Autistic Communication Tool for Primary Care Consultations

The A.C.T. can be completed and used by any patient with a clinical diagnosis of autism or who self-identifies as autistic.

This form does NOT have to contain all the information, but it is a basis to help guide the consultation and enable you to convey key information points to healthcare staff.

It is important to note that the information listed in this tool is meant to be a summary of the reason for attending the appointment.

The form is:

To alert healthcare professionals to your autism so that they know they may need to make reasonable adjustments.

To help you think about the reason for booking an appointment with the healthcare professional ahead of time which will help you to describe the symptoms within the consultation.

To provide key information that will alert the healthcare professional of the need to make reasonable adjustments within the consultation.

To help the healthcare professional ask appropriate questions and ensure that your concerns are discussed.

The tool does not need to contain all the information you think the healthcare professional needs to know, just enough to guide the interaction.

Please note: Each section has a character limit, shown in the corner of the form. This keeps the text short and easy to read. It's important for busy clinicians to have all the information on one page, especially in time-limited consultations. This helps make the A.C.T. more useful and acceptable.

The communication tool is split up into several sections. You do not need to complete all the sections, just those relevant to you today. Below is a guide that provides information that might be useful to add to each section.

Guidance is provided in each section in audio or written format to guide you in what to write in each section.

If you want to fill out the form by hand, click the 'create form' button at the bottom. This will make a blank PDF you can save and print.

By providing your email address you agree to being contacted by the research team at the University of Liverpool with a brief follow-up questionnaire approximately two weeks after completing the Autistic Communication Tool.

This will only be a short survey asking for your feedback on the process of using the tool within your primary care consultation.

Your input is important because:

It will help us improve the tool based on real-world use
It provides valuable evidence for funding bodies, supporting the wider rollout of the tool across primary healthcare
It may help inform future development of similar tools for use in other areas of healthcare

If you choose to complete the survey that is sent to you, the feedback that you provide will be anonymous unless you choose to provide contact details.

You will be added to the Autistic Communication Tool mailing list and will receive news and updates about the tool, once every three months.

You are free to opt out at any time.

If you would prefer to provide feedback now here is the link to the survey http://bit.ly/47oSBnj

If you have any questions, please get in touch with the research team AutisticCommunicationTool@liverpool.ac.uk

Email

If you need to amend this email address please use the button above to reset the form

Your Name

Enter your name this will be printed at the top of the form

Please add a ‘Reasonable Adjustment’ flag to my patient record

This is where you indicate if you would like the healthcare professional to add autism as a ‘reasonable adjustments’ flag on your electronic medical notes. If this has already been processed through a previous request – tick N/A on the form. For more information on possible adjustments, visit the NHS webpage Reasonable Adjustment Flag - NHS England Digital Reasonable Adjustment Flag - NHS England Digital

Communication needs

In this space you would provide the healthcare professional with brief information that might help them to
communicate in a way that works for you during your consultation. It might include details of your
communication style. A few examples of what you may include are listed below:

I may sometimes take time to answer questions.’ You may let the healthcare professional know this so that
they provide you with adequate time to respond to their question, and do not ask another until you have
been able to respond.
I recognise that the way that I express pain is not ‘typical’, and I report my symptoms in a ‘matter of fact’ way
— but that this is not a reflection of how the pain impacts me’. It is useful for healthcare professionals to know
this.
I prefer straightforward communication to minimise my anxiety. e.g. say “depression” rather than “a bit
down/low mood” or “diarrhoea” rather than “upset tummy.”
I may not be very expressive or use gestures. Please do not consider my body language when listening to my
answers.
I may be uncomfortable making eye contact.
I may monologue about the situation, and it is okay to interrupt me.
I may react differently to neurotypical patients, i.e., I might laugh or say something out of place.
I may need to use a fidget gadget to help me concentrate and reduce anxiety.
Please use precise communication and avoid the use of metaphors, allusions, etc

Factors to consider for physical examinations

Explainer text

Issue(s) to be discussed in consultation

This should be brief so that the healthcare professional can very easily see what will be discussed in the consultation. You might like to state the problem(s) here that you would like to discuss at the appointment, for example:

Where on the body the symptom is located?

This diagram is provided to mark the site of your body where you are experiencing the symptom, should it be helpful. You may also use this diagram to indicate areas of sensitivity for healthcare staff to be aware of for physical examination

Further details

Here, you would provide more information about the issue that you have booked the appointment about. This section is designed to help you think about the way that the issue is affecting you and to help you prepare to answer questions about it within your consultation. The information you provide here will help guide the healthcare professional to ask appropriate questions if they need further details.

Use bullet points or brief notes
If you are attending the consultation for a physical symptom, you might like to include some of the details below to help you describe your symptom:

Site
Where on the body the symptom is located.
It might be useful to mark on the body outline in box 7 where the symptom is.

Onset
How long ago did you start to feel the symptoms?

E.g. Since last week/for two months/for the last three days.

Character
You might like to include details of how the symptom feels. For example, is it a constant symptom? Does it come and go, or does the way it feels change?

Radiation
Does the symptom ever spread beyond the main area?
E.g. usually in your ankle, but sometimes spreads to your knee/starts in the right breast but can be felt in the right armpit/ your hip but sometimes spreads to the back.

Associated symptoms
Are you aware of other symptoms that you think might be linked to the main symptom?
If yes, what are these symptoms?
E.g., Difficulty urinating and noticing backache.
Blood in bowel movement and stomach pain.
Swollen knee and recently had a high temperature.

Timing
When do you get the symptoms?
Has the symptom changed over time?
Does the symptom come on during certain activities?
Exacerbating and relieving factors. Does anything make the symptoms worse or better?
E.g. Worse if I use that hand/touch the joint/walk on it, etc.
Painkillers are not working/paracetamol helps a bit/a heat pad is the only thing that works.

Severity
How severe is the symptom?
Healthcare professionals often use a scale of 1–10 to grade things like pain. You might want to use one of the pain scales provided and see if this helps you to describe the severity of the symptom that you are experiencing

Other relevant conditions/medications to note

In this section, you may wish to record any other conditions that you would like the healthcare professional to be aware of. This could include, for example:

Conditions you feel might be related to autism, such as symptomatic hypermobility, migraine, POTS, Ehlers-Danlos Syndrome, epilepsy, or bowel problems.
Any medications you are currently taking, particularly if you are concerned about potential interactions with new medications prescribed during your consultation.
Whether you have a low or high tolerance for particular medications.

Instructions for care navigators/reception staff

Think about What you feel is important for non-clinical staff to know.

It is important to consider the setting you are visiting and what the physical environment is like.

Please be aware that it may not be possible to accommodate all requests.

The form provides a couple of options you can tick if you would like to request reasonable adjustments from non-clinical staff.

There is also space to add your own suggestions that are appropriate for you and for the setting you are visiting.

Waiting Area

Tick as appropriate

If possible, I would like to wait in a quiet place.

If possible, I would like to wait in an area with low lighting

If an appropriate place is not available, would it be possible for me to wait in the car/alternative place nearby? Please call me when my appointment is ready on this phone number:

I would like to use noise-cancelling headphones in the waiting room to help me cope with the environment. I will not be able to ear an auditory call when my appointment time comes. Could you please alert me by:

Please may I be kept informed of waiting times or if the healthcare professional is running late.

Other

Signs of me being overwhelmed whilst waiting

I may become overwhelmed being here, especially if there is too much noise/light/waiting time. When I am distressed, I may:

If you feel it is important for waiting area staff to know how you might behave if you begin to feel overwhelmed, you can include that information here. This will help staff recognise when you are becoming overwhelmed by the waiting experience and respond appropriately.

In order to help me, I would like you to:

In this space, you can add information about how you would like waiting staff to support you if you show signs of becoming overwhelmed. This will help them respond in a way that feels appropriate and supportive for you.

You may wish to include both what is helpful and what is not helpful. For example:

If I am showing signs of being overwhelmed, please do not talk to me loudly or crowd me.
Please give me space and, if possible, provide a quiet area for me to sit.