What to expect from the autism assessment process

Topics mentioned: autism and mental health, how to speak to your GP

About: Jessica shares what the autism assessment process was like, finding support while waiting for a diagnosis, and the ways she looked after her mental health.

The National Autistic Society (NAS) defines autism as: “a lifelong developmental disability which affects how people communicate and interact with the world.” As a spectrum condition, it’s important to remember that no two autistic people are the same. Different people will experience a range of different traits in different ways - each person has characteristics which are explicit to them.

Getting an autism diagnosis can be a tough process, but support is out there to help you through it. Here’s my advice for anyone going through the autism diagnosis process.

I chose the Right to Choose (RTC) route with Psychiatry UK and contacted my chosen provider to book the assessment. Before the assessment, I had to complete detailed forms that had questions about different aspects of my life such as social communication, relationships, and emotions. My mum also had to complete separate forms with questions about different stages of my development in relation to these topics.

I was taken into a different room for my assessment. My parents then had to answer a range of questions from the doctor about my child development and life history without me in the room. The tool used to help determine my diagnosis was the Autism Diagnostic Observation Schedule (ADOS-2). This assessment uses different scenarios that helps the doctor observe social communication, interaction and interests, behaviours and routines.

I was 19 at the time and the assessment was like a conversation – they asked me about my thoughts and feelings around emotions, social relationships, interests and sensory preferences. They included more concrete topics like daily living, highlighting how autism can intersect and affect different contexts, like school, home life and socialising.

However, I know that not everyone feels this way, the assessment itself can be tiring - mine lasted two hours. It can bring up a lot of opposing emotions at once and that’s alright too.

Try to be as gentle with yourself as possible. Your assessor should give you breaks in between different types of tasks - don’t feel like you shouldn’t take these just because you’re in an assessment - it can be a lot to process! Sometimes the assessment can make you feel more self-conscious, that’s okay. It’s completely understandable why you might be feeling this way, however, try to remember that the assessor is there to support you, not belittle you.

For the last part of the assessment, the team involved met for a brief discussion. The information they gathered was assessed along with additional information, like my education and medical reports. This helped them decide if I met the criteria for an autism diagnosis or not. I was then told that I am autistic and I received a formal report six weeks later.

Because of the stark increase in waiting times, support while you wait for a diagnosis assessment can make such a difference. In my case, due to the severity of my mental health, I was told in A&E after recovering from emergency hospital treatment to seek an autism assessment. No one should have to withstand psychological agony for that long - we shouldn’t have to wait until an individual reaches the so-called ‘crisis threshold’ to consider and suggest an autism assessment as a feasible option for them. They’ve withstood enough already.

I'm incredibly grateful that I only had to wait six months between referral and an assessment - I know I was very lucky. I was still 18 at the time of referral so I was eligible for a child autism assessment with my chosen provider. With my age taken into consideration, I was seen quicker due to being deemed ‘a priority'.

Because of the circumstances, I didn’t have access to support as much as I would've liked. But thankfully, I did have access to the NAS website and the Autistic Girls Network which both contain lots of helpful information and resources.

Like many autistic girls, I was diagnosed late and only got my autism diagnosis last year. It sickens me knowing that 80% of autistic girls remain undiagnosed at the age of 18. One key reason is that autism studies are mainly done on men and boys. Women and girls tend to present autism differently, so it goes unnoticed.

Here a few reminders for you after receiving an autism diagnosis: