Showing posts with label Asperger's. Show all posts
Showing posts with label Asperger's. Show all posts

Monday, 8 July 2019

Asperger's: should it stay or should it go?

Just now a question was posed on a local autism (autistic-run) Facebook page that I follow. The person writing it asked what people thought about the "loss" (ie. removal) of Asperger's as a separate diagnosis.
(Quick note: in the US and other places that use the DSM-V diagnosticians no longer give it because it does not exist as a separate diagnosis in that book, it is all "autism spectrum disorder/condition"; here in the UK and other parts of the world we use the ICD-10, which includes Asperger's and is the criteria with which I was diagnosed, but the ICD-11, when it eventually comes out in January 2022, will follow the DSM-V with no separate Asperger's category.)

The page added the hashtag #keepAspergers.

This is the comment I made:

*****
My formal diagnosis is Asperger's. Quite frankly, I'm happy to see it go, resigned to the history books.

  1. Asperger's as a separate diagnosis causes confusion - that separation from "autism" makes people think that that means it isn't autism, or isn't "real" autism.
  2. Following on from 1, some people/systems use it to deny supports because it is generally associated with not needing as many supports as those with a diagnosis of "classic autism". People go, "Oh, it's only Asperger's so they'll be fine, they don't need support/accomodations, they're just being difficult" (I've had more or less exactly that said to me, as have a number of my friends with an Asperger's diagnosis).
  3. It's an arbitrary, unnecessary division - the only real difference between an "Asperger's" diagnosis and an "autism" diagnosis is whether the person reached developmental milestones earlier than/in line with the average or whether they reached them later than the average. By the time someone reaches adulthood, does it really matter what age they were when they reached those milestones, if they reach them?
  4. It gets used as a functioning label, an alternative to "high functioning autism" (and functioning labels are divisive, restrictive and extremely harmful, and need to be resigned to the history books).
  5. The "Aspie supremacists" hang onto it in their desperate, misguided effort to feel superior to neurotypicals (often evident in such statements as "the next step in human evolution", etc) and those with a "classic autism" diagnosis who require more support, whom the Aspie supremacists regard as inferior and from whom the supremacists wish to distance themselves. A lot of these people support eugenics and believe that autistics with high support needs should be prevented from existing.
  6. Hans Asperger was an actual Nazi who was actively complicit in eugenics, sending autistics deemed "useless eaters" etc to the death camps. Quite frankly, no way in hell do I want to be associated with that.

These days I simply say "I'm autistic" and it does me perfectly well.

*****

Since I posted my comment (which is what I have written in this post), the page's post seems to have disappeared. Maybe it's a Facebook glitch or but I suspect they didn't like my response so took the post down (mine was the only comment) because there is no record of me commenting in my Fb activity log (which generally indicates that a post has been removed). Knew I should have taken screenshots...



Maybe I'm being cynical and there are other reasons. We shall see.
I could write an entire essay on the subject (and I'm sure I will at some point!), but this was a quick five-minute effort and I'd like to post it. Short but sweet, and all that.

I'll be blunt - that's a cowardly move if it was because of my comment, and if so,I am deeply unimpressed with their actions. I have also since discovered that this page seems to support functioning labels. NOT a fan.

Thursday, 6 April 2017

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.

Thursday, 30 March 2017

Welcome/introduction

For a while now I've been thinking about setting up an autism- and disability-specific blog, and with Autism Awareness Day/Week/Month looming on the horizon, now seemed a sensible time to get on with it and join my fellow autistic bloggers!

About Me

So, a quick introduction. I'm 32, married, no children yet (though we would like some) and Autistic. I'm a wheelchair user due to fibromyalgia, ME/CFS and generally wrecked ankles. I'm also dyslexic and have have Irlen Syndrome so severely I broke the diagnostic scale (it goes up to 19; I scored 22...!) The dyslexia is fairly mild, which probably explains why I wasn't diagnosed until the second year of my English Literature degree!

I was diagnosed with Asperger's Syndrome in November 2012, which came as a huge relief. I'd always known that there was something different about me but I could never identify it - I'd grown up and left school before the experts realised that females can be Aspies, so I was never picked up.

If there are any Deaf readers out there I can make posts in British Sign Language for you; just ask! 

What This Blog Stands For

This blog supports identity-first language ("is autistic") with regards to discussion of autism, as the majority of autistics favour this; if an individual prefers person-first language ("with autism"/"has autism") I will use it in reference to them because that is their choice and I will respect that; however, identity-first language is the default approach here.

This blog does NOT participate in Light It Up Blue or anything to do with Autism Speaks. This blog supports Red Instead, Gold (because on the periodic table gold is Au, the start of the word "autism") and Tone It Down Taupe.

This blog does not use the puzzle piece.

This blog is Nothing About Us Without Us. 

This blog is Actually Autistic.

This blog supports Autism ACCEPTANCE over Autism Awareness. 

This blog supports Neurodiversity.