Autistic Daughter in crisis

Parents Forum
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I created a thread a month ago about my autistic daughter not wanting the stigma of her diagnosis Stigma with autism diagnosis?

I apologize for the length but I am so confused as to what to do and am desperate for advice.

Since then things have changed and she is having a mental health crisis to the point where I bought an emergency airline ticket and flew to get her help.

For some background DD just got diagnosed back in May with level 1 autism and high anxiety and she’s on 5 mg lexapro which seemed to really help.She wanted to go to college but had no idea what she wanted to do but she loves chemistry and biology so she is majoring in biochem. She got into the honors college and got a full tuition scholarship.

She seemed to be doing well,seemed happy on FaceTime calls,joined several clubs. She even decided to be open about her autism and joined the Autism Speaks club on campus. But then I got these messages about how inside she feels awful, how she sees no reason to be in college and has no desire to ever have a career. How she never envisioned adulthood for herself and just wants to come home.

She has a group of friends from high school (several from local school,others she met online and then in person) who are like her and they all message a lot on discord and play games online.Those friends are at other colleges and doing well and want to get degrees and careers. DD has been messaging them about her feelings of depression and they’ve encouraged her to quit and go home. These are girls who are autistic or ADHD and have often posted dramatic posts of their own struggles,who have frequently batted around “feel like kms “ phrases when they are going through some drama.

I’ve been encouraging her to go to the campus counseling center,to understand how her feelings aren’t unusual but she needs to push through as things will get better. Counseling requires taking a bus to the other side of campus so she didn’t pursue that as her feelings would subside somewhat. She’s been going to all her classes and clubs and doing her work and I thought there was improvement until yesterday she texted me and said she felt worse than ever and has thoughts about not wanting to live. But she wouldn’t hurt herself,these were just thoughts that were scaring her. That’s when I flew out and today we are meeting with the counseling center to make a plan for help. Her dr at home suggested moving her lexapro prescription from 5 to 10 mg which she did last week so I am wondering if this contributed too.

I think her problem is that while academically she achieved,inside she remained a child who doesn’t want to grow up and she’s very stubborn about anything changing. She spent her life masking.School was easy so she followed what she was supposed to do and spent the rest of her time at home with her cat and her friends online. Now everything has changed. She cried to me that she wants to be normal in wanting to pursue adulthood ( degree,career,dating relationships) but inside she wants none of that.

I’ve explained in the past that she has to choose something. All of her friends are moving on and eventually they will have careers and relationships and won’t spend their days playing games. She’ll be left behind. Whether she goes to school or gets a job,she has to do something. She didn’t like any local options for college and hates driving (colleges aren’t close to home). The idea of having a job stresses her out. She also takes great pride in her past high academic achievements and isn’t happy pursuing something that anyone can do.

So I am at my wits end with what we should do. DD had seen a general counselor for several years but that never addressed her autism. My husband’s first response was let her come home but she needs to know she won’t be just sitting around playing online games. If she comes home not only will she forfeit the scholarship (which is huge for us as affording school is a challenge)but she’ll soon feel terrible when she realizes her old life is gone as her friends are in college but she quit.

And yet her mental health and safety are top priority. I’d appreciate any advice as I am very distressed. Thank you.

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FWIW, I think you are doing all the right things - getting more help shored up for your D and going out to help in person.

Much of what your D is reporting sounds like typical issues that many college freshmen experience leaving home for the first time. I think often kids see the all the Insta posts where everyone is happy and great, and think no one else is struggling but them.

Is there a way for your D to do remote counseling sessions if taking the bus isn’t working for her? I think that can be just as effective and if it eliminates a barrier to access, I’d see about pursing that.

My other thought was to remind her that she doesn’t need to be worrying now about career, dating, or even declaring a major. Focus on what she has right now - current classes, school work, and her activities. There is no magic jump to adulthood when college starts. I’d personally consider taking that pressure off of her right now.

Big, big hugs to you!

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Thank you for your response. Yes, a friend who specializes in adolescent psychiatric counseling told us the same thing,that a lot of this is due to missing home and is compounded by her autism. But it’s not uncommon. And I had mentioned remote counseling but DD was concerned about having a private place for that. I suggested she could reserve a room in the library or even sit in her car.

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Can you visit her every 4-6 weeks? Sometimes having something to look forward to really helps kids in her situation.

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I agree with this! I feel like my D struggled with a lot of the same things the first semester. She was homesick and felt everyone else was settling in faster than she was. I also remember struggling a bit about a month into school. The first few weeks were fun and exciting but then homesickness set in. But in your case you certainly can’t ignore her or minimize her feelings when she’s talking about hurting herself. I think it’s 100% the right decision for you to go see her.

I would also look into remote counseling sessions. Reserving a room at the Library is an option but the school might be able to help with this too. I know someone who went through this and the counseling center on campus helped her find a private space. Does the school have a department that deals with people with disabilities? Maybe they would have suggestions? Or a conference room or extra office she could use for her appointments.

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I appreciate this advice.DD already had a meeting with the office of disabilities and accommodations and that’s a great idea to ask them about a private place for counseling I’m going to look into that.

I also have had the idea of coming here for a few days every month just to see DD through this semester. Considering the full scholarship she earned it would be worth every penny even if I have to pay for airline tickets and hotels…

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I’m sorry to hear about your daughter’s struggles. My son took a medical withdrawal last fall, he didn’t have a scholarship, but he would’ve been welcomed back without having to re-apply since he was still enrolled. Definitely speak to someone about that possibility, and what would happen to the scholarship.

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Even though you say she would not hurt herself, please make sure the counselor and doctors know she is having these feelings and saying them to you. Does she have a psychiatrist vs general dr or counselor to review and manage her medications? I am so sorry you and your family are going through this and it sounds like she is a good communicator to you - take care of yourself too.

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This is why I am so conflicted and want to make sure she is getting help. She is not in “imminent danger “ (our psychiatrist friend defined that) because she isn’t vocal about a plan to actually hurt herself,just had those thoughts at a moment of crisis.That would put her at risk of being involuntarily detained which isn’t what we need right now and would just make things worse.

She has seen a psychiatrist twice at home who put her on lexapro but I will find a psychiatrist near school to see her as well.

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I have walked a mile in your shoes. My oldest son who is on the Autism spectrum and had the same issues. We had a lot of BIG ups & downs, especially early in college. He is not a top academic performer like your daughter (goes to a state University in Florida, not UF or FSU, and is not in the Honors College). Still, I am proud of him. Even after his academic issues stemming from the curveball that was Covid-19, he has pulled his GPA back up over a 3.0. He had an internship with a global consulting firm this past summer and has been offered a job as a Cyber Security Analyst after he graduates.

When he was young, some doctors told us he had Autism and some told us he didn’t. This kept my son from wanting to face his challenges and wanting to retreat (similar to your daughter). I feel fortunate that he has ridden things out and is on a path to graduate in the near future. He has spoken in Autism/Neuro-diverse groups, including one at the Consulting firm where he will be employed, and I think this has helped him. Feeling like he is helping others in a similar situation means a lot to him. Perhaps it would also help your daughter.

Feel free to message me if you would like to chat. If you think it could benefit your daughter to talk with someone who has been where she is now, I am highly confident my son would chat with her and talk about his situation. It might help…I don’t know. I am no expert in this, I have just seen that having conversations about this with similar kids has really helped my son.

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Absolutely this can be a factor. Have you talked to her Dr.? Do so immediately and tell him/her about the suicidal thoughts. Increase of the Lexapro could lead to high serotonin syndrome. It can occur rather quickly.

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I talked to the doctor who said to find a dr by school but that staying on the 10 mg should not be problematic. Truth is DD felt depressed before the medication increase. When she started meds back in the summer she said she felt great,but she was home and spent her days taking one online class and then playing games with her friends online. There was no changes or school pressure. Her local dr had advised 10 mg right away but DD said she’d prefer starting on 5. But I do think the extreme self harm thoughts could be related to the increase.

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Thank you for this offer. I would like to message you after I get DD established. It would be great to talk to a parent who has traveled this journey.

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No advice, just our story: Our son was diagnosed with ASD late as well (14). He had troubles in hs and changed to online high school after first semester freshman year. He was not the best student, and we didn’t push college but he wanted to go. I planned out everything for a smooth transition and one hour after taking him out to dinner and leaving him at his dorm room (double room with no roommate per disability accommodation) he texts “I can’t do this”. I asked what he couldn’t do…all if it, he wanted to come home. It was tough…we convinced him to try a semester. There were many more pleading texts to come home, and other typical college struggles, but after that first semester he decided to stay…Covid hit, he was home with online classes the rest of the year and following year, then back his junior year. He is on track to graduate this spring but I realize he may not be on top of that and there could be a delay. ASD is tough sometimes.

You and your daughter, dr , counselor can come up with a plan for what will work best in your situation. I was prepared for college not to be the answer for our son, but he needed to do something and he didn’t have a back up plan if he left college. He had a definite direction on major, so that was easy. Most important is your D’s health, safety and establishing a great support system which it seems you understand.

Many people will not understand what it is like to have a child in the spectrum. If it is not their journey, how could they know? It is tough to hear people try to tell you to let them figure it out on their own…that isn’t always the best for your child. You are both fortunate to have each other as I’m sure you’ve learned a lot from her. Just finding out the ASD diagnosis helped our family so much in better understanding our s.

One thing too that irritates my s is that there is some support group that uses the term “curing” ASD or something like that which is a little troubling. It took him awhile to accept his diagnosis and now that he does he does not see it as something to be cured but who he is. Medication (small dose of fluoxetine to take the edge off )/therapy to help him navigate in a world where most people think differently from him is more the way we see it. Just wanted you to consider whether your d may have heard this conflicting language in any of her support groups that may have made her feel like she needs to be “cured”, when ASD can (and imo should) be considered a super power, with challenges, but not wrong.

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NB: Schools treat medical withdrawals differently. I would not assume that she would automatically lose the scholarship, particularly if her grades remain stable.

I think you and she would both benefit from meeting with specialists who understand Autism.

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What about flying her home one weekend a month instead of you going there? She can sleep in her own bed, eat your home food and regroup.
I’ve done this with each of my college aged kids. It was expensive for the last minute flights but well worth it. A couple nights of good sleep and good food did them well.
You might also get more information from her about what she is going through in a safe environment.

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Some of what she’s feeling sounds common for many college kids with anxiety, especially freshman who are far away from home. My S is not autistic (though I have wondered at times), but he’s an extremely high level thinker with super high anxiety. Change in routines, feeling at all lonely, homesick or overwhelmed just exasperates the anxiety. Like your daughter, my S has also expressed feeling awful inside at times, not being sure of the point of college for himself and feeling unsure of his path. We just keep reminding him that he’s not supposed to know all the answers or his future career plans this very second. Many kids switch majors; many adults change careers - and that is all okay. The reminder to just be in the moment and take things day by day seems to take the pressure off a little bit.

I hope you can find a psychiatrist to manage your D’s med adjustments because the jump in dosage could be contributing to her crisis feelings. My S tried one med that had no real effect at first, but put him in a very scary place the first time it was increased. We ultimately ended up doing GeneSite testing which will hopefully be helpful if he needs to add/switch medications in the future.

You and your D are not alone. There are so many families walking this path. :heart:

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Yes, my daughter was just talking about this today, about people who talk about curing autism when it involves having a brain that works differently. I told her I think they mean more about therapies that can help some children communicate better. You are right, it’s not helpful when autism is seen as something that can or should be fixed.

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I accompanied my daughter to the school’s counseling center. My daughter wanted me to sit in for her intake session so I could add things about her past treatments and medication. I was very pleased with the thoroughness of the session and my daughter seem to feel great relief. She is now assigned to a counselor for weekly sessions, and she is willing and somewhat eager to actually take the bus to the appointments which is a huge victory in my mind. I was also relieved when my daughter said she never gave real thought or intention to hurt herself, she just had those disturbing thoughts. It is so difficult as a parent to know how serious something is especially when you live so far away.

The doctors at the schools health center are able to monitor her medication, and we are going to meet with the office of disability and accommodations to discuss her having her own room next year.

We are going to have her receive special therapy during Christmas break and next summer. There are therapies that were advised when she got her autism diagnosis but we have had no time to further pursue that. I learned that Covid made it very difficult to even get an appointment with a specialist.I am feeling a lot more confident that my daughter can get through this difficult time. I do plan on staying by her college for the next week just to see her through her counseling appointments and to meet with these different offices about her issues. I really appreciate all the advice I have received on this post!

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I have found counseling options in our state much easier since Covid. They have been open to virtual sessions where before it was in office only and no one who specialized in Autism near us. I know the therapist he went to (not a specialist) can not do appointments virtually if the person is out of state. Would D consider a virtual appointment if you could find someone in the state she is in? Was that an option instead of taking a bus to appointment? Great that she is willing and comfortable to take the bus.

Are you familiar with the Sunflower Hidden disabilities program at some airports?