Navigating the Autism Assessment Process: A Step-by-Step Guide

A pre-assessment badger

Have you ever felt like you're at the foot of a towering hill, gazing up at the daunting path ahead? If you're yet to undergo your Autism assessment, that feeling might be all too familiar. In my previous posts, I delved into my emotions post-assessment and the subsequent period of grief. Today, I'll share the steps I took on my assessment journey. While I'm not a medical professional, these insights are based on my personal experience within the NHS system in the UK. Remember, there are various paths to assessment, including private consultations that might better suit your needs.

Step One:

Firstly, when I suspected that I may have Autism I spent a lot of time doing online tests and quizzes. You can also go on to the NHS website and look at the “signs of autism” in children and adults. For some this may provide a “lightbulb” moment where you see your own behaviours.

Step Two:

Secondly, once you are pretty sure you are autistic you need to speak to your GP or a medical professional. In this meeting the Doctor will go through a questionnaire with you and ask you about how you are in social situations, how you are with emotions, what you was like as a child and so on. Your responses to these questions are weighted and the higher you score the more likely you are to be autistic. It is really important to be as honest as you can with this questions. If the questionnaire hits a certain score then you are referred to the local Autism or Neurodiversity team.

Then you wait. For some people the wait for an assessment can be two to three years. I was lucky as I got a cancellation which meant that they found a space for me. This is not likely to be the case for everyone. At this stage you can tell your employer that you are “under investigation for Autism Spectrum Condition” and they will make reasonable adjustments for you. They have to. It is the law.

The Assessment:

Meeting with a Doctor

Once you get your assessment you will need to clear up about three hours of your day for the process. It is long and in depth. Some people have shared snippets of their assessment, I am not going to share mine as I don’t want to, and the level of understanding that the clinician has gathered is extraordinary. It is best if you have someone with you who knew you as a child or knew what your childhood was like. For me, I had my wife who has spent many an hour talking about me to my Mum so knew all the answers to anything that might be asked.

You are asked about your upbringing and how you was in school. You are asked about your work life and any issues you have. You are asked about routines and habits. You are asked about how you communicate with others. Basically, every aspect of life is discussed. If this sounds daunting, it can be but I found that the person doing the assessment made it easy to talk. They aren’t there to judge you but to find out what help you may need. Once it is done you go away and I hyper-fixated on whether or not I failed my assessment or not.

Awaiting the Results

Finally, you await your results. The report has to be written up and then gone through a Multi-Disciplinary Team meeting which includes doctors and psychotherapists. If they decide that you meet the criteria for Autism then you are confirmed. They may decide that they need more information and speak to you again. Or they may decide that you don’t have it. Some people will, unkindly, suggest that people can fool the assessment, but it would be difficult do to the large number of medical professionals that have to be convinced  in order to confirm a diagnosis it seems unlikely. My results were delayed because the assessor was, selfishly, having a baby. Well, his wife was. He should obviously plan his family around my needs.  

I was told that my results were in. An appointment was booked. The Wife and I went along. He went  through the report in detail. Answering any questions that we had. I was found to meet the criteria for Autism Spectrum Condition. I have spoken about this at length elsewhere so am not going to go into detail here. The report is then sent along to your GP for their files. You are given a copy of it to keep. To read. Share on the internet. As well as a cover sheet to share to your employer or benefits provider.

Conclusion

For me, the whole process took a little over eighteen months from GP to results. This can vary massively depending on where you are and how busy the assessment team is. If you have accommodations, such as being unable to leave the house, then the assessment should be able to be done online. You can pay privately, but that can cost thousands of pounds. Be careful though, as some GPs don’t accept non-NHS diagnoses. You would need to check 'Right To Choose,' which discusses pathways to assessments.

I found getting the assessment and diagnosis officially helped me come to terms with my neurodiversity. However, it is important to remember that a self-diagnosis is valid. With a self-diagnosis you can ask for reasonable adjustments at work and with medical appointments.