Autism and Identity

--- Katherine Lawrence ---

Human beings have a tendency to categorise themselves and others in various ways and through this, identities are forged; people identify themselves through groups to which they belong and form communities around that - for example, political beliefs, religion, cultural heritage, language(s) used, hobbies, disability, and neurology. These different aspects of identity come together in unique combinations.

Identity is hugely important for many autistics, and autism is a central part of our identity, which is why the vast majority of us favour the use of identity-first language ("is autistic") over person-first language ("person with autism"/"person who has autism"). I did an entire long blog post on it this time last year, which you can read here at 30 Days of Autism Acceptance: Day 15, and there are many articles on the subject by other autistics and allies, all easily available.

I identify as Autistic, as do many others, rather than as "a person with autism" or "having autism" because autism is integral to our very being - it affects everything about how we experience the world and is not just an add-on. I have fibromyalgia and ME/CFS but they do not define me in the way that being autistic does; I would still very much be the same person without those conditions (just more busy and less tired/in pain!) whereas if I was not autistic I would be a completely different person.

I recognise that there are difficulties with being autistic, and while a lot of those can be significantly alleviated if the world was more autistic-friendly, there are going to be times when all the accommodations in the world will not prevent a meltdown. However, I would not change my neurology for the world and I would never want to not be autistic. It has given me the ability to hyperfocus in a way that might not be possible if I was neurotypical (NT), have an incredibly retentive memory for things that interest me (although I'm still incapable of going into town or to Sainsbury's without a list if I'm going to have any chance of getting everything I want!), a level of passion that I'm not sure I'd have if I wasn't autistic, an eye and ear for detail, a visual brain (really beneficial for someone who's involved in the Deaf community and wants to be a British Sign Language/English interpreter!), the ability to think differently from others and thus put a different perspective on things and probably many others.

Having a formal diagnosis has enabled me to be confident in my identity as an autistic woman, which I went into more detail about earlier this month in the D is for Diagnosis post.

Being autistic defines me. I see many people, both autistics and parents, say that they "won't let autism define [them/their child]", but that's not actually viable, because the very nature of autism influences absolutely everything about a person: how they perceive, experience and interact with the world, how they respond to things, how they think, how they process, how they communicate, how they interpret things, how they manage tasks, how they learn... Everything.

Accepting an autistic identity is crucial for mental wellbeing. I don't mean that once you accept the identity everything is immediately going to be perfect, but it does allow for improvement and self-confidence. It helps you understand who you are and how you experience the world. If you are constantly fighting against that aspect of your identity, it makes it very difficult to progress because you are essentially at war with yourself, rather than utilising your strengths and being kind to yourself with and accepting of your difficulties. Since discovering I was autistic, I have been much more gentle with myself when I struggle, reminding myself that it's OK if I don't feel able to cope with somewhere with multiple background noises, that it's OK to request that people are clear and direct rather than dropping hints (because I cannot pick up on hints, ever!), etc. But also, I have come to recognise my strengths and utilise those.

Once I accepted myself as autistic, I became much more confident in myself. I had much more insight into myself and how I related to the world, and it enabled me to find others who shared this identity and thus find a community to which I truly belonged. I wrote a bit about this process last year in Harry Potter, autism and me. And this can be wonderfully liberating.

Accepting that I was autistic and strongly identifying so gave me the confidence and self-esteem to be fully and authentically me, without restraining behaviours and communication styles that were autistic and trying to adhere to NT standards and conventions that felt uncomfortable, unnatural and wrong. Acting NT (or at least, trying to follow conventions that would reduce the likelihood of me being bullied, singled out and excluded). Stimming in public? No longer suppressing that just because some people think it's weird! And to be honest, the more people who are unafraid to act autistically in public and are themselves, the better - it becomes less unusual, less remarkable, and will hopefully lead to greater acceptance because people will realise it is simply one aspect of humanity.

And if autistic children see autistic adults accepting their identity and being authentic and true to themselves, hopefully they will be more confident in themselves. The Deaf community has a concept called "Deaf positive", and it's all about being confident in yourself as a Deaf person, as a sign language user, as equal to hearing people, accepting and embracing your Deafness and being part of a community of people like you. Deaf youth can look at Deaf adults who are comfortable and confident using sign language in public, requesting and explaining communication needs, living happy and successful (however you want to define that) lives.

Identity Autistic Positive.jpg

Part of autism acceptance is the autistic equivalent, which I refer to as Autistic Positive. We desperately need that and autism acceptance - true acceptance - means that autistic people are confident to be themselves, accepting of how their brain works, because NT society accepts them ("acceptance is an action" is a common phrase you'll see around, and it really is - it requires people to make effort to include autistics and to not try to make us NT, to accept us as we are) and confident in their identity as an Autistic person.

© Katherine Lawrence 2018

Getting an autism diagnosis

--- Katherine Lawrence ---

Getting diagnosed as autistic can be extremely positive for many. The process can be long, hard and slow, but once the point of formal diagnosis is reached, it can be a massive relief. And this is why I am defining "diagnosis" as autism-positive and as part of acceptance.

Written by Katherine Lawrence as part of her heroic series of blog posts during Autism Acceptance month (April 2018): "D is for Diagnosis"!

For parents of children, getting a formal diagnosis can be a tumult of emotions, some positive and some negative. From the various autistics-and-families groups I'm in on Facebook, the positives of having a diagnosis tend to centre around having confirmation and validation of their child's neurology and difficulties, knowledge that they have not been bad parents and access to supports (potentially - it can often be a bit of a postcode lottery!) that can only be obtained with formal diagnosis, such as equipment, support in school and so on. Additionally, it can help them understand their child better (depending on where they look, what they read, etc).

For people like me, who grew up not knowing they were autistic, diagnosis again can cause a mix of good and bad emotions. I've noticed, though, that feelings tend to be overwhelmingly positive, especially for those who have been trying for a long time to get a diagnosis. I spent several years in the self-diagnosed camp because trying to get an assessment as an adult in the UK is difficult; in 2009–10 there was nothing in my parents' area of Essex for assessing adults, and it wasn't until 2011 that an adult assessment service was set up in the Exeter area. For me, getting that formal diagnosis was 100% positive.

Upon receiving a formal diagnosis, the feelings I and many other adult-diagnosed autistics experienced were a combination of joy, relief and validation. Some do experience negative feelings, such as confusion, anger, frustration and fear - things like, "Why was I not picked up sooner as autistic?", "What does this mean for my future?", "Will it make my life more difficult?", "Will people reject me?" and "I don't want to be autistic" (partly because of the persistently and wholly negative portrayal of autism), to name some. These are perfectly valid responses, particularly in a world that tend to be hostile, overwhelming and confusing to autistics. This is why we need proper acceptance.

Why so positive?

Knowing that your brain is not defective or broken, that it is simply wired differently, can be a massive relief. I was 23 or 24 when I self-diagnosed and 28 when I was formally diagnosed. When a friend suggested to me that I might be autistic, I looked into it and comprehension dawned, everything clicked into place and you know in cartoons when someone has an inspiration, a lightbulb lights up over their head? I could practically see that! For a long time I had genuinely believed my brain and myself to be broken, because I struggled socially, my bluntness was often perceived as rudeness, I was hypersensitive to everything, I was often considered weird and awkward, and things that came instinctively to others (e.g. comforting a crying classmate) were very difficult and unnatural to me and were very intellectualised. Once I realised that there was nothing wrong with me, that everything could be explained, I was a lot kinder to myself. And that brings a real sense of peace and self-acceptance.

Once I knew I was autistic, I indulged my inner Hermione and read as much about autism as I could get my hands on! I wanted (and still want) to know everything about autism. And in reading things about it and interacting with other autistics, I came to understand myself so much better than I had previously done. And that's a massive self-esteem boost.

Validation is a powerful thing. I respect that some people do not want to seek a formal diagnosis and they have their reasons. It's something that is currently being researched at Exeter University in the Exploring Diagnosis project, for which I am an advisor on one of the PhD projects. If anyone in the UK is reading this, sought diagnosis as an adult or chose to remain solely self-diagnosed, and would be interested in participating as an interviewee, do let me know and I can put you in contact with the relevant people! For me, being only self-diagnosed was not enough - I found myself frequently questioning and doubting whether I was actually autistic, and wondering if it was mental-health problems masquerading as autistic signs (turns out the mental-health problems were largely a result of difficulties from not realising I was autistic!) In addition, I encountered a number of people who did not see self-diagnosis as valid and I got rather fed up of trying to justify myself to them. Getting a formal diagnosis, for me, silenced the doubters (including myself!) and, more importantly for me, confirmed and validated that my difficulties (and also things I have come to see as strengths) were real, that my experience of the world and how I processed it were true and not some figment of my vivid imagination, and that I was definitely autistic.

As well as this, when I lend my voice to campaigns such as Not Locked In (last year) and the ongoing Judge Rotenberg Center campaign with Cal Montgomery and Kieran Rose, having a formal diagnosis gives more weight to my voice than if I were only self-diagnosed, and means it is more likely (not guaranteed by any means, because people like to throw functioning labels around by claiming that I'm "too high-functioning" to advocate for "low-functioning" (their words, not mine) and the "Not Like My Child" card (of course I'm not like your child - they're 6 or whatever and I'm 33!)) that my voice will be listened to, because I am considered a "genuine" autistic. I wish that self-diagnosed autistics were afforded the same level of value as those of us who are formally diagnosed, but that is not currently the case.

Having that formal diagnosis has given me so much confidence to be authentically me. I don't hide my stimming, I'm open about not making eye contact and why, and it means that I don't hide my autism generally. When I go for job interviews (rare, because my physical disabilities significantly restrict how much I can do, and because I'm autistic certain environments are unworkable for me), I can inform them beforehand that because I am autistic, I will not be making eye contact due to the physical pain it causes me. I am autistic and proud to be so! 

As I said in yesterday's post, C is for Community, getting that diagnosis has helped me feel more part of the autistic community than when I was only self-diagnosed, due to the validation and confidence explained above. And I've made some amazing friends there. I'll talk more about that later this month in S is for Social Media.

In getting a diagnosis, I now know that I am not alone, that there are many people out there who are like me and who understand me. And that's such a positive thing! There are people out there who are like me; I'm not some sort of broken freak of nature!

Autism Diagnosis.jpg

Being formally diagnosed can (not necessarily, as it depends on people and what's available in your local area) enable you access to (appropriate) supports and accommodations that you may not be able to access without a formal diagnosis, such as support in education, assistive technology, therapists trained and/or specialising in working with autistics, and so on. Many places will only consider those with a formal diagnosis, possibly due to limited resources, the risk of doing harm with an unsuitable approach or for insurance purposes (more in the US than in the UK), for example. While such things are meant to be based on needs rather than diagnosis, having a formal diagnosis can make the process easier and quicker. Also, knowing that you are autistic can make it easier to determine particular techniques that work for us but not necessarily NTs and vice versa.

Getting a formal diagnosis has been immensely positive and has enabled me to accept and be confident in my being autistic.

© Katherine Lawrence 2018