We need Autistic Discovery, not ‘Diagnosis’

One of the biggest problems with the medicalised view that society has always had of Autistic people is the distorted idea of ‘diagnosis’.

I did not receive my ‘diagnosis’ until I was 16, which is far earlier than many people end up with, although it is still not ideal as I went through the near entirety of school without knowing such defining information about who I was. The diagnostic criteria itself is extremely flawed and outdated. It relies on the triad of impairments, which is based on the pathology paradigm that looks at the ‘deficits’ of Autistic people that others try to eradicate. Assessments themselves mostly only search for any signs of distress in an individual. To receive this ‘diagnosis’ is not easy for many people either. As a white cisgender male, there was privilege I had in receiving this compared to other people who are further marginalised such as women, ethnic minority groups and LGBTQ+ Autistic people. The history of autism is rooted in so much gender bias, racism and sexism that it is practically impossible for millions of people to be given this recognition.

For many years, Autistic people in the community have said that those without a ‘diagnosis’ are still valid members of the community and this is true. Even today, so many Autistic people are denied their right to understanding themselves. Why we still say we ‘diagnose’ Autistic people is absolutely ridiculous to me. Being Autistic is not a medical condition. It is not something we catch nor develop. We are Autistic from the moment we are born and yet this world denies us our birth right to explore this Autistic identity we all have. I prefer to focus on the discovery of being Autistic, rather than a ‘diagnosis’. A ‘diagnosis’ is filled with so much stigma & even receiving one does not lead to much long-term support. In some cases, a ‘diagnosis’ can provide people with signposts to supports or to have adjustments but it should not require this for such actions to be implemented into people’s lives. Many of the diagnostic assessors are also non-autistic with a severe ignorance and lack of understanding of our Autistic experiences and culture. I know Autistic people who have been denied a ‘diagnosis’ in their assessment and told that they just have trauma or some kind of personality disorder. Some are dismissed in their assessment for being in a relationship. Others are told they aren’t Autistic because they make a lot of eye contact. These people are no less Autistic to me because non-autistic people were gatekeeping their identity from them and all that their assessments did was further stigmatise the mental health of those Autistic people.

There will also be professionals also carry preconceived notions about Autistic people. A stereotypical presentation of a white cisgender boy lining up cars or talking about trains are common traits they look for. Although if an Autistic girl is observed lining up her toys, dolls or items, this is seen as “good organising”. If they tell people around them they are in pain from sensory distress, these girls are labelled “too sensitive.” Despite these external signs of Autistic people always being there from the start, the internal presentations of Autistic people are also seriously overlooked. Masking is a trauma response for many of us based on such invalidation or stigma from being told we are “too sensitive” or “being dramatic”.

In some cases, masking can also be used by professionals to project blame onto us. Clinicians will say they missed or could not refer to ‘diagnose’ someone because they mask or are ‘hiding’. Which is ironic, as if you put Autistic people in a room of classes or workplaces, we are likely to figure out who is Autistic, including those masking. We have an inherent radar that allows us to detect other people of our neurokin. Society will not mention this as they want to keep us separated from each other. They want to deny that we have a culture and can relate to fellow Autistic people in a much deeper way than they ever possibly could.

It is often said that even Autistic people cannot ‘diagnose’ another person. It is true that we do not diagnose Autistic people, because we know our experiences and identity is far more than a bigoted criteria built on a foundation by neurotypical men over a 100 years ago. The diagnostic criteria is irrelevant when it comes to what being Autistic actually means. It is a system that would of been better off being erased decades ago. We however can and do identify other Autistic people though, and it is crucial that we do this. If we recognise others who are clearly Autistic, it would be wrong to leave them isolated and suffer through life without ever knowing this about themselves. I’m not saying we go around pointing fingers at everyone we can recognise as being Autistic, but we have a responsibility as a culture to help guide each other. Initiating those conversations can ignite those sparks of someone beginning their journey to Autistic discovery.

As Autistic people, it is important that we build our movements, our spaces and fight for our rights. We need to inspire and guide each other on our own respective journeys. To help each of us process the internalised ableism that society forces on us. To help us let go of those cruel messages the world hammers down on us as we grow up that says we are broken or not good enough. It is not up to neurotypical people with their privilege to declare who of us are Autistic or not. Do white cisgender people get to diagnose who is trans or non-binary? Do heterosexual people decide who is queer or who is not? Do Americans decide whether a French person is really a French person based on how much they express their culture? I am done with non-autistic professionals leading our narrative and having so much power over of us. This oppression has to end & I don’t think most people realise how much damage has been done to Autistic people by this ableist society. Autistic people are suffering throughout their lives and these people with the power to ‘diagnose’ only continue to offer this to people in crisis. Thousands of Autistic people have no doubt taken their own lives as a result of being burned out through being forced to live in a world that is harming them & through never being given the opportunity to learn about their identity and culture.

Rather than ‘diagnosis, what we really need is Autistic discovery. This discovery has to happen as early as possible in the lives of Autistic people. Autistic children need to learn about being Autistic and how it is a core part of their identity. We need to teach about Autistic Culture all across the world so millions of people do not remain isolated and separated from their way of life.

While I did learn I was Autistic through a pathologised and medicalised model, having this knowledge was a key point in my life. It gave me answers as to why I was so different and why I struggled with non-autistic people growing up. It has been a long journey (and still on-going) but it has inspired me to seek out the Autistic community. To write things such as this blog & help other Autistic people so they do not have to experience what so many of us had to go through. I would honestly likely not be alive today if I did not discover my Autistic identity and the overall culture that exists with this. It is fundamental for all of us to understand who we are. Knowing we are not worthless, not stupid, not broken, but that we are a part of a greater Autistic culture. With that culture, comes this group identity where we share similar experiences with so many people. Through that culture, we can start to see that we are not alone.

It is probably a pipedream but I wish for there to be a future that finally abolishes the entire diagnostic process. Instead of these teams of non-autistic clinicians and long waiting lists, we need to invest into providing genuine Autistic Discovery services. These services would need to be created and led by Autistic people. Led by people who have endured the trauma of living our lives disconnected from our essence. People who have learned the hard way how crucial knowing our identity and culture is to our wellbeing and human rights. I used to believe that I was not defined by being Autistic. Throughout my journey I have had to deal with internalised ableism, believing that being Autistic was a bad thing and something to suppress. I previously used the more stigmatising language (person with autism) to describe myself. However, over the years I have realised that I can not separate myself from being Autistic and to do this is to take away my soul. I am defined by this in so many ways. Being Autistic informs my thoughts, decisions, movements, the way I am in every area of my life. It is fundamental to who I am and it is not possible for there to be a version of myself that is not Autistic.

What if rather than forcing people to fit into a box narrow stereotypes (especially the gendering of Autistic traits stereotypes) as ‘diagnosis’ assessments do, that we taught all Autistic people what their experience actually means. That they are not just a list of deficits or problems and to be Autistic is so much more! How we have our own way of expressing language, of communicating, the way we express our Autistic joy, our ways of showing care and our love. If future generations of Autistic children grew up in safe, nurturing spaces where they could learn about their identity and culture, their lives would be so much better. They wouldn’t have to be so traumatised like past and current generations of Autistic people. We need to stop this generational trauma that is being inflicted on Autistic people and finally allow us to connect to our souls. As I write this post, I am preparing to deliver an assembly next week to children at a primary school. Many in the audience will be Autistic themselves, and I hope this can help them on their journey of discovery and guide them into learning about their identity and culture. The more Autistic people are out there being visible and being vulnerable, the more validating it will be for Autistic people of all ages to feel seen and heard. This includes those who do not yet know they are Autistic, as discovering this about ourselves at whatever age we may be can be so liberating and life affirming.

I really love the work that Chloe Farahar and Annette Foster run with their “So, you think you’re Autistic” project. It is an Autistic space that helps Autistic people, regardless of who has a ‘diagnosis’ or not, to discover their identity and what this means for them from an actual Autistic perspective, not what non-autistic people think it means. Such work like this is so amazing and I want to see more of this take place around the world.

Self-discovery of our Autistic identity through connecting to our community and culture will forever outweigh the opinion of someone who grants us a ‘diagnosis’. You cannot diagnose someone’s identity or culture. We are not a condition. We are Autistic people and we are not alone.

3 responses to “We need Autistic Discovery, not ‘Diagnosis’”

  1. Love this post. The more I’ve learned, the more I’ve also thought it doesn’t seem right that people can seemingly only get evaluated if they’re a child or if they’re experiencing serious problems that might be related to being autistic. And only this one specific group of experts can give a diagnosis, despite the fact that there’s documented evidence of these supposed experts getting it wrong or underdiagnosing certain groups and despite the fact that some people just can’t access or afford that. It seems to me that it’s a part of who a person is, not a mental illness, so why does it have to get diagnosed as if it is one? Why can’t people who know themselves better than anyone do their own research and self-reflecting in a similar way to people who are questioning their sexual orientations and be taken seriously when they reach out? And, as you point out, why aren’t the people who are confirmed to be living with it considered to be valid experts in it?

    I think the focus should be on helping people understand themselves, whether they need a lot of help or just a little. And I also think the people who only need a little help or those who have gained insights and developed strategies and coping mechanisms to get to a point at which they need less than they did before are the best for others to learn from. People should be encouraged to be the best versions of themselves, not stigmatized for not being neurotypical.

    Society and the supposed experts should be able to recognize that it’s possible to be neurodiverse and be in healthy relationships and have a good life. Not being able to do that certainly does suggest a level of prejudice to me. And boy do I feel sorry for their patients, who are probably being treated as though they can never hope to achieve those sorts of things either.

    Like the famous Einstein quote says, “If you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” I’ll add that if you don’t teach a fish how to be a fish because a bunch of tree frogs have decided it doesn’t meet the fish criteria and is actually just a weird tadpole, it’s going to have a pretty miserable life trying to take advice from the frogs as well.

    Liked by 1 person

    1. Thank you very much Shannon. Absolutely echo everything you’ve said here. It is also frustrating that the discovery aspect is still such a barrier. Most places I go, telling people (especially children) they are Autistic is always seen as the elephant in the room. So much trauma could be undone for future generations if we taught people as early as possible what this means what it means to be who they are. There are wonderful books for Autistic kids and teens that explain this very well too.

      That Einstein quote is great, very appropriate for this! It’s a tough battle but I hope we can get there some day. I know my numbers on here are quite small too, but hopefully my platform will grow and read posts such as this one as I really believe in letting Autistic people discover themselves. The more we shift to this approach rather than following the bigoted diagnostic criteria, the better the lives for Autistic people will be.

      Liked by 1 person

      1. Absolutely! It takes lots of time and effort to grow a blog, but I hope you’ll get there too. Your posts are great!

        Liked by 1 person

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