Chapter 5 – Autism tests not fit for purpose

Further problems emerge when we look at the limited AQ10 tool itself, devised by Simon Baron-Cohen and co at Cambridge University. The tool only tests for four stereotypically autistic traits related to social challenges and limited behaviours and interests. All of these have a basis in Baron-Cohen’s dubious ableist and neurosexist theories on ‘extreme male brains’ and autistic people having mind-blindness, as in no empathy, and a lack of imagination, with little real evidence to back up his claims.

The test was also devised as a quick, cost-effective measure for triaging autism referrals (ah, austerity!). Consequently, it doesn’t allow for the grey areas that differing contexts can produce such as how you behave with your friends, versus how you behave with people you don’t know well; only allowing you to ‘agree or disagree’ to mostly binary and simplistic presumptions.

Neither does it account for complicating factors such as co-occurring neurodivergent conditions like ADHD or CPTSD, being socialised as a woman, intersectional issues or different cultural backgrounds.

Take statements 9 and 10 on the AQ10: ‘I find it easy to work out what someone is thinking and feeling just by looking at their face’ and ‘I find it difficult to work out people’s intentions’.

Clearly any difficulty experienced with making these judgements will be taken as an indicator of autism, but a misinterpreted interaction is definitely not just the trait of someone with autism, as much Baron-Cohen would like to think that we’re all hopelessly socially inept.

On the other hand, feeling sure that you can work out people’s real intentions doesn’t necessarily mean you’re right or that you’re not autistic either. What if all your life you have been bullied, ostracised, abused or manipulated by people around you, as often happens to multiply marginalised neurominorities like me, and so you come to the conclusion that you now think people’s intentions and facial expressions mostly indicate hostility, rejection or harmful intent?

In such a case, you may think that you now find it easier to work out people’s intentions from their expressions. But actually, it just means that you have overcorrected, and are hypervigilant as a result of trauma/PTSD/CPTSD, or may be experiencing Rejection Sensitivity Dysphoria (RSD).

Needing to say the ‘right thing’  in order to score enough points on an NHS autism test made me feel like I was having to deny my own complex reality and constantly game the system to be considered ‘autistic enough’.

 

I just want to have an honest conversation about how difficult it can be to live in this competitive, cutthroat and bigoted society, and be heard and acknowledged.

I’m infuriated, bewildered and disheartened by the gatekeeping that comes from one quick and poorly thought through 10-question test which is still impacted far too much by the biases and understanding of the assessor.

These assessors and their tests therefore potentially prevent you from accessing the support and self-understanding you need (whatever support you can afford that is, given autistic people get very minimal post-diagnosis support under the NHS).

It’s also a test which has been proven to have poor internal reliability, meaning it doesn’t give consistent indications each time it’s used; so who knows how many autistic people have been dissuaded from believing they have it?

If the AQ10 doesn’t cut it, how about the AQ50?

After the traumatising assessment experience, the next viable route was to complain and try to fight for the opportunity to do the A50 test. This however ended in the almost complete dismissal of my detailed complaint (where I also referenced the relevant NICE guidelines) by the Camden & Islington Foundation Trust.

I was patronisingly told that the assessors’ leading question was a result of the ‘direct and specific questions’ of the AQ10 tool and not because of their ‘personal approach to questioning’(!!??).

Another bureaucratic door slammed in my face and I couldn’t help but think they knew this was gaslighting nonsense, but were just trying to legally cover themselves by not admitting to any possible prejudice or bias on behalf of the assessor, or the fact that it’s frankly more cost-effective to have engineered a false negative result.

I finally completed the AQ50 form, only after numerous complaints and references to the Equality Act and sent it in with a supporting evidence form completed by my mum. But for all that effort I apparently didn’t ‘score high enough’ to qualify for an assessment. Quelle surprise!

As a result of my autistic naivete, ironically, I believed that my answers would be enough, not realising that I needed to have guided my mum’s answers more. They didn’t consider my mum’s lack of awareness around autism or her own biases as an older Zimbabwean immigrant mother whose own traumas marred their ability to see the extent of my challenges. Unsurprising but no less disappointing.

So many like me could’ve easily given up at this stage, filled with self-doubt about the accuracy of their self-diagnosis, as I was at the beginning of my realisation worried that I was an imposter jumping on some sort of bandwagon. It’s easy to be drained by this clinical process which can lack any  care or empathy for the person going through it.

I was just lucky to find someone with some understanding left in the rigid NHS system, who accepted my mum’s perspective may have been ‘biased’ and agreed to me submitting another form.

Ultimately though I was too jaded by what I had gone through to continue on the NHS and ended up requesting the ‘Right to Choose’ pathway with Psychiatry UK. After about six months struggling to complete their detailed two-part questionnaire of about 120 questions in total, and finally getting some help to complete it, I, to my immense relief, got a formal autism diagnosis in September 2024.

Conclusion

These standardised assessment methods cut corners by failing to include cultural and other contexts and forcing you to opt for their one-word answer choices and they can’t do that and still hope to correctly diagnose the large variety of autistic people like me who don’t live up to simplistic and faulty stereotypes.

These biases needs to be urgently, consciously identified, and unlearned and alternatives like the more thorough DISCO assessment used in place of the AQ10 and AQ50.

But with the pace the NHS moves at and the dire state it’s currently in, this isn’t going to happen anytime soon.

We further urgently need funding and targeted support of marginalised neurodivergent researchers, neuroscientists, psychologists, psychiatrists etc.

We need holistic psychiatric training embedded with intersectional and cultural understanding and for the NHS and those that shape it, to abandon ‘efficient’ measures that reduce people in all their complexities to insulting tropes.

More independent oversight and accountability are also required as are greater compassion, curiosity and understanding of how difficult and scary it can be even to talk to your GP or even your family about your mental health, let alone neurological conditions like ADHD or autism that are so badly misunderstood.

In 2024  we still need there to be better media representation of our multi-faceted lives.