Helping autistic DD (18) with executive function

[WhereAreWeNow]

DD is hoping to go to university this autumn. I don't really worry about her academically or socially but I do worry a lot about some of her autistic executive function difficulties as well as some autism related toilet issues.

—She is incredibly forgetful, disorganised and scatty.
—She forgets to shower or brush her teeth unless I tell her to several times.
—She gets behind on school work because she struggles to focus and organise her time when she's not at school.
—She doesn't brush her hair unless I tell her to or do it for her.
—She has ARFID and very limited diet.
—She has had chronic constipation her whole life and will spend about 2 hours on the loo each day.

In some ways I think university will be the making of her. But then I think about the list above and worry that she just won't be able to take care of herself.

Does anyone have any advice on how to support her with executive function? Are executive function coaches helpful?

Can you help DD set alarms/reminders for things like showering, teeth and brushing her hair? Some find checklists &/or to-do lists help. Some find Brain in Hand helps.

Has DD ever had an OT assessment? Does the school have anyone who can provide coaching/mentoring?

If DD goes to university, look at DSA. That can include study skills tutoring and mentoring.

Has DD had any support for her ARFID? Would she take a multivitamin if she doesn’t already?

Will DD she the GP see the GP about the constipation?

Thank you for answering. She has tried alarm reminders but she doesn't stick with it. I'll look up Brain at Hand.

She will take some multivitamin gummies but struggles with some (iron is particularly tricky because of the strong taste and she can't swallow tablets).

She's been on Movicol since she was a toddler but I'm starting to think the problem is more complicated than constipation - it's like her gut-brain signals don't work properly so she feels she needs to stay on the loo even when she's finished. Whenever I take her to the GP about it they just say keep taking the Movicol. I feel she needs to see someone more specialist but I don't know who.

School have been helpful in supporting/encouraging her to plan work but it's not coaching and it doesn't seem to have made any difference.
No one's ever mentioned an OT assessment. Is that something schools can organise?

You are unlikely to get an OT assessment (or an EP assessment, which I also think would be helpful if you can afford it) via the school I’m afraid.

Gastro may help investigate the constipation. It may be a sensory issue - some autistic people struggle with recognising the signs and that is part of sensory differences.

Thank you. I don't even know what an EP assessment is. DD was only diagnosed last year so I'm still on a steep learning curve.

Apologies. EP is educational psychologist.

Just coming on to say I have very similar worries (across a whole range of issues) about my 18yo ND ds, due to go to uni this year.

Re: constipation, that is an issue in our house as well - for me & ds it seems to be a problem with gastric motility. Strangely, I have found drinking iced coffee first thing in the morning really helps get things moving - the commercial ones (i buy arctic, or co-op (seems to be made by same manufacturer), and they have really high caffeine levels, and I suspect that caffeine can improve the function of mechano-sensitive channels in the body (ie gastric motility (the squeezing of the gut) being triggered by the channel cells sensing the ‘stretch’ as the gut fills. Might be worth trying! I have also used the ‘phizz’ caffeine tablets (like berocca, but ‘phizz’ is a high dose of caffeine) which also works!

Well I would be strongly encouraging her to get an en suite room so disagreement with flat mates over bathroom occupation are minimised.

ds2 actually has found his university portal to be extremely helpful with telling him what he needs to do in terms of lectures and coursework deadlines so some of my fears about him not knowing what to do have not materialised. We also encouraged him to regard deadlines as fixed (rather than relying on extensions which most universities are happy to give for students with an ASC) but in his case would have just encouraged the agonizing procrastination. Actually he has had a couple but mainly meets the deadlines.

Applying for DSA and getting a mentor would be helpful to keep her on track - both of mine refused to do so - you can lead a horse to water and all that.

We gave ds2 instructions like you will have a shower and get into clean clothes every day which somewhat to my surprise (given his reluctance at home) has worked for the most part. Basically he does not feel the need for self-care but is motivated to some extent by wanting to fit in with his peers.

Thanks @OneInEight . That's encouraging. We've since been to a few offer holder days where we've asked about support for autistic students and have been really impressed with how much support is available. We're definitely applying for DSA and asking for an en suite room.

If there's a uni near you that she likes than that might worth considering even if she wants to stay in halls. It just means that if living out turns out to be too much she could potentially live at home and commute.

If DD needs a specific type of accommodation for disability reasons e.g. an en-suite or a studio, the difference between a standard room and the accommodation required for disability reasons can be funded. For university owed accommodation or third party owned but on behalf of the university, the higher education provider is expected to meet the additional cost. For private rentals, DSA can fund the additional cost.

Thanks. Yes, I'm hoping she'll get into one that's an hour away which feels like a manageable distance. If she doesn't get the A-Levels she needs she'll have to go a bit further away though.

That's really good to know. Thank you.

With the constipation, has CMPA been ruled out? This can cause awful constipation.

Thanks. GP has never suggested looking for allergies. She doesn't have any of the other symptoms listed on the page you linked to. It's worth looking into but I'd be surprised if it's that.

She doesn’t have to have all of the symptoms to have CMPA, especially if it’s non-IGE CMPA but I do agree with you that if she doesn’t have any of the others then it’s unlikely. Has Coeliac been mentioned at all?

No, the GP has never been interested in investigating. They've just prescribed Movicol. I've just managed to get them to refer her to a gastroenterologist.

If you can get a letter from her GP / dr saying she needs an onsite accommodation and ensuite due to ADHD poor time management and needing to get to lectures on time / would find it difficult to share bathroom due to poor time management / toileting issues - not only should she get this but her uni might reduce her rent. My children received about £1,800 I think each reduced accomodation (price difference non ensuite).