Please note, this blog refers to adults only
I think I may be autistic – Should I get a formal diagnosis? This is a question I am asked often. Maybe a partner has suggested you may be autistic, maybe you’ve been looking at information online, and see some things that resonate, but perhaps not everything fits in relation to being autistic. It is important to highlight that everyone experiences the world differently, and this applies to both autistic and non-autistic people. Some accounts of being autistic will be described very differently to others, particularly when viewed through the different lenses of either the medical model, or the social model. I’ll explain more about this further on.
It’s also useful to highlight gender differences here. Males (and many females) may find further clues in available screening tools online such as the AQ-50, but these can be less reliable overall for females. There is some current research looking to adapt this better to the experiences of autistic females, but currently the original version is the one that is used and accessed much more widely.
After doing some research, some people recognise enough to choose to self-identify as autistic, and this is perfectly valid. Others may be less clear, and wonder if there are any benefits to having a formal diagnosis. I’ll try to explain some of the benefits and challenges raised in relation to this for adults who are just beginning to recognise the possibility that they may be autistic.
For some, recognising that they are autistic in adulthood can be an incredibly positive experience, Melanie Sykes talks about this as she received her diagnosis of autism aged 51. To have a new framework of understanding of things you may have found difficult, perhaps for many years can be extremely validating. This can also crucially give you information about how to understand yourself, and your needs much better in order to improve and maintain good self-esteem and mental health.
For others however, this can be an incredibly overwhelming and confusing concept to consider. Autism is still widely understood in many stereotypical and negative ways. If you are not immersed in the world of neurodiversity, or do not have access to more balanced information and the emerging, newer concepts of autism understanding, it can be difficult to reconcile this with an existing understanding of self-identity, particularly if someone has achieved many successes in life, perhaps in their career, or academically.
The medical model of autism positions this from a deficit model of understanding. It’s largely based on the view of behaviours as seen from the outside, such as ‘Highly restricted, fixated interests that are abnormal in intensity or focus.’ But how do we quantify this? If someone is very successful in their career because they have been intensely focused and determined, we tend to view this as a success rather than a deficit. So where do we draw the line between abnormal intensity, and someone who is driven to succeed? When we begin to analyse the medical model, we begin to question such views of ‘abnormality.’ Another criteria for medical diagnosis is ‘Deficits in developing, maintaining and understanding relationships,’ but we can also look to the concept of double empathy to understand this differently.
The social model of autism recognises environmental factors as being much more relevant in terms of understanding autism. This is where it can get a bit confusing. An example of this might be where someone appears to function perfectly well all day at work, but this has drained them of resources so much, that they struggle to meet the demands of family life at the end of the working day. If someone displays an autistic behaviour in one environment, but not another, it can be confusing to identify with some of the blanket terminology used in the medical model.
Whilst often a useful process in some ways, the medical model of autism can also be quite limiting in many respects. The older diagnostic process recognised differences within the model such as Asperger’s Syndrome (AS) and High Functioning Autism, (HFA) as being separate to Classic Autism. Whilst there is some value in having such different categories, it has been recognised that functioning labels such as this can be harmful in many ways. According to the older diagnostic process, which many still refer to, we could then be led to understanding AS or HFA as mild, and Classic Autism as severe, which often doesn’t reflect the individual experience, and can lead to incorrect understanding.
One of the difficulties in making sense of all this, is trying to navigate all of the information available which may reflect either the medical model, or the social model, or somewhere between both. Where this relates to a potential reconfiguration of your whole identity in many ways, it’s not surprising that some find this overwhelming and confusing.
A formal diagnosis of autism can offer clarity, and be useful in certain situations like negotiating reasonable adjustments in the workplace, for example. It can bring certainty, and give a clearer understanding of self-identity which for some is incredibly important. However, obtaining an autism diagnostic assessment isn’t always an easy process, perhaps because of long waiting lists, or if cost is a barrier, leaving many with the uncertainty of whether they are autistic or not, and in some cases, unmet support needs.
Some may worry that they are making a fuss about nothing, and feel reticent about starting the process, or have concerns about what it might mean to be labelled with a ‘disorder,’ both of which are valid concerns.
Recognising the importance and validity of self-identification, and also the difficulty in accessing a diagnosis, I work with clients who both self-identify as autistic, and those waiting for a formal diagnostic assessment (and those who have a diagnosis of autism of course). I try to work with the social model as much as possible, helping clients to identify changes that could be made in the environment to improve well-being and mental health. As things improve, this can then lead to even more confusion about whether someone is autistic or not. Partners, family members and work colleagues etc may also feel confused with inconsistencies, possibly as a result of environmental changes and may wonder if perhaps autism is being used as an excuse at times. This can lead some who were previously happy with self-identification to pursue a formal assessment in order to bring some further clarity.
Conversely however, formalising someone’s identity as an autistic person can lead to stereotyping by others who perhaps don’t yet have the wider understanding of neurodiversity, and lead to others treating them very differently. Perhaps in less helpful ways, such as assumptions being made about what they can and can’t do.
In summary, for some, a formal autism assessment is the obvious next step following some initial research. For others, it’s less clear, and needs careful consideration, both in relation to re-conceptualising their identity, and also for others around them to do the same. If you find yourself in this situation, please seek out someone who can help you navigate this, and support you through the process.
Recognising the limitations around the current medical model of autism, I am an advocate of those who self-identify as autistic, but equally recognise the validation an official diagnosis can bring. This blog post by one of my amazing lecturers, Luke Beardon captures some of the issues with the current medical model of autism beautifully; Hello Mummy – a (fictitious) conversation from the future | Luke Beardon: Perspectives on Autism (shu.ac.uk)
Links to further resources in relation to this can be found below:
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.
Milton, D.E.M. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), pp.883-887.