I appreciate this offer as it’s been a lonely place as a mom to feel like no one understands. It’s hard to hear people say things like “many freshmen are homesick, let her figure it out” or when I tell them about her autism diagnosis there’s a smile like they think that’s just a trendy excuse for her behavior.
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Right?! This week started with DD’S car missing after class; it was in a legal lot, but all the cars in the section were gone, and there were orange cones in their spots. We think they were towed mistakenly by a local contract company. You can imagine the fallout. Thankfully I was only 5 minutes from campus; we moved here right before she started school. We bought our retirement home early, so we could be here for emotional support. The one thing I have learned over the last 19 years since her diagnosis is to use each new trigger as a learning opportunity to teach her what to do in an “emergency.” The situations have evolved over the years, and so has my approach to “helping.” It’s now more asking her questions so she can calmly and logically solve her own problems instead of me stepping in and fixing it. I guess you could say I’m more like her ESA at this point 
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This is just a thought.
My daughter who is on the spectrum was waiting last year for the summer to do a medication change. Things took a bad turn during the spring semester with a combination of medical and emotional problems, and I was oblivious. I was seeing her, too, but she didn’t fill me in on all of her struggles because she couldn’t manage to talk to me on top of everything else. Usually, she calls me about everything but she had really shut down. The medical problems eventually landed her in the ER which forced her to open up. I almost wish she had someone on campus who was seeing her everyday to fill me in before things got as bad as they did.
Is there a way the her roommate or another friend could reach out to you if they suspected she needed you? Would the on campus therapist be able to contact you?
It’s a good sign your daughter is seeking help from you. But it might also be helpful if there were someone else on campus as a resource.
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Yes. Monitoring is needed in general and especially for medications. But actually medication monitoring is best done by a doctor and very regular visits. They will insist upon it.
Medication can be so life changing. It seems sad not to harness that option especially when it will take more than the length of a summer to fine tune and figure out the best combo and dosages. It can take up to 3+ months for the full effect of any given medication to reveal itself and for your medical team to respond accordingly.
I know I sound terribly biased but I am for a reason. Hard won, gut wrenching, bring you to your knees experience as a parent of special kiddos.
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I have no personal experience to share, but I just want to let you know that I’ve been thinking about you and your family @hopedaisy and following the updates with interest. You sound like an amazing mom and I only wish that every kid in the world had a parent as thoughtful and supportive as you have been with your daughter.
I also want to thank posters who have shared insights from their own personal experiences as well. It definitely helps to build a supportive community and it serves as a great resource for those who find themselves in similar situations, whether now or in the future.
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I appreciate your kind words and all of the helpful suggestions on this forum. It is so nice to know I am not alone in this experience as no one in my personal world can truly understand the complexities of dealing with an adult child with autism. I have shared somewhat with family but unfortunately received more judgment than kindness. This experience is giving me new compassion in a way for never had before so I guess that is one good thing that has come out of this.
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My heart aches for you. Sounds like she may be dealing with some dysthymia that is progressing to depression. The only way to really nail it down is to get her to a professional. I can only hazard a guess as to where the lack of interest in a future comes from, but I would be suspicious of a depressive disorder. I’m not a professional and this isn’t professional advice. But as a parent, that’s where my mind would go and I’d get her to a psychologist or a psychiatrist.
You are spot on: her mental health right now is what matters. School will be there. A medical withdrawal might be in order, but maybe it can be addressed while she’s still in school.
The one thing about these kinds of challenges is that they are very isolating. Even family can sometimes want to keep their distance, so your experience doesn’t surprise me at all. Someone develops cancer, and the world rallies around them. Mental illness is often, very sadly, a different beast. There was an article written by a father of a bi-polar child entitled something like “I have a terrible wish,” and it went on to make the point about wishing his son had cancer rather than bi-polar disorder because of how the world supports the one and isolates the other. Just know that you and your family are not in fact alone. Other people have had to deal with this and it can and often does get better. I am cynical by nature and I believe in psychotherapy. It works.
Best of luck to you.
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OP- piling on the love. If I knew you IRL I’d be dropping off a casserole with a “thinking of you” note. It has taken me a LONG time to develop the kind of compassion for families struggling with a “hidden” illness that seems to come more naturally when it’s surgery or an infection or whatnot.
A quick story for you (not for the Debbie Downer element, but hopefully for support). A casual friend of mine has a son who was arrested and did hard time when he was a teenager. Not some therapeutic program “to get his life together”, not in-patient rehab, not home confinement- but actual prison. She confesses that had she and her husband been savvier about finding a lawyer, they could have ended up with one of these “less shameful” outcomes- but they didn’t, they hired someone who didn’t know the local court system well enough to negotiate the right kind of plea with the right kind of community service. So their son went to jail.
He’s doing GREAT now. Served his time, gainfully employed, a model citizen.
But she confided in me while he was incarcerated that there was a tiny list of people (her son’s math teacher, other parents you’d run into in the supermarket) who would ask how he was doing. Tiny list. Kid spends his entire childhood in one town and all of a sudden he’s a ghost- parents avoiding her, nobody wants to have to ask “how is Jason doing”. And the few people who did not know where he was, would see her and immediately overshare about their kids SAT scores, tennis championship, getting the citizenship award, being recruited for Track, etc. without coming up for breath. She’d want to interrupt and say “My kid’s in jail, I’m thrilled you’re such a great mom since I’m clearly a lousy one” but of course, you have to endure the bragathon until it’s over…
I learned a big lesson from her. And through the years I have found CC to be that small list. Yes, sometimes you’re enduring an endless list of “my kid walks on water and I’m the parent of the century” types. But more often, you are hearing from “fellow travelers” who have had ups and downs, the good with the bad, some triumphs and some challenges. And for the most part, people are incredibly empathetic in offering ideas, analogies, “maybe you could try this” suggestions. Sometimes they’re off, sometimes they need tweaking, but usually offered with the kind of love that only imperfect people can show one another.
So if we can be helpful- even just to give you the words to use if you need to call a Dean and say “My kid loves college but we need to talk about a medical withdrawal” (yes, those words. Don’t just pack her up and take her home…) then we are here.
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I wanted to update this thread because it seems like when it rains it pours!
For the past two weeks I have been in DD’s college town, helping her navigate getting help and things have been slowly improving. She continues to go to counseling and to her autism and anime clubs where she is also connecting with other students. Academically she is doing so well, even in certain classes notorious for being difficult “weed out” classes (she has all 95’s or higher). We met with the Office of Disability and Accommodations to discuss her having her own room next year because of her anxiety related to autism. I was set to go back home Monday.
What has stressed DD out is that her roommate must go to bed at 9 pm plus her roommate talks nonstop, kind of a stream of consciousness.
This has been a shock for DD as she likes her roommate, didn’t see her having problems until the last few days, but also feels enormous guilt at the relief she feels having her own space. Her roommate’s nonstop talking has been a source of great anxiety for DD and she thought she’d just have to wait until Sophomore year to apply for her own room. Now that might be a possibility much sooner.
I delayed going back a few days so that I can meet with the proper departments in case her roommate withdraws. At this point it would be very traumatizing if DD was given a random new roommate and I want to apply now for her own room due to a disability exemption.
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Thank you for the update. Glad it’s positive for your daughter.
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Hugs, sounds like a lot of challenges but wonderful you are able to be there to help her navigate these steps!
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I feel for you and your D, but I am also feeling for the other girl and her family. Some people can handle this big change with ease, while others need to go very slowly. I hope that both of them will be successful at living with others in the future.
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Is there any chance your daughter can request a single sooner than next year?
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Please be considerate and not share personal details about a minor child that is not your own (and be very careful when posting about your own kid). She and her parents will appreciate it. Several posts edited or deleted.
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I am so happy that things are improving. Connecting with similar students seems to make a huge difference. I am glad this is happening. You have gone above and beyond and are a great parent. Your daughter may not always communicate her appreciation about all of this but I can assure you it means everything to her.
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This is what we are going to discuss tomorrow. Initially DD did not want to move but now with what has happened she’s more open to it.
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So sorry to hear about her struggles. It could be so overwhelming to leave the nest and think about all the years of life ahead. I have not been in your shoes, but I thought I’d add one thing that has been helpful to me and my (non ASD) children. You don’t have to think about the next 50 years. Going through life is like driving a car. You can see some of the road ahead of you and plan your steering for the bit you can see. You can’t see the entire road in front of you right now, but you see it and adjust to it as you move forward and new bits of road appear.
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I just wanted to give an update as a lot has happened in a year.
My DD finished Fall, 2022 semester and went back for Spring 2023. But after a few weeks there was a point where we knew she had to come home. She was at a crisis-level point of depression.
I flew in, packed up her things, and got her home. Over the next months we found her a wonderful therapist as well as a new doctor who did a lot more extensive testing. Turns out DD has ADHD as well as OCD which can be common for girls on the spectrum. After trying a few medications what helped her the most was being prescribed meds for ADHD. It has helped her so much especially with depression as well as her ADHD symptoms.
She now decided to give college (and her full scholarship) another try as she’s in a very different place mentally. Fortunately her college is great with accommodations and she has her own room. This was a huge anxiety-creator, not having her own space in which to retreat. So that will help a lot. She will also continue with weekly telehealth sessions with her therapist.
But I know that her journey may not work out as planned and that’s ok. I know she wanted to give college another try since she worked so hard to get that full scholarship and we are going to support her as much as possible. I told her it’s ok if this doesn’t work out, at least she gave it a try and she’ll be more confident in changing direction.
I wanted to give this update in case anyone else is going through something similar.
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Autism is tricky. Our 16 year old son is on the spectrum. Just when I think we’ve got it all figured out, something new crops up. Best wishes for your girl!
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Just want to say that you are doing an amazing job supporting your D. I hope things work out as she hopes.
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