It can be helpful to find out some information before your first meeting, but we know this is not always possible. If not collected prior to the first meet, then in the first meeting you need to try and find out how you can best support the individual in the time you have with them and how you can work together most effectively. A lot of this information can be collected using our extended communication passport here, or if this extended communication does not suit the needs of the individual, here is the shortened version.
It is essential you start to build rapport with the autistic patient from the start as this can often take some time and our research suggests it can be complicated for both the clinician and the patient. A great place to start with this is acknowledging the individual’s autism and that you will need to work together to ensure treatment will accommodate and support them properly.
Information to be looking out for:
Known sensory barriers: these are sensory sensitivities that impact the individual in negative ways. For example: harsh lighting, doors banging, computers humming and various perfumes might all be overwhelming for an autistic person, making it almost impossible to concentrate whilst they are receiving these sensory inputs. It is important you find out what these barriers are and how you can help to reduce their instance during your meeting, for example, not wearing aftershave on the day you know you will meet. For more information on sensory sensitivities, click here. For information specifically around sensory sensitivities and eating, click here.
Known sensory enablers: These are sensory stimuli which support the individual in their everyday life. For example: a fidget toy, sunglasses, ‘stimming’ and lavender essential oils. These examples will be different for each individual and the person may not be conscious of them, for example always rubbing the sleeve of their jumper unconsciously. Again, it is important you are aware of these and encourage the use of them in your meeting, especially if the individual becomes anxious, for example, encouraging them to use their fidget toy or to ‘stim’. More information on how you can help individuals to understand their sensory wellbeing and to get the most out of their sensory sensitivities can be found here.
Their communication style: How do they like to communicate? Do they like it when they can take the information away with them and process it in their own time? If so, consider handouts. Do they like visuals with less text? Consider social stories or the use of a white board for diagrams. There is a helpful section on this in the Communication Passport found here.
Session plans and agendas: How are you going to spend the time you have together? This can be a cause for anxiety in everyone, not just autistic people. If possible, a small framework of what you intend to cover in your interaction either prior to the meeting or at the start of the meeting can help ease anxieties and build rapport. This can especially reduce anxieties when approaching group work, which may already be hugely anxiety provoking.
Any other causes of anxiety: It is important to understand situational anxiety and the aspects of the current situation that are most anxiety provoking and how you can reduce this anxiety together. This may not be ‘typical’ or obvious so make sure you always ask. It could be that your chair sits directly opposite theirs or that the switches are the ‘wrong way around’. These small adaptations can make a huge difference to rapport and understanding.
It is important that you clearly introduce yourself: your name, your role and your expectations from both parties of any clinical encounter you may have. As well as introducing yourself, it is important to ask the individual how they would like you to refer to them, what pronouns they go by and any other information that they feel may be important. It can be helpful to collect this information on a communication passport (here) either before the session or, to build rapport, supporting them in completing it in their first session. This demonstrates to the patient that you want to support them as an individual and to acknowledge their autism.
‘Take away’: If possible, it might be beneficial for the patient to be given a ‘crib sheet’ with the key people involved in their care, perhaps with headshots, for them to keep and refer to. This will also help them know who to talk to about particular concerns. See below for guidance.
Don’t just assume!
Although you may have asked at the start of treatment and thought you understood someone’s needs, don’t assume you know everything. Check-in every now and then specifically regarding their autism and how you are supporting them. If you made an adaptation- check that it is still helping, or if you need to do something a little different. It can be anxiety provoking knowing that someone has made a change for you and if this is now a hinderance, it may be more anxiety provoking to ask them to stop! This is inline with the ‘camouflaging’ presentation so often seen and the desire to fit in. However, also be prepared to have an autistic person tell you bluntly when something is not working- this information can be added to communication passports to be shared with people who may be supporting them in the future.
What can you do in sessions?
Environment checks: you have now hopefully gathered the information above, either prior to the meeting or during the first meeting. Now its time to apply it- make sure you understand each of these sensory needs and that you can think together on how to support these. Ask the question when you would do a normal check-in: Is there any stimulus in the room that might distract/ make you uncomfortable/ overwhelm you? Autistic people can become highly anxious and be preoccupied by certain sensory inputs. It is important to address this when you are in the room, to reduce anxiety and to increase engagement.
Social check in: Autism not only impacts how people experiences the world in terms of their senses, but also in a social context.
Keep it regular: cognitive rigidity is also something often seen in autistic individuals. Keeping meetings at the same time/ same location can decrease anxiety by increasing predictability.
Plan for the inevitable: It may not always be possible to get it right 100% of the time, you can’t stop everyone slamming doors all of the time and you cant ensure you always get the same time-slot/ meeting room. For example, a specific sensory barrier might be fluorescent lighting. If your meeting is at 4pm on a dark January afternoon, it might not be feasible to avoid fluorescent lighting. Ask how they would like to be supported in situations like this where there may be a level of unavoidable sensory discomfort- planning for these situations in advance might be beneficial. This can be done with a back-up plan, try adapting this meal-time template found here. You might not always have these ‘back-ups’ to hand and it might be a retrospective activity at times, to understand what could have been done and to be prepared for it to happen again.
Anxiety management: a lot of these anxieties are experienced in all areas of life. Going through and thinking about strategies for anxiety management in different situations outside of the session settings using the same template above can be really helpful
Special Interests: it is common for autistic people to have special interests. Finding out what these are can be beneficial for rapport and for treatment adaptations. For example, if you know that an autistic patient has a special interest in a specific comic and that they struggle with recognising and labelling emotions, you could ask them to bring that comic in one session and find opportunities to recognise and label emotions within the story.
Handouts: if the patient you are seeing has said they like to take information away with them, this does not necessarily mean you have to print off sheets and sheets of paper and have everything typed up prior to the session. It could be as easy as allowing five minutes at the end of each meeting to write down the most important summary points, or allowing the patient to take a photo on their phone of any notes you may have made on a white board. Print outs can also be very helpful if available. We have also found YouTube to be particularly useful for some, specifically Pooky Knightsmith’s videos (found here). Pooky is an autistic person with lived experience of an eating disorder and is an important part of the PEACE pathway.
Check in with pace: how are they managing the pace of your sessions? Do handouts help? Processing speed can be different in autistic people, make sure you check in occasionally. This might mean you need to have slightly longer sessions, or that you break your sessions up either over a couple of days or with a small break in between.
Understanding their autism: how do they want you to talk about it? How do they want you to support them? How do their view their autism? When did they get diagnosed? Do they fully understand what the diagnosis means to them?
Convey hope: for a lot of autistic people with EDs, this will not be there first time in ED treatment. Research into traditional treatment which does not take into account individuals’ autism has suggested treatment can be less successful than for those without autism. They may feel discouraged by the system as a whole, especially if their autism was picked up later in life. Acknowledging the challenges they have had and that their individual needs will be supported now in order to convey hope is important.
If someone has just recently had an autism diagnosis, they may need support with this. We have compiled a list of resource that the PEACE patients have found useful (found here). It is important to contextualise their rigidity, social experiences and sensory sensitivities. It is also important to convey the benefits of a diagnosis, if these have not been shared already. We want PEACE patients to realise that their autism is their super power and not a negative label. We have found the ‘My World’ worksheet (found here) particularly helpful with newly diagnosed autistic people.
Correcting previous misdiagnosis
Access to appropriate services/ benefits are available. These benefits can be useful if spent on the autism itself eg weighted blankets are very costly.
Entitled adjustments from employer, university etc. Lots of companies now are making autism ‘schemes’.
Peer support groups, (e.g. National Autistic Society)
Having your treatment team understand your needs in the context of your autism and being able to adapt and adjust.
Project Manager of the PEACE pathway
Professor Kate Tchanturia
Consultant Clinical Psychologist/ Principal Investigator of the PEACE Pathway