This week I’m talking the A-word. Autism. Autism is a lifelong developmental condition that affects social interaction, communication skills and how you perceive the world. It is a condition that is widely misunderstood and its spectrum can include people with learning disabilities, asperger syndrome as well as ‘high functioning’ individuals. Autism affects 1 in 100 people in the UK yet there are many misconceptions about the condition which can lead to many people and their families feeling isolated and unsupported.
A feeling that Daisy Chain’s founder, Lesley Hanson, recognised after her own son Jacob was diagnosed with autism. Lesley (quite literally) dreamt of a place where autistic children and their families could go to have fun in a supportive and non-judgemental environment. Determined to build such a place, Lesley and her husband set about rallying friends and family to make their dream a reality. Despite the doubters they were able, with the support of the local community in Tees Valley, to raise enough funds and remarkably open the farm within just a year of the initial idea. Sadly not long after Daisy Chain opened its doors, Lesley died during a routine operation. Staff wondered whether or not to carry on but families were continuing to arrive at the farm needing support and it was obvious what needed to be done. Some 14 years on since opening its doors Daisy Chain now supports around 1,841 families affected by autism in the Tees Valley area.
Much to my delight I spent my first afternoon at Daisy Chain up on the farm with barn manager Michelle, carer April and 13 year old Samir. Samir was diagnosed with autism as a toddler and visits Daisy Chain farm every week. I spent the afternoon as Samir’s assistant, mucking out the shetland ponies. Once on the topic of horses you were unable to stop this initially hesitant chatterbox from talking! I enquired about the snakes in the reptile house, at which Samir’s face lit up and together we bounded over to visit the more exotic animals at the farm. Samir took great delight in trying (and succeeding) to make me jump whilst stroking one of the lizards (not cool dude!) and he reminded me a great deal of my own brothers. After speaking to carer April I was interested to learn how he had arrived as quite a shy boy 8 years ago and that through Daisy Chain his confidence and interaction has grown and grown. Not only did Samir teach me a lot about reptiles but he is living proof that, contrary to misconception, children with autism often have a brilliant sense of humour.
Studies have shown time and time again that with animals in their lives, children’s assertiveness is greater and social skills improve. You only need to spend an afternoon with Daisy Chain to learn that children with autism are highly individual and some will respond better to certain animals than others. Daisy Chain recognise that each of their children is unique and as such their farm has an enormous menagerie of animals that it many ways it would be more accurate to call it a zoo! From pigs to alpacas, skunks, reptiles, ponies, guinea pigs, skinny pigs, goats and chickens, Daisy Chain Farm has it all.
One of the things Daisy Chain does is to support parents as well as children living with autism through their parent support groups. I attended the Links group on Thursday morning and spoke to a number of parents who opened my eyes to matters like the (often) protracted process of getting a diagnosis in the first place; the hurt of watching their child be ostracised by their neurotypical peers; the assumption their child is just naughty because they do not ‘look disabled’ and the tutting, isolation and disapproval that often follows. It is when you hear stories like theirs that you realise just how important and vital a place like Daisy Chain is to parents in providing a place to relax, share stories, strategies and their highs and lows.
After taking the brave decision to locate in a retail park as opposed to a high street, Daisy Chain have launched a retail outlet comprising a cafe, furniture, clothing and household goods shop all under one roof. After opening two years ago they have since moved units and are now three times their original size due to the amount of footfall the shop gets. Donations quite literally spill out in the back and people wait outside in the morning for doors to open, it is certainly a model that other charities would do well to take note of. The superstore serves a number of purposes, firstly as a valuable source of unrestricted funding, secondly as a way of raising awareness in the local community and thirdly, and possibly most importantly, as a centre for training and employability programmes for adults with autism.
On employability, I was shocked to learn that just 32% of autistic adults are in some kind of paid work compared to 47% of disabled people. This demonstrates that there is a significant gap for autistic people in government employment programs and I was therefore intrigued to be spending much of my week with Donna, Hannah, Mary in the charity’s employability program. I met Malcolm one of the students working in the cafe. With hands scrubbed and apron tied, Malcolm showed me the catering ropes and I learnt that he graduated from university with a degree in mathematics. Malcolm and the other students are very much front of house at the superstore and are encouraged to take on people facing tasks to the extent they feel comfortable. Rightly so because he is highly articulate and very perceptive although, like many people with autism, at times he gets a little overwhelmed and suffers with anxiety. Daisy Chain provides an environment where people like Malcolm can learn valuable skills and step outside of their comfort zone in a supported environment. As such Malcolm can take himself off in those frenetic moments and either have some time alone or chat to Hannah or Donna in order to give himself the head space he needs.
There is a preconception that autistic people are all suited to maths and IT because of the recall and attention to detail that is stereotypically associated with the condition (fuelled in part by Hollywood’s ‘Rain Man’). Whilst it may be true that in Malcolm's case he is naturally adept at arithmetic, such preconceptions are dangerous as they ignore the wide variety of skills and interests of people with autism. Daisy Chain’s talent show Autisms Got Talent held last year, in which children and young adults wowed audiences with signing, dancing, magic and comedy, really demonstrates the breadth of talent within this social group.
You may be thinking that talent shows are one thing but paid employment is quite another and we have seen already statistically how difficult this can be for autistic people to obtain. Well during my time with Donna this week, we received some very exciting news in that vein. Chloe*, an employability student with a love of children has taken on the charity’s first placement in a children’s nursery. Chloe has been so successful in the role that staff there have put her forward for an apprenticeship to become a nursery assistant. It is early days in her journey but an exciting step forward and the charity are rightly very proud.
I met a number of other students at the superstore who were less vocal than Malcolm and Ashley I was able to see first hand just how broad a spectrum autism is. However each student can contribute something different and valuable and it is Donna and Hannah’’s lovely job to get to know each person and unlock what that is. As it was put to me rather poignantly this week, sometimes people don’t speak or appear to do very much but that doesn’t mean they don’t have things they want to say or do.
On my final day I spent time back at the farm with Lucy, a young girl of 12 diagnosed with both downs syndrome and autism. Lucy receives a bespoke education programme at Daisy Chain, teaching her a mixture of skills like ironing, shopping, cooking and of course soft play. When Lucy first attended Daisy Chain she was very shy but wandering around the building with her she greets staff confidently by name and is certainly a popular lady with everyone around the farm! Lucy has got a fantastic memory for names and was boldly effecting introductions to everyone that happened to wander passed us by exclaiming “hello, this is Alice!”. I could do with Lucy on the road as a companion! You should not let her initial shyness fool you because Lucy is very very cheeky, she loves spiders and we had a lot of giggles pretending to throw them at each other as she guided me by hand around the soft play area. The play area was somewhere Lucy was initially reluctant to go, being a bit too hectic and noisy for her, now she leaps about quite happily and loves an audience for her super speedy skills on the slide.
Lucy is very considerate, warning me gently to be careful with the pans as I removed them from the hob. Lucy has a natural curiosity about the world which is very endearing and the depth of her questions are developing, at times leaving Donna and I quite stumped and having to google answers to things like what centipedes and worms eat! Lucy began our afternoon by exclaiming “no hug for Alice” but by the end of the session I was delighted to receive three, helped in part by my ‘green cat furry’ cardigan! Daisy Chain provide unconditional, non-judgemental care and support to children and you can see that in the right environment barriers dissolve, friendships develop and interactions can happen in the most gentle and genuinely beautiful ways.
This charity does so much to provide hope and happiness to families affected by autism and my thanks in particular to the lovely Katy Carmen for organising such a stupendous week for me and for everyone at Daisy Chain for making me feel so welcome.
It is the biggest misconception of all that autistic people can’t form meaningful relationships, in fact in many ways I have seen this week that an autistic person will make the best friend you could ever have. I have been privileged to witness children at play and students on placement encouraging and supporting one another with no ulterior motives, limited sense of oneupmanship and no white lies but with a refreshing and unabashed honesty. In life we celebrate openness and honesty as virtues and merits but in practice absolute honesty can lead us to becoming exposed and disliked, perhaps as a society we need to recognise autism not as a condition but merely as a different way of being that we could all learn a little from.
P.S. Are you in the Tees Valley area? This charity needs kind people like you to volunteer. If you are interested in finding out more please take a look here.
*name changed to protect identity