Autism—What’s in a diagnosis? Is finding a community more important?
In a previous blog I was explicit about what criteria had to be met in order for someone to be diagnosed with autism spectrum disorder (ASD). In this blog I’m looking at what a late diagnosis can mean—we’re a group of people who have developed a sense of self without being categorised as autistic:
All I ever wanted was to be normal, now I realised I am, neurodivergent is normal!
This can bring with it all sorts of pros and cons, a sense of relief as well as fear of discrimination. Add to that the idea that this diagnostic label could be applied formally or informally and there’s a big decision to be made.
In different countries the barriers to getting a diagnosis are varied. In the UK, although the process is free at point of delivery (which I don’t deny is fantastic) there are multiple barriers. Initially, it maybe difficult to find an understanding GP; there are still GPs with misconceptions, for example, I’ve heard people get turned away because they were able to make eye contact with their GP. Once the GP has made the referral, the waiting list at the local assessment service is likely to be years.
In most countries a huge barrier to diagnosis is cost. Some adults in the UK will choose to have a private assessment because they simply cannot wait for an NHS assessment. The challenge, when paying for a private diagnosis, will be finding a diagnostician, you can afford, who’s skilled in diagnosing adults. In America the cost can be $1600-$3500 (£1202-£2630) which is rarely covered by insurance.
In the UK, the Equality Act is in place (as an attempt) to ensure people with autism (and all other disabilities/protected characteristics) are treated fairly and without prejudice or discrimination. You do not need a formal diagnosis to be covered by the act. This means, (for example) employers and service providers should put reasonable adjustments in place so that the workplace is accessible and inclusive and you shouldn’t be subjected to bullying, harassment or discrimination because of your difference.
Once you’ve had the realisation that autism is the missing puzzle piece you’ve been searching for, it can be such a relief! So, is a professional diagnosis really necessary? For many in the autism community it simply isn’t needed. There are a variety of groups on social media for people going through the process of understanding what autism means for them as a adult. Neurodiversity is wide ranging and everyone’s experience is different. No-one’s checking if you’ve got a membership card! If you feel this is where you fit, we’re ok with that.
In Australia, this person is seeing a psychologist, they spoke about a possible diagnosis of Asperger’s a few years ago:
I have what’s called a preliminary diagnosis, which means that, in [my psychologist’s] professional opinion, if we went through the process, the answer would be “yes”, and that was good enough for me.
P (Australia)
It’s great that they’re getting the support they need without the need for a “formal” diagnosis. No one in the autism community gives it a second thought whether you’ve got a formal diagnosis, a preliminary diagnosis or are self-diagnosed. Everyone goes through different assessment processes anyway:
I question whether I have a legitimate ASD diagnosis because my therapist wrote a letter stating so after several visits but I never went through the formal testing that I keep hearing about.
Tom (Canada)
Although autism is a genetic disorder there isn’t a blood test or any genetic screening that can be performed (yet); the assessment process can feel a bit informal to some. The “formal testing” Tom described could be the Autism Diagnostic Observation Schedule (ADOS) but this has been shown to be ineffective in adults, especially females.
The Diagnostic Interview for Social and Communication Disorders (DISCO) is more effective in adults, it is more discussion based. Adults go through all sorts of different assessments, some are a couple of hours, others a full day, others happen over several weeks (perhaps to help gain a more rounded picture of the client). Some involve filling in questionnaires and discussion while others may only be discussion based with one or multiple clinicians.
A few tool people might find interesting/helpful if they’re not sure about self-diagnosis include the Autism Spectrum Quotient, Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) and this list has been put together by Tania Marshall regarding atypical traits seen in female adult. If you score highly in these “tests”, it doesn’t mean you have autism; they are purely tools that provide additional information for each of us as we learn more about ourselves.
I have an official diagnosis but, except my partner, no one else really believes I’m autistic… I’m fortunate that I now have a therapist but I’m not sure the diagnosis benefits me in any other way.
Lucy (America)
Whether you have a formal diagnosis or not, having to manage other people’s thoughts, feelings and expectations can be hard. There are pros and cons of going through the formal assessment process so it’s important that each person weighs these up for themselves.
The assessment process can be incredibly stressful, invalidating and may even negatively impact your sense of self, so if you don’t need to see a specialist, why put yourself through the stress?!
My GP was really helpful. She really listened to me then went through a set of questions, she confirmed my suspicions [that I’m autistic] and agreed to refer me for an official diagnosis but I really couldn’t cope with the stress of all that so I’m happy with my GP’s diagnosis.
Gemma (UK)
Gemma knows that she could go back to her GP at anytime and for a referral for a formal diagnosis but for the time being she’s content that her GP has agreed with her.
Some people would find it difficult to rely on a self-diagnosis for to a number of reasons including being confused by misdiagnosis, masking and lack of confidence in their own self awareness.
I’ve built my life on a foundation of masking, I’ve constantly altered things about myself that didn’t fit in. I don’t know who I am anymore. I’ve been diagnosed as bi-polar but that never felt right. If I mask so heavily, maybe that’s who I am but I’m desperate to unmask and see who am without the mask.
B (America)
Another benefit of going through the formal diagnostic process includes the impact on the autism community as a whole. The more people that receive an accurate diagnosis, the better the statistical landscape, the better educated people can be.
I’m still waiting for my formal diagnosis but I’m comfortable with the fact that those who know me well have had the same extraordinary light-bulb moments that I’ve had, my GP was very supportive and with my medical background and ability to research without bias, I’m very comfortable with understanding the criteria and have no doubt in my diagnosis.
For me, finding the autism community has been like arriving home. So much of my confusing life has fallen into place and is making sense. I’ve felt accepted and have heard experiences so similar to my own it’s been remarkable. If I had to pay for a formal diagnosis I’d certainly think twice about it, I’m incredibly grateful for the NHS but is it acceptable to wait 2 years for an assessment?!
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