Dr Sonia Grover (gynaecologist, Royal Children’s Hospital, Melbourne): Young people with disabilities may have special needs in a range of different areas but in all likelihood they are going to go through pubertal changes at the same time as everyone else and the range of pubertal changes we’re talking about are both physical changes but also the emotional changes and the development of sexual interest.
Nancy (mother of Andrew, 19, who is autistic): When Andrew went through puberty that was very hard because he did not understand what was going on with his body. How do you explain it?
Lillian (mother of Tash, 13, who is autistic): Basically Tash was a little girl one day and within a couple of weeks she was fully into puberty. It was such a shock for her and she had this amazing bodily growth very quickly. If it’s hard enough for regular children who can express themselves and do understand the world to cope with their feelings and their fears and their anxieties and the confusion, then you can imagine how frustrating and confusing it is for an autistic child who cannot express themselves, doesn’t understand the feelings.
Kerryn Burgoyne (trainer and educator who has Asperger’s disorder): When I went through puberty I didn’t know what it was all about. It wasn’t explained to me and I didn’t, again, comprehend what it was all about. So for me it was just enduring pain and trying to comprehend why breasts grow on women and why men become like they do. It’s very difficult for a person with ASD to comprehend puberty.
Dr Sonia Grover: Young people with ASD are often anxious about changes and can get more anxious about things. Therefore talking about puberty before it happens, warning them that these changes are going to happen. Making it quite clear that asking questions is fine, ‘There’s no question that will embarrass me’ is one of my lines. And it depends on how your child likes to learn. If reading a book is going to be the best way to talk about your body is changing. But you can likewise find sites on the internet that talk about bodies changing so adapt to what the best way of approaching things are from your child’s perspective to tackle the issue.
Elena (mother of Alex, 15, who is autistic): When Alex started going through puberty it was quite funny because he kept saying he wanted me to take him to the doctor because he wanted to get his voice fixed because he didn’t want it to go low. And I think because deep down he knew that you can’t stop it but he was trying to tell me that he didn’t want it to go lower and I said ‘Look, there’s nothing you can do about it, your voice is breaking’. And that was probably the first thing that he started commenting about. He did comment a few times about not wanting to get hair in different places but…you know…I just sort of just say ‘No, everyone get it. There’s nothing you can do about that’.
Lillian: We did experience quite a regression. She really did stop expressing herself in any which way. She became so anxious and so frightened. We had to rewind the clock and go back to lots of visuals.
Dr Sonia Grover: One of the challenges when you’re involved in looking after young people with disabilities is ensuring that what you’ve just explained has been understood. Now that’s actually an issue with all young people and it’s very easy for me to slip into language that they don’t quite understand and likewise as parents explaining things. And so the tactic of ‘I’ve just said an awful lot to you. Can you explain that back to me, just so that I’ve understood, so that I know that you’ve understood what I’ve said’. And also saying ‘We just talked about an awful lot of things there and I don’t expect you to take it all in, in one go. I’m very happy for you to come back and we can go through the whole thing again whenever you’re ready’.
Dr Mark Stokes (Associate Professor, School of Psychology, Deakin University): Children need to be reassured that they’re developing hair on their bodies, it’s quite normal or it’s a bit slower in them than in others, that’s quite normal. And it frequently is…they’re more likely to be a late developer than an early developer.
Delores (mother of James, 14, who is autistic): The physical changes, the hair...you know...all of that. That hasn’t fazed him or worried him at all. The behavioural changes. All we’ve really seen is that he has been…I guess he was being a bit, what we call mischievous and a bit of pushing the boundaries and being a bit non-compliant. Which is so not James.
Nancy: Andrew became aggressive and he lashed out. He lashed out at the people around him. He lashed out at me. He would scratch. He would bite.
Dr Mark Stokes: For young men of course they get large doses of testosterone in their body. Their muscle mass picks up. Their bone mass picks up. So parents need to manage these by providing strategies and talking about these to the child beforehand saying ‘These are the kinds of changes you can expect. These are the kinds of ways we expect you to behave. If you’re going to lose your temper, this is an appropriate way to get angry. This is an inappropriate way to get angry’.
Lillian: The way we approach it is that she’s just a teenage girl and she’s going to throw at us so many things that teenage girls throw at us. We saw her move from childhood into puberty, which was quite sudden, and there was amazing differences in her behaviour. And it was easy for us to identify because I have the older girl. I think I’d be very confused if I didn’t have the older child as an example.
Delores: It’s typical teenager type of thing. So we’ve seen what…you know…you’ve seen a typical teenager and sometimes you’ve got to think that way. You can’t think it’s all about autism. So you’ve got to think about those normal things that they go through.