Spectrum 10K

Further to thee piece on this week's Heritage Matters on SpectrumOnAir - these motes have been supplied by our interviewee, Sarah Morgan.

What:

Study with 10,000 Autistic people’s participation to “improve the wellbeing of autistic individuals” by gathering genetic and environmental factors that contribute.

Why:

Autism is a relatively new diagnosis (In past century) and studies are generally small and not generalisable. This aims to get a dataset that will. Allow for statistically significant results that can be used to help wellbeing in Autists

When:

 study was launched to the public in the last month, but people had been. Contacted a year ago.

Community reaction:

Mixed, mostly negative - concerns about consent, data handling and motivation for study

Yes/no on consent form on:

Saliva sample - DNA will be stored long term which may include reading the entire genetic code, second sample if needed, data and DNA can be used. In future studies academic collaborators and external research databases, (optional) annonamysed data and dna shared with commercial collaborators and financial benefits will not be shared with participants.

Collaborators

Wellcome Sanger institute - 2019 allegations of commercial use of data collected from African studies - Stellenbosch university has demanded return of dna samples

Dr Geschwind - involvement in. ‘Cure Autism Now’ which has been folded into ‘Autism Speaks’ co-principal investigator

Spectrum10 ‘is being secured on UoC safe haven ‘ and will not be sold, during or after the study’

A grant specifies that the 10k will be combines with other databases across the world with Autistic genetic information to understand biology, improve diagnosis and investigate genetic subgroups

The Study Controversy

Subgroups are seen by some in the community as a dividing label that restricts rather than allows for the correct support needed by Autists. It also strengthens the supports of stigmatisation and misunderstanding of the condition

Spectrum10k recognise more needs to be done to explain the value of the study, the measures in place to protect data and other concerns.

Autistic people will be part of the committee on sharing data

No individual feedback on DNA - as not the resources to do so

Ambassadors are mostly white and able bodied

Cannot explain how they hope to improve outcomes

Further Resources

Spectrum 10K - spectrum10K.org

Twitter

@commaficionado - Pete Wharmby

@AutSciPerson - Autistic Science Person

@AnnMemmott - Ann Memmott

@HolSmale Holly Smale

Rebel Wicend

I played Bryn Fôn's excellent song - "Rebel Wicend" on the Heritage Matters programme -which is broadcast on SpectrumOnAir each week at 19.00 Tuesday's, 14.00 Thursdays and 18.00 on Saturdays (UK time - but available around the world by clicking the link above. 

The lyrics in Welsh then English are posted below -

Mae’n cyrraedd ei swyddfa yn gynnar bob bore
Yn cario ei frîffces ecsetiwtif bach.
“Bore da, Mistar Eliot” a “Diolch yn fawr Rachel,
A chofiwch, dim siwgwr, trio cadw yn iach.”
Ac mae’n eistedd fel sowldiwr o flaen ei brosesydd
A phob pin a phapur a ffeil yn eu lle,
Ac am bump mae o’n ol tu ol i lyw’r BMW
Yn gyrru am adre ar gyrion y dre.

Bob nos wrth droi’r goriad mae’n gweiddi, “dwi adre.
Sut ddiwrnod ges ti a be sy ‘na i dde?”
Ac ar garreg yr aelwyd mae’i slipars yn c’nesu
Ac arogl cartref yn llenwi y lle.
Ond ar nos Wenar daw adre a hongian ei siwt
A newid i’r hen denims cul,
Hongian modrwyau trwy’r tyllau’n ei glustiau
A chuddio y rasal tan yn hwyr ar nos Sul.

A dyna chi fo, yn rebal wicend go iawn,
Hefo’i stic-on tatw a’i dun baco herbal yn llawn.
Yn rebal wicend o’i gorun i’w draed
Ac ysbryd gwrthryfel yn berwi ‘mhob diferyn o’i waed.

Ac ar bnawn Sadwrn mewn denims a lledar,
Crys T heb lewys a’i wallt o yn saim,
Mae’n mynd draw i’r dafarn i siarad a’r rocars,
I yfed Jack Daniels yn lle lagyr a laim.
Ac ar ol ysfed digon mae’r gitar yn dod allan
Ac mae o’n canu y blws a thrio swnio yn ddu.
Son am drallodion genod ysgol yn disgwyl.
Mae o’n teimlo fel deryn ac ymddwyn fel ci.

Amser cinio dydd Sul mae o’n ol yn y dafarn
Yn yfed ei hochor o ddeuddeg tan dri,
Yn siarad yn ddwfn am genod a wisgi
A phob ystum o’i eiddo yn dweud ‘ylwch fi’.
Ond gyda’r nos, cyn gwylio Hel Straeon,
Mae o ar goll ym mybls y bath, digon siwr.
Mae’r metamorffosis drosodd am wythnos fach arall
Pan mae’r rebal yn mynd lawr y plyg gyda’r dwr.

Ac ar fore dydd Llun mae o’n ol yn y swyddfa
A’r cris yn ei drowses yn finiog fel bled.
Mae’r rebal wicend yn edrych o’i gwmpas
Ac yn sylweddoli ei fod oyn mêd

English Translation Lyrics:

He arrives in his office early each morning
And carries his little executive briefcase.
“Good morning, Mister Eliot” and “Thank you very much Rachel,
And remember, no sugar, trying to stay healthy.”
He sits like a soldier in front of his processor
With each pin and paper and file in their place,
And at five he’s back behind the BMW’s steering wheel
Driving back home on the outskirts of town.

Each night as he turns the key he yells, “I’m home.
How was your day and what is there for tea?”
And by the fireplace his slippers are warming
And the smell of home filling the place.
But on Friday night he comes home and hangs his suit
And changes to the old narrow denims,
He hangs rings through the holes in his ears
And hides the razor until late on Sunday night. 

And there he is, a real weekend rebel,
With his stick-on tattoo and his herbal tobacco tin filled.
A weekend rebel from head to toe
And the spirit of rebellion boiling in each drop of his blood.

And on a Saturday afternoon in denims and leather,
A sleeveless T-Shirt and his hair full of grease,
He goes down to the tavern to talk with the rockers,
To drink Jack Daniels instead of lime and lager.
And after drinking enough the guitar comes out
And he sings the blues and tries to sound black.
Discusses the woes of pregnant school girls.
He feels like a bird and acts like a dog.

At lunch time on Sunday he’s back in the tavern
And drinks from midday until three,
He talks deeply about girls and whiskey
And each motion of his says ‘look at me’.
But by night time, before watching ‘Hel Straeon’,
He’s lost in the bubbles of the bath, most likely.
The metamorphosis is over for another week
When the rebel goes down the plug with the water.

And on Monday morning he’s back in the office,
And the crease in his trouser is as sharp as a blade.
The Weekend Rebel looks around him
And realizes that he’s made.

To buy the album click - 

https://amzn.to/2ULazgO

Listening to Spectrum On Air Programmes

This blog is frequently used to put further information about subjects raised in the two programmes that Shery Delfani and I (David Morgan) joint host on Spectrum On Air. 

Click here to get the live feed from SpectrumOnAir

To listen to the latest episodes of "Heritage Matters" go to

 https://www.spreaker.com/show/heritage-matters_1

To listen to previous editions of PPS go to

https://www.spreaker.com/show/process-people-sources

Heritage Open Days

 

Heritage Open Days in Europe - internet links

Heritage Open Days (England)

Welsh Open Days (Cymru/Wales)

Doors Open Days (Scotland)

European Heritage Open Days (Northern Ireland)

European Heritage Days (Europe, excluding UK)

Journées Européennes du Patrimoine (France)

Cân Yr Ysgol

 I am playing this song, this week, on the show that Shery Delfani and I present on Spectrum On Air called "Heritage Matters". It's by the great Welsh singer/songwriter, Dafydd Iwan. The video below has the music and the Welsh geiriau and English lyrics.

I

Tackling Diabetes

 Next week I'm doing a piece on Diabetes on Spectrum On Air's "Heritage Matters". I recommend watching the following Video produced in London by Diabetes UK.

If you can, please support the work they do - donations can be made via this link.

The Rebecca Riots

 On my Heritage Matters programme (scroll down towards the end - but do see what else is broadcast on our fantastic new station) on Spectrum On Air, I played the following song about the Rebecca Riots which occurred in South West Wales in 1839 and 1842-3.

(link if video doesn't play - https://youtu.be/Pm1TOcLWYZo )

I thoroughly recommend the following book about the background  and events of the riots.