Unity in Diversity: Embracing Loneliness Awareness Week 11 June 2024
Loneliness Awareness Week 2024 gives us a chance to reflect on the impact of loneliness and isolation in ethnic minority communities in the UK, especially if they also experience predjudice relating to autism, neurodivergence or other invisible health conditions.
Imagine living in a world where social interactions are a constant source of anxiety, where everyday conversations feel like navigating a minefield, and where the simplest of tasks can become overwhelming challenges. For many individuals on the autism spectrum, this is a harsh reality. Isolation and limited loneliness awareness in neurodivergent communities can be debilitating companions, making it difficult to form meaningful connections with others.
But what if there was a way to break down these barriers and create a sense of community and belonging? In this blog post, we’ll explore the struggles of isolation in the autistic community and highlight the importance of fostering connections, understanding, and acceptance. Through personal stories, expert insights and innovative strategies, we’ll delve into the ways in which we can work together to build bridges, not barriers, and create a more inclusive and supportive environment for all.
Autism, Isolation & Loneliness Awareness in ethnic minority communities in the UK.
In the UK, the intersection of autism, isolation and loneliness awareness can be particularly complex and nuanced for individuals from ethnic minority communities. Cultural and linguistic barriers can exacerbate the sense of disconnection and isolation that many autistic individuals already experience.
I have recently been speaking with people from the Chinese Asociation in Wales who explain that families may be less likely to seek out diagnoses of autism or access support services due to cultural stigma and a lack of understanding of the condition. This leaves children isolated from their peers, and parents, usually the mother, socially isolated from what would otherwise be her support group.
Language barriers can also delay access to medical and social services for ethnic minorities in the UK whose first language is not English. This affects both the parents and the child because the whole family is unable to experience a sense of belonging, which is so important for self-worth and self-actualisation. It is situations such as this that we need to remember during Loneliness Awareness Week, not just the people who immediately spring to mind such as the elderly who live alone.
These barriers can lead to a delay in receiving a diagnosis, which can in turn lead to developmental delays, reduce access to funding for education and isolate families from others who are in the same situation.
The lack of representation and diversity in autism awareness campaigns and support services can make it difficult for individuals from ethnic minority communities to see themselves reflected and feel included. When I competed an introductory course in Illustration and Design, I chose to focus on Medical Illustration and I was shocked to learn just how many leaflets there are that only contain white-skinned people, even when the content may have been more relevant to non-white patients.
I believe it is in everyone’s interests to acknowledge and address the unique challenges faced by autistic individuals from ethnic minority communities in the UK, and to work towards creating a more inclusive and supportive environment that fosters connection and understanding. Programmes such as the Find Me Project, organized by the Chinese in Wales Association are pivotal to autism and loneliness awareness, becuse they reach out to families who are affected but who may feel reticent about coming forward.
As a practitioner who is half-Jamaican, I want to ensure that afro-Caribbean children are not being marginalized because of their skin colour and stereo-typical assumptions, when in fact they may be neurodivergent and in need of understanding and support, not judgement and recrimination.
Loneliness Awareness vs the Challenges of Social Interaction in the Autistic Community
For individuals on the autism spectrum, social interactions can be a daunting and overwhelming experience. However, it is also true to say that there are a great many people with autism who thrive on having access to social situations and need company, but also need to be able to back out of it to ‘re-group’.
However, there are many forms of autism, each with different social needs. For example, a child with Pathological Demand Avoidance (PDA) will be outwardly extremely sociable and will do very well in groups, usually being at the centre of attention trying to orchestrate (control) their surroundings. If, however, they feel they are losing control, they may well suffer a ‘meltdown’. This is a form of panic attack, but is seldom seen as such. Many parents who are in public with a child who has a ‘meltdown’ feel embarrassed, judged and helpless. The lack of understanding and compassion in society in general can lead to tremendous isolation and loneliness.
Linguistic Isolation
My first undergraduate degree was in Modern Languages, and having lived in several countries, I know how hard it can be to understand people’s intentions when you are in a different country or culture. The complexities of nonverbal cues, unwritten social rules, and the constant need to adapt to changing situations can be exhausting and anxiety-provoking for anyone abroad, let alone someone with autism.
For anyone who does not understand the language of people around them, for whatever reason, simple conversations can feel like navigating a minefield. There is the risk of misinterpreting tone, facial expressions, or body language. Even the most well-intentioned interactions can be fraught with misunderstandings, leading to feelings of frustration, isolation, and disconnection. What this highlights to me is that ‘loneliness awareness’ is not necessrily about being ‘alone’. Sometimes people can feel lonely in a crowd.
I recall being in Greece and at the time I could understand enough of my surroundings in a restaurant to know that the group of people I was with were talking about me and my attempts to learn Greek, but I didn’t understand enough to know that they were sympathising with me. The outcome was that I could see them getting very animated, I assumed they were angry with me and so I unceremoniously left the restaurant! It turns out that Greek people, like Italians and Spanish, use their arms a lot when they talk, they raise their voices and talk over one another. That was enough for me to be confused, and (as far as I know) I am not neurodivergent! For someone with autism who lives in a ‘foreign’ country, the world must indeed be a very confusing and overwhelming place!
Social Isolation
The struggle to initiate and maintain relationships can be a significant barrier to forming meaningful connections, leaving many individuals with autism feeling like they are on the outside looking in. Again, loneliness awareness is not necessarily about being physically alone, it can also be a state of mind.
Over time, social isolation can become a pervasive and debilitating reality, further exacerbating the challenges of autism and hindering overall well-being. Linguistic isolation, cultural isolation, geographical isolation, social isolation, economic isolation are just some of the many aspects we need to think about during Loneliness Awarness Week.
Supporting families affected by Autism
The journey through autism is not one that is undertaken alone. Behind every individual on the autism spectrum is a family that is equally affected by the diagnosis. Siblings, parents, and care-givers all play a vital role in supporting their loved ones, but often, they too can feel isolated and overwhelmed. This is why it is essential to recognize that supporting families affected by autism is a crucial step in breaking down the barriers that exist within the autistic community.
By providing resources, education, and a sense of community, we can empower these families to become advocates and allies for their loved ones. This can be achieved through support groups, where families can connect with others who are going through similar experiences, sharing their stories, and offering words of encouragement.
Launch of Nourishing Neurodiversity Online Community
It is for this reason that in celebration of Loneliness Awareness Week, I have set up and funded the Barefoot Medicine Online Community that I have called Nourishing Neurodiversity. There is a Neurodiversity Lounge for people who are neurodivergent or autistic to access online and make friends. I have been told that many autistic people have a particular way of speaking that neurotypical people may take offence at because it is ‘blunt’ and this person said she set up a facebook group that is just for them. I think this is a great idea, so have created a co-working space for any of those friends to be able to see each other and maybe set up a regular meeting.
I have also created and funded a co-working space for parents of children with regressive autism so they can meet up and get to know one-another, share stories and offer peer support.
Home Education for Children with Regressive Autism
Another space I have created was following an Australian documentary that I saw, which really inspired me. It was a harrowing story of lots of families whose children were labelled as ‘school refusal’ but whose parents got together and set up the “Can’t not Won’t” campaign. All these families ended up home-educating their children because they could not put them through the stress of being forced to go to school every day.
The interesting part, however, is that the older children were able to explain very eloaquently that they did want to learn, they just did not like the ’zoo’ of secondary education! I had to laugh at their honesty because I couldn’t’ agree more! So inspired by the programme – and the boy who said that – I decided to set up a co-working classroom for 6 people with a pomodoro clock. My thinking is that maybe 2 families could get together in a co-working space, then work simultaneously but from their own homes on one project, then after 25 minute,s they could move over to the café or chillout area for 5 minutes, then go back into their online classroom. I have no idea whether it will ever be used, but it is up and running and free for anyone to try out here.
Solutions to help Overcome Loneliness & Isolation
Technology can sometimes play a vital role in reducing isolation in the autistic community.
At the moment I am funding the online communities form the commission from my Juice Plus franchise. The benefits of 30 varieties of fruit and vegetables in a capsule has really helped many of the adults and children that I work with. What’s more is that the Juice Plus company funds free supplements for one child per adult who orders the capsules via the Healthy Starts for Families study.
By supporting families in whatever small way we can, we can create a ripple effect of love, acceptance, and understanding that can have a profound impact on the entire autistic community.
It is my hope that by providing access to these resources and opportunities, we can help individuals on the autism spectrum build meaningful relationships, develop a sense of community, and ultimately, overcome the debilitating effects of isolation. Likewise, I believe that supporting the rest of the family, the siblings and parents of children with autism, these platforms will help reduce isolation experienced by other members of the family as well. It is for this reason that I have decided to launch the online community during Loneliness Awareness Week 2024.
Economic and Professional Isolation and Loneliness
Another form of isolation is economic and professional. I have been shocked to learn that a staggering 80% of adults diagnosed with autism are unemployed! Of course this is a complex issue that has been over-simplified by such reductionist statistics, but it nonetheless does make a point.
For parents with a child who has regressive autism, it is often the case that one or other parent may have to give up their job either to look after their child or to home-educate their child. This clearly has tremendous financial implications for the family and an alternative source of income is needed urgently for this to even be an option. The stress from such decisions can isolate families, cause division in the family and can lead to sleepless nights and poor health through stress, worry and anxiety.
As I mentioned regarding the Nourishing Neurodiversity online community, I have been involved with the Juice Plus franchise for some 8 years now and I have seen people thrive socially and financially who have had limited access to conventional employment. The franchise certainly helped me when I was a single mum and needed to manage my work around my children, school, homework etc.
For this reason, I welcome anyone who would be interested in running their own franchise to get in touch and I will support you in building your own business that you can pick up and put down depending upon how you are feeling. There is no pressure and no expectation of you. I will teach you all the skills you need. The franchise is available in 26 countries, so if you live in one of those countries, I will be able to help you earn an income from home. Again, the commissions I earn from selling these product and also from teaching others to do the same, goes right back into financing the online community and making it free of charge to the users.
In summary, I am very glad that there is such a thing as Loneliness Awareness Week because, ironically, it is one of the biggest issues society faces in this era of ‘mass communication’ and it is an even bigger issue for neurodiverse families, particularly those who are part of the ethnic minority in the society in which they live.
