Why the assessment process is about so much more than just receiving a ‘label’

“Why would assessment matter if I can’t get NDIS support anyway?”

“Is a formal Autism/ADHD assessment worth it?”

“Why would I need an assessment? I’d only be Level 1.”

“Do I really need a label?”

I often hear questions like these from clients exploring whether they might be Autistic and/or ADHD.

And I get it. The journey can be long and confusing, especially for women who have spent years masking, adapting and simply making do because that’s what they’ve always done.

Assessment is expensive. It takes time, energy and effort — things that many of the women who come to me for support already feel they have very little of.

And yes, often, if you are diagnosed as Autistic and are assessed as requiring Level 1 or 2 support, the chances of accessing NDIS funding may be slim. And if you’re diagnosed with ADHD and interested in trialling medication, you’ll still need to see a psychiatrist to explore whether medication is appropriate for you.

So the question, “Why should I get an assessment?” makes a lot of sense.

There are no universal answers. But here are a few different perspectives I’d like you to consider with me.

Research

Research exploring the adult experience of being diagnosed as Autistic or ADHD is still relatively limited. But what we do have suggests that assessment can be about much more than obtaining a diagnostic label.

People who go through an autism assessment in adulthood often describe feeling different, like they don’t fit in, confused about themselves, and exhausted from masking autistic traits. There is also evidence that some people have had their autistic traits interpreted solely through the lens of mental health conditions, without Autism ever being explored.

After assessment, people have reported experiencing greater clarity and relief, as well as increased confidence and self-esteem. A meta-synthesis also found that diagnosis could help people connect with other Autistic adults who shared similar experiences and, with greater certainty about their neurotype, seek more appropriate supports and services.

(Kiehl I, Pease R, Hackmann C. The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis.)

Similar discoveries have been made when researchers looked at the advantages of an ADHD diagnosis in adulthood. One study identified a three-stage continuum.

Before assessment, people described experiences such as low confidence, functional difficulties, guilt and stress.

After assessment, people reported feeling more confident and more capable of creating a meaningful and manageable life.

The third stage involved a shift in understanding — recognising that ADHD could be something to work with and source of strength rather than simply something that had been going wrong.

(Fleischmann A, Fleischmann RH. Advantages of an ADHD diagnosis in adulthood: evidence from online narratives.)

There is also growing recognition of the importance of comprehensive, in-depth assessment. Good assessment shouldn’t rely on questionnaires alone. It should involve clinical interviews, developmental history, consideration of other physical and mental health conditions, and information from people who have known you across different stages of your life.

A quick assessment that relies on limited information can increase the risk of both false positive and false negative diagnoses, as well as missing co-occurring conditions. And in fact create more risks for people accessing them.

(Coghill D. Accurate assessment of adult ADHD: a key to better outcomes.)

Research also suggests that untreated and unsupported ADHD is associated with a range of significant health risks and, in some studies, with a reduced life expectancy. These findings have been linked with factors including mental health comorbidities, impulsive and risky behaviours, and increased risk of suicide.

So, no- assessment isn’t simply about getting a word on a piece of paper.

Personal experience

My personal experience of being a late-diagnosed AuDHD woman is, in many ways, similar to the experiences of many women I’ve crossed paths with, both professionally and personally.

Growing up, I was shy and felt invisible a lot of the time.

From the outside, perhaps it looked like everything was fine. I had friends. I didn’t create too many problems. I was smart and did well at school. I loved after-school sports and ate most things.

But I was also clearly the weird and awkward child.

My idea of friendship was to study what a good friend was supposed to be. I would agree with people, follow the one friend I was obsessed with at the time, and often sit on the outside of the group, quietly observing.

I loved daydreaming and imagining every second of my future.

Painting. Doodling. Running. Climbing.

I was a very sensitive ('too sensitive') child and felt 'too much'. Or, at least, that’s what I came to understand about myself from the reactions of other people.

I had a strong sense of justice -and what I considered common sense- and when I started voicing it as a teenager, I started getting into trouble.

It was such a push and pull.

I wanted to follow the rules and be a ‘good student’, but I also felt this need to speak my truth. It was confusing.

Sometimes I was the loudest person in the room. But at the same time, I felt like nobody saw me or would remember I was even there.

I had many friends, but I also went through periods when everyone seemed to turn their back on me. I was bullied a lot.

All of this was happening, and yet nobody seemed to notice.

Good grades. Not too much drama. Pretty face.

Along the way, right up until I was 30, I gave myself plenty of labels:

Annoying. Angry. Too much. Not enough. Too sensitive. Naïve. Childish.

And I kept pushing through anyway, pursuing my dreams.

I intuitively knew what I wanted, but it was messy. I could be both small and outspoken at the same time. I was constantly trying to work out how to be myself while also figuring out which version of myself other people would accept.

When I finally arrived at a place where I knew I needed a formal diagnosis, something in me started to feel relieved.

After a lengthy journey- one I’ll explore with you another time- I finally had my assessment. And I felt mirrored. Seen. Understood.

I had a place where rambling about myself was, for once, just something I was allowed, or eve expected, to do.  And I saw myself. 

Then came the words:   “You are Autistic and ADHD.”

Alongside some hefty imposter syndrome, there was an enormous sense of relief.

It felt like the ice cube around me was finally melting, and I was coming out of it- alive and truly me.

Since my assessment, I’ve connected more deeply with myself and with parts of me that hadn’t seen the light for a long time.

I’ve connected with new and dear Autistic and ADHD friends. I’ve unmasked with people I felt safe enough to trust. I take up more space. I advocate for my needs and for others.

Many of the old, harmful labels I had given myself have lost their grip.

I’m much kinder to myself than I used to be.

I’ve also found my Radical Joy.

And while I still struggle at times, I feel more equipped to ask for the right support, understand what I need, and take responsibility for my reactions and actions.

So, is assessment worth it?

I understand why you might be wondering whether investing in an expensive assessment is worth it.

And I trust that you will make the decision that is right for you. 

But I also believe that a good assessment can be about so much more than a label, a piece of paper, or three very expensive hours with a psychologist.

It can be part of understanding your identity. Understanding how your brain works. Making sense of your history. Understanding what you need and learning how to ask for it.

It can open the door to appropriate support, community and connection.

And sometimes, perhaps most importantly, it can be an experience of being seen and understood in a way that you may have been missing for a very long time.

The 'label' isn’t the point. What's behind it is.