AB UK: A charity that began at home

Autism is a spectrum condition which has a wide range of effects. People diagnosed with ASD (Autism Spectrum Disorder) can have their lives impacted in many different ways, to greater or lesser degrees.

This means people with ASD have varying support needs, high-functioning autism is a term often used when referring to people with ASD who can speak, read, write, and handle basic life skills like eating and getting dressed. However, one third of autistic people also have a learning disability, and these can vary widely from being fairly independent, whilst others may require lifelong care and specialist support.

Autistic people can also display a wide disparate between their strengths and weaknesses, they could be a brilliant mathematician but be unable to complete certain simple tasks and struggle to function in everyday society. This ‘Spikey Profile’ was famously displayed in Dustin Hoffman’s portrayal of  Raymond Babbitt in Rain Man, Raymond displayed characteristics of someone who was Autism Savant, meaning he had ASD but had a remarkable talent in one or more areas, in his case this was recall and making large mental calculations, but it could be music, art or any number of skills.

Raymond’s story and those of public figures with autism are great for bringing autism out of the shadows and raising the awareness, but they are also part of the problem. Autism is such a wide spectrum, but these stories only tell part of the narrative. People with lower-functioning forms of autism can have severe sensory, cognitive, physical and social dysfunction problems. A diagnosis of this kind is devastating for a family, and can leave parents feeling isolated and alone, with little in the way of support or guidance.

Back in January 2021 this was the position Cordelia and Amerjit Singh found themselves in, when their beautiful son, Beaudon, was diagnosed with a severe form of ASD. Feeling alone and still shocked by the impact of the diagnosis, they surrounded themselves with others in similar situations and gained support and knowledge from families that had made very similar journeys.

It was this journey, and the support and non-judgemental environment that it had formed, that provided the inspiration for AB UK, with the aim of providing regional support to families whose lives have been impacted by the diagnosis of a loved one and all stress, trauma, and frustration involved in dealing with it on a day-to-day basis.

Cordelia commented: “Our goal has been to create an organisation which gives wrap-around support, offering help, advice, and guidance for families and children with additional daily care needs. Some structure the families can rely on when they need it most”.

In April 2021 AB UK held their first fundraising event, predominately to raise awareness but also to help provide the support that is desperately needed. It was a great success as Cordelia said,” We couldn’t believe the support we got from the local community, it gave us real momentum and the drive to take things forwards”.

The fundraiser was a big turning point for AB UK and on the back of its success, Cordelia set up a playgroup and parent support group. The number of families attending has grown week on week and the group is benefiting from the growing community facilitated by AB UK.

Amerjit found the lack support for a parent with an ASD child particularly challenging and commented on the need for support in the region: “There has been a real dearth of support for people with ASD diagnosis, especially on the severe scale, which is not discussed in the public arena as it should be. The region needs community support for ASD children and their families, the problem seems to be on the increase, and it is just not being addressed at a regional or national level”.

He continued: “As parents of a child we understand the problems families face, the sleepless nights and the stress that worrying about your child and the effects on the rest of the family it can have. We’d very much like to make a difference”.

Seeing the progression of children, the growth in confidence and the comfort they find in the group has been a great inspiration for Cordelia and Amerjit. Cordelia commented: “Whilst it is far from easy caring for a child with severe ASD it isn’t all doom and gloom, and it is a delight to see Beaudon and the other children happy and feeling safe within our community. I believe AB UK can make a big difference by supporting ASD families and it’s heart-warming to see attendance to group events and the community grow.”

Cordelia and Amerjit have been overwhelmed with the help they have received from family, friends and the general public generously giving up their time to support the AB UK community. AB UK have now held a number of fundraising and awareness events, including an Autism Blue Ball in October 2021, which was attended by over 100 people who enjoyed a three-course dinner and dance with a casino, a very exciting auction and lots of raffle prizes.

Amerjit commented: “Events like this and the themed Halloween, Christmas parties, and other awareness events wouldn’t be possible without the backing and support we have received, and we are very grateful to everyone for helping us make AB UK possible”.

Cordelia and Amerjit are hoping to continue to grow and develop AB UK to help an increasing number of families affected by ASD. Plans include a permanent venue which would be customised to meet the needs of ASD children and their families. This would be used to provide ‘stay and play’ support before and after school, at weekends and in the school holidays and would become the focal point for the AB UK community in the area.

Cordelia concluded: “It is still early days for AB UK, but Amerjit and I are convinced with the level of support and interest we have had that AB UK can grow and make a real difference to ASD families now and in the future.”