"Adult Autism Assessment"

I’m writing this after having found another post on this website that pretty much mirrored my experience, that was posted 5 months ago. My own experience was 2 months ago, so it looks to me like no learning happened from that person’s complaint, despite it being passed on to the relevant organisation and person. 

I went for an autism assessment (online due to Covid) and was told it could last 3 hours. It lasted 45 minutes, and at the end I was begging the assessor to let me leave because I was in tears and having a full blown panic attack.

Let me make something clear. I understand that they’re following diagnostic criteria, and have to tick specific boxes in order to give a diagnosis. I get that, so while I know said diagnostic criteria is outdated (which both old and recent, peer-reviewed research has shown), and while I had hoped for someone with an updated understanding of diagnosis, I can understand why they couldn’t diagnose me with autism if they were following these very rigid criteria. I disagree with this, as do many other professionals, but I can understand and excuse it.

What is inexcusable is the way I was treated by the assessor. They were incredibly dismissive, and did not listen to my experiences. They kept interrupting me mid-sentence, not giving me the time to translate what was going on in my head into words, and kept changing the wording of the questions until I, confused and distressed, said something that seemed to fit whatever checklist they were following. Because of these constant interruptions, I was terrified of saying anything, because I felt like I was doing something wrong, like I was bothering them for trying to talk about my experiences. So I would answer in short, tentative sentences, and speak when spoken to, which is something I learned to do after years of bullying and abuse and was very much something I fell back into during that assessment. This coping strategy, which I used because I was confused and afraid and increasingly upset, was then later thrown in my face as an example of “complex social interaction”, because I was “waiting for them to ask questions”, and therefore I could not be autistic, because it was “intuitive”.

I was not given any time to explain what was going on for me in that moment, which was very much something that was NOT intuitive. Autistic people, especially girls, can learn to mask, and learn to communicate in a way that seems neurotypical - which is something I have done. When you’re bullied and abused for years because of autistic traits and how you communicate, you learn to change that. The fact that I felt the need to mask and “act neurotypical” in order to feel safe DURING AN AUTISM ASSESSMENT should reflect how terrible that experience was. 

I was dismissed based on the fact that I allegedly hugged people when I was a child, and because I was good at acting normal. No questions were asked about my current struggles, and any examples of things I struggled with were shot down as “normal” and “completely okay to do”. And herein lies the issue - this assessor clearly felt they were doing me a favour. In fact, when I started crying, asked why I was getting so upset that they told me I was not suffering from an asd?

I was never “suffering” from asd. I was suffering in a world that was not made for me. I had finally found a word, a community that explained how I was feeling and how I experienced the world, and I just wanted a piece of paper that I could show my uni for when I needed support. Instead, I was dismissed and ignored so violently that I had a panic attack, and the small amount of relief and self-love I’d managed to build by talking to other autistic people was destroyed. And this person seemed genuinely surprised that I was distressed.

Autism isn’t a punishment, or “bad news”. Being told that I’m autistic wouldn’t have hurt me - it would have helped me. It would have helped me accept myself, understand myself, and allowed me to stop trying to be neurotypical, because I’m clearly not. This dismissal didn’t reassure me, it’s not like all my social difficulties, sensory issues, and general pain disappeared just because one person said I’m not autistic. I’m still here. Now I’m just traumatised and terrified of seeking help again.

Not being able to diagnose someone because you’re following specific criteria is one thing. However, regardless of whether they are autistic or not, people that come for assessment and deserving of respect, of patience, and of basic compassion, none of which I received. People come to you for help, and if they’re not autistic, then something is still clearly wrong, and it would take no effort to try and support them to find the right answer to their struggles. 

I hope this is passed on to adult autism team in Glasgow. Not because I want an explanation, but because they need to change how they do assessments.

Having 30 years experience in asd means nothing if you haven’t updated your understanding of autism in all that time. I’m begging you to actually listen to autistic people now, to look at the research that’s happening now, and regardless of how you decide to assess and diagnose, the people that come to you deserve to be listened to, and to leave feeling better, not infinitely worse.