AUTISTICA TURING CITIZEN SCIENCE NEWSLETTER
Today we are spotlighting Lucinda Marsden.
Lucinda is an AutSPACEs collaborator, who has given valuable insights to the project since it’s inception. She has been an important advocate for diverse inclusion and fair remuneration for participatory scientists.
I am the mother of an autistic young person with complex needs.
I promote acceptance and awareness of individuals, families, and caregivers affected by severe forms of autism by giving a voice to their realities and needs.
They are a vulnerable, growing and overshadowed population and there are huge gaps in policy and services and the special attention they require.
I feel my job is to listen and then give ALL autistic people a voice. I actively seek out and take part in focus groups and discussion sessions where I can share my lived experience and ideas for how to make autism research serve everyone, not just the easiest to reach.
I strongly advocate for diverse inclusion and fair remuneration for autistic people and caregivers involved in autism research. Otherwise, charities and researchers risk discriminating against the very groups they are trying to help, whom, in many cases, cannot work and as a result live below the poverty line. No one works for nothing and nor should caregivers and autistic people. Our knowledge is worth something.
I was asked by the Head of Priors Court school (http://www.priorscourt.org.uk/) to join their research board.
I presented with the Alan Turing Institute at CogEx.
I am an @womenofyear alumna.
In my spare time, I am a writer of fiction and non-fiction and I like to run (slowly) and read a lot – not at the same time.
Lastly, I love this recent Twitter quote from father, director, writer and teacher, Stephen Unwin (@RoseUnwin)
“In our championing of the many splendid things that so many learning disabled and / or neurodivergent people can do, we must be careful not to marginalise or forget those who can do less.”
Well done and thank you to all his sponsors! So far over £2000 raised ( including gift aid).
Long time supporter of the Fred Foundation, Justin Rock, is running the Brighton Half Marathon on the 26th February. Justin has raised funds for us before – cycling to Paris and various treks. Why is he choosing to support us? “Duff introduced the charity to me which I know means a lot to him and also to my close friends who’ve heard about Duff’s experiences getting support for his autistic child who has complex needs. Every challenge we’ve done at the company has been for the Fred Foundation. We know that every penny that we raise goes towards this brilliant cause, helping the numerous families supported by The Fred Foundation”
Please support us by sponsoring Justin.
https://www.justgiving.com/fundraising/justin-rock2?utm_source=copyLink&utm_medium=fundraising&utm_content=justin-rock2&utm_campaign=pfp-share&utm_term=552e2ed5c41b4f139baa32fcf1e71c59
The Fred Foundation is a tiny charity that gives grants to families towards running accredited Verbal Behaviour programs such as a Dr Patrick McGreevy Ph.D, BCBA-D VB type programs that teach functional language and life skills in the natural environment and are driven solely by the individual child’s motivations. (NOT aversive Lovaas style ABA programs – rigid and cruel – taking place in one room etc. Please do not ask us to help fund these types of programs).
Due to shortage of funds we are giving priority to families who are working towards a Special Educational Needs Tribunal to achieve Local Authority funding for their child. If you live in the UK and have an autistic child with complex needs and have never received funds from us and are appealing for specialist provision for your child, then please email us on thefredfoundation@gmail.com
‘Thank you from the bottom of my heart. Your charity helped my son. He is verbal and excelling in life. Your funding helped me win a tribunal to give him the support he needed. Thank you!!!’ ANON
‘We will never forget how much your charity helped our J xx’
I first ran the Royal Parks Half for The Fred Foundation 10 years ago and this year I’ll be doing it again. The course hasn’t got any shorter and I don’t seem to be any younger but I’m still proud to be running for The Fred.
The charity, inspired by my son Fred, has been supporting autistic children with complex needs and their families since 2007.
It helps fund education programmes that allow autistic children with complex needs to reach their potential through individualised, specialised programmes that match their needs instead of a ‘one size fits all’ approach. Education is the only commonly accepted intervention for autistic children with complex needs and in every case, the early years are critical to finding that child again and unlocking their world.
The recent pandemic has highlighted, with sometimes heartbreaking results, how lack of the right support can cause immense suffering, not only to children with complex autism, but also their families.
Please donate what you can here – it will help The Fred Foundation and also inspire me to get round!
THANK YOU!
Donating through JustGiving is simple, fast and totally
secure. Once you donate, they’ll send your money directly to The Fred Foundation and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer.
