Content note: This episode includes discussion of mental health deterioration, detention under the Mental Health Act and the impact of the COVID-19 pandemic on Ewen and his family.

In this episode, we are joined by Ruby, the creator of @ewenandme, to talk about her experience of growing up alongside her older brother, Ewen.

Ewen is 24, autistic and non-speaking, with significant support needs. To Ruby, however, he has always simply been Ewen — her big brother, her best friend and one of the most important people in her life.

Ruby explains why she started the Ewen and Me Instagram account in 2022. Born partly from frustration at the lack of understanding surrounding siblings of disabled people, the account gives Ruby a space to share both the joy and the reality of their relationship.

​Ruby talks openly about growing up “in Ewen’s shadow”, sometimes feeling left out and learning from an early age to compromise and adapt around his needs. Although her parents worked hard to ensure that Ruby had her own identity and she never felt let down by them, family life inevitably required sacrifices.

We also discuss the closeness Ruby and Ewen share. Ruby can instinctively recognise when Ewen is happy and often understands him without words, but it can be much harder to know what he wants or needs. Ewen previously communicated using PECS — the Picture Exchange Communication System — but has since become increasingly reliant on prompts and more isolated within himself. Ruby describes the family’s wish for him to be able to communicate more independently.

When Ewen was ten, he began attending a residential school, returning home at weekends. He later moved into residential care. During the COVID-19 pandemic, separation from his family had a devastating effect on him. Ruby speaks movingly about the deterioration in Ewen’s mental health, his detention under the Mental Health Act and the enormous toll this period took on the whole family.

Ewen now lives in his own home with a dedicated care team, somewhere Ruby says he loves.

Ruby also reflects on what she needed from the people around her while growing up. School became a vital source of support, particularly one teacher who gave her the time, care and acknowledgement she needed. She explains how isolating life can feel for siblings and why a friend, teacher or trusted adult simply recognising what is happening can make a huge difference.

We hear about some of the things Ruby missed out on or had to leave early because Ewen needed her, from holidays with friends to nights out and even a date. Ruby explains that, in some ways, becoming an adult sibling has been harder than being Ewen’s little sister, as questions about responsibility, care and the future become more prominent.

Her experiences have also shaped her career. Ruby now works in a caring role within the community and supports Jude, the son of the creator of @storiesaboutautism, with whom she has developed a close and natural friendship. She feels that she often connects more easily with neurodivergent people than with neurotypical people.

Ruby speaks honestly about sharing the harder parts of life online and dealing with cruel comments from people who may feel uncomfortable seeing the full reality of disability and family life. Although her relationship with Ewen is beautiful and full of love, she is clear that it can also be incredibly difficult - and that both things can be true at once.

Her advice to other siblings is not to be too hard on themselves. Siblings should recognise what they are carrying, find someone they can trust and give themselves permission to talk honestly about their worries and feelings.

As Ruby says, sometimes the only way to get through something is simply to keep going - and for her, the motivation has always been Ewen.

Follow us:

Instagram: @bespokefamily

Facebook: @bespokefamily

Follow Ruby and Ewen:

Instagram: @ewenandme

Further support

Sibs is the UK charity supporting brothers and sisters of disabled children and adults. Visit: sibs.org.uk

For information about a Bespoke Family Parent Consultation, click here

Explore our downloadable Your Guide to… webinars, covering topics including preparing for and welcoming your newborn, behaviour, toilet training and sleep - click here

This podcast is produced by Decibelle Creative.