Some individuals on the ASD spectrum are getting diagnosed relatively early nowadays, especially since the awareness for autism in children is much higher than it used to be. There are many of us out there, though, that are undiagnosed, some suspect it, some somehow know it and some don’t have a clue why they feel like alien anthropologists that landed on another planet without a brief.
There are so many different stories out there on how adults finally got a diagnosis after going through really bumpy situations and often after seeking help with long standing mental health problems including burn out, anxiety, depression and increased work related stress levels. As I have previously described the diagnosis comes desperately late, especially for women that get often diagnosed in their late thirties and forties. Many are those that receive a wrong diagnosis initially, something that prolongs the uncertainty and often makes the situation even worse. There are so many testimonies online now from people that have been treated for years for a variety of mental health conditions without ever occurring to the treating clinician that they might be autistic.
Getting a diagnosis for autism can be a long and arduous journey. But when should we seek a diagnosis? Advocates of the neurodiversity paradigm embrace the idea of not using any labels and believe we should aim at a future where individual neuro-types will be accepted as variations and not as pathologies. We are unfortunately not there yet, and the question is what should an adult that may or not be facing some social and communication challenges do? Should they go for a diagnosis and if yes what is the pathway?
Pros of getting diagnosed
Being aware of your special characteristics and needs helps you realise not only the cause and mechanism of your troubles, but also take a step back and process harder any ambiguous messages that could lead to a communication break down. For most autistic people diagnosis is a huge revelation and also a validation of their so far bumpy life experiences. It is a liberating confirmation that finally gives you a feeling of belonging.
A formal diagnosis is also supposed to give you access to support and accommodations that make life easier (clear communications, structured work schedule, sensory rooms). If you decide to come out to your colleagues it helps others to decipher or attribute your behaviours to something outside your personality, leading in this way to greater understanding, communication effort and more functioning work relationships. Unfortunately people like labeling and in this case it might actually work in your favour since it could be the pathway to acceptance. It is a primitive and unbeatable drive to try and decipher ‘odd’ behaviours by categorising the individual that demonstrates them. You might be different or quirky, but if you have a name for it that’s OK I guess…
The ‘coming out’ also reduces the amount of camouflaging (masking) autistic individuals use in order to appear ‘normal’, something that will have a great benefit to their mental health. Issues like anxiety, depression and suicidal tendencies are easier to deal with when you actually know the cause of them and by reducing the masking one reduces their incidence and their gravity as well.
Cons of a diagnosis
We just have to keep in mind that unfortunately not all agree to go for a diagnosis and also regardless of having a diagnosis or waiting in long queues for one, there might be a need for immediate support and access to resources. But does the term diagnosis mean that there is something to ‘fix’? Diagnosis is a term used by the medical community to describe the identification of a specific pathology or disease in order to treat it. But if autism is not a disease but simply a neuro- type variation, what is there to diagnose? I guess in order to address these issues we would have to invent new vocabulary to describe things that don’t have any names yet. And this is a very important part of the process since it’s been shown that the language we use affects not only people’s perception of the events, but also the actual course of the events. I am not going to attempt this here, however I will continue using the term ‘diagnosis’ instead of diagnosis from now on. I hope this makes sense.
Many individuals that are ‘self-diagnosed’ or suspect they are autistic are quite concerned about the stigma that comes with a label like autism. Since it has traditionally been considered as a mental disability, labeling bears the dangers of prejudice, social isolation and discrimination against the autistic individual. Social structures are changing towards more accepting and inclusive paradigms, but let’s face it: we are not quite there yet. A major factor is misinformation that roots in social workers’ and health care professionals’ lack of training and awareness.
With the lists of people waiting for a ‘diagnosis’ in the UK getting longer and longer, many will eventually seek a solution in the private sector. This can be a pricey option, though, with the whole package estimated up to £2,000 in some cases and therefore not for everyone. I guess what is important at this point is to find a way of providing support and access to resources for the people that are awaiting for an NHS ‘diagnosis’.
One of the disadvantages of getting diagnosed has to do with the aftermath and the changes that come with it. And we autistic people hate change. So, I am officially autistic. Now what? Do I need to tell people? Should I come out at work or during an interview? How am I protected? There is information on the legal aspect of things with autism being recognised as a disability in the UK, but the way you need to handle things in your benefit is not always that clear. There is no right or wrong I am afraid and confusion is inevitable at first. After a ‘diagnosis’ you need time to process the facts first and re-evaluate past situations and events through the new and strangely shiny prism of autism. Getting in terms with who you are, this altered sense of self that you had your entire life is at least now starting to take shape and make some sense.
So, what should you do? I think the benefits of knowing outweigh the disadvantages of stigma and prejudice. We autistic individuals are logical, we like to set things right and solve problems. Thus, logic dictates that we fix this huge universal misconception by acknowledging who we are and proudly sharing it with the rest of the world. Plus, I don’t think there is one autistic individual that regretted it. There are people and organisations that can help and provide with support along the way, so don’t get discouraged. Next time I will be sharing my personal experience that lead to my diagnosis. I think I am ready now.
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