Dr Sonia Grover (gynaecologist, Royal Children’s Hospital, Melbourne): One of the really important things with young people growing up is that they’re actually prepared for periods. They know that they’re going to have them. They know that they’re normal events. That they know they don’t need to be terrified if the bleeding occurs. Now, I acknowledge that in some of these young people you have to give the message many times before the message is going to get in, and much as it’s an unpleasant or a confronting thought, that maybe the women in the household need to actually let the young woman see that, ‘I’ve got my period at the moment. Look, I’ve got a pad. It’s got some blood on it. It’s a bit yucky. I’m going to put it in the bin. It doesn’t hurt me when I’ve got my period. This means that I’m a healthy, grown up woman, and this is going to happen to you.’ And that may need to be done several times for the message to get through that this is, in fact, a normal event.
Dr Mark Stokes (Associate Professor, Deakin University): She almost certainly won’t get her period in a position where she’s protected and safe at home. It’ll often happen in an environment where she’ll be embarrassed. So she needs to have been prepared before that’s happened.
Lillian (mother of Tash, 13, who is autistic): What we actually did, and we were fortunate enough to do this, Natasha has such a wonderful relationship with her sister, so we allowed Tash to be with Isabella as she is bathing, or as she’s changing, or whatever, so the actual physicality of what was happening wasn’t foreign. She would have a look at sanitary products, that sort of thing. She’d understand how you’d go to the toilet and change.
Dr Sonia Grover: There are a number of visual resources that are around. There’s a book that’s been around for a really long time called ‘Janet has her Periods’. It covers the whole topic of washing your hands, changing your pads, putting the pads in the bin.
Katharine Annear (disability educator who has Asperger’s Disorder): It’s great to understand all the facts and look at all the diagrams and know what’s going to happen, but you’ve got to know what it feels like as well. And that means that you’re going to need an open parent or peer or educator to say, ‘Well, these are the things that are going to happen.’ And also, dealing with uncertainty, not knowing exactly what the date is that it’s going to happen makes people anxious.
Lillian: At school they helped us out with the situation. We developed visuals and a story, even a video actually of the process, the changing process and what happens and what to do. And because Natasha is a ritualistic type of autistic, loves ritual and understands the beginning and right to the end, and the process finishes at the end, it was easy to teach her the mechanics.
Dr Sonia Grover: For young people with disabilities, the conversation you can have is clearly going to be influenced by the level of their disability. So if someone has got a severe intellectual disability, then the capacity to have those conversations can be exceedingly limited.
Lillian: There is confusion for her. Like at first we were lucky enough that Tash was fully toilet trained by six. We didn’t have any real toilet issues from six, however when she did go into puberty, because of different pains or because it does tend to create constipation and things like that, we did start to have toilet issues which was a major shock. So, yeah, it was a matter of walking that through and trying to alleviate the confusion in her mind, and also for her to understand what her body was doing and it was okay to do that, and how do we deal with that.
Dr Sonia Grover: People often come to me and say, ‘She’s just never going to be able to cope with periods. Can’t you make them not come?’ And the answer is, I can do lots of things to help with periods, but I can’t tell whether periods are going to happen in six months’ time or in three years’ time. It’s much better, from my point of view, for parents to know we are here, we can help, but that we need to wait until we know what the problem is so that then we can offer the best advice.
Lillian: We’ve got to a stage where we can tell if she does have pain and also just with the moods. It’s very obvious with poor Tash. The week before she’s due you get these amazing sob outbursts from nowhere and then they’re intermittent with giggling. It’s like she’s just so confused, you can see it, and it’s just so obvious. So we just pat her, and talk to her, and nurture her, and say, ‘It’s alright,’ just like you would with any other teenage girl really.