Parents of Autistic Students at University

You are not neurotic! The phone situation sounds absolutely nerve-wracking and quite familiar in the 'forgetting to charge/lost the thing/didn't turn it on' department. Refusing to wear glasses? I see you and raise you a refusing-to-have-eye-test. *Sigh*  Hang in there. We are all just muddling along best we can, aren't we? Feel free to vent on this thread!

Thank you for your reply and it is very helpful and reassuring that I’m not alone. You are doing an amazing job and I can completely relate to you. 
My son can get depressed too and I found that giving him Omega 3 vitamins helped a bit.

• My main challenge with him is his lack of communication with us, we are always trying to guess how he is, and exactly this if we step too far, he falls and if we invade too much we argue. I have a quite demanding job and I have had to go to work a few times without having slept at all because he didn’t charge his phone and we didn’t know where he was and if he was ok. He doesn’t understand why I worry so much and I look most of the time like a neurotic maniac mum, and that is probably not far from the truth! 
  He joined in as many societies as he could, and this has helped him to make friends, he is very shy but can somehow manage to participate in social events. University is good because of the range of offers relating to his own interests and this keeps him going. 
  
  We tried to get the DLS involved, it worked ok during the first year but last year it was all over the place. He misses a lot of appointments and when we ask him about it he says ‘I’m doing it…’ but he doesn’t do it. When we text him he answers back with the phone ‘template’ replies: ‘Can I talk to you later?’ ‘I’m on my way.’ ‘Sorry I can’t talk right now.’ But when he does at least I know he is ok and has charged his phone! My son is also asthmatic and short sighted but refuses to wear his glasses and this adds to the list of worries.

Anyway, I’ve just sent him a ‘Good morning’ and his reply: 

‘Can I talk to you later?’ 

Hi, this is my first post on this site.I don't have any advice to offer because I'm often at a loss myself, but I just wanted to express my empathy for what you are going through.I'm also a parent supporting a recently-diagnosed son who is repeating the year because last year didn't work out. He agreed to move to a closer uni and a slightly easier course, and he is doing better than I expected in some ways, but his well-being is still a massive concern. My son is depressed and often feels hopeless, but won't seek treatment for this, and the way we have been dealing with it is to bring him home as often as possible for TLC in hope that we can avoid complete burnout. I realise this is not an option for you being so far away, but having read down the thread I can see that your son has made friends -- surely this is a massive help to him!

It is very hard to know when to stand back and when to step in, isn't it? I find myself oscillating between stepping back too far and having my son fall flat on his face, and conversely getting too micromanagey and ending up in an argument. I have other teenagers and this can be a problem for any child, but it's much more pronounced when the autism is involved because I'm not able to use my personal frame of reference to make judgements about when to intervene, if that makes any sense. I guess I'm saying that for my family, we seem to be operating on trial and error. It's quite draining for me and my work has suffered from the extra emotional load.

I wonder if your son has thought about using any apps to help support his executive function? My niece is autistic and swears by a system of phone alarms that she uses to keep herself on track. Does your son meet with a DLS mentor at uni? Is this helpful to him?

Wishing you all the best.

Wow, this is an in-depth reply, thank you for taking the time to write, it is fascinating!

Your research sounds really interesting and I'm very interested in the subject and how people perceive the world differently. In fact, I have two autistic children who are very different from each other. My daughter who is much younger is less high functioning in terms of self-care, however, can communicate her needs and especially her dissatisfactions much better than my son does. She usually says aloud what everyone might be thinking but don't say. I can see that she is definitely a picture-thinker and is really good at drawing and visual arts, she is also very sensitive to images, colours and the surrounding environment as well as certain sounds.

On the other hand, my son seems to be an auditory learner, loves words and is passionate about music and literature. He is very sensitive to sounds and tends to internalise thoughts and ideas, too much talk is just TOO MUCH for him. He can write really well but finds communicating his needs and dissatisfactions a bit harder than my daughter does. When it finally comes out, it comes as in an avalanche! However, he can express his intellectual ideas and interests very well, dig very deeply in his memory to link ideas and thoughts, he definitely makes me see things in a wonderful way. Yet, at his own time and pace.

Another interesting point is that when my son was a baby, he rarely cried, he hummed instead, angrily, happily, calmly, etc... I learned to read into it. However, my daughter would scream very loudly for long periods sometimes, now she can't even hear a baby crying without having a meltdown.

It is fascinating how both of my children have nearly the same diagnosis (one high functioning autism and the other autism), and they can be so different but at the same time so similar. They teach me every day, I learn every day too.

Thank you again.

My son and I have the same age gap as you with yours. He's just out of Uni now, I'm the one on the Spectrum and though he has dyslexia, he's much better socially than I am, though he is an introvert and had to learn to take a full day off of all social engagements every few weeks or it wears him down. 

For autistic individuals, what may 'appear' negative can be quite positive for us - language doesn't have the same crushing effect or contain value judgement as it does for someone more Typical. In ancient times we were alchemists, observers, early scientists and language is merely a pragmatic means of excavation. If I rephrase this as an artist, I'd say it's absolutely necessary to explore working with shadows. As a scientist, it would be meaningful to expand into grey matter / dark matter, black holes, things with great weight that will eventually destroy us but keep us in motion for now. However, these are better explored anytime except before bed! Then one doesn't always sleep well, as the autistic brain just LOVES to calculate, process and at great speed and non-stop, therefore a good fiction book is the best for sleep.

I've been peeling through a good deal of research into the differences of brain types and it appears that the use of language + hyper connexions of the autistic-wired-brain are two of the main 'animations' which appear different externally. Most of us are picture-thinkers. And language is useful for description, understanding. We get along with other diverse brain types and don't always prefer tribal 'inclusion' like a more typical-wired brain, which needs the semiotics (meaning and symbolic representation of language) to feel happy. In fact many of us can find the meaning and representation completely pointless or in the way of more 'scientific' observation. I've actually had to learn to "afford' others their connectedness to semiotics, as it might be necessary for survival, which is fine. I can appreciate it now, but still from afar. I am the most satisfied when lost in making, exploring, troubleshooting. And that might mean I'm a bit more aloof or lost in the moment. Which is amazing for a job requiring this focus and drive yet terrible for time-management!

When my son was at Uni,I used to just send him groceries, vitamins or a new jumper, socks, things he might need but wouldn't think about and just let him get on with it. This might be your best solution if you're looking to focus a little mum time somewhere :)  I've also used time away from him to grow personally, learn yoga, become more mindful, and be a mother he might always seek guidance from in some capacity. That takes a good deal of 'me' time, so useful when I can't support him directly. Just envisioning your relationship with son as you get older, can be a great deal of help to stay focused in the moment. 

And if you do have a million questions you could write them down so as to remember and space them out. Doing one thing at a time is a Mantra - absolutely Rule #1 between my son and I. He actually finds it a more successful practice in life in general. When I've tried doing more than 1, I become hazardous, I'm knocked off focus and sometimes it's been dangerous - I've heard many autistics say the exact same thing and I believe this is another key part of our wiring.

But it is important they feel respected and cared for. Being inquisitive about health, well-being, might occasionally be irritating to them in the moment, but they get past it and it creates a feeling of stability. After all, it is my Job Description to care about him, so I like to remind him not to take away my purpose in life LOL.  

It's good to be supportive of our kids and you sound like a really good mum! 

Thank you for your answer, it is really helpful.

I really like what you said about listing things in terms of priority, I think that would work for him. He does a lot of things really well, he has an amazing memory and ability to connect ideas which amazes me every time. Also, an incredible sense of humour! Sometimes we do end up focusing on the negative side... I think I talked to him about putting things on the calendar (with alerts), but not necessarily prioritizing them.

I just want to ensure that I can support him without invading too much on his personal life.

I'm also in my early forties, my son is 20. So I had him when I was young and away from my own parents, I've tried my best to teach him and give him support, but I'm definitely still learning. What you said sounds similar to him, including having to close projects and in terms of social arrangements he manages, he has made some friends at the university, meets them quite often and this is great! Sometimes I think I understand him well, but then I realise that I might not... I know that he experiences time differently than I do and I probably ask too many questions, which overwhelms him.

Time management is not typically something which comes natural to children let alone to Autistic Individuals. It's an executive function. Sometimes I think this is overridden by other things we might do very well. 

But I'm curious! As a parent, how have have you taught him to prioritise or what sort of skills have you handed down which you find useful and create efficiency. When I was younger I wasn't even told this was a thing, so it wasn't until my 30's someone spelled it out in what would classify as painful detail. To me, it was rather enlightening detail. Investment of time/resources/social engagements. I can't say I'm amazing at it, but somehow manage.

I'm more project-driven. Due to not being able to leave things open ended, they get finished, but I do have a working list of the order of things. And try to list what's important vs what can wait - some things don't make money immediately, so they are put on hold. I've found it impossible to both work and maintain a significant other. Being that I'm expected to do both with any relationship, I'm mid-40 and still single.