Hi there. I just wanted to start a thread if anyone else is interested in sharing triumphs and/or struggles of their children on the Spectrum. I know how it can feel to not have anyone able to fully relate.
I’ll start from the beginning I suppose. My son is now 22 and will be finishing his Bachelors in General Studies online in July. It’s been a JOURNEY. DS was dx’d PDD-NOS at 2 yrs, 8 mos. When I look back at how far he has come it does absolutely amaze me, but the journey into adult hood, self sustainability and his horrible battles with mental health, this momma worries more now than I did “then.”
Happy to share more and talk with anyone who is a parent that wants to have a place to relate.
My son isn’t college aged yet, but a sophomore in high school. He was diagnosed with autistic disorder at 5 years old. We were told then he’d probably never be independent, never be in gen Ed school, etc… he’s fully independent in school taking honors and dual credit classes. He works very hard to be a B student. He plans to go to college but can’t really envision himself as an adult yet.
I tell this story sometimes cause it makes my giggle, and summarizes OUR experience.
A few years ago my son who was maybe 15ish at the time, was having tech issues with his Nintendo Switch. So he finds the number and calls tech support. I was proud he figured that out on his own. He’s talking total geek speak to the agent while I lean my ear in from downstairs marveling at the conversation that is way, way over my head. Then he yells down, “mom, what is my address?”
I snicker at this, but it’s so encompassing of our experience. To be so informed and adept in some situations and with some topics, and frankly clueless on others.
That is hilarious and I totally relate! My son recently started asking to learn to drive. He’s very responsible and a rule follower so I said yes, but I told him there are some basic skills he needs to master first. He can’t seem to master working the front door to our house. He can use the key and unlock the door, but can’t figure out how to turn the key back enough to remove it from the lock. Um… if you’re going to be driving yourself around town, you must be able to unlock the front door, pump gas, etc… first!
thank you for starting this. I have a senior going through the college application process right now. He wasn’t diagnosed until he was 14 yos when he started struggling with acute mental health issues. He says he wants to go to college but following through on basic tasks like setting his alarm to get up on time for school is difficult, even with reminders. On the other hand he scores very high on exams but doesn’t do his homework. He spends most of his free time on his phone. However he has had a part time job for the last 1.5 years. I’m very hesitant to have him go to college since he shows little independence but at the same time I do not think him staying at home is going to help him learn life skills. It’s been a mental struggle for me to decide what’s best for him.
His support team at school feel very strongly that he needs to leave home and go to college. They say it’ll be best for him and us. But finding the right school is tricky. I’d love any advice/ideas.
My son is almost the opposite of yours. He was in thousands of hours of behavioral therapy as a kid, so he is excellent with schedules and routines. He does everything at the same time, in the same way, everyday. He’s very diligent with homework. He’s so literal that he struggles with literature, etc… Things like metaphor, sarcasm, nuance, completely escape him. For him, we’re thinking a small Christian school. That’s the type of high school he goes to and he thrives there. We’re also thinking closer to home.
My niece is 15, a sophomore in HS, and just diagnosed on the spectrum at the end of last school year. She had to repeat English and Spanish over the summer before 10th grade. She’s struggled a lot. I’m hoping to learn from others’ experiences so I can be supportive and helpful if asked for advice by my sister-in-law. Right now, Niece is interested in trying community college part time first, which I think might be a really good option for her.
My son has ASD and went to a school that provided ASD support (RIT). He does great academically and managed to get a good job . He is praised at work all the time for his programming skills, yet he has been called into meetings in regards to forgetting to fill out paperwork. He has always been one to “forget things”, Birthdays, due dates, appointments, etc. To get by in college he had a large calendar that this his coach would help him fill in with due dates and a white board.
Recently he forgot he had a dentist appointment :(. he forgets to brush teeth, despite being very routine oriented.
So the good, he did great in college, got a good job, lives on his own. (his bills are autopay)
the Bad, his apartment though neat is not clean likely. He will not hire cleaning people, or let me do so. He also still doesnt have “friends”. The idea of hanging out for the sake of hanging out is hard for him. College was mostly covid, which hurt him. He is social at work, and around family and family friends.
The ugly. Still needs to be reminded about things. Trying to get him to put in phone/outlook reminders. Also hygiene .
Thank you for sharing. My son did apply to RIT because I learned about their excellent support program. We will just have to see about the costs. Your son sounds a lot like mine. Did he get a job nearby so you can pop in and check on him weekly? I feel like we will need to do that.
So many kids with autism have hygiene issues. I’m a teacher and I had a student with autism. Her parents really struggled with her bathing and that set up so many social issues with her peers. We’re fortunate with our son that we’ve been able to schedule and systematize hygiene. He must shower everyday and he does that at the same time every day. He brushes his teeth and cleans his face at the same time every evening. I think behavioral therapy when he was younger really helped us t up all of his routines.
The program at RIT sounds amazing. That’s too far from home for my son, but I’m curious now if other schools have similar programs?
He ended up with a job that was initially 5 1/2 hours away. The biggest issue was that he still was not really driving when he moved and got the job. We had to get him a car and hope that he would finally, at 21 , be able to drive safely. 1 1/2 years in, and so far so good. Also he did not move to a major metro area, but rather a smaller city and beach town. Having him go away to RIT likely helped us. And yes, at first I went down at least once a month!
For those who live in the Midwest, UW-Stout (Wisconsin’s polytechnic college) has an autism support program, and will be a closer and less expensive alternative to RIT.
I have also seen students in the Minneapolis/St. Paul area get good support for ASD at Augsberg and Hamline.
They grow up later than others, but they do grow up. Lean into their obsessions; they often become their careers. Have them go to college close to home, so you can offer support as needed, easily. Begin planning for post graduation transition to work and future life very early on in college. Not unusual for them to finish college, and move back home, to become basement dwellers, not working.
This sounds a good bit like my son. He went to college locally and lived on campus then had an off campus apartment. Unfortunately the demons of his mental health really took a strong hold and he ended up moving home with my husband and I, and is now finishing his degree online. Should graduate in July. All things considered to be “on time” is pretty awesome, It’s the “now what” that terrifies me. His original degree was in education, but he couldn’t complete that online.
Now he has decided he doesn’t want to teach, maybe do social work, but he really doesn’t know. He wants to live independently, and is capable but like your son, he has no friends at all, and that is so isolating. Not good for someone with severe depression tendencies. It’s exciting and terrifying all at the same time. I thought I worried when he was young, OMG I had no idea.
Thank you so much for starting this thread! This is my first time posting on this site or really anywhere! My daughter is a HS senior. She plans to apply ED to a school that seems like a great fit for her, but I worry because it is a plane ride away. She loves the school because it is small, beautiful, very strong academically, has the social fit she is looking for (no sororities, nerdy students, queer friendly), and small classes. She has made strong connections with her high school teachers and this seems like the kind of place she could do that. Her dad and I agreed that she could apply there ED because it seems like such a good fit and we were hopeful that she would take a gap year if accepted to work on some things. Her application is due Wednesday and she is almost finished, but is starting to second guess the decision. From her competitive private high school it seems like everyone is applying somewhere early and it seems like going out of state to a 4 year college and living in the dorms is the normal way to do things. I was talking with her last night about how that is actually very unusual and she does not need to do college the way that most people from her high school do. I struggle with not wanting her to feel underestimated. She has a hard time socially and hates everyone at her school, but has had a girlfriend for 4 months. She struggles with overwhelm and sensory issues and it is hard for me to imagine her living in a dorm or having to eat all her meals in a loud cafeteria. She also has a hard time with time management skills and is usually late and puts off her work. Her mental health issues are exacerbated by her overwhelm when work piles up and it is the mental health that I worry about the most. I don’t want to hold her back, but now that she is wavering it is making me second guess the ED as well. The school accepts 7% of applicants so I felt like it was such long shot, but now that I am seeing her application take shape I feel like while an acceptance regular might be unlikely, she has a real shot ED. Anyway, I don’t know any parents of kids with ASD and it is so helpful to read about other families with experiences similar to ours.
My niece performs much better in academics when the format is all online. In fact, during the pandemic when her schooling was all online for an entire year, she had amazing grades. Niece has said that she finds an online format a lot easier and it helps her to stay organized. Whereas with my neurotypical kids, they hated online classes with a passion.
Niece is interested in “maybe doing something involving computers.” She’s also super duper into art, but only if it involves drawing pictures of dragons using a particular type of colored pencils.
My SIL wants Niece to get a traditional part time job next year when she’s 16. Honestly, I’m not sure if Niece will be able to handle something in a food service or customer service type of job. Her “social battery” gets drained pretty quickly and then she kind of shuts down.
I told SIL about the Modern States’ free online courses which you can take as prep for taking CLEP exams for college credit. My D24 has done that for a couple of her classes last year.
If there is any hesitation I wouldn’t encourage my child to ED only because it is binding. Is there a school nearby she can consider that has a similar environment? Initially my S24 applied EA to a bunch of schools 2.5-6 hours drive away. But after reading some of the responses on here, I decided to have him apply to a small local state school one hour away. I do think he should try moving out and gain some independence, but I’m having second thoughts about being too far. I told him if he is successful his first year and wants to go somewhere further away he can look into transferring.
The ED component adds a layer of complexity and commitment for sure. Does your daughter communicate well with you? Will she be open and honest if she is struggling academically, socially, or with her mental health?
Hopefully she does pursue other avenues if she wants to, but I would encourage her to stretch. Give her the opportunity to rise to the occasion, and if it is too overwhelming, she can step back from that…IF that would be reasonable in her mind. ie will she feel “worse” if she has to step away?
The inverse that carpathia mentions above is also a good idea. Start a little safer and then the option to transfer.
Yes, traditional teen entry-level jobs such as food service and busy customer service are sometimes not the right fit. Some alternatives I have seen work better include the following: pet shops (both chain and independent), helper at a dog boarding facility, hardware stores, construction (if the sound does not bother them), landscaping (ditto on the sound), specialty/hobby shops (especially if it aligns with their interests), stores such as Staples and Office Max etc that have a bit of a technical component.
For some reason, I have seen kids “find their people” especially at chain pet shops (Petco etc) maybe because they are big enough to have multiple workers, but not too many.
