How to be the best informant possible for an autism assessment

What is an informant?

An important part of the assessment process for a neurodevelopmental condition involves gathering valuable information from a reliable informant. If you’ve been asked to be an informant for a loved one or a long-term friend seeking an autism assessment, you may be wondering what the process involves, and how you can be the best informant possible.  

What is the purpose of an informant in an autism assessment?

Firstly, let’s consider the purpose of an informant in an autism assessment. An informant provides valuable information to the clinicians overseeing the assessment about the childhood and early development of the client. They can offer first-hand accounts of the individual's behaviour, experiences, developmental history, and strengths, providing a broader context for our team to understand their neurodivergent traits. An informant is also there to offer moral support throughout the process to the individual being assessed.

Who can be an informant in an autism assessment?

To be eligible to act as an informant for an autism assessment, you need to have known the individual being assessed since their 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

The individual being assessed can ask two different people to be their informants; one person to complete the Informant Questionnaire, and another person to attend the Informant Interview. Or they 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 the individual 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 the individual during childhood. If this is not possible, a long-term spouse or partner may attend the Informant Interview.    

In the absence of any of these options, a member of our clinical team will be in touch to discuss alternative options. 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?

As we have established, there are two key things that you will be required to do as an informant in an autism assessment. Let’s take a closer look at both tasks:

1. Complete the Informant Questionnaire  

You first task as an informant is to complete the Informant Questionnaire, which helps clinicians gather information about the individual being assessed and identify areas to explore further. This should be completed by yourself, as the informant. Here is an overview of how to do it:  

• The Informant Questionnaire will be made available to the individual being assessed, and they will be able to forward this to you via email.

• As an informant, you should then complete the Informant Questionnaire and return it to the individual being assessed so that they can upload it back onto their client dashboard. Alternatively, you can submit it directly to ProblemShared via email at ndassessments@problemshared.net.

The Informant Questionnaire allows you to provide details to our team about the individual’s early childhood, developmental milestones, medical and educational history, social characteristics, and neurodivergent traits.  

2. Attend the Informant Interview

You will then receive an email inviting you to attend an Informant Interview. This interview will last approximately 3 hours, and the individual being assessed can also be present if they wish. The information gathered during this interview will enable our clinicians to build a clear picture of the individual's childhood, developmental history, and daily challenges, helping to guide their diagnosis.  

How to prepare for the Informant Interview

You may be wondering if there is anything that you can do to prepare for your Informant Interview. Here are a few suggestions:  

1. Spend some time finding out more about neurodiversity and the assessment process. This will help you better understand what to expect during your interview and give you an idea of the questions you may be asked.

2. Reflect on your observations of the individual being assessed.  Think about their unique characteristics, strengths, and behaviours. This will help you to provide more detailed and accurate information during your interview.

3. Gather relevant information that will help you to provide the most accurate responses. For example, revisit early childhood memories (looking at old photographs can help to jog your memory), developmental milestone trackers, and educational records.  

4. Consider potential questions the clinician may ask and prepare thoughtful responses to these. Practice articulating your insights in a clear, concise, and informative manner.

5. If possible, consult with the individual being assessed before your Informant Interview. Find out what they are comfortable with you discussing and what they would prefer you to keep private. This could include information about their personal life, medical history, or any sensitive topics that they may not want to discuss.

6. Finally, remember that by acting as an informant, you are helping to support your friend or loved one's journey toward understanding and embracing their neurodiversity. By providing accurate and reliable insights, you can help them to receive the support they need to thrive.