Practical advice on handling Menstruation in a severely autistic female.

It might be worth trying something that works well with toileting issues. I.E characterise & catroonise the matters to appeal to sense of wonderment and put in place a topography. For instance with toileting the poo becomes the train & the bowl the station. Thus if you can invent the reason why the pad needs to be looked after in 'bed' and kept warm etc until X time and so on. Its a remodelling of the circumstance that puts the process into a framework that gains the type of attention an adaptation required. Therefore your scaffold merely appeals to a sense of a place you know gets a reliable response. When these things work, the sense of play used seems to just obsolete itself & the habits formed just remain. Anyway good luck whatever you find is the solution.

You can consider Incontinence Pads and Guards for her. Check out here: https://confidenceclub.com.au/collections/pads-and-guards

Sorry to hear that things haven't gone quite as planned.  My daughter is 13 and autistic but sounds a lot more able than your step-child.  In saying this, she cannot deal with sanitary towells and I have to help her change them etc.  Our GP was wonderful and she is now on the pill taking two packs back to back so she effectively gets a period every 6/7weeks rather than every 3/4.  However, having used this system for about a year when we stop the pill for a week to allow the period to come it no longer appears.  I am (understandably) exstatic!!!  I have mentioned this to Gynae and the GP but both parties don't see any immediate concerns about this.

I am of the firm opinion that if I am the one who has to wash her and change her sanitary towells it is in MY best interest that she has as little menstruation as possible. Thankfully the GP agrees.

I hope things look brighter soon.

Freya x

Hi there,

Thanks for your message. After posting this last year, and following the round robin request for consent, her Endocrinologist, along with her mother decided it was not in her best interests to intervene at this stage.  They cited potential long term health problems - osteoporosis in the main- with such early and prolonged use of contraceptives.  He stated we should carry on as long as it is manageable and practicable to do so before considering contraceptive intervention.  So, we've been managing with pads, which she eventually got used to and is happy to wear (that surprised me). When she has her period, it does not put her up nor down, however, they are erratic and she had one last month for the first time in about 4 months.  It was particularly heavy, lasted the full week, required changing of pads every couple of hours and affected her sleep.  If this is the norm going forward, as far as I am concerned it's no longer manageable.  However, and unfortunately, I have no say. As a step parent, with only part time care responsibilities, those decisions fall to her parents.  I can influence her dad, but her mum has no interest in anything I have to say.  So, my hands are frustratingly tied.  

Where are you by the way?  

Emma x

Hi there, am in exactly the same boat as you. My daughter is autistic, intelligent but cannot speak much, refuses to wear nappies and clothes most of the time. She has a lot of energy, never wants to sit still, very loving but struggles to do everyday things independantly. We have to do the same thing at night, wait until she falls asleep then put everything on, guaranteed it all gets taken off few hours later. It is really hard and am worried about her future too with regards to menstruation. I see this thread was started last year, just wondered how you got on and what you, or her parents decided to do to help her.

Hugs x

While I an male so I won't be googling the various options, you could consider looking at incontinence products for females say 30-40 may bring up a suitable solution rather than elderly nappy type products.

I know that you need to get approval, but a high enough pill or implant should stop what is an unpleasant care issue for all involved I imagine.

From what you say your Daughter doesn't seem distressed by it, which is some consolation.

www.ebay.com/.../270634669719

USA but an idea of what your looking for perhaps?

Hi Stuffed,

Thanks for the comment.  Her parents (my husband and his ex-wife) are in the process of getting consent for contraceptive intervention to stop the periods altogether.  However, because Eve is unable to give consent herself, the consent has to be sought from ALL of her care givers and they all must agree it's in her best interests - so right now that is the school, her GP, Paediatrician, Geneticist, OT and the parents.  The process was started some months ago, and as you can imagine, has not been quick.  Hopefully some momentum will be gained now though, and frustratingly, it's now her mother who's having the wobbly about whether this is the right thing to do due to potential long term health effects of the long term use of contraceptives.

Re incontinence pants - she won't wear them, or pull up pants.  She still needs nappies at night, but we have to wait until she's asleep before we can put it on.  She's quite independent!

I'm looking for pants that have an in built 'slot' for a pad rather than it being obvious in the normal gusset of her knickers......

Emma

Consider a contraceptive implant or pill to lessen the grief and could you consider incontinence pants for that time of the month possibly?