Ten points to remember when working with women on the spectrum

  1. There are huge variations within the autism spectrum. Therefore there are many women with ASD who present in a very typically autistic manner. On the other hand, there will be other women who have not received a diagnosis, or whose ASD issues appear “mild”, though they might be equally disabling.
  2. Special interests can often be less odd – e.g. intense interests in literature, drama, fashion, makeup, food, rather than lists, or trains.
  3. Avoidance, related to anxiety, can be a typical response. Such avoidance can often mean that the person is overlooked.
  4. Women on the spectrum often observe interaction more, and may be more interested in developing social relationships.
  5. Higher levels of interaction and interest might mean greater risk of bullying and exploitation. This starts from school – mothering in primary school, can then develop into chronic bullying (verbal and physical, often for years) during secondary school.
  6. Social naiveté, mis-reading the non-verbal communication and unusual ways of communication can combine to make a woman on the spectrum much more vulnerable in relationships, and also to sexual exploitation or assault.
  7. This might lead to the misapprehension that someone who they like is also interested in them. This can manifest as persistent attention giving, not unlike stalking.
  8. They might have a better grasp on emotions than men, but may have unusual ways of perceiving these or describing these.
  9. They might learn to mimic the interactions and conversations of others.
  10. Women may cope with one to one interaction better than men on the spectrum, possibly because of the mimicry, but also because there is much less social information to cope with than in group settings.
  11. OCD like behaviours can be often be present, and might require separate treatment if they are causing significant difficulties.
  12. Self-harm (such as head banging, or cutting) might be the consequence of sensory hypo-sensitivities, rather than just as a means of regulating emotions, or communicating. There may be a lack of awareness as to why self-harm is a cause of concern.

Top tips for working with women (and men!) on the spectrum

  1. Think about the social environment:
  2. Limit number of people the person has to deal with. Favour 1:1 meetings if possible. Large MDT style meetings are likely to be overwhelming.
  3. Key worker – build up trust over a large period of time, and if necessary change key-worker if rapport or trust breaks down. Funnel information through the key worker.
  4. Be aware of the impact of large group/ unstructured social situations, these may be overwhelming, so should be introduced cautiously if at all.
  5. Ensure the person has a private “safe zone” to return to.
  1. Think about the sensory environment:
  2. Be aware of any particular sensory issues the person has.
  3. Avoid flashing lights, background noise, fluorescent bulbs (particulary if flickering, prominent smells (even if pleasant), fire alarm tests.
  4. Choose meeting rooms that are unlikely to be interrupted, or where there will be few people walking past.
  5. Think about what residential space the person is offered – is it quiet, and away from disruptions. Will there be building work? How will this affect the person.
  1. Think about your communication
  2. Say what you need to say. Be direct and unambiguous. Don’t hint, or imply. Show if you can.
  3. Don’t expect people to get things from your tone of voice or facial expression – they often won’t.
  4. Think about using sketches, flow-charts, written bullet points for information that the person needs to know.
  5. Address one issue at a time. Don’t try to cover everything at once, as this will overwhelm.
  6. Don’t overwhelm with choice, again one thing at a time. Some people can’t make a choice until they have direct experience of the choice being made – problems with social imagination.
  7. BUILD UP THE RELATIONSHIP FIRST BEFORE BEING CHALLENGING. TRUST IS EXCEPTIONALLY IMPORTANT.
  8. When having to challenge, don’t expect the person to know that they have done something inappropriate. Be very specific about what you want to change, and where and when. Remember the person will be more reliant on rules for dealing with social situations, so if taught one rule, might assume this applies in all situations.
  9. When you have something important to communicate, ensure the person is in an emotionally stable and receptive state – not emotionally aroused.
  1. Think about their communication
  2. They may be more direct, or ask questions that might otherwise be considered inappropriate, expect and accept criticism, and consider being more tolerant of unusual and hostile seeming communication.
  3. If someone has said something really inappropriate be clear that this is inappropriate and patiently explain why.
  4. Some people on the spectrum will drift rapidly off the point. If this is the case, agree a polite way of bringing them back to the point.
  5. Some people on the spectrum often communicate in an extremely concise way. Conversation might be uncomfortable, so again, be business-like and don’t over-extend unnecessarily, don’t over-indulge in small talk.
  6. Eye-contact – don’t force this (as if you could), some people might be more comfortable in a non-eye contact sitting position, e.g. next to each other.
  7. All because someone doesn’t look or sound upset, doesn’t mean they aren’t. If they have been exposed to a number of triggers, this might mean they might be at bursting point.
  1. Think about emotions and relationships
  2. Don’t assume the person can do emotion talk, or can reference emotion words to particular inner or outer states.
  3. Don’t assume understanding of non-verbal communication around emotions – tone of voice and facial expression.
  4. People on the spectrum have their own style of relating – some are gregarious, some are highly avoidant, and everything in between. Don’t try to change this without a good reason.
  5. People on the spectrum might not know when someone is a friend, or partner, and may find it difficult to differentiate between different types of relationship. Perhaps give guidance about how to differentiate.
  6. There may be dependence on one or two people (often parents or siblings) and break down of these relationships can make the person very vulnerable be aware of this.
  7. Don’t assume the person will ask for help if they need it. They may not have acquired the skills or the recognition to know when they need help.
  1. Coping with planning and managing activities of daily living
  2. Even highly functioning adults with AS often need more help with coping on a day to day basis. Bills, documents, appointments, shopping, cooking, cleaning can often present significant challenges to people with ASD. Therefore, perhaps be prepared to offer more support than you otherwise would for these things. Don’t assume the person is trying to offload work, or becoming dependent.
  3. Automated telephone systems are notoriously upsetting for many of my clients – help to navigate these can often be helpful.
  4. Help people prepare for important phone-call or benefits interviews etc. Be prepared to attend with them if necessary.
  5. Use timetables and schedules to help organise housework and shopping.
  6. Try to have meetings at a regular time.
  7. Avoid “multi-tasking”
  8. Try not to solve all the problems at once. Allow time for people to assimilate information and the choices they make.
  1. Woman specific issues
  2. Apparent competence – being able to communicate well one to one, might mask vulnerability in other settings – don’t assume the person is coping. Try and find out beforehand what situations they feel uncomfortable in.
  3. “Normality” of special interests might mask the high intensity with which interests are pursued, and risks of exhaustion, and anxiety. Encourage breaks, and rest periods.
  4. Risk of exploitation in relationships – abuse, including sexual, physical and emotional. The person might not recognise what is and isn’t abuse, so you might need to ask specific questions if there are any doubts. Asking about “abuse” might be too general.
  5. Recognising bullying might be a challenge to – explanation about what this is and how to recognise might sometimes be necessary.
  6. Social naiveté might mean that some women might not be aware they are giving out signals that by non-autistic people might be perceived as encouragement. Thereforeexplicit conversations about how the she feels about another person, and whether she wants a relationship is important.
  7. Similarly, judging whether someone poses a risk, and whether they have ulterior motives might be difficult for a woman on the spectrum. Again, explicit conversations about this can be helpful.
  8. If you think someone has un-recognised ASD (which is often the case with women) speak to local services about whether this might be the case, and find out how to refer for a diagnosis.