Puberty is a challenge for everybody, but for girls with special needs it can be confusing, worrying and downright scary. As one parent put it, ‘There's an extra mismatch when it's not teen angst and puberty, but instead it's My Little Pony and Tampax.’
There is no ‘one-size-fits-all’ approach, but preparing for this big change and putting aside time to talk in advance could make all the difference. Think how your child learns best or relates to things; create a social story, use books with pictures, or cartoons online (see resources below).
Most importantly personalise it to them, otherwise they may not think it’s relevant and won’t listen.
Start early and be patient; it may take some time to sink in. Listen to their concerns, and don’t minimise them. You will need to talk about it again and again. Some parents have found it useful to share a book on puberty as regular bedtime reading.
Make it an event to look forward to; starting periods is a sign of growing up, moving towards independence, and making more of your own choices.
That may need explaining in different terms, such as saying it means going to bed later or being able to watch more TV.
As well as bleeding, you need to teach girls to expect pains and the odd mood swing. Keep a diary so she can see a pattern developing and know when to expect her next period. This will also help explain how hormonal changes can make you feel more upset or angry sometimes. It’s good to highlight the 14 day cycle too, as around then there may be some discharge which can be alarming.
Keep the school informed. Talk with your daughter about what she should do if a period starts at school, for example, go to the school nurse. Unfortunately periods aren’t always regular at the beginning but learning to look out for warning signs like mood swings or pains can help.
Some parents opt for a mini pill to regulate periods, control hormones and keep bleeding days to a minimum.
Sarah Wild, headteacher at Limspfield Grange School for girls with autism, says many girls on the autistic spectrum worry about what their parents will think about their body changes. It is important to emphasise that breast development, body hair, spots and weight gain is all normal.
For many girls with special needs the main challenge is anxiety and the lack of control over their body changes. Worryingly this can lead to eating disorders as a way of taking back control, and in some cases stopping periods.
The other challenge is that many girls with autism do not identify as being female.
At Limpsfield they teach the girls to accept people for who they are, and therefore learn to accept themselves. Girls need to ‘make peace with their bodies’ and be comfortable. If that means dressing like a boy then so be it. Confusion about sexuality is common amongst girls on the autistic spectrum as gender is not always important to them.
Use the correct terminology for all body parts and functions, never nicknames or euphemisms, this avoids confusion and is also important from a safety perspective. Talk about appropriate and inappropriate behaviour, and who to talk to if you are not sure. Talk about sex at a level appropriate to your child’s ability to understand. Explain if a period is missed, you must talk to a teacher or parent as you may be pregnant.
Resources
BBC Bitesize animated clips. Topics covered include first periods, personal hygiene during periods, dealing with feelings, appropriate/inappropriate behavior, peer pressure and sex, and lots more http://www.bbc.co.uk/education/topics/zr9dxnb/resources/3
What's Happening to Ellie? A book about puberty for girls and young women with autism and related conditions by Kate E. Reynolds
Teaching Children with Down Syndrome About Their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals by Terri Couwenhoven
Secret Girls’ Business books which specialise in puberty and sex education http://www.secretgb.com
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