This Autism Awareness month (and beyond) you may hear comments like “Everyone wants a label these days”, or “There was none of this Autism in my day!”.
This is stimulated by the increased number of people self-identifying Autism, and in many cases seeking assessment and formal diagnosis, which is currently being driven by two things:
- A considerable number of Autistic people are receiving a diagnosis of Autism late in life. Why?
Simply because they weren’t identified in childhood, adolescence, or adulthood in some cases. Professionals within health, social care, and education had failed to identify many Autistic people as Autistic. The consequence of this was a lack of support for many. This failure, along with the Autistic determination to search for truth and facts, has contributed to many Autistics finding themselves in the first instance, correcting the failure. Some will simply self-identify as Autistic, and some (as I myself did at age 45) will seek a formal Autism assessment and subsequent diagnosis.
2. Awareness is growing, particularly around Autism in girls and women, so we are missing less people in the first place, less than we would have in previous decades.
Therefore, the failure is being resolved, and less people are being missed. Both are pushing diagnostic rates up.
Another dynamic has also changed. Due to increased awareness raising, often by the Autistic community, the general public are far more Autism aware than they used to be, and people are much less reliant on professionals being the first people to propose, “I think you may be Autistic”. SELF-identification is happening in the first instance, and in vast and increasing numbers. WE are the ones who are are instead seeking out professionals and saying, “I think I am Autistic”. As this shift has occurred, so too has the power, which is now with the people, and many professionals are holding firmly onto their diagnostic privilege like their career depends on it. All in the face of an Autistic community which fully accepts its self-identified Autistic fellows.
Comments like “Everyone wants a label these days” are a product of such change, but they also infer we have (or had) some sort of choice in the matter, like we can unautistic our brains so as not to have the label. So, is there instead an inference that those who are not Autistic would attach themselves to the Autism label for some kind of benefit?
It may be the case that an Autism label would allow a person extra accommodations in the workplace or in education, privilege over their peers, reasonable adjustments, and special measures, which would make anyone’s life easier. A label would set them apart as different, and difference may be what they seek? Maybe they would receive a positive connection or attention from others as a result of an Autism label? This could be just some of the perceived benefits to someone attaching themselves to an Autism label. Appealing!
Many people don’t move in the neurotribe circles in which I do, and are yet to have heard or read an Autism lived experience, and that will include some of the commentators of “Everyone wants a label these days”. Or if they have witnessed this, they haven’t fully connected or reached a state of empathy with Autistic lived experience, truly hearing and acknowledging Autistic people’s experiences, and wanting to support them in positive change. If they had, they would recognise that the costs FAR outweigh the (perceived, or actual) benefits.
What many don’t acknowledge is the journey, which for many of us was long, and painful. The first part of the journey is the one to identification (self or professionally identified Autism), and then the second part of that journey is from identification to diagnosis (if the person chooses to be assessed, which not every Autistic person does, and which is okay), and how incredibly difficult this was for many of us. The journey also doesn’t end there, as there is still a third part…
Our Autism journey starts at birth. Unbeknown to anyone at the birth, we are all automatically assumed neurotypical from the moment we are born. It isn’t documented like weight or time of birth, but it is most definitely assumed. For 15-20% of us, that will be an incorrect assumption, and trying to live as a neurotypical when you have a neurodivergent brain can leave you feeling broken, like a problem to be solved, and failing at life. We start to ask questions like ‘Why?’. Why am I so broken? Why am I unhappy? Why do I burnout? Why do I have these physical and/or mental illnesses? Why do I cope in this way? This leads to us knocking on many professional doors and services, and asking them ‘Why?’ In many cases they don’t know the answer any better that we do. In the end, being the true experts in ourselves, and best placed to find our own answers, we work it out.
The moment we find the answer to ‘Why’, is the moment we recognise we were (are) not broken, but that we were (are) living in a neurotypical society, built for the predominant neurotype – neurotypically brained people – of which we were (are) not, contributing to us always feeling broken, different, and othered.
Imagine learning this after years of suffering. I AM NOT ACTUALLY A BROKEN NEUROTYPICAL. I am a fully functioning, everything you would expect Autistic! WOW! Do not underestimate the psychological power of that moment. It is immense. We suddenly realise we were never broken, and so reduce our efforts at changing ourselves, recognising instead that the fault lies in society (the part that is broken) and re-focus our efforts on changing it…only to be met with de-validating comments like “Everyone wants a label”. We never actually wanted a label; we just wanted the answer to ‘WHY’! If we could be critised of anything, it would be to say “Autistics always want to know why!” Oh yes we do, on many things, and on many things the whole of neurodiversity benefits from us finding the answer to why. We are scientists, inventors, engineers, and our questioning ‘why?’ isn’t reserved to answering ‘why?’ in those places alone.
If we work it out for ourselves in the first instance, we then have another journey, should we choose to take it. The second leg!
Should we seek an assessment? We have to consider the merits and costs involved. If we decide we want to be formally assessed, we will in many cases face the naysayers (family and friends, professionals, sometimes both), non-believers, clinical practitioners, systemic resistance, and if you can get passed these barriers and are lucky enough to get as far as the NHS waiting list (in the UK), without being triaged out, you will have around two years to wait for the Autism assessment to take place. If you are privileged to access private assessment, you will have a large bill from the service provider (the cost of a nice holiday!) and a (albeit shorter) period of waiting time. You will temporarily reside in a space I call neuro-limbo, trying to process something you don’t yet fully have the answer to. When assessment day arrives (which in my case was anxiety provoking to say the least), and you find out your truth (most will find out we are Autistic as many are proven to be correct), you then have weeks, months, or even years of processing to do. The older you are at point of diagnosis, the more pre-diagnosis life you must process. Many Autistics go through a process of grief, grieving for the past, grieving for the person that was but wasn’t, and then some. I am still processing my pre-diagnosis past two and a half years after my official diagnosis in 2021, three and a half years after my initial self-identification.
The weight of the journey far outweighs any benefit of simply attaching ourselves to a label because it is the ‘new thing’ or some kind of ‘trend’. Why would anyone choose the above!? If I wanted to punish myself and cause myself distress, there are numerous other ways I could do so than seeking out an Autism label.
Once we get there, label ourselves, or are labelled by others, we have the next part of the journey to face. The third leg.
Do we disclose our Autism, and to whom. Is it safe to disclose, or will it be met by “Everyone wants an Autism label these days!” Because of such comments, you can be sure there are more Autistics out there than you currently think. They have just chosen not to disclose. Society does not yet make it safe for many of us to do so.
If we choose to disclose, we may be lucky enough to be met with support, and receive some of those aforementioned benefits, which were never actually a privilege for us, but rather a simple levelling of the playing field. These will be the lucky ones, since many are still not afforded the benefits people believe they get because support and accommodations are not actually as forthcoming as we (or others) might think. We fight for each accommodation. Many Autistic people will share stories of ableist reactions “But you don’t look Autistic”, “Well we are all on the Autism spectrum” or “You must be one of the high functioning ones”. Many experience continued ill treatment, lack of support and acceptance, and other negative experiences. As a minority group, we also have the task of trying to raise more awareness and educate those from who we need support. This too is its own challenging journey.
Seriously, you wouldn’t choose this path for just a label. I can get a label or a trend by visiting the high street! I don’t speak for other Autistics about their lived experiences only for my own. In my case, if a life choice had been available, I wouldn’t have chosen the life of an Autistic for me, or for my Autistic children, and grandchildren. Our lives have been, and are, incredibly difficult because we have an Autistic brain. The negatives far outweigh the benefits, as the suffering is greatest. But what is most important to note here is the suffering is it not inevitable. Much of it comes from the society we want to change, including unfounded comments which lack insight and understanding and add to our challenges.
Please hear our stories so you can speak our truth.
This is my story www.umbrellapicker.co.uk