Autism Acceptance Month 2018 Day 10: I is for Identity

BSL: identity (contextual: first sign is used when when referring to yourself, second when referring to another person)

I is for Identity

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 thatmight not be possible if I was 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 BSL/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, as I've mentioned previously, has a concept called "Deaf positive", and it's all about being confident in youself 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.

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.

I hope this makes sense as I'm a bit tired and have been thinking heavily in BSL rather than English!

30 Days of Autism Acceptance: Day 5

#30DaysofAutismAcceptance

I didn't have the opportunity to post this yesterday so I'm going to do day 5 and then day 6 to catch up.

These posts still seem to be fairly introductory, I think not least because this blog is still fairly new and 30 posts in 30 days is quite intense. Once April is over I'm planning to take it a bit more gently and choose topics that I want to go into more depth with. Readers, feel free to ask me to post about specific autism- and disability-related things!

Day 5: 

Talk about employment and your career.  What do you do to support yourself?  Are you on disability?  Was it hard to get or maintain?

Employment. Oh joy. I know the employment rates of disabled people and autistic people are well below what they could be, and some of it is that some people simply can't work or are limited, like myself. Some of it is a lack of skills and education, and that's something that, with the right information, access and support, can be remedied. Some of it is down to the availability of suitable jobs. Another issue, and this is a big one, comes down to stigma, prejudice and discrimination from potential employers - they simply don't want to have to spend the time or money to make accommodations when they could just hire an able-bodied, neurotypical person. Sometimes the funds to make the accommodations and adaptations aren't there. I think I've covered everything but I'm quite tired at the moment so feel free to let me know if I've missed anything!

I had a part-time job November 2005 - July 2006, working as a receptionist in my optician's. It was an ideal job at the time, because it worked around my various college courses (it was the academic year after I failed my placements on the occupational therapy course, so I was doing AS-Level French, ECDL (European Computer Driving Licence - nothing to do with cars!) and level 1 British Sign Language). Most of the staff there had known me since I was 11 and I knew them, which made it quite easy to slot in, and it was a really great place to work. I left when I did because we were going on a family holiday to Canada before I started my English Lit degree at Exeter. This was all long before I knew I was autistic.

I haven't had paid employment since then, because the fibro and ME/CFS kicked in the summer between my first and second years, and that's been a massive hindrance. I'd say a lot of the reason I haven't had paid work since 2006 comes down to that, rather than being autistic, although there are issues with the autism that have hindered my ability to gain paid employment. I can only work part-time, half-days only; I get tired easily; I need wheelchair access; I sometimes have bladder and bowel issues because of my physical conditions. That instantly limits the jobs I can even apply for - most jobs advertised are full-time and jobshares aren't always an option (either no other applicants are interested or the place won't accommodate that possibility), quite a few aren't wheelchair-accessible, and/or there isn't parking.

But this prompt is autism-centred, so I'm focusing on that. My written applications are generally fairly good, I've been told - I'm articulate, methodical, detailed and present myself well. I'm well-qualified (my GCSEs consist of 7 A*s, one A and one B; my A-Level grades are ABB and I have two Cs at AS-Level (halfway between GCSE and A-Level) in French and History, I have a DipHE in occupational therapy as I passed the academic side of the course, and a 2:1 BA (Hons) English Literature and a Merit for my Creative Writing MA; in addition to that I hold an ECDL qualification - though that's probably out of date now as Microsoft Office has changed so much since 2006! - and a level 3 NVQ in British Sign Language).

There are certain jobs there's no point me applying for. I can't work in call centres because there are too many different noises and I can't make out individual sounds; if I'm somewhere that has multiple noises, they blur together to become one big wall of sound, crashing over me in waves, and I cannot distinguish what people are saying, etc. Quite often if this goes on too long it can lead to sensory overload and thus meltdowns. Not really viable for a workplace! I couldn't work in a supermarket or similar, either, because between the different noises, the lights, etc, it's just unbearable. A comfortable environment, one that doesn't cause sensory overload, is ESSENTIAL for autistics. And more and more, workplaces seem to be becoming sensory nightmares.

I generally disclose at the application stage that I'm autistic, so they're aware long before the interview stage, although the decision about whether or not to disclose is complex and I'll do a more detailed post about that in the future. When writing my applications - most of the jobs I apply for require some sort of personal statement rather than just submitting a CV with a covering letter - I explain how being autistic is a positive thing and will make me a good employee. I have a really good eye for detail, I'm methodical, I produce work to a high standard, I can often bring a different perspective. I think in the past I've said other things as well but I can't remember right now. I try not to over-emphasise my neurology - finding a balance can be challenging! - but I want to point out the positives in case there's uncertainty about my ability to do the role. I suspect this approach doesn't always work - I'm certain there have been some occasions when the potential employer sees the word "Asperger's" and instantly dismisses me, although not explicitly stating this as the reason for my rejection because that would be discrimination and they could get into a lot of trouble over that, but I've lost track of the number of times I've been told that "there was someone else with more experience", and while I'm sure that's the case some of the time, it gets a bit wearing and you do start to wonder after a while.

The interview stage is the hard part. One of the reasons I was keen to get a formal diagnosis is because previously, I'd go for an interview and in the feedback I invariably got told "We didn't like that you didn't make eye contact". I don't make eye contact; it's one of the really obvious signs with me that I'm autistic. Having a formal diagnosis means that I can explain prior to any interview that I won't be making eye contact because I'm autistic and that's one of hte ways it affects me. I'll probably devote an entire post at some point to eye contact!

I'm not good at reading people's non-verbal communication in interview situations. I'm better than I was but it's something I think I'll always have difficulties with. And this is where I fall down. I don't have the neurotypical body language that interviewers expect, I don't make eye contact, I miss subtleties in non-verbal communication (body language), I sometimes misunderstand things that are said. I do plan to work on improving it, but it's an area I know I struggle with. I've never been successful in a formal interview; when I went for the one at my optician's, it was more an informal chat than anything else. And this is something I'm reading and hearing is a massive massive issue for so many of us. Job interviews as they stand are geared towards NTs - their social expectations, their behaviour, their communication (verbal and non-verbal). This immediately puts us autistics at a disadvantage. There's definitely room for greater education and understanding among potential employers and I hope we can work towards that.

Since graduating in 2009 I've been working but on a voluntary basis. I spent a year working in a cat sanctuary, which I thoroughly enjoyed, and since January 2011 I've been volunteering as a classroom support worker in the deaf school here in Exeter, which I really enjoy. Being Aspie actually really helps with this because the Deaf mindset and the autistic mindset are really similar - bluntness, literal thinking, difficulties with idioms and figures of speech, to give a few examples - so I'm kind of a bridge between the Deaf and hearing worlds: I can spot the phrases etc the pupils are likely to struggle with and when they say they don't understand it/it doesn't make sense, I can explain it in a way that they understand. 

My long-term career goals are to become a qualified BSL/English interpreter and a published author. I've been part of the Deaf community for just over 10 years now and am gradually working towards my interpreter qualifications. It's a slow process partly because of course costs and partly because as you go up the levels, fewer Deaf tutors are qualified to teach them. I was hoping to start the level 6 NVQ in February, with the same people I did level 3 with, but it's north of Bristol a 160-mile round trip each time - between petrol costs and my limited energy, it just isn't viable. Once I've got the level 6 NVQ I can start the actual interpreter training, but the same financial, distance, availability and energy issues are present. So it's a long-term thing.

Writing-wise, I'm looking primarily at fiction. I've  got a few ideas on the go at the moment, some of which started life as pieces for my MA and that I'm gradually developing. In addition to this, I'm also trying to research for a book I want to write called "Not All Aspies Are Computer Geeks", and it will look at stereotypes, perceptions, preconceptions, etc people have about those of us on the spectrum, see where they came from and why they exist, and evaluate how accurate they actually are. So, readers, if you've come across any, whether someone once said it to you (the title is from my dad, who once phoned me asking for computer help, even though I'm not very good with computers, and he came out with, "But you've got Asperger's; aren't you meant to be really good with computers because of it?" *facepalm*), you read it online or in an article somewhere (a link would be fantastic, though not essential), or have come across it elsewhere, PLEASE send it my way! I'd be really interested to hear them all and I'd love to explore them!

Given the above, I am on disability welfare (usually referred to as "benefits" in the UK, but I don't like that term). I'm currently waiting to hear if the DWP will give me PIP (Personal Independence Payment - it's what's replacing Disability Living Allowance, supposedly because DLA's out of date but realistically because the government want to cut the amount they spend on disability support for ideological reasons), and I'm really worried. I depend on the higher mobility rate to get out and about because of my physical difficulties - without my Motability car (automatic with hand controls) I'm basically housebound. I'm also receiving Employment and Support Allowance (for people with a limited capability for work - also really difficult to qualify for). Our finances aren't great, not by a long stretch. My husband is self-employed but because a lot of his work is quite niche (storytelling, weapons training workshops, trading in larp kit) it's taking a while to get going and he's not yet making enough to pay himself a salary.

I may have missed some things off this post, but as I said at the top I'm quite tired. Going to have a break and then catch up with the Day 6 post.