People with intellectual disabilities and autism have typical sexual development and have a right to experience intimate relationships, but they have unique needs that we need to meet when providing sex and relationships education.
Intellectual disabilities (also known as learning disabilities) and autism frequently co-occur with approximately 50%-70% of people with autism also having intellectual disabilities. In addition, approximately a third of people with intellectual disabilities also have autism.
Sex and relationships education sometimes only occurs when something risky has happened and is often a ‘reactive’ intervention for people with intellectual disabilities and autism. It requires understanding complex information, and there is an assumption that it will be applied from the ‘room’ to the ‘real world’ when this is not often the case.
There is existing expertise in services about sex and relationship education for this specific group, but it is often neglected in research. Therefore, we assessed experienced professionals’ views on the unique needs of people with co-occurring intellectual disabilities and autism when providing sex and relationships education.
We looked at the views of 21 health and social care professionals (e.g. psychologists, nurses, social workers etc) experienced in delivering sex education for adults with co-occurring intellectual disabilities and autism and asked them the following questions:
We used three questionnaires (Delphi method) to gather group consensus and did a thematic analysis of data to find main themes. We found professionals had a lot to share on this topic! They agreed on the importance of sex and relationships education for people with intellectual disabilities and autism. They also identified a range of ways to support the unique needs of this group and this included assessment, topics and adaptations. Adaptations differed for those with either intellectual disabilities or autism.
Areas that could have an impact on the sex and relationships education for this group included their cognitive abilities, memory and attention, communication, social and emotional interaction abilities, and sensory sensitivities.
Factors that can impact this group in navigating sex and relationships can include difficulties with understanding social cues and rules, problem-solving social situations and with understanding what others might be thinking or feeling. They may also make literal interpretations of language possibly leading to misinterpretations. Understanding emotions, both their own and others, can also be challenging. The unique needs of this group are also likely to impact how they process and recall the taught information in sex and relationships education.
Whoever is undertaking this work with sex and relationships education, whether parents, professional, or teachers, undertaking an assessment at the beginning is important. This assessment can include the individual needs and preferences of the person, their current knowledge about sex and relationships, and their cognitive and communication abilities. There should also be a risk assessment (e.g. possible risks to others, to self, from others) and assessment of possible sensory sensitivities to create a sensory profile.
Memory difficulties are not necessarily experienced by all people with intellectual disabilities and autism. However, adaptations used to support memory are likely to be helpful for this group. This can include focusing on one idea at a time, breaking down information into smaller chunks, and giving a summary sheet of the session to people to help them remember what was covered.
It is important to adapt communication so information can be understood. This can be done with clear, consistent, and simplified language and using the person’s preferred way of communicating. Methods of communication include visual aids, pictures, drawings, objects, and easy read material. We should frequently check the person’s understanding and use concrete or literal language (e.g. no metaphors).
In our research, we found that sensory sensitivities can be a real challenge for people. If they are present, it is important to adapt sex and relationships education. There should be an understanding of the person’s sensory profile (i.e. if physical touch, smells, certain textures are aversive) and adaptations (e.g. role play or social stories) to support the person on how to communicate or negotiate these needs.
It is also important to plan the sessions based on what was learnt about the person during the assessment, including their needs and preferences and current knowledge base. It would be useful to provide a structured visual session plan at the beginning, adapt length and number of sessions to individual needs and abilities, and have a distraction free setting.
Topics should be tailored to individual need, ability, knowledge, and preference. Some examples are:
It is vital that the person feels safe to talk about complex and difficult issues so a trusting relationship with the educator is vital. Social rules and boundaries can support the person to know what to expect from the sessions, including confidentiality and session ‘rules’ as this can help with understanding of the ‘social rules’ of the session. Creating boundaries may also reduce anxiety and increase a sense of safety.
Social experiences can be complex and abstract, so we need to teach these in a clear and concrete way. Recommended teaching methods include visual aids, drawings, and pictures to teach how to recognise facial expressions and body language. Role-play, Social Stories and ‘Circles of intimacy’ can also demonstrate which behaviours are appropriate in different relationships.
Objects can help to explain various concepts (e.g. sanitary items, model penis, condoms, etc.). Visual media such as YouTube, DVDs, clips from TV programs / soap operas / films can also be useful, whilst maintaining the appropriate boundaries with educator.
It can be hard for person with intellectual disabilities and autism to apply what they have learned in the sessions to the real world, so thought should be given about how to do this. There can be benefits to involving professionals, family members / carers, or the person’s partner. A summary sheet of information taught in sessions could be given to a carer / family member to remind the person of key messages.
Life has changed significantly due to Covid-19 over the last year and this will have an impact for the foreseeable future. One of the impacts has been on social distancing and physical intimacy. This has a knock-on effect on how we manage our relationships.
In a recent paper – The four horsemen of fear: An integrated model of understanding fear experiences during the COVID-19 pandemic – the authors argued that fear experiences during the Covid-19 pandemic are organised on the psychological level around four interrelated domains, namely (1) fear of the body / fear for the body, (2) fear of significant others / fear for significant others, (3) fear of not knowing / fear of knowing, and (4) fear of taking action / fear of inaction. These domains represent the bodily, interpersonal, cognitive, and behavioural features of fear.
But what happens when these fears start to have behavioural and psychological implications, such as the avoidance of human contact, considering ourselves or others as dangerous, fear of going out and increased negative thoughts and anxiety?
Covid-19 has helped to legitimise talking about sex and relationships in the context of what you ‘can’ and ‘cannot’ do, and we are talking about physical intimacy more than ever. We also need to be clear about the rules – as far as we can be – and how quickly they can change. One of our jobs is to be a translator in this and make the messages as clear as we can.
During the pandemic, the rate of development of a relationship will be impacted and there will be increased use of the internet. For many people, especially people with intellectual disabilities and autism, conducting relationships via the internet is not unusual, and actually avoiding physical contact may be a relief. For others it may mean painful separation, as well as a lack of support and comfort in a time of increased anxiety and loneliness.
For those without an intimate relationship it means the likelihood of finding a partner in these times is decreased, and even the physical comfort drawn from friends and family may be limited.
Relationships in the virtual world provides us with opportunities and challenges, but with opportunities can come greater risk. Opportunities can include the ability to offer virtual support. A recent study found that the use of online support by people with intellectual disabilities living independently during Covid?19 had increased, specifically the use of unplanned online support. However, the increased use of the internet can increase risk, including the frequency of use and familiarity of search facilities might mean people find themselves accessing websites or connecting with people they did not expect. Familiarity also reduces vigilance, but the need to guard against risk does not become less.
Finally, returning to the ‘new normal’, will be interesting for people with intellectual disability and autism. We will have taught people to avoid contact – so how do we reverse new habits while maintaining flexibility in case the rules change again? We are in a careful balance here, so we need to give a lot of space for people to explore their concerns.
People with co-occurring intellectual disabilities and autism have unique needs that must be understood and adapted for when providing sex and relationships education. Covid-19 has added new challenges to this arena, and people with intellectual disabilities and autism and their supporters will need to take this into account in relation to navigating sex and relationships as we move forward.
Dr Kelly Asagba, Clinical Psychologist;
Professor Jan Burns, Clinical Psychologist
Dr Sophie Doswell, Clinical Psychologist
If you are interested in more information about Sex and Relationships Education for Young People and Adults with Intellectual Disabilities and Autism, take a look at the authors handbook. And you can download a sample here.
