“It was word of mouth that led us to finding The Fred Foundation, We’ve been struggling immensely with providing our child with the early intervention that they really needed. Early intervention has been proven essential time and time again by science and modern medicine.

In the UK, getting the right support for an autistic child with profound high support needs often feels like a constant, uphill battle against a system that doesn’t have the varied resources to support children with our child’s type of ASD. Feeling like soldiers in an endless life-time long battle, we are fighting local authorities for the most basic provisions while watching our child missing out on early intervention.

The Fred Foundation’s immediate positive response to support with funding sessions felt like someone out there actually got it, we didn’t need to explain our child’s much-needed support because it felt like they already knew what we were about to say!

The progress has been incredible! But more than that, it’s been eye-opening. The play-based therapy sessions helped us understand some of our 4-year old’s “hidden” needs that directly impacted his ability to learn and develop. We aren’t just guessing anymore, we actually understand more about his needs and there has been meaningful development, beyond the child-minding service which is what a nursery and school are for him without the right support.

To the Fred Foundation donors: you are not just donating to a charity, you are giving little humans like our child the opportunity to make real progress. You are providing families like ours with the help we can’t get anywhere else, and we are so deeply grateful.”

14 May 2026

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.”