Sexuality and Adolescents with Developmental Disabilities

Lucy Adamson, Chartered Forensic Psychologist, Jackie O’Connell, Senior Occupational Therapist, Carol Reffin, Highly Specialist Speech and Language Therapist, Anne McLean, Chartered Consultant Clinical Forensic Psychologist work with St. Andrews’s Health Care Service. Caroline Power, Chartered Forensic Psychologist, works with Oaktree Manor, a low-security service for adult males & females with learning disabilities. The authors have a wide range of experience working with adolescents who display sexually harmful behaviour.

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It is important to acknowledge when working with young people who have engaged in sexually harmful behaviour (SHB), that we cannot automatically apply what we know about adult sexual offending to young people, and equally what we know about young people and sexuality will not always fit for young people with Developmental Disabilities (DD). The term DD is used here as an umbrella term to incorporate intellectual disabilities and Autism.

It seems that positive sexuality and SHB’s among adolescents with a (DD) have previously been seen (and may still be seen) as a somewhat taboo topic. This is unsurprising given that it is only in the past 50 or so years that research has begun to investigate sexuality and SHB in youth (Kjellgren, 2009).

Highlighting the issues and raising awareness does not automatically keep people safe but if identification of individuals at higher risk of SHB can be made earlier, they can be directed to the appropriate avenues for intervention. Then they can receive support and victims can be reduced or abuse can be prevented in the first place.

On numerous occasions in clinical practice, we witness a reluctance to accept the existence of SHB’s in young people with DD. “This clearly falls within the realms of normal exploratory behaviour”, a comment made by a professional regarding the sexual behaviour of a young person with a DD. The behaviour in question was the digital anal penetration of a younger peer, reportedly against their will (being held and having previously been threatened with a weapon). The behaviour had been investigated by the police and prompted admission to a secure unit for assessment and treatment.

Denial and minimisation of SHB can contribute to the continuation of harm and can delay direction to the necessary support services with devastating consequences. In addition, through denial and minimisation, we run the risk of further alienating the victims of the offences through fear of not being believed. Not being believed at disclosure can have serious psychological consequences for the victim. For the victims of sexual abuse, the abuse appears to be as harmful when committed by an adolescent as when committed by an adult (Kilpatrick, Ruggiero, Acierno, Saunders, Resnick, Best, 2003), and the fact that the person committing the abuse may have an DD is unlikely to serve to protect the victim of that abuse from psychological harm.

Of course the distinction between positive sexuality and SHB’s is not as clear cut as this binary presentation would initially suggest. Tolman and McClelland (2009) suggest that rather than navigating between positive and risky, it can be more helpful to consider that young people can display both and that this can be normative. It can be difficult however to know when there is a problem, and to know whether the issue is appropriate to discuss with others in the first place, and/or whether it will negatively label the young person, thus further fuelling the feeling of taboo.

One of the potential reasons for underreporting is because there is often no black or white definitions for what constitutes ok and not ok, and often SHB can sometimes fall into the ‘grey’ area in the middle. For someone with DD that grey area may be even larger and it can be very difficult to work out whether a behaviour that a young person has displayed is abusive or not. So how do we add clarity to what is ‘normal’ exploratory behaviour? All children develop at different rates, children with DD are no different in this respect but it may be that their understanding and level of functioning is at a younger age than their chronological age and they may require extra support to help understand their sexual development and ensure they have the appropriate skills to communicate effectively with others about this.

The’ Stop It Now UK and Ireland campaign’ (run by the Lucy Faithfull Foundation) has a child sexual abuse awareness and prevention website supported by an alliance of voluntary and statutory sector partners. The website can be accessed via the following link www.parentsprotect.co-uk/home.htm. The campaign suggests the following guidelines regarding sexuality and SHB:

Pre-school children (0-5) years commonly:
■ Use childish ‘sexual’ language to talk about body parts
■ Ask how babies are made and where they come from
■ Touch or rub their own genitals
■ Show and look at private parts

They rarely:
■ Discuss sexual acts or use sexually explicit language
■ Have physical sexual contact with other children
■ Show adult-like sexual behaviour or knowledge

School-age children (6-12 years) commonly:
■ Ask questions about menstruation, pregnancy and other sexual behaviour
■ Experiment with other children, often during games, kissing, touching, showing and role playing e.g. mums and dads or doctors and nurses
■ Masturbate in private

They rarely:
■ Masturbate in public
■ Show adult like sexual behaviour or knowledge

Adolescents:
■ Ask questions about relationships and sexual behaviour
■ Use sexual language and talk between themselves about sexual acts
■ Masturbate in private
■ Experiment sexually with adolescents of similar age
NB About one-third of adolescents have sexual intercourse before the age of 16. [We would also add mutual kissing (see Biyd & Bromfield, 2006)]

They rarely:
■ Masturbate in public
■ Have sexual contact with much younger children of adults

Biyd and Bromfield (2006) would add that concerning behaviours would also include masturbation causing physical harm or distress to self and others, unwanted kissing, voyeurism, stalking, sadism (gaining sexual pleasure from others’ suffering), non-consensual groping or touching of others’ genitals, coercive sexual intercourse/ sexual assault, coercive oral sex and behaviour that isolates the young person and is destructive of their relationships with peers and family. Consideration should also be given to equality (e.g. gaps of more than 2 years), consent (ability and capacity of all parties to consent), and coercion. If force, aggression or threats of force have been used this should always raise significant concern.

What is the prevalence of sexually harmful behaviours among adolescents with DD, how big an issue is this?

It is incredibly difficult to get an accurate picture of prevalence, not least because of the limited research. There is no clear evidence for the over or under representation of people with DD amongst sex offenders (Lindsay, 2002). In a sample of 43 patients with intellectual disability in an adolescent inpatient psychiatric department, Balogh, Bretherton, Whibley, Berney, Graham, Richold, Worsley & Firth (2001) report that 17 of the males were perpetrators, 11 of which had been victims themselves.

There is perhaps an even greater reluctance to accept young females with DD acting in a sexually abusive way, because of the view of females as victims, or sexually passive (Denov, 2003), but in Balogh et al (2001) sample, five girls were perpetrators of sexual abuse, all of whom had previously been victims themselves. Female sexual offending can result in as serious consequences for the victim as male sexual offending (Saradjin & Hanks, 1996). The taboo or ‘discomfort’ around these issues, could lead to minimisation and denial of such behaviour, this could in turn lead to victim under reporting and affect prevalence rates.

Under representation of offences in crime statistics is another reason why prevalence rates are difficult to ascertain as Holland, Clare & Mukhopadhayay (2002) highlight in an iceberg analogy.

Tip of the iceberg

■ Recorded Crime statistics

Below the surface is a process involving decisions at lots of stages or ‘filter points’ including:
■ Whether the perpetrator is found guilty
■ Brought to court
■ Charged
■ Arrested
■ Whether police action follows
■ Decision to report
■ Criminal offence detected
Adapted from Holland, Clare & Mukhopadhyay (2002) iceberg analogy

Holland, Clare, Mukhopadhyay (2002) assert that decisions at these stages are also influenced by whether it is felt to be in the public’s best interest to proceed and whether a successful conviction is thought likely, adult’s assumptions and concerns for the person with DD and whether the victim themselves have a DD or are old enough (when there is concern over the potential for insufficient evidence). In addition, where the victim and offender are siblings, the family and the victim may be reluctant for the victim to testify against his or her sibling.

Considering Sexuality in a Secure Unit for Adolescents with Developmental Disabilities – A Combined Approach to addressing a Range of Sexuality Issues

Currently, within the St Andrews service, we are working at addressing health and sexual knowledge, “All human beings are sexual beings” (Outsiders leaflet, 2012). An open approach to discussion about sexuality is one of the core requisites for facilitators in all interventions. The young people within the service may find it difficult to access accurate information and clarify their knowledge, with the result that they can be observed to display inappropriate and antisocial behaviours. The ‘Out of the Shadows’ article (2006) asserts that young people with a DD have the same rights as everybody else and they need to know about sexual awareness, particularly due to potential vulnerabilities. Where it has been identified as an outstanding need (for instance when apparent in the behaviour recordings), individuals are referred to the ‘All About Us’ group, facilitated by the Occupational Therapist and Speech and Language Therapist. The group is delivered to adolescents with a diagnosis of Autism, mental health needs and Learning Disability, with associated communication needs.

The ‘All About Us’ group focuses on enhancing and clarifying individuals understanding of their own bodies and functions, sexuality, relationships and safe sexual practices. Initially individuals are assessed to determine their level of knowledge. This has revealed large gaps within the knowledge particularly around the areas of safe sexual practices, prosocial behaviours and consent issues. Young people were identified as having difficulty with language related to sex and relationships, displaying inappropriate sexual behaviour and having distorted beliefs. This was comparable to Simpson et al (2006) findings in Northern Ireland, where detailed interviews identified marked gaps in knowledge and confusion over topics such as masturbation, pregnancy, contraception and Sexually Transmitted Infections’.

This group uses a variety of innovative techniques to teach the relevant information to participants, including posters, Makaton, pictorial representations, speech and prosthetic props. Following the group the participants have displayed a reduction in the number of recordings of inappropriate and antisocial touch on the behavioural monitoring recordings, and have demonstrated an increased level of knowledge.

In addition to the ‘All About Us’ group there is an intensive treatment programme run within the service for the adolescents whose sexually abusive behaviours are the predominant issue prompting admission. The group approaches treatment utilising cognitive behavioural approaches within a Self-Regulation/Good Lives framework.

These two groups form part of a multi-modal treatment programme where it is essential to identify and formulate the individual treatment needs. Treatment options for adolescents with DD in our setting always involve (amongst many things) facilitator consideration of the following:
■ Understanding of consent
■ Provision of appropriate sexuality education
■ Opportunities and/or understanding re appropriate sexual expression
■ History of victimisation
■ Understanding of the impact of SHB’s
■ Individual’s verbal comprehension and expressive language

Summary

Ensuring that all individuals with DD have a core understanding of healthy and safe sexual practices is key to enabling them to understand interactions around them and ways in which to engage with others. Many individuals lack this basic knowledge leaving them open not only to being vulnerable themselves, but also to potentially engaging in sexually harmful behaviour. The ‘Stop It Now’UK and Ireland campaign’ states that whether talking with a child, adolescent, or adult, about sexuality, the conversation is just a beginning and not a one-time event. It is important for adults to set the tone for everyone by talking about the range of healthy sexual behaviours and speaking up about sexual abuse.

According to Hackett (2007) in M.C.Calder (Ed.) the vital point is to ask not ‘what is effective’ but ‘why it is effective’. It may be that the key to real success is concerned with the therapeutic engagement of both the carers and young people, over and above therapeutic modality, though this is an area in which research is developing. With increased research and awareness the topic of sexuality in young people with DD may become less ‘taboo’ and it is hoped that early support and intervention can be promoted with positive outcomes.

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