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:

P1210543
Cricket Corner! (some of my cricket books are on other shelves as well but this is most of them)
P1210544
Display items in sitting room

P1210545

P1210546
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”.
P1210547
A close up of one section.

P1210550P1210551

P1210549
1907 railway map (facsimile)

P1210548

P1210552
The Morden Map of Norfolk in its new niche.
P1210553
Two views through the windows to finish – being able to look straight at green space is a privilege.

P1210554

About Autism

Some important autism themed pieces and a few of my photographs.

INTRODUCTION

I have several important links relating to autism to share with you, and I urge you to continue that sharing process. Just to remind my readers I am #actuallyautistic, and also branch secretary of the National Autistic Society’s West Norfolk branch, and in that latter capacity I will conclude this introduction by reminding you of NAS’s catchline:

UNTIL EVERYONE UNDERSTANDS

A NOTE ON ATTRIBUTIONS

I found some of these pieces by way of people other than the original author. In such cases as well as crediting the actual author I also intend to mention the person who gave me the tip off. If you seen an underlining anywhere it is a link, and those links that are body text will be in a colour other than black to further highlight them.

INCLUSIVE AUTISTIC TRAITSAUTISTICALITY

This piece was brought to my attention when the Neurodivergent Rebel reblogged it. It is a long piece, but very readable and absolutely bang on the money. The list itself is too long to quote here, but the screenshot below which explains the problems that the post goes on to address brilliantly is a good start:

IAT

THE LEFEVER BIKE RIDE

Paul and Jamie Lefever recently undertook a sponsored cycle ride from King’s Lynn to the National Autistic Society’s HQ in London, a distance of 118 miles. A full account, under the title “11-year-old Jamie cycles 118 miles for our charity (4 September 2017)” is available on the NAS website.

Jamie Lefever.

ABA THERAPISTS BUSTED

This piece, written by Amy Sequenzia, a well known autistic person and advocate for autism, was originally posted on the autismwomensnetwork under the self explanatory title “ABA Providers Making Fun of Autistic People“. I include a graphic from this post below:

Image is a photo of a group of human figure-shaped wooden pegs clustered to the left and a single wooden peg standing off to the right. Text says,
Image is a photo of a group of human figure-shaped wooden pegs clustered to the left and a single wooden peg standing off to the right. Text says, “It is about how ABA “therapists” REALLY see Autistics. It is about them making fun of us because they see us as broken and hopeless. -Amy Sequenzia, autismwomensnetwork.org”

 PREPARING AN AUTISM FRIENDLY SECONDARY CLASSROOM

With the new school year just getting underway, Lynn McCann of Reachout ASC has published a very informative and constructive piece under the title “Preparing an autism friendly secondary classroom“. 

AN AUTISM RELATED TWEET

While preparing this post I saw the following tweet, from Paul Isaacs, so here it is:

WEB RESOURCES FROM THE NEURODIVERGENT REBEL

I end the post with something I have touched on before. Previously I only included the email address for those who wanted to add to the list. This time I include the list as well:

web resources

This is a growing list. Please send suggestions to NeurodivergentRebel@gmail.com

PHOTOGRAPHS

As always, I end this post with some of my own photographs:

wagtail in pigeon's shadow
The pigeon in the background helps to show how tiny this wagtail is.

Squirrel

climbing squirrel
No I have not rotated this shot – the squirrel really is on a vertical tree trunk.

high tide and sunset

Rathskellar and Hanse House
This shot shows Hanse House and the Rathskellar, the latter of which is hosting a charity beer festival this weekend.

Marriott'sPlaques

27 King Street
I was due to steward at 11-13 King Street between 12 and 2PM on Heritage Open Day, but this has now been changed to 27 King Street, which is this fine building.

27 King Street - plaque

EIFCA boat 2
The Eastern Inshore Fisheries and Conservation Auhtority.
Cockler and research boat
The cockling boat Baden Powell and a Fisheries Research vessel.

Serene DawnCormorants and West Lynn ChurchCormorants 6 (1)Cormorants and gullsPC

 

An Important Letter to be Delivered on International Women’s Day

An important letter to be delivered to world leaders on International Women’s Day (8th March) and a few other bits. Read, enjoy and please share widely.

INTRODUCTION

This blog post features two special sections to start, and then some regular aspiblog fare to finish. We start with…

A LETTER TO WORLD LEADERS

Because I am on the mailing list of ONE I received their email containing a letter about education for girls and a button to click to add my name. Here is the text of the letter

A Letter to Leaders

You couldn’t be where you are today without a good education.

But because poverty is sexist, 130 million girls across the world are denied this basic right. Indeed, if the number of girls out of school formed a country, it would be the tenth largest on the planet – bigger than Japan or Germany.

All children deserve a good education, but in the poorest countries girls are denied it more often than boys. Education is vital for moving out of poverty. Every additional year of school that a girl completes increases her future earnings, which is good for her family, her community and her country.

We cannot afford to squander the potential of 130 million girls to cure diseases or end wars, invent brilliant technology or revolutionise an industry…or simply to access opportunity.

We are coming together and uniting across our divides to get every girl into school and to make sure she gets a quality education once she’s there.

But we need you to do the same.

Your education helped you to get where you are today – and it is in your power to help millions of girls to get theirs. Please act now, with the right policies and the necessary funds.

Show us that politics can work for the people – starting with the people who need it most.

To add your name to this letter, as I already have:

ADD YOUR NAME WITH ONE CLICK

The letter will be delivered to various world leaders on International Women’s Day, March 8th.

SOME SPECIAL COINS AT AUCTION

These pictures are of lots 1036-40 in James and Sons’ February Auction. This auction, like our January auction which is Monday-Wednesday of next week is a three day affair, although day three, which the coin lots will be opening, will be at the Maids Head Hotel, Norwich, after two days at our shop in Fakenham. Save for the picture of the presentation box for lot 1040 these images are all ultra hi-res (600 dpi) scans…

1036
Lot 1036 (all these lots have at least three images, one of each face of the coins and a composite).

1036-a1036-b

1037
Lot 1037

1037-a1037-b

1038
Lot 1038

1038-a1038-b

1039
Lot 1039

1039-a1039-b

1040
Lot 1040, a medallion rather than a coin.

1040-a

1040-b
This will be the front cover picture on our printed catalogue for the February auction.
1040-c
The presentation box.

A COUPLE OF LINKS

First from Neurodivergent Rebel this post titled Frienships & Loneliness.

Second, courtesy of People Need Nature comes this report entitled A Pebble In The Pond (it is a 16-page PDF and thoroughly worth reading).

PICTURES FROM KINGS LYNN

Here are some pictures from earlier today…

dscn9149dscn9150dscn9151dscn9152dscn9153dscn9154dscn9155dscn9159dscn9160dscn9161dscn9162dscn9163dscn9164dscn9165dscn9166dscn9159dscn9168