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

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.

Spectrum On Air

 My apologies - the last month has been very busy, hence the lack of posts.

One of the things tying me up has been getting a second programme up and running on https://spectrumonair.com/

Heritage Matters has its second edition, which is broadcast (UK time) Tuesdays at 19.00; Thursdays at 14.00 and Saturday's at 18.00. It covers most things that could be described as "heritage" - archaeology, history, learning languages (and music in different languages), and 'culture' generally. It balances talk with a wide range of music. On this week's programme we'll be talking about the UK Festival of Archaeology; and a song about the survival of Wales through many centuries by Dafydd Iwan; and an interview about an initiative to encourage people from across the world to meet in Milton Keynes.

PPS has continued, but breaks for the month of August (most legislatures & local government in the Northern Hemisphere winds down or goes into recess). This week it will be on at noon, on Monday, 01.00 on Wednesdays & 10.00 Fridays (UK time). This weeks's programme a very useful source of news - Politico; (US Editions)(European Editions), Parliamentary Recesses around the world; and Shery & my chats about Mental Health Matters.

https://spectrumonair.com/schedule/

My co-presenter for both programmes is Shery Delfani. Do listen in - SpectrumOnAir is available a

                                                                                   PPS

Heritage Matters

Abacus

 Can/ Song: Abacus

Canwr/Singer: Bryn Fon Album: Abacus Prynwch Abacus / Buy Abacus: http://www.sadwrn.com/cd.asp?id=497 Welsh Music Blog / Blog Cerddoriaeth Cymraeg: http://welshmusic-cerddoriaethcymraeg... Twitter: http://twitter.com/#!/Welsh_Music Today I'll be playing a Welsh song on my programme "PPS" (which airs at noon on www.spectrumonair.com). I have always found that a very enjoyable way of learning a language is to listen to songs in that language - and to use a translation to enhance my own vocabulary. Of course many songs shorten words - but, over time both your ear for lyrics and vocabularly improves. I'm very grateful to, in particular, Marc Griffiths whose show on BBC Radio Cymru on Saturday evenings have introduced to music, singers and groups, who I have come to love - and have improved my Welsh.

One particular favourite is Bryn Fôn - and 'Abacus' - these are the lyrics in Welsh - and an English translation.

CYTGAN: Geiriau: Ti'n gadael i mi gredu bo gyn ti ddim diddordeb Wedyn cynnig cysur, y cysur mwyaf glandag Fethishi ymateb, mae'n rhaid mod i yn ddwl Ond roeddet ti 'di chwarae 'fo Abacus fy meddwl Ti'n gadael i mi greu y broblem o ddau un Wedyn cynnig ateb, dy ateb di dy hun Fedraim cael fy mhen rownd y sym anhygoel hon Ti chwalu'r Abacus, Abacus fy nghalon Mae un ag un yn ddau a chdi a fo 'di rheiny Dwi'n cyfri dim i chdi - yr un odd sydd ddim yn rhannu Ond cerddais lawr y bryn yn rhannu fy mreuddwydion Yn tynnu gwallt fy mhen Tynnu gwallt fy mhen A chyfri fy mendithion Ti'n gadael i mi feddwl fod rhywbeth yn y gwynt Ond gwn yn mer fy esgyrn - ddaw'r ateb ddim ynghynt Ti'n cynnig rhif dy ffon fel mathemateg pur A'r cwbl dwi angen ydi'r ateb i fy nghur Ti'n gadael i mi fynd efo cusan ar fy moch 'Di'r gawn ni rywbryd eto jysd ddim yn canu cloch Y batri aeth yn fflat yn y gyfrifiannell hon Ti di chwalu'r Abacus, Abacus fy nghalon CYTGAN: Mae un ag un yn ddau a chdi a fo 'di rheiny Dwi'n cyfri dim i chdi - yr un odd sydd ddim yn rhannu Ond cerddais lawr y bryn yn rhannu fy mreuddwydion Yn tynnu gwallt fy mhen Tynnu gwallt fy mhen A chyfri fy mendithion Un dau tri Mam yn dal y pry Pry wedi marw Mam yn crio'n arw Un dau tri Mam yn dal y pry Pry wedi marw Mam yn crio'n arw Un dau tri Mam yn dal y pry Pry wedi marw Mam yn crio'n arw Un dau tri Mam yn dal y pry Pry wedi marw Mam yn crio'n arw CYTGAN: Mae un ag un yn ddau a chdi a fo 'di rheiny Dwi'n cyfri dim i chdi - yr un odd sydd ddim yn rhannu Ond cerddais lawr y bryn yn rhannu fy mreuddwydion Yn tynnu gwallt fy mhen Tynnu gwallt fy mhen A chyfri fy mendithion Un ag un yn ddau a chdi a fo 'di rheiny Dwi'n cyfri dim i chdi - yr un odd sydd ddim yn rhannu Ond cerddais lawr y bryn yn rhannu fy mreuddwydion Yn tynnu gwallt fy mhen Tynnu gwallt fy mhen A chyfri fy mendithion LYRICS - ENGLISH TRANSLATION: You allow me to believe that you're not interested Then offer me solace, such unfeeling solace I did not respond - I must be a fool But you had messed around with the abacus in my mind You allow me to believe this two-one problem Then you offer an answer, your own answer I can't get my mind around this complex equation You've demolished the Abacus, the Abacus in my heart CHORUS: One and one is two and that is you and him I mean nothing to you -- that odd number that doesn't divide I walked down the hill, sharing my dreams Pulling the hair from my head Pulling the hair from my head And counting my blessings. You allow me to think that something's in the wind But I know in my bones that the answer won't come soon You offer your phone number like pure mathematics And the only thing I need is the answer to my ache You allow me to leave with a kiss on my cheek The "well meet again soon" just doesn't ring a bell The battery went dead in this calculator You've demolished the Abacus, the Abacus in my heart CHORUS: One and one is two and that is you and him I mean nothing to you -- that odd number that doesn't divide I walked down the hill, sharing my dreams Pulling the hair from my head Pulling the hair from my head And counting my blessings. One two three Mum catches the fly When the fly is dead Mum cries One two three Mum catches the fly When the fly is dead Mum cries One two three Mum catches the fly When the fly is dead Mum cries One two three Mum catches the fly When the fly is dead Mum cries CHORUS: One and one is two and that is you and him I mean nothing to you -- that odd number that doesn't divide I walked down the hill, sharing my dreams Pulling the hair from my head Pulling the hair from my head And counting my blessings. One and one is two and that is you and him I mean nothing to you -- that odd number that doesn't divide I walked down the hill, sharing my dreams Pulling the hair from my head Pulling the hair from my head And counting my blessings.

Mental Health

On the PPS programme on Spectrum on Air , I am being joined by Shery Delfani - who each week will be discussing mental health issues.

Please do join us each week -and send any questions or comments to pps@btinternet.com