How to choose the best informant for an autism assessment

What is an informant?

If you’re preparing for an autism assessment, it’s important that you choose a reliable informant to support you through the process.

An informant is someone who can share important context about you and your childhood with our clinicians. This will help our clinical team to gain a wider understanding of how you experience the world.

Your informant’s knowledge of your early development can contribute to an accurate autism diagnosis. They can also provide you with encouragement and solidarity as you navigate the assessment process.

Who can be an informant in an autism assessment?

Choosing the right informant is a crucial step in ensuring that your assessment runs as smoothly as possible. To ensure that the information provided is accurate and relevant, an informant should be somebody who has known you since early childhood.  Informants will be asked to do two things during the autism assessment process:  

1. Complete an Informant Questionnaire  

2. Attend an Informant Interview

If you like, you can ask two different people to be your informants; one person to complete the Informant Questionnaire, and another person to attend the Informant Interview. Or you can ask the same person to do both things, as long as they fit the below criteria:

Who can complete the Informant Questionnaire?

Ideally, this should be a parent or caregiver that has known you during childhood. In the absence of a parent or caregiver, the Informant Questionnaire may be completed by a sibling, a long-term spouse or partner, or a long-term friend.

Who can attend the Informant Interview?

Ideally, this should be a parent or caregiver that has known you during childhood. If this is not possible, your long-term spouse or partner may attend the Informant Interview.  

In the absence of any of these options, please let us know as soon as possible. Please note that in the interest of clinical best practice, it is not possible for a sibling or long-term friend to attend the Informant Interview.

How does the process work?

Your chosen informant(s) will be your companion(s) throughout the assessment process, providing valuable insights and perspectives to your clinician. Here is a brief overview of what they will be required to do:

1. Firstly, they need to complete a detailed Informant Questionnaire. This questionnaire will gather important details about your early childhood, developmental milestones, medical and educational history, social characteristics, and neurodivergent traits. You will need to download the Informant Questionnaire from your client dashboard and send it to your informant to complete. When they are finished, they can send it back to you to re-upload onto your client dashboard with the rest of your pre-assessment forms.

2. Secondly, they need to attend an Informant Interview, which will last approximately 3 hours. This interview will take place via our secure online platform. You can attend this interview alongside your informant if you wish to, but you do not have to be present. This session is an opportunity for your clinician to gather more detailed information about your childhood, developmental history, and daily challenges, helping to guide their diagnosis.  

Making the right choice

Here are some factors to consider as you choose an appropriate informant:  

• If you can, choose somebody who has a basic understanding of neurodiversity or is willing to learn more. This will ensure that they share their insights in an empathetic and well-informed manner.

• Make sure that the person you choose is willing to commit to helping you through the entire assessment process.

• Your chosen informant should be somebody that you feel comfortable with and can trust. During the assessment process, you will be sharing personal and often sensitive information, so it's important that the dynamic between yourself and your informant is a safe space where everybody feels comfortable and respected.

• A well-chosen informant will approach your assessment with respect for you and your individual experiences.

• Ensure that your chosen informant understands the importance of confidentiality and respecting your privacy. All information shared during the assessment process should be treated as confidential.  

How to ask someone to be your informant

The idea of asking someone to be your informant might feel a bit overwhelming. Here are a few things to consider when initiating this conversation:

• Choose a suitable time and location to have this conversation. You should talk to your potential informant in a comfortable and private setting when neither of you is in a rush.  

• Before starting this conversation, learn as much as possible about the ProblemShared autism assessment process. You will then be able to explain to your potential informant what their specific role will be.  

• Emphasise the important role of an informant in the assessment process and ensure your potential informant realises how valuable their support is to the outcome.

• Give your potential informant plenty of time to consider your request.

What to do if you don’t have a suitable informant for your autism assessment

If you do not have a suitable informant for your autism assessment, please inform a member of our team at your earliest opportunity. A clinician will be in touch to discuss alternative options with you.

While this isn’t ideal, we endeavour to make the process of accessing a ProblemShared autism assessment as inclusive as possible. Therefore, although involving an informant is an important part of ensuring a clinically robust assessment, our team will never turn a client away for being unable to source an informant.

We may be able to come to an arrangement whereby you act as your own informant, or something similar. The sooner you communicate your situation to us, the more efficiently we will be able to find a solution.