Catherine Tissot, Sue Piper and Sarah Butcher look at how to support young people with autism through puberty
One of the most challenging times for any young person is adolescence and the changes that occur during puberty. When you combine this with the social and communication differences seen in adolescents with autism, this transition becomes even more complex. Add a learning difficulty to this mix and you have a potentially difficult combination. Physical changes and processes occur in line with age, not necessarily the maturity of the individual, which makes adolescence often one of the most problematic times for families (second only to receiving a diagnosis).
There are a couple of key challenges that families and staff teams face. The first of these is to recognise the autistic adolescent as a maturing individual with the same urges and sensations of other adolescents. It can be very hard for families to see their child as a young adult when they still have a lot of childlike preferences – for example, if their preferred video is Thomas the Tank Engine or Disney films. Families are used to providing quite a bit of guidance and direction to their adolescent and the very private nature of sexualised activity can leave families at a loss on how to manage this in a socially acceptable manner. Many are quite rightly embarrassed to even discuss it with professionals.
The second key challenge is to recognise that the autistic adolescent is no different in this respect to other adolescents who will have the same urges and desires with one exception – awareness of social norms. Those supporting autistic adolescents should separate these two concepts. There is a basic need for all physically mature individuals to find socially appropriate ways to satisfy bodily sensations. This understanding can sometimes be clouded by our own personal (sometimes squeamish) feelings towards witnessing this sexualised behaviour when demonstrated in inappropriate places (keeping in mind at all times responsibilities for appropriate child protection duties). Most adolescents demonstrate sexual behaviours and this is not unnatural. For many autistic adolescents this is simply a behaviour in the wrong setting. Describing it this way can help families work through their emotional reluctance to enable a discussion on how to address their adolescent’s behaviours.
A sensory issue
Once the team (staff and family) supporting the autistic adolescent agree to discuss this issue, the next step is to challenge assumptions by trying to focus on this from a sensory perspective. The physical act of seeking satisfaction is not the issue, but one of finding an appropriate time and place and keeping the individual (and others) safe. The team cannot stop the physical need from happening, so the focus is more on planning ahead for the inevitable. Solo sexual activity may be the only outlet an individual with a severe learning impairment will ever experience if they live in sheltered accommodation. The team need to work together to support both staff and families to accept and respect this form of sexual identity.
So, this all sounds great in theory but how does it transfer to practice? Below is a case study which demonstrates the unique challenges of teaching this.
Robin (not his real name) was a 13-years-old young man entering puberty; there were signs that his body was developing, such as the emergence of facial and underarm hair. He had a strong physical urge to touch his genitals and to press and rub against tables, chairs or any firm surface. He had started to do this in his classroom, home and when out in the community. Due to his autism, Robin did not understand the social rules around public and private spaces and what eventually happened is that staff and family did not want to take him into the community to do any of the activities he normally was quite good at and enjoyed (such as going to the park or going grocery shopping). If someone tried to prevent or redirect Robin, this generally resulted in aggressive behaviour, as he became physically frustrated and didn’t understand when and where he could masturbate and why people were trying to stop him.
So, rather than saying “no”, the team agreed to implemented a programme that everyone could follow to teach Robin where and when could masturbate. As Robin had limited verbal understanding, a “private time” symbol was introduced (see Figure 1 below). Robin was taught this by showing him the symbol every time he touched his genitals or rubbed against surfaces. Once he understood the meaning of this symbol, the next step was to teach him where and when it was appropriate to masturbate. The most effective method for Robin to understand this was through a visual timetable. To start with, the team concentrated on the short-term goal of allowing him privacy to masturbate in his bedroom, and he could leave an activity when he needed to. The long-term aim was for Robin to eventually learn to control the urges and understand that there were more appropriate times for this activity, as well as appropriate places for it. The underlying goal throughout this process was to allow Robin to have his own sexual identity, whilst also ensuring that this vulnerable young man was kept safe.
Adolescence is a challenging time for all families. The addition of a severe learning disability and limited social awareness makes this a particularly difficult concept to teach adolescents with autism. The team supporting the young person need to work together to discuss concerns and agree a strategy to help the young person manage their sexual urges in a way that enables them to have a good quality of life as well as a sexual identity.
Professor Catherine Tissot is Head of the Institute of Education at the University of Reading and a governor at a school for children with an autistic spectrum disorder (ASD):
Sue Piper is Director of Education, and Sarah Butcher Director of Care, at Prior’s Court School, a special school for pupils with autism: