Naturally we include the obligatory autism reference to a piece of jigsaw puzzle!

Because obviously we're the forgotten about pieces of puzzle that go under the sofa yet without us, the jigsaw is incomplete.

Jigsaw
Because you know, its a website about autism so there's got to be the obligatory jigsaw reference!

Sunday, 21 May 2017

Symbolising disability for autistic people

I've seen various comments on Twitter, website articles and even petitions against the use of the wheelchair as a symbol of disability. This is the symbol:

Symbol of disability

I get their logic. 
There's been attempts to make the symbol more progressive and reflect that disabled people are capable mobile people:


But not everyone who is disabled requires the continuous use of a wheelchair or indeed at all.

In the UK, disability is defined as someone who has substantial and long-term physical or mental impairments that impact normal day to day activities. Certainly that doesn't mean that anyone who meets this definition found in the UK Equality Act 2010 requires a wheelchair.

I'm autistic and my cognitive profile certainly has no impact on my mobility.

So the argument goes that the wheelchair logo is outdated because many disabilities are invisible and the logo does not capture this. This can be a problem for disabled people who are perceived to not require certain facilities such as a disabled toilet because they do not appear to be disabled from a casual uninformed glance. Both logos fosters the view that to be disabled one requires the need of a wheelchair. I would suggest that the media drive in some parts to create suspicions in the public of those people claiming to be disabled hasn't helped.

It seems like one cannot use a disabled car parking space without someone checking to see if the user is either using a wheelchair or crawling on hands and knees as if a limb is unusable. Any hint of fitness or good health casts concerns that the person is abusing the benefit system to avoid work. Whilst there are cheats in the system, the attitude that one's disabilities must be obvious to require certain facilities is narrow-minded and outdated. Disabled people can have a difficult enough time without being scrutinised by ignorant factions of the general public. Such unwanted aggression can put many off from even leaving the house. 

I don't personally require the use of disabled parking spaces or disabled toilets but I do understand that it is mortifying to be judged by people when one uses disabled facilities if the disability is not visible. There are stories of abusive notes being left on people's cars, which is a huge knock to one's self confidence, which is often already low. The change of logo would symbolise a inclusive acknowledgement of all disabilities.

I can appreciate that the use of such adaptive facilities are not always about mobility. A carer might not physically fit into a standard toilet cubicle to administer the care a person needs. The disabled toilet gives that additional space. An autistic person may be easily spooked by a shopping experience and their carer needs to shepherd them into the shop quickly. Close proximity to the shop might limit the possibility of the disabled person running off. There's so many different reasons that go beyond simply walking.

However I can see too that some autistic people who take things literally might have a strong aversion to using a disabled toilet as they may not feel the toilet is aimed at them. I can see that for those that require the facility but do not recognise their entitlement to it because if their interpretation of the logo may be challenging for the carer. But there will be autistic people who don't need carers but find going out overwhelming. All that chatter in a ladies toilet, coupled with bright lights, queuing, toilets flushing and hand driers can be intolerable. A disabled toilet limits that level of stimulation. Yet for high functioning autistic people, I know for me, I don't see myself as disabled to the degree where I want to use disabled toilets. Sometimes I am happy with the general ones, particularly when they are quiet. It hinges on my tolerance levels.

But I have issue with those who want to change the disability logo.

Whilst I think a better logo would be a great idea, the key is to what?
The point is that everyone knows the current symbol regardless of where we are in the world. If we start to create a new more inclusive one, that level of recognition will be gone and it is going to take a long time to get that up to the success of the current symbol. I also struggle with what could replace it that would not only be inclusive of all disabilities, be international in the sense of no words included and not be so abstract that it becomes meaningless.

If anyone has a suggestion of a better symbol, I am all eyes. I will happily take a look but I think the problem is not the symbol but the understanding in which as a society we fix to it. Our world is full of symbols. When I save a document in Microsoft Word, I am clicking on a picture of a floppy disk but I have no floppy disk in my computer. I don't believe that I am limited to saving to only that 1.44MB medium. What we need is education to teach people that disability is more about a person who is in a wheelchair and static, relying on others to move them about. I wouldn't like to jump too heavily into the alternative wheelchair symbol discussion because I am not a user of a wheelchair but from my viewpoint, the new symbol made me think of someone who is into wheelchair racing. I am not sure that is a helpful either because obviously there are many users of wheelchairs who aren't going to be into that sport or indeed capable of it.

I believe rather than getting too heavily fixated on the symbol itself because designing a better symbol is incredibly problematic, we need to be focusing on widening the definition of disabilities so that disability isn't synonymous with needing a wheelchair. To do so, that starts with education.

Tuesday, 28 March 2017

World Autism Awareness Week: how often those spreading 'awareness' forget the high intellectually functioning adult.

So its apparently it is World Autism Awareness Week this week.

Here's a link to the National Autistic Society's web pages on this: http://www.autism.org.uk/get-involved/world-autism-awareness-week.aspx

But I have a bit of a problem with it because once again I feel somewhat marginalised from what should be my "little special needs community" (or should it!?). The NAS covers lots of stuff about fundraising for them on the above linked website and I am sure they do a sterling job for those who really need support services and the like but I feel that here in the UK I fly under the radar because I am not "bad enough".

But people like me? The people with a diagnosis who can live independently, have a job, a family and been to university? Where do we turn to? I don't feel like there is much room for people like me in the NAS. I would love to hear from people who have benefited from the NAS, particularly those who are similar to me that might be able to change my somewhat jaded view. But in my case its like the title of this blog says:
"Not autistic enough; too weird to be neuro-typical."

I often feel like I am falling between the cracks as my differences and struggles can be subtle and I am able to control some of my meltdowns or at least delay them, although to the detriment of my mental health and triggering migraines. I have a significant awareness of my functioning and have identified strategies to compensate for a lot of my disadvantages. As such, I will avoid things that upset me so that I can maintain a sense of well-being. It almost is insulting to "real disabled" people to call myself disabled and yet there are so many times when I don't understand something and I am on the peripheral looking in and confused. Whilst I don't feel disabled, my autism shapes my life in such a way that the difficulties I face are long-term, substantial and neither trivial or minor. It impacts on my life choices, my confidence, what I can do in life and what I don't. Yet because I don't feel pain that is so unmanageable or problems accessing buildings and services in the way that wheelchair users might, I don't regard myself quite in the same way as those who do face that. As a result, I see myself less as disabled and more as just unfortunate and that's how life is. Few people are exempt from life's obstacles in some capacity and I don't feel that I have some special case over other people.

Yet too because I can get on with life mostly okay, although at times its hard and I constrain what I do so I can manage life reasonably well, it feels like I don't have any real needs given my ability to largely get on with it. I wonder how important it is to raise awareness of my 'plight' when there are so many people much worse off than me?!? I struggle with the notion that I should be entitled to support and yet I know there are times that I need it and I know too that a greater awareness is needed for people like myself so we don't get forgotten about, particularly in the more complex parts of life involving employment and relationships.

Its awareness weeks like these where I don't know if the NAS truly represent the intellectually high functioning adults as much as the lower functioning children that require significant social care.
And lets be totally blunt - those who are intellectually low functioning, perhaps with comorbidities too, will probably never face the stress of driving to a new place and finding somewhere to park or worrying about a job promotion. But then I have never had any problems with only requiring food that is of one texture or one colour and having to eat from my favourite bowl.

I am desperately trying not to be ableist because I understand that my experiences of autism will fit on a Venn diagram alongside those autistic people with their unique manifestations of it. Some of what I go through and those with 'mild autism' will not experience what those with care needs might but somewhere we will overlap in our experiences even if how we understand it and react to it will be different. And of course we don't all experience the same systemising or empathising styles, have the same sensory processing or how our brains focus on the small details over the wider picture therefore variations are certain.

But here's the thing - I am not sure the autism community, whoever they are and if they exist, really put enough focus on those higher functioning autistic individuals. Whilst there is a nod to employment support, it doesn't seem like it goes far enough. I don't need support to tell me that small talk can involve the weather or about how I should be using my own mug in the office (See here for an example: http://www.autism.org.uk/about/adult-life/work.aspx). And I do appreciate for some it will be extremely useful but for many of us who are graduates and have experience in the workplace, we need the kinds of help tailored to our level of academic and vocational ability and being able to potentially navigate professional level careers. Being told to turn to our university's career guidance is not good enough and often it is only available for a limited time after graduation.

Until the big autism charities devote more time to our very specific needs and not make it all about children and the autistic people who may require much more daily support and see our needs as important, how are we ever going to bring awareness to the wider world about higher functioning autistic people when the focus is on the lower functioning less able (but still very worthy) autistic people?

During World Autism Awareness Week perhaps some of the autism charities need to familiarise themselves about how wide-ranging autism is and not forget some of our autistic counterparts are lost in the sea that is filled with support geared at children, neuro-typical parents and those people requiring and receiving social care because we are just 'mildly autistic' and seem to get by.
I want my life to be more than just about getting by and falling from one crisis to the next.

Saturday, 18 March 2017

Autism only applies to children

"It's Asperger's and Autism Awareness month! In honor of all children who struggle every day!!"

Every now and again I see similar things appear on my Facebook newsfeed from well-intentioned people trying to 'raise awareness' of the suffering that autistic children face. Inevitably with World Autism Awareness Week (27th March - 2nd April 2017) coming up, I expect to see more of those kinds of social media posts. 

There's a few things that irritate:

Firstly they claim to raise awareness and provide no education, no quick facts or anything that we can learn. If you want to raise awareness, actually provide some meaningful and useful content might be a starting point, yes?! When is Asperger's and Autism Awareness month anyway?!

This notion of universal daily struggling or suffering kinda grates on me. Actually some days as an autistic person I couldn't actually say I struggle. I've had issues all my life but I am not sure if it's just manageable (ish!) because this is all I have known or if in the grand scheme of things, I am generally okay? I avoid stuff that upsets me and that's my coping mechanism. I know certain social activities and career paths would upset me so I don't do it. Simple, right?!
Okay, I get sensory overload and yes it's unpleasant but it's not constantly upsetting me. I am one of the fortunate ones who can generally extract myself from situations before they get to the point of a meltdown. I realise too that not all autistic people can do that and perhaps I am on the end of the scale where I have fewer undesirable autism related aspects about myself than many others.
Autism doesn't impact on my mobility either so I think myself lucky that I can do lots of things for myself. 
When I think of suffering, I think of someone with chronic pain and challenges that impact their lives so greatly that a large chunk of it is utterly miserable. Maybe I am an ablest amongst the autistic demographic but I have never put myself in a category of where I feel I suffer daily. I won't apologise for that either. My lens is how I view the world and I can't pretend to fully know or understand everyone's view but I can try (despite supposedly autistic people being void of empathy - yeah, right!). Sure, life can be struggle at times but autistic people don't have a monopoly on that. 

The whole "in honour of" thing...
Are autistic people in need of celebrating or having our challenges, differences and similarities respected via a little Facebook post? We didn't pick to be like this. We didn't earn this cognitive style. It makes as much sense to me as celebrating people with blue eyes. 
WELL DONE all you lot with the eyes the colour of the sky. You worked so hard just being yourself. 
This is how we are and I think most of us, like the rest of the planet, generally get on with it the best we can?! 
It's all a bit patronising for me.

Finally.... 
There is some notion that within these copy and paste crap that autistic adults are off the radar. 
Do only autistic children count? Now you're 18, the Facebook concerned no longer bother about us. Or maybe they think we have a terminal disease called autism whereby we don't actually reach adulthood. Incidentally, I am exceeding all lifespan predictions being in my 30s... Or perhaps one of my autism super powers is cheating death by using complex mathematics?!
Hmmmm or maybe by the time one leaves childhood, we have magically grown out of our cognitive style and become fully signed up members of the "Normal Club"?! Here we have lost our sense of systemising, become extremely empathic and gained wonderful social skills to become an artful host within high society. 
Or more likely, we just get on with it. We perfect our coping mechanisms in time, we learn how to pretend we're okay, understand more about ourselves to avoid things in life that upset us and perhaps care a little less about what others think. It's not that we have cognitively changed in our essence but many intellectually higher functioning autistic people probably have adapted from where they were in early childhood.

So when I see such Facebook posts, don't be surprised if I remind the person about the existence of autistic adults. It's not to be pedantic (ok, yes a touch!) but because it's attitudes like that which reinforce the view that only those in education and young people are entitled to autism related support. This is because I often feel like the existence of autistic adults is denied unless they have comorbidities and require social care and institutionalisation. Us autistics who seem okay on the surface are often forgotten. Time and time again, I think back to my experiences of working in education and my life and seeing support in schools and colleges but it almost disappears overnight once one has left their educational institution.

So please, let's not make sweeping statements that do nothing to help anyone, spread generalisations and misinformation but also ignore a sizeable demographic with autism. I'm not sure we need your kind of sympathy...

Now, if you like, you can return to your fake news, click bait websites and videos of extremely daft people doing very daft things! 

Sunday, 12 March 2017

The importance of the right work environment

This article was first written for the website: aspergermanagement.com about a decade ago, so 2007 ish! The article can be found here, as told to the founder of the site, Malcolm Johnson: http://www.aspergermanagement.com/case-studies/work-environment/ but I have included it below.

Malcolm not only runs this interesting website full of resources for professional people with autism but has a book out too, entitled Managing with Asperger Syndrome: A Practical Guide for White Collar Professionals

----

Background

Caroline is 26 and in the process of receiving a diagnosis for Asperger Syndrome.

She has a degree in Political Science and a Master’s in Computing but has found building a career a struggle. Central to this has been finding a Work Environment that suits her needs.

Initially she worked for a large telecommunication company in computing after A Levels and turned down the opportunity to train as a religious studies teacher. Finding it difficult at work, she left to gain the degree in Political Science two years later.

Confusion continued however with what career path to follow and so she studied for a Masters.

She now works for a secondary school maintaining computers and hopes to pursue a career in teaching in ICT and, also, part-time, building her own web design business. By learning about the environment and culture she believes that her career and work objectives be much more achievable.

Exact details in this case study have been changed for confidentiality reasons. The views expressed are personal, for illustrative purposes only and should not be related, or automatically applied to, other situations or scenarios.

Case Study

When I came to initially decide on a career, I gave little thought to the type of environment that I would need, i.e. culture, ergonomics or colleagues. But then, as now, I had not been diagnosed with Asperger Syndrome, (AS).

My initial career choice was therefore difficult and somewhat confused. I had a choice between a place to train as an RE primary teacher or an apprenticeship in the telecommunication industry. I enjoyed computing as a hobby, so hoped to work using computers, but I also enjoyed RE at school. It was the chance to earn money straight from school that led me to taking an ICT apprenticeship.

It was during the two years at that telco company that I became self-aware that I had problems adjusting from a school environment to a work environment. As someone who hadn’t been diagnosed with Asperger’s, it became clear that there was a problem with the way I interacted with people and the way I was learning in the workplace.

Most team communications were conducted through email, and I was particularly pleased that I did not have to talk to the person sitting next to me as email communication was the norm. However, it was slow and cumbersome and often people would not reply.

My line manager said it would be more effective to go talk to people, but I felt awkward interrupting their work whilst hanging around their desk. What I really needed were clear explanations of what was required of me in terms of task and work objectives.

I would also accidentally make inappropriate comments to work colleagues and felt out of place amongst them. I put this it down to being a lot younger than the others and because I was working in a male dominated industry. Everyone else had Masters’ degrees in engineering, whilst I had social science A Levels – that, for me, explained why I was different!

Consequently, I felt uncertain, out of my depth amongst IT specialists and awkward about asking questions about things that they would regard as basic concepts. I suspected they felt I should know about them already. As a result, I tended to not bother asking and remained confused if I could not find the answers on the Internet. I lacked focus and felt overwhelmed and, as a result, my work was not up to the standard expected of me.

When my line manager suggested I work things out for myself and be a bit more proactive in order to complete tasks, I would panic as I found this too hard. I was expected to maintain computers with unfamiliar operating systems, but I had no idea where to begin so I started to feel like a failure and my confidence started to decline. I also doubted my intelligence even though I was well qualified. Every task within my job role seemed so vague and unstructured. I never thought that my line manager might have not been meeting my specific needs or that I should ask him.

At the same time, my driving instructor became increasingly frustrated with me for similar reasons and suggested I might have dyspraxia. I did nothing about this for many years and ignored the possibility of having a problem.

I did though speak to my line manager about having dyspraxia. He did not dismiss it, but it was not something that was investigated fully. He did however attempt to break down tasks into more detail and put them into emails after he realised my progression was slow. This helped greatly, but by then my morale had fallen. It felt too little too late, and I was thinking of quitting the job to escape the anxiety. With hindsight what I should have done is explained things and asked for assistance earlier.

I did not give my company or manager a chance to help me. However, I needed a change to avoid some sort of meltdown. I was succeeding well with my NVQs and BTEC HNC, but I could not comprehend why I was under-performing elsewhere. For someone who always thought herself to be strong academically, this was quite a shock.

When I was told I could not study for a third year to gain an HND due to financial constraints, and not ‘being good enough at my job to deserve it’, I knew I had to leave. The motivation I once had disappeared and it was compounded by the worries that managers had about redundancies and profit.

I became depressed because I felt I was not achieving what I should have or was capable of, so my company sent me to occupational health to access my cognitive well-being. The doctor dismissed the possibility of dyspraxia and seemed to think all I needed was some medication or a career change. Perhaps I did not explain myself properly, but he failed to understand the seriousness of how I was feeling.

I put the thought of having dyspraxia behind me and decided to do a political science degree to change direction in the hope that a different career might be more suitable. I knew I had to get away from the job I was doing, and going to university seemed the easiest way out at the time.

I thrived at university. I was comfortable and felt at home because the environment was structured. I knew when the essays were due, their titles and the reading lists for each lecture. It was well organised and I knew exactly what I needed to do. Although I did not go out much, I had friends. I mixed mostly with the mature foreign students and this probably helped me to fit in as I had more in common with them.

I enjoyed the subject and thought about becoming a teacher again, but realised political science was not taught often in schools; I picked the subject as it looked interesting rather than as a way of getting employment. However, I did not have the drive to push myself into that career and decided to do a Masters degree in computing to put off getting a job and, perhaps, find a different branch of computing I might enjoy.

I changed university, and it was during this time I got an official diagnosis for dyspraxia. I had always been clumsy and lacked coordination, so felt it needed further investigation. I was diagnosed with dyspraxia, though mild, and was told I should investigate further the possibility of having AS. However, the doctor was unable to confirm it properly as she did not specialise in AS diagnosis.

A year had nearly past since I first became aware of my potentially having AS. I saw my GP who was convinced I was affected and referred me to a specialist to get a complete diagnosis. He was very helpful and acknowledged that this would help me to understand myself and give me legal protection in the workplace.

The Masters degree was near completion and I started work in a school maintaining computer resources. I chose this work because the environment was structured as at University, and also, familiar. I had after all, felt secure in education before.

However, whilst working in the school, I started to feel that the previous problems were re-appearing again that I encountered before I went to university. I found tasks a struggle if they were not clearly explained and I became frustrated with my inability to problem solve quickly. After a heated argument with my manager at the school about how my work was not always of the required standard, we jointly discovered what the problem was and a way forward.

I had informed my employer of having both dyspraxia and AS when I started the job, but, unfortunately, they did not understand the full implications of how it manifests itself in an adult. As a result, people did not understand me or how to satisfy my personal work requirements.

Although there were many children in the school with AS, it was not obvious to members of staff how AS could appear in an adult. I felt the condition was undermined with people saying: “you seem alright to me”, but I knew this was not so as I internalised much of my anguish and would hide when things got too much for me. I had no qualms about divulging my AS, as the school was quite supportive and sympathetic to people’s problems. Once my manager knew how I worked best, our relationship improved and was good.

It was the children’s noise though that was particularly challenging and put me consistently on edge when I first started the job. The environment did not offer the solace I needed to work effectively. I found it difficult also to confront bad behaviour in the children, whilst, at the same time, not allowing myself to appear a pushover. This was the same with dominant members of staff, so I avoided them as I was not assertive.

Since working in a school, I have felt it much of a blessing that I became aware of having AS, as an adult. However, I would still not necessarily divulge my condition to anyone who did not need to know as doing so may mean I am targeted or viewed as different (and therefore less capable).

Many children who have been diagnosed seem to be treated as different and special. Although it is good that their problems are being addressed, I feel fortunate that I have had to cope alone because, once out of education, the support can be limited. As a result, I have had to learn to fit in so initially my problems are not apparent. It is not obvious to me how I have done this except by copying how other people react and behave in a particular situation.

I am now moving my career in a different direction whilst taking on board the lessons I have learnt. Central to this has been locating a more appropriate work environment. I have been privileged to meet a wonderful man who has been helping me develop the skills to have my own website design business as an aside to my school work. This has provided me with a supporting mentor, and I believe it is important to have someone to guide me within a work context. I seek this now to provide support and make me feel more confident in my own abilities.

Working at home after my day job to create websites in my own time, affords me the flexibility to manage my personal requirements. Sometimes I have meltdowns, but I can come back to my work when I have calmed down and still get to complete deadlines.

It is the structure and formality of the working day that I still find challenging. I am still drawn to wanting to teach because of this, but right now I am not geared up to secondary teaching. I have considered lecturing to avoid the sensory overload that accompanies a boisterous adolescent environment.

AS is not necessarily a barrier to succeed, but for myself, I have no desire to work up a career ladder in a prescribed setting. I don’t like the rigidity of rules within the work place that can stifle creativeness. Doing what I do now, and the work context I operate in, means that I have my own space.

In addition, my work colleagues understand my limitations and talents. I have been given the opportunity to grow into the job and progress. I believe without supportive and understanding work colleagues, this would have been much harder. The stress levels have dropped right down since I have been relocated to my own office at the school as personalised working space is essential; I cannot hear the children as much as before. I am now able to focus and concentrate on my work, something I did not have whilst working at the telecommunications company previously. If I did not disclose my condition, I doubt this accommodation would have been made.

I feel at this stage that working in education is not what I would like to do long term because it will not support me financially. However, by not being the only person affected by AS in the school, albeit only alongside students, it has helped me to transfer from university to the workplace where people understand the condition to some extent. I have also learnt that my problems are not unique and many students will be feeling they are no different to everyone else.

I have come a long way from when I first was told I had AS and my frustrations have subsided greatly. I am slowly becoming happier with who I am, knowing that I will be able to build my own successful business with the support of my partner having identified the working environment and conditions that I need.

Looking back, I think I could have worked well in the telecommunication industry if my problems were identified earlier and required adjustments made. I did not dislike the work when I understood it, but as it was an apprenticeship whose learning style did not suit me. Vague on the job training or directives like ‘go figure things out for yourself’ was something I found it all too hard.

I realise now that my work should engage me in order to motivate- but not overwhelm – me. I need – and like – a work environment that keeps me busy, one where I do not have time to think too much or procrastinate. Tasks should be broken down into manageable pieces and it has been incredibly useful for me since the school has implemented a computerised help desk system. Providing technical support to computer users has given me the organisation and structure I need and, as a result, I have felt much happier in myself. Seeing small results has also increased my confidence and self-worth.

Although I am still waiting to see a specialist to formally diagnose AS, my employer is treating me as if I do have it and is making all the reasonable adjustments regardless of the legal requirement to do so. I appreciate this and it has made my working life a lot easier. Whether I have AS or not, I feel I am able to work effectively much more than I was before.

However, importantly, I have also made fundamentally changes personally. I don’t automatically blame others for my behaviour and I accept my own responsibility. I realise now that I can say and do inappropriate things, but I have become more humble, accept my shortcomings and am willing to apologise if need be. I try to be more considered by thinking how my actions would be received if someone did it to me.

Although I do slip up, it has helped me to fit in and overcome my social deficits and, in turn, help me be better in the workplace by being in the right environment for me.

Saturday, 11 March 2017

Facebook "copy and paste plea" posts: autism as the 'invisible illness'

Some people on Facebook can have this habit of coping and pasting well meaning but ridiculous posts such as the one below to 'raise awareness' of a given issue. This one is on 'invisible illnesses':

Not one of my Facebook friends will copy and paste (but I am counting on a true family member or friend to do it). If you would be there no matter what then copy and paste this. I'm doing this to prove a friend wrong that someone is always listening. I care. Hard to explain to someone who has no clue. It's a daily struggle being in pain or feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness - Ehlers Danlos Syndrome (EDS), IBS, Crohn's, PTSD, Anxiety, Arthritis, Cancer, Heart Disease, Bipolar, Depression, Diabetes, Lupus, Fibromyalgia, MS, ME, Epilepsy, hereditary angioedema, Migraines, Hashimotos, AUTISM, Borderline personality disorder, ADHD, RSD, rheumatoid arthritis , etc.

Urgh. I find this so utterly irritating not least as this example has autism capitalised as if its an acronym. 
There you go:

Always
Unique
Totally
Interesting
Sometimes
Mysterious

I didn't make it up; I found it in Google Images.

So here's the thing that irks me the most. Actually no, you'll see in a minute that there are two or three things that annoy. 

The first one: I don't personally find that I am in daily pain or feeling sick on the inside whilst normal on the outside. I appreciate some autistic people do have such sensitivities that they are in pain but please don't generalise. We are not all the same. Actually, when I am melting down, I am very much not normal on the outside. I swear and shout and my husband will testify that I am anything but having an invisible episode. My behaviour is very odd to a neuro-typical. I have had moments of shutting down and being mute but it is still clear to people who are trying to communicate with me that something is up. Okay so I don't require the use of a wheelchair and I don't need medication for my autistic 'problems' but I would suggest my difficulties are not something that can be seen on my person but rather in my behaviour. Invisible? I am not sure. I would guess to a neuro-typical person they might spot something, maybe not. I certainly find it an odd term to use.
And again, some of the conditions listed could be visible - requiring the use of a wheelchair with joint difficulties, tremors in MS, rheumatoid arthritis causing inflammation and swelling in the joints, etc.

Point no. 2: Autism isn't a bloody illness. I am not unhealthy or unwell in my mind or body and to suggest that is really not nice. I didn't catch it from poor quality drinking water. I didn't get it from eating loads of fatty foods and sitting on my bum all day watching TV. It wasn't caught after going swimming and nor was it from the MMR vaccination. Incidentally I had the MMR vaccine much later in life as my mother wanted both my twin brother and I to have it. It was introduced in the UK in 1988 so we would have been about 7 or 8. I was autistic before it and I am now, just that back then we just didn't know it. There has never been that point where I was neuro-typical and now I am not, unlike those with cancer and many of the other conditions listed where one identifies that they aren't feeling right and a disease or something medical manifests in some way. I do take the point that some medical conditions are from birth but autism in itself is not a medical condition even if it is from birth.

Point no 3: what a wide ranging bunch of things to lump together. I find it hard that one could put autism in the same category of many physical diseases. Cancer. MS. Diabetes, etc. And lets be fair, for those with well managed diabetes, what daily pain is there compared to those with Ehlers Danlos Syndrome? Or those with MS who have the horrific pains? I don't feel any pain except when sensory overload triggers a migraine but whilst it can limit what I can do whilst it goes away, I am not faced with any life shortening or life threatening problems. If I am in the position to manage my environment, the migraines do not occur so often. My autism is not causing a tumour and or damaging my nerves, joints or organs. It might impact on my mental health but I guess any factor in life that adds additional stress that pushes us to our coping limits will have a negative impact on our mental well-being. Again, lumping physical conditions/diseases in with mental health and cognitive developmental concerns is a bit weird. 

So I guess the people who copy and paste such junk feel that they have raised awareness for a long list of challenges/conditions/illnesses people can face and then they can feel smug they have done their bit but what they have done for autism is to further the nonsense that it is an illness.
If you want to help educate people about invisible illnesses, brilliant! But please read about them, educate yourself first and write a well thought out caring post and perhaps do a cake sale to raise some money to support a particular charity. Don't just copy and paste mindlessly because myths around those 'illnesses' in the Facebook post are continued and it doesn't provide the awareness needed as all it does is spread ignorance.
I am sure it is well intentioned but it is bloody irritating. Please stop!

Saturday, 4 March 2017

School reports: spotting the autism

I was going through some cupboards and found a folder of old school reports. Some were from primary school and some from secondary.
I decided it might be useful to see if there were any clues to indicate that I had autism. After all, I went on to have a diagnosis of Asperger's Syndrome in my mid-20s and it's something that would have been present throughout my childhood too.
I have copied out quotes from the reports.

Primary School

  • She does not always listen to instructions very attentively and is apt to day-dream.
  • Art work remains immature (!!) Poor motor control and finds drawing accurately, cutting out smoothly, etc., very difficult.
  • PE - Finds all ball skills extremely difficult. I have dyspraxia.
  • She has strong opinions and will voice them readily in discussion. She is not swayed by what anyone else thinks.
  • She sometimes finds it difficult to concentrate on aural work. I do have sensory overload problems and too much information can make me shut down.
  • It took time for her to settle into a new class routine as she initially seemed unhappy at new friendship groupings. I guess I was a bit resistant to change?
  • She writes very imaginatively.
  • She is very much an individualist and likes to fully understand each task before she works on it. This makes sense because I like to know everything about something.

Secondary School

  • Occasionally seems to be in a dream when instructions are given out, but once she knows what to do she gets on well. That'll be the sensory overload.
  • She is very independent in spirit and in behaviour, and on the whole this is no bad thing, but it can be a handicap during some science experiments when there is not enough apparatus for people to work on their own. Enquiring mind. I do like my own company but this was during my first year of secondary school. I didn't know anyone in my form well or at all whereas the others had ready-made friendship groups imported from their primary schools. It is hard to join existing friendship groups but even harder for someone with autism.
  • Quiet, conscientious worker. Single-minded. I am a determined sort of person and will give it my all when I am focused and want to. 
  • Music - She needs to try to work more cooperatively in a small group; she does not always fully grasp the requirements of the task given, and needs further explanation before she can proceed - possibly this is because she tends to let her mind wander. I don't think I necessarily heard the task correctly and understood it because of my sensory overload and taking instructions literally. Sometimes the music tasks where too abstract such as compose a music piece to reflect time. I remember that well and thinking I dunno, this means nothing to me so I just added some banging on a triangle to suggest a clock striking. The work was considered rather unsophisticated but I didn't have much of a clue of how to meet the learning outcomes.
  • She is underachieving this year. She is disengages herself from class activities to a startling extent, and does not work well at all as part of a team. This year 8 English teacher regularly upset me. I did brilliantly well with my Year 7 English teacher who praised me and got me out of my shell and I wrote lots of creative and exciting bits of work. The following year this dragon came along and I felt I couldn't be me. I felt wrong all the time so I withdrew. My year 7 teacher taught me in year 9 and was horrified by how much I had not progressed. 
  • PE - she appears to have difficulty co-operating with her peers. I didn't like PE because I felt that the picking of the teams were unnecessarily cruel because two sporty popular people were given the posts of team captains and it was always horrible to be one of the last to be picked. I felt like some bloody ball and chain on their otherwise great netball/hockey team.
  • Science - she works quietly and on her own most of the time. She can sometimes show some reluctance to do an activity, particularly those requiring group work or presentations. Yup, the loner/poor socal skills thing.
  • Written work thorough. I have a great attention to detail when I put my mind to it.
  • I have been particularly pleased that a pupil who is shy by nature has made such an effort to take an active part in lessons (GCSE Sociology). Its easy why - I liked the teacher who plainly liked me as it was clear I loved his subject and we both shared the dislike for people who don't want to learn to the extent that they spoil it for others. Interestingly, I met him in a pub in my late 20s and he remembered me, thanking me for giving him all my typed up GCSE and A Level notes.
  • She produces a nice tone on the recorder :p
  • It appears that she is constantly making excuses for herself in some lessons. I wonder why an able girl says that she is not able to learn something? (GCSE - Head of year) I wish I could remember what it was that I said I couldn't learn. 

Sixth Form - A Levels

Theology
  • She has suffered some recent setbacks in Old Testament. I wish I knew what that meant, although it must be referring to the module on my Religious Studies course. I think it was a bit information overload and intense since we were analysing verses out of the Bible on themes, such as human destination, God's identity and worship style. We were looking at the OT to see how the view of life after death changed is no small task for a 16/17 year old. I remember how we studied Moses and the burning bush and how God revealed his name. 
  • Her greatest problem is getting her good ideas down, in a logical order, whilst working at speed.
  • Has a rambling approach to essays
  • She makes many interesting and very individual verbal contributions in class.
Business and Economics
  • She is producing work at a variable standard - if at all. I found that if I didn't have an interest in something, I would be totally turned off. Mind you, I wanted to study A Level Economics but there wasn't enough students so we got put in a Business and Economics combined A Level class which wasn't what I wanted to study. 
  • No effort to participate or contribute to discussion. Boring subject.
  • Surprised by a high grade in the mock exam. I can pull things out of the bag at last minute if I have to.
  • She must ask for help if needed.
Sociology
  • Evidence of thorough revision
  • Never afraid to ask questions and take part in discussions. 
  • Her contributions are thoughtful and always to the point.
  • Determined student
  • Well structured written work and focused on the questions
  • I just liked the subject and teacher so I was in a safe place to be me and not allow others to put me off my enjoyment of the course.
Maths
  • She needs to be much more open about her difficulties, seeking support outside of lesson time.
  • I gave up this course as I couldn't process getting A grades in Statistics and ungraded in the other units.
Overall
  • She can always be relied upon
  • She sometimes appears to be very negative about her work.
  • She is a quiet, thoughtful and loyal member of the form.
  • She has a very strong sense of what is right and wrong. 

Conclusions

Primary school was a largely structured environment full of rules. It was a place in which I felt relatively safe so I think I ticked by okay.
Secondary school was not quite so. We were asked who our friends were during the applying for high school process. This was to work out where we would be placed into classes at high school but I wasn't placed with anyone who was a good friend and it made for a difficult first year. Alas also some of my primary school chums were off to other schools too. Fortunately we had enough demand for the school to make another form for year 8 so we got reshuffled. I think this is telling in my school report because I was unsettled again as I found my way with the new class so some progress I made went back during my second year of school, namely in English. The shuffle was good in that there were some lovely people from primary school in my new form class but also some difficult people too. It made for a challenging school life.

It seems apparent to me that my ability to comprehend spoken instructions were impaired. I know this to be true because any long dialogues can be hard for me to process and I can forget what has been said. Given that the teachers recognise that I might need it repeated, and after which I get on well with my work, it is surprising that this wasn't implemented. It would have been much more useful if the teacher had written the task on the board for those of us who have information overload problems and sensory overload regrading sounds so we could read through the task in our own time.

It is apparent that my motor skills were poor in both art and physical education but this was due to my Dyspraxia. I also had help at primary school with my handwriting because I didn't find it easy to hold a pen. I remember seeing a lady each week for specialist support. 

As I got older in secondary school, I found myself to be in some lessons with my form, which were mixed ability, and in classes that were streamed by ability. It seems obvious to me that where I showed a lack of wanting to participate in group work this was where there wasn't anyone I wanted to pair up with. I never really put myself out there to make friends because I was perfectly happy to be by myself but it was obviously problematic when I had to. I never liked group work much because I resented how some people could coast along off the back of other people's hard work. It bothered me how some wouldn't contribute. However, some of my later classes I shared with my brother so we often worked together on things too. It took some of the social difficulties away from me through having an ally. 

"It appears that she is constantly making excuses for herself in some lessons. I wonder why an able girl says that she is not able to learn something?" (GCSE - Head of year)

We have the answer now. I wasn't making excuses - I was telling them that I was having problems and no one listened. I didn't know about autism and I certainly didn't think I had any learning difficulties. I don't think in the mid-90s secondary schools were really understanding autism in intellectually higher functioning girls. We only started having teaching assistants around this time in mainstream schools and that was for children with physical difficulties. It was a time when Special educational needs and disability (SEND) wasn't on the agenda and teachers perhaps were blaming things on the student's attitude rather than factors beyond our control. I went through a phase of anger that my schools never picked this up but they were a product of their time. I have learnt to let much of it go.

Whilst I don't see masses of hints about my autism, it is clear that it was present in my schooling. I wonder how different life would have been if I had known early on? I guess what I can take from this is that no one accommodated my needs, such as it is after one leaves education. As tough as it was, it must have helped me enormously in learning how to deal with issues off my own back and find my coping mechanisms. And perhaps that has been a good thing for me.

Tuesday, 28 February 2017

"If you prick us, do we not bleed?" - Autistic people are not aliens!

The other day this blog entry appeared and it seemed to get parts of the autistic world in quite an upset although its been around a while:

Quote intro:
"Autistic authors often describe themselves as aliens from outer space, but remarkable new research by Antonio Benítez-Burraco, Wanda Lattanzi, and Elliot Murphy suggests that people diagnosed with an autism spectrum disorder (ASD) might more accurately be described as less domesticated members of our own, self-domesticated species."

I am no natural scientist so I am not going to attempt to critique the article from that standpoint because I am only armed with a CC grade at Double award GCSE Science! I think it best to leave that to those who know what they are talking about... however....

The article was dismissed instantly by some and I can agree that the author used ableist language and some of it was offensive but it did get me thinking.

I don't personally go along with the whole "I am an alien/from a wrong planet" line. There's a brilliant support website called http://wrongplanet.net/ for those with Asperger's Syndrome but I do find the name increasingly irritating. I dislike the overemphasis of the differences between the neurotypical and autistic when actually we share a lot of common ground in feelings, functions and experiences. 

That 'focus on the difference' view just further punctuates the line of being "the other" and how helpful is that when there's so many similarities with those with autism and those who are neurotypical? We end up making ourselves out to be something unique when we aren't. Many people share some of our autistic characteristics in terms of their own medical and cognitive challenges and we certainly don't have the full ownership of sensory overload. 

If we keep pushing this agenda that we are alien and from another planet and keep underlining the point we are different, don't then get offended when the neurotypical people then agree! We can help to foster this kind of view. For example, where a child has a very healthy interest in a minority sport, the child may be criticised for it but their neurotypical peers may have the same level of depth and fascination in another sport, but its the socially acceptable one of football, they are not. This repeated restating that autistic people are significantly different from the neurotypical person can have damaging impact so that we end up marginalising ourselves. 

I take exception regarding the position that my lens in which I look through at life is so fundamentally different to the neurotypicals (excuse the generalisations here!!) that I am actually another species, at least cognitively speaking. At times people won't get me but all humans go through that, right?!?

So if we call ourselves aliens from outer space, don't then be surprised if others refer to us as being animal like and undomesticated because actually we invited that criticism in when we overstated our differences.
“If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?"

As stated by Shylock in Act III, scene I
William Shakespeare, The Merchant of Venice

Ok, perhaps not the last but autistic or neurotypcial, we are all one species.