17

Also consider an SLP or psych to work with her on social/pragmatics. You could look into OT to work on the interoception. In it's 3rd phase, interoception has them applying it to other people, looking at their bodies to realize what others are feeling. To me, she's showing she wants to know more about herself and others and understand, so you could up the explicitness of that instruction. 

Has she considered looking into drama? That would be another way to get instruction in these things. Drama and also Comm classes. They'll actually have classes in nonverbals, conflict management, interpersonal skills, etc. It doesn't sound like she knows what she wants to do, but she could study those things while it's coming together.

https://www.ocali.org/project/tg_aata/page/elsa_documents  This is for your information. It's an employability skills checklist, and honestly you want to do it, just to be sure you're catching things. Personally, I would consider myself exceptionally hard to employ. I was great in college and grad school, but you would have a really hard time with me at a job. I think I would either work Chick fil A (positive atmosphere, closed on Sunday because I'm really rigid about that), or I would get an additional degree and do consulting that would allow me to work my own schedule and own way. No matter what the IQ, you have to be really honest about employability, or you can have someone with a degree or multiple degrees who CANNOT WORK in that field. Some people make it work, using their degree to spinoff a different direction, but it can be a very expensive mistake. I would not allow her to go into debt for college, because of the potential employability issues. I hear you on scholarship, so hopefully that works out. Just saying. If she takes out minimal debt, you're ok if what she ends up doing afterward isn't what you/she expected.

[PeterPan]

Also, fwiw, I would medicate for the anxiety and do counseling, and then I would go back and re-examine the ASD question when she's over 18 and wants to again. But that time, instead of paper trail, have her just sit and talk for several hours with someone who does a lot of spectrum, especially female spectrum, and let them sort it out. Whoever you saw didn't do enough spectrum, clearly. 

The caveat on the meds is working on interoception as well so she can self-advocate on that and say how they're affecting her, how they're working, etc. Meds are a very personal thing. But treating the anxiety would be the way to tease it apart. What's left is your social thinking and perspective taking deficits, the perseverations, the stimming, etc. You're not likely to medicate that out unless you totally zombie her, which you would never do because you'll be working on the interoception as well. 

2 hours ago, BlsdMama said:

They chose anxiety because she acts differently at home with us rather than in public, i.e., her comfort level. 

I'm confused what this even means. All people are more comfortable in their most familiar environment. My ds doesn't typically use large amounts of echolalia with me, but if someone comes into our home he may have an entire 15 minute conversation in echolalia with them. Sure he has anxiety, but the way it presents is skewed because of the ASD. 

The other thing is that the things the person with ASD + anxiety does are *different* from what a person with straight anxiety does. 

https://www.socialthinking.com/Articles?name=social-thinking-social-communication-profile  Have you seen this doc? Finding where she is in this could be helpful to you in seeing why she could present a certain way. This is not an uncommon scenario where they're looking at anxiety and trying to tease out what to call it and what the social thinking deficits are.

To me, and this is just me, at some point you ignore the labels and you deal with what's really going on. Eventually the labels catch up. So if there are interoceptive deficits,  you address them. If there are social thinking deficits you address them. If there are sensory and self-regulation challenges, you address them. If something needs medication or CBT (anxiety, ADHD, whatever), you do it. You deal with everything you're seeing, irrespective of what psychs are calling it for the global label, because the labels can be wrong or not consistent from psych to psych. When you see the profiles, you'll see a profile could be diagnosed with a wide range of "labels" but the profile and needs and interventions are strikingly similar. 

[PeterPan]

2 hours ago, BlsdMama said:

All of our other kids began a job their senior year so we could help them learn to juggle life/work/school balance. We are trying to think of a job that could be low urgency and a gentle introduction to this.

Best job ever for me was as a teacher's aide in K5 and 1st grade. I got paid to color, say good morning, grade papers...

I also worked in admissions crunching the numbers on transcripts. I was pretty good at that too but I was an odd duck in the office. People complained because I didn't socialize the way they thought I ought and I couldn't figure out why they were socializing when they were being paid to work, lol. A lot about work dynamics is mystifying.

In all honesty, if you know she is going to need support to take a job, you might talk with your county and see about transition services. She may or may not qualify, but it's at least worth a try. 

[Lecka]

I think talking to the teacher about a problem sounds like something to bring up.

There is a category called “self-advocacy skills” and it is things like this.

She needs to be able to do things like that.  Sometime she might need to talk to a boss about a misunderstanding, or a co-worker, and it is similar.  

[Terabith]

I'm absolutely no help and am kind of right there in your position with one kid who is 15 we know is ASD (with severe anxiety) and a 16 year old with anxiety.  Actually more concerned about 16 year old at the moment.  They did three classes at community college, and were fine with in person class but tanked psych once it went all online, partially because stuff came up (couldn't find links to assignments) and they just gave up rather than contacting professor.  I'm actually hearing from parents that this is a huge issue, for a LOT of kids, that they don't know how to call or email when things don't go smoothly because it doesn't occur to them to ask.  That may be an age thing not a disability thing.  

[Miguelsmom]

hat can we do to begin laying foundation for success? Schedules? Considerations?

We moved to a 6 hour productivity schedule for school vs. a regular scheduled day. That way she can manage her work load on her own. We had my son volunteer 20 hrs a week vs. work because volunteering is more flexible. Will she have to work while at school or can she just focus on school and work in the summer? If she does then help her find a job (maybe vet clinic or draftsman?)

 

How do we discern whether or not the U is a good idea compared to CC for her freshman year of college?

Apply to all three and go to the school that leaves her with the least debt. for us is online/in person at our local university. The reason why we chose this is because I’m not sure he can hold down a job that is full time, long term. So the least amount of bills the better. So we have had lots of discussions about finance. Maybe have her take a finance class. Does your CC have bachelors degree?