Autism and Cancer

Some early thoughts on autism and cancer.

INTRODUCTION

This post will consist of some early thoughts about Autism and Cancer and also some pictures from my new abode. However before getting into the main meat of the post there is an issue to address briefly first…

AUTISM AND FUNCTION LEVEL LABELS

In brief: DO NOT USE!! For more detail read the rest of this section. Before moving on to my onw thoughts a couple of honourable mentions: the Neurodivergent Rebel has posted some good stuff about the abuse of function level labels in relation to autism and Laina via both thesilentwave.wordpress.com and her sharing site lainascollections has also covered the issue.

I am often labelled as a high functioning autistic (indeed readers of this site will be aware that I was already into my 30s before being recognized as autistic at all) but that is highly misleading and dangerous. People noting my overall intelligence and articulateness and the fact that I devour books at rapid rate assume I need little support. Not true – there are some things that I struggle badly with and where support is needed. The “High Functioning” label is at best misleading and at worst it is downright dangerous.

MANAGING AUTISM AND CANCER

Managing cancer is a challenge but considered in isolation one that can be handled. Managing autism is sometimes a challenge (and sometimes autism works in my favour), and taken in isolation it is not too difficult. Managing cancer through the prism of autism is an enormous challenge. Apart from my regular blood thinning injections (I had two blood clots while being treated in hospital), which are still administered by a district nurse I am now largely responsible for taking my own medications of which there are huge quantities.  I also need to do things like monitor body temperature (currently seems to be stabilised at 36.1 C) and weight (one effect of being so ill is that now weigh less than at any time since my mid-teens. 

ADDENBROOKES ACKNOWLEDGEMENT

A small army of staff at Addenbrookes went way above and beyond the call of duty in looking after me and treating me during the worst of the illness. To name names would be invidious – you all know who you are and you are all absolute heroes. Understaffed and underfunded as it is the NHS is kept functioning by the efforts of people like this, who can still crack a smile when they have been rushed off their feet for 13 hours straight.

HOSPITAL TALES: WALKING STRENGTH BACK INTO THE LEGS

For about the first two weeks I spent at Addenbrookes I was effectively completely immobile (for a few days I was wired up to an oxygen mask), and for about a week before that I had hardly been mobile at all, so I lost a lot of strength from my legs. Once I was able to be mobile I took to walking up and down the ward when I felt strong enough, starting with small distances and working my way up gradually. Before I finished I could on a good day walk up and down the ward 20 times without stopping. I felt a benefit of this yesterday when I did a small amount of walking in King’s Lynn town centre to do my christmas shopping. 

PHOTOGRAPHS

I promised some pictures and here they are:

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Cricket Corner! (some of my cricket books are on other shelves as well but this is most of them)
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Display items in sitting room

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Thomas’ Cabinet of Curiosities (units assembled by Simon from NAS, treasures arranged by my father) – named in honour of Ian Stewart;s “Cabinet of Mathematical Curiosities”.
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A close up of one section.

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1907 railway map (facsimile)

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The Morden Map of Norfolk in its new niche.
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Two views through the windows to finish – being able to look straight at green space is a privilege.

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Links, Pics and a Thunderclap

Some links to excellent pieces by autistic writers, especially on the subject of Judith Newman’s book To Siri With Love. Details of a thunderclap on the subject of driven grouse shooting and some of my own photos.

INTRODUCTION

I have had a busy few days imaging for James and Sons’ final auction of the year (takes place on Wednesday – click here to view on online catalogue), so it is only today that I have time for another post. Before getting into the main meat of today’s post there is a small matter of an…

APOLOGY

Some of you may have noticed snowflakes falling across pictures on this blog (as I did today, when I accessed it at the library to get a picture I needed for something I was doing). I am aware that some of my followers have sensory issues that make this sort of thing unwelcome, and I have changed my settings so that those snowflakes will not appear again. I apologise to any who were inconvenienced by this ‘seasonal’ addition of WordPress’s.

SOME AUTISM RELATED PIECES

I will start this section by stating that most of the pieces I link to here were drawn to my attention by Eve Reiland at americanbadassactivists. Another excellent source of good material by autistic people is Laina, both in her own right at thesilentwaveblog and via her specialist sharing blog Lainascollection.

My first links concern the representation of autistic people in the media:

The remaining links in this section all related to…

#BOYCOTTTOSIRI

The title of this section refers to the backlash by the autistic community against Judith Newman’s book To Siri With Love. Although they make unpleasant reading, because of what they reveal about the book, I urge you to follow up the links I give, all of which, save one, are to pieces about this book written by autistic people. The exception, which ends this section, is to an alternative reading list, and was also created by an autistic person. 

I start with what is actually last piece I read about this issue, “An Autistic’s Thoughts On To Siri, With Love by Judith Newman” which was posted on writeabledreams.

My next offering, by Susie Rodarme is titled “AN OPEN LETTER TO HARPERCOLLINS ABOUT TO SIRI WITH LOVE“, and was published on bookriot.com

Next, courtesy of goodreads.com comes Kaelan Rhywiol’s review of the book – it is a superbly written take down of the book.

Next we turn to autistichoya and “Why we must #BoycottToSiri / An open letter to Judith Newman“. 

The last specific #BoycottToSiri piece to which I link is Eve’s as yet unanswered closing challenge to the author “Judith Newman | Stop The BS and Evolve into an Actual Autistic Ally #boycotttosiri” 

I end this section with a link to a post on huxtales simply titled “The Essential Autistic Reading List“.

A THUNDERCLAP

To take part in a thunderclap you have to be on at least one of facebook, twitter and/ or tumblr. I am on the first two named, and as such have contributed approximately 5,500 connections to this thunderclap calling for a ban on driven grouse shooting. If like me (see here for a previous piece on this subject) you hold those who take pleasure in shooting at birds in utter contempt, and you are on one of the three networks mentioned please add your voice to thunderclap – more details below:

GrouseThunderclap.jpg

PICTURES

Lights, Tower StreetLight chainsLights, Broad StreetStarVancouver ArchLit up treeBlack headed gullGullsB7ackbirdBlackb1rd

Bus window 1
This network of cracks were in the upstairs front window of an X29 bus – when it is a double decker I invariably sit upstairs, and the best seat is the front window seat on the side opposite the driver.

LeafRMCSquirrel

Olympics 50p.jpg
I needed this 50p for my bus fare, so I could not keep it until a better opportunity to photograph it arose.

 

 

 

 

 

 

Sunday Sharing Spectular

A mixed bag of a post, featuring autism, politics, mathematics and photography.

INTRODUCTION

As well as the wide variety of ,links that give this post its title it will feature some of my own stuff, notably pictures.

AUTISM

I start with some stuff about Autism, beginning with…

AN ANNOUNCEMENT FROM LAINA

Laina, guiding genius of thesilentwaveblog, has set up a new blog specifically for sharing stuff. Her announcement of this is here, while the new blog can be seen here.

STIM THE LINE

I end this little section with what is a new find for me, stimtheline, with a post titled “Autism is Me“.

GENERAL LINKS

The four links in this section are links that form no natural groupings:

ROBERT LOVES PI ON FULLERENES

This refers to three related pieces that I have seen on robertlovespi. Fullerenes are spheroid carbon allotropes (also known in some circles as buckyballs – both the formal and informal deisgnation pay tribute to the architect Richard Buckminster Fuller who was particularly known for geodesic domes). The three pieces are:

  1. The one that first attracted my attention, titled “The Construction of a Zome Model of a 240-Atom Fullerene Molecule, In Seven Pictures
  2. Then comes “A 240-Atom Fullerene, and Related Polyhedra
    C240 fullerene 2
  3. Finally, “The C-320 Fullerene Polyhedron“.

A TEASER

This one comes from brilliant, though it has a little addition of my own as well:

PN

This is an easy question, even without the multi-choice options given on the site. If the 51 under the dividing line was replaced by 53 it would become fiendishly difficult – can you work out why?

PHOTOGRAPHS

GullPale drakeMoorhenHorse and Cart

Flatfish
This is a twitter find.

 

 

Numerous Neurodiversity Nuggets

Links to some important pieces about neurodiversity, and a few photographs at the end.

INTRODUCTION

This one is mainly a sharing post, before I finish with some of my photos. As always links will be in bold and in a different colour from the surrounding text. However, before moving on I give a special mention to Eve Hinson of americanbadassactivists who signposted me to a lot of the links I share below.

A SILENT WAVE SPECIAL

We start with an old favourite, Laina over at thesilentwaveblog, who has produced a gem of a post titled “15 More things not to say (or do) to an (this) Asperger’s / autistic person“. Here to whet your appetite is her first point:

1 – “Oh, you must be high-functioning.”

Please–Don’t Be That Person.  Any sentence containing “you must be” is an assumption, and you know what They Say about the word “assume” and its spelling and all that.

If that weren’t filled enough to the brim with potential land mines, let’s factor in the sheer wrong-ness of the statement.  Maybe I’m functioning OK today.  And maybe, so are you.  All is calm, all is bright.

But now, let’s stress the human system.  Kind of like building an epic metropolis on SimCity and then tearing it down with Godzilla or something.

If the human system encounters a Godzilla attack that is destructive enough or lasts long enough, the system will suffer.  It might even destabilize.

By assuming I’m “high-functioning” (whatever that even means anymore), people who say stuff like this are, by comparison, speaking poorly of those who act differently.  Which, on many days, includes me.  

Not only that, but they’re undermining the sheer force of will (and luck) it often takes for me to suppress my natural self and create a likable Pseudo-Me that gets past the social metal detectors.

Please, never make assumptions, never put anyone else down (even if it’s disguised as a compliment to my face), and never underestimate the energy it takes for me to persuade the world to accept me. 

MUSEUM VISITING THE
“ART OF AUTISM” WAY

The Art of Autism website is a regular source of good material, and this piece, by Julie Blair is no exception. It is chock full of good advice on how to make a museum visit really work. Cited at the end of it is Lisa Jo Ruddy of autisminthemuseum which I also recommend. 

NEUROCOSMOPOLITANISM

This section is one that I owe to Eve Hinson (see intro) – it was one of her posts that put me on to Nick Walker’s site, neurocosmopolitanism. I offer you four golden nuggets from this site and urge you to do some more exploring of your own:

  1. Neuro-what? – Nick’s opening post, in which he sets the scene for what is to follow and defines neurocosmopolitanism (a word of his own coinage). Here is a quote:
    Neurocosmopolitanism goes beyond this baseline of acceptance, as cosmopolitanism goes beyond mere tolerance of cultural differences. The neurocosmopolitan seeks to actively explore, engage with, and cultivate human neurodiversity and its creative potentials, in a spirit of humility, respect, and continual openness to learning and transformation.
  2. Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm – In which Nick attacks what he calls “The Pathology Paradigm” and seeks to replace it with “The Neurodiversity Paradigm”:

    The Neurodiversity Paradigm

    Here’s how I’d articulate the fundamental principles of the neurodiversity paradigm:

    1. Neurodiversity – the diversity of brains and minds – is a natural, healthy, and valuable form of human diversity.
    2. There is no “normal” or “right” style of human brain or human mind, any more than there is one “normal” or “right” ethnicity, gender, or culture.
    3. The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of race, culture, gender, or sexual orientation). These dynamics include the dynamics of social power relations – the dynamics of social inequality, privilege, and oppression – as well as the dynamics by which diversity, when embraced, acts as a source of creative potential within a group or society.

  3. What is Autism? In which Nick sets out to provide an introductory definition of Autism. Here is paragraph 1 of his outline:
    Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.
  4. Guiding Principles for a Course on Autism – Precisely what this title suggests. I quote the closing paragraph of principal 1:
    So a good course on autism should actively and uncompromisingly promote the neurodiversity paradigm, just as a good African-American Studies course is actively and uncompromisingly anti-racist. Work based in the pathology paradigm, if it’s assigned at all, should be assigned only so that the instructor and students can critique it in order to hone the students’ skills at recognizing and critiquing such work.

IDENTITY FIRST/ PERSON FIRST

This one comes from Autism, Or Something Like It. Titled ““Autism Parent” and the Horrible Duplicity of the “Autism” Label” it explains why the designation autistic person, which happens to be preferred by the vast majority of #actuallyautistic people, is preferable to so-called ‘person first’ terminology. I quote three key paragraphs below:

As for me, I’ve been pretty black and white about my stance on this. Autism is not a set of behaviours, nor is it defined by the inability to perform tasks. Autism is a neurological difference, present at birth and scripted into genetic codes (for more on the definition of Autism that we use in our household, please see this fantastic post, What Is Autism?, by Nick Walker).


So when I say that Sam is Autistic, I am neither defining him by what he can do or what he can’t do; I am describing him by how his brain (probably the most fundamental part of who he is as a human being) functions and by how this set of differences sets him apart from people who are not Autistic.

And…

Unfortunately, in many cases, the zealous movement of ‘person first language’ actually reenforces that which it is trying to combat. By stating repeatedly that Autism is a (implied ‘negative’) label and should not “define” our children, what is inherently being done is underscoring the idea that Autism is something that should be perceived as ‘deviant’, as opposed to a naturally occurring divergence from normal.

MYTHBUSTERS (AUTISM VERSION)

I end the sharing part of this post with a piece presented in comic strip form on everyday feminism, titled “8 Things You Were Probably Taught About Autism That Are Completely Wrong“. I hope you will visit the post and sample all eight of it’s parts. As an aperitif here is number 3:

AS 3

PHOTOGRAPHS

wagtailGreyfriarsDevice, greyfriarsGuanock Gate 1Guanock Gate 2Blackbirdspider1spider 2Spider 3Bird

 

 

Monday Madness 3: Mainly Autism

Some autism related links, and some photos from Musical Keys.

INTRODUCTION

As NAS West Norfolk branch secretary and an #actuallyautistic person I always like to share good stuff about autism. I am including within this a piece that is not directly about autism but relates to many of the issues that autistic people highlight.

AN ERIN HUMAN INFOGRAPHIC

This piece from erinhuman.com titled “Disability 101: Medical Model vs Social Model” features a really excellent infographic, reproduced below:

dis101

AN OLD FAVOURITE AND A NEW FIND

Laina over at thesilentwaveblog has, as she so often does, hit the nail smack on the head with a piece titled “Depathologizing Asperger’s / autism ~ The strength vs ‘lacking’ edition” The feature graphic is below:

Laina is the old favourite of the title of this section, while the new find, brought to my attention by Eve Hinson of americanbadassadvocates, is Michelle Sutton of michellesuttonwrites whose recent piece titled “THE LANGUAGE OF IDENTITY, OR “I AM NOT AN AUTISM PARENT”” I heartily recommend.

PHOTOGRAPHS

These photographs were taken at Muscial Keys on Saturday, which I am involved in due to my association with NAS West Norfolk.

KirstenInstruments

Screen
The first three screens show the things I have built up involving each of my three sprites

Screen2Screen7

Screen4
This focusses on the backdrop itself…
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And not long later I had created functions for this screen that meant that every button I could assign an individual function now did something.
Screen6
Close up of backdrop and sprites.

 

Autistic Pride Award: Laina’s 500th Post

My response to Laina’s magnificent 500th blog post “The Autistic Pride Award [500th Post]”.

INTRODUCTION

Laina over at thesilentwaveblog decided to do something special for her 500th blog post. The result was an absolutely splendid post, and this is my response to it. 

THE AUTISTIC PRIDE AWARD –
LAINA’S BRIEF

This section sets the scene for the remainder of the post. First here is Laina’s brief:

  1. Whoever wants to participate, participate.  I’m focusing primarily on Asperger’s/autistic people, of course, but anyone who supports autistic people and neurodiversity is welcome!
  2. Do link back to the blogger who gave you the idea 
  3. Do link back to this blog as the original creator.
  4. Describe a bit about yourself.  However much you feel comfortable saying.
  5. List your main “special interests” or areas of primary focus/niche specialties.
  6. If you’re on the spectrum yourself, describe why you’re proud to be Aspergian/autistic or what you like about being Aspergian/autistic.  
  7. If you’re not on the spectrum yourself, you can use this opportunity to describe a loved one in your life who is and what makes them awesome, or you can explain what autism means to you and why you think the world would be a better place if it were to be more embracing of autism.
  8. (Of course, you can answer more than one!  For example, someone who is autistic can also describe how much better the world would be if it was more open toward autism.)
  9. If you like, you can list other blogs or resources that are autism/neurodiversity-positive, to give them a shout-out, too.

The fact that I am writing this post demonstrates that I wish to participate (1). I was inspired the source article itself which deals with (2) and (3), and I take this opportunity to urge you not just to read Laina’s 500th post in full but also to explore her blog in more detail. Thus, the rest of this post will start with point (4) of this list.

ABOUT ME

This is my WordPress profile statement:

I am branch secretary of NAS West Norfolk and #actuallyautistic (diagnosed 10 years ago at the comparatively advanced age of 31). I am a keen photographer, so that most of my own posts contain photos. I am a keen cricket fan and often write about that subject. I also focus a lot on politics and on nature.

You can learn more about me by reading more posts on this blog, and the rest of this post. I will include photos that relate to some of my interests, and links to other blogs the relate to my interests.

SPECIAL INTERESTS

  • Photography – as many of the posts on this blog show. There are many photographic blogs that I could link to here, but I have chosen just one, Cindy Knoke’s, from which I choose to feature a post titled “Gorgeous Greece & Her Beautiful Islands“. Here is one of my fairly recent photographs:
    Castle
  • Public Transport – I am the creator of a London Transport themed website, www.londontu.be, I have blogged here about many journeys, including Inlandsbanan and The Jacobite, while the photograph above was taken through the window of a moving train. Here is a public transport related photo to end this segment:
    Farewell to the Jacobite
  • Nature and Natural History – these linked interests are lifelong. For a natural history blog I thoroughly recommend whyevolutionistrue, while for good stuff about nature I recommend Anna’s blogthis is one of her posts about nature. Here is a recent bee picture to end another segment:
    P1020327
  • Cricket – I am listening to commentary on the second T20 between England and South Africa as I write this.
  • Autism – kind of obvious given that I am both autistic and involved in an autism charity. Before moving on to autism related blogs I offer a link to the National Autistic Society website (it is a very useful resource). I have of course already linked to Laina’s blog at the very start of this post, and I also recommend strongly theunabashedautist, americanbadassadvocates and theinkedautist.  Having (including the opening link to Laina’s blog) given shout outs to four blogs by #actuallyautistic folk I finish with a link to Autism Mom.

WHAT I LIKE ABOUT BEING AUTISTIC

Many of my greatest strengths, such as my computer skills, my attention to detail, my skill at taking and editing photos are a direct product of my autism. Autism is part of who I am, and never in the ten and a half years since I was diagnosed have I wished that I was not autistic. I conclude this post with a photographic collage that I used in an auction alert email sent out yesterday:

1052 composite
I envisaged something like this when I started assembling this image – along the top we have the full lot followed by close-ups of both faces of the medal, while along the bottom we have photographs of the engraving around the rim.

The Douglas Adams Birthday

A birthday post.

INTRODUCTION

It is my birthday, and this year the number is the same as the answer to the Ultimate Question of Life, the Universe and Everything in The Hitchhikers Guide to the Galaxy. 

OTHER 42s

There are a total of forty-two eyes in a standard deck of playing cards – three two-eyed kings, one one-eyed king, all four queens are two-eyed, and two two-eyed and two one-eyed jacks makes a total of 21, which needs to be doubled as the faces appear twice on each card.

There are 42 spots on a pair of standard dice – 21 on each.

The great game of cricket has a code of 42 laws governing it. Law 42 governs fair and unfair play. The most important phrase in this law is: “the umpires shall be the sole judges of fair and unfair play“.

Adams is not the only famous writer to have used the number 42 – Charles Lutwidge Dodgson aka Lewis Carroll was responsible for the following:

  • The original Alice in Wonderland had 42 illustrations
  • “All persons more than a mile high to leave the court” was Rule 42.
  • The Baker in The Hunting of the Snark had 42 boxes

A COUPLE OF “HITCHHIKER” LINKS

To conclude this brief Birthday post I hand over to Laina of thesilentwaveblog with:

  1. The Hitchhikers Guide to Neurotypicality and…
  2. The Hitchhiker’s Guide to Asperger’s / autistic people (*one* autistic person): A manual for non-autistic people.