What autism means in my world (a very short snapshot)
Since we got Fynn’s diagnosis of autism, I have immersed myself in trying to find out more about how the brain works, and what makes us all tick. On that journey I have discovered a lot about myself, (which I will talk about in another blog). I understand that sometimes, Fynn’s perception of the world and the stimulation it provides can be stressful and overwhelming for him. I give more thought than ever to potential stressors, like light, sounds, space, people etc. These are all things that I am constantly considering. (Oh my goodness I have had to work so hard at abandoning the thought that what other people think is important to me or my families existence, I will forever be working on this!) I have had to learn that if Fynn is stressed about something, his stressor may be something he can’t articulate. So I need to play detective and advocate – it’s a good thing I enjoyed Cluedo growing up!
When stressed or pre-meltdown, Fynn becomes very vocal, at people, largely people who don’t know his journey. I have always believed that it is someone’s environment that limits them far more than a diagnosis ever could (no matter what that may be). I don’t believe that someone who experience sensory overload or other stressors should ever change in any way for anyone else. This world needs to be more accommodating and celebratory of neurodivergent people, people who use wheelchairs, people who need mobility aids, those who are visually impaired, the list is endless, and I exclude no one. I am however working with my son to build his ability to detect his own stress levels, encouraging his growth so that he is emotionally aware, and for him to have coping strategies that enable him to deal with these emotions. At the moment, our favourite is counting backwards from 10, slowly and calmly and then talking through what his stressor is (when he’s ok to do that).
“In learning about autism, I have learned what the world should be. I heard recently in a training course run by Ambitious about Autism that good autism practice is good practice for everyone”.
I accept with an open heart and mind that my days of learning will never end, nor do I want them to. In learning about autism, I have learned what the world should be. I heard recently in a training course run by Ambitious about Autism that good autism practice is good practice for everyone.
Clearer instructions? Yes please! Knowing what to expect? Definitely! Somewhere to chill out if you’re overwhelmed? Where have you been all my life! (I write this as a woman in her 40s who has just started the assessment process, and I will let you in on my journey so far in another blog).
A world leading centre
“I believe the work they are doing in neurodiversity will be a beacon for others, and a discussion point of paramount importance”.
During my visit to Life Science Centre (LSC) I met with David Jones, Life’s Community Liaison Manager. For the past three years David has worked closely with the North East Autism Society (NEAS) – in particular Kerrie Highcock, the Family Development Manager for the group – to learn first-hand what it means to be autistic, and how that can influence a person’s perception of their environment.
Using this knowledge, the staff at the LSC have worked to alter the environment to make it more accessible and inclusive to neurodivergent people. In saying this, a desire to place people at the centre of what they do has underpinned their work since their start in 2000. They have, from the point of their creation, been a world-leading, forward thinking centre, and I believe the work they are doing in neurodiversity will be a beacon for others, and a discussion point of paramount importance. ‘We do this, we learned this, we asked this….. what is your experience? Let’s start a discussion about these things’. Nothing can start without a chat, can it? However you communicate, it is about listening, and then using what you heard to get the old grey matter working, and continuing to listen.
Decisions based on experiences
Listening is what David and his team have always done (and continue to do). A while ago, Kerrie and the people she worked with spent time at the Science Centre. David recalled how a chair had scraped along the floor making that resounding screeching noise that takes you back to squeaking chalk on a chalk board. One young man recoiled at the noise. David could see his stress levels were up, and he became aware that as others relaxed afterwards, their shoulders dropping, this young gentleman remained in a stress response, body tense and clearly uncomfortable. (Just a side note, when someone is in this state, they’re very unlikely to take on board information, have a conversation, or be able to make decisions, it quite literally affects everything).
Kerrie suggested he put his headphones on, which he did, it had a positive result. He later asked David if he wanted to try them on and he did. David could experience the muted sounds around him with a protective barrier. David explained it meant a great deal to him that this gent had offered him his ear defenders to share this experience. So using what they now knew about the chairs and the floor, they replaced their floor surfaces with ones that are much quieter when chairs are dragged along, and they replaced the chairs too. The result; a much quieter environment. Yes the odd chair squeek but nothing compared to what it used to be. The floors and walls aren’t fussy either, it is a large space (some neurodivergent people like to be close to a wall then there is lots of space and the chance to do this too).
Listening to experiences is the reason we have teamed up with Durham University to carry out nationwide research into what disabled and neurodivergent people find easy and not-so-easy about going out and accessing community resources. Be sure to check in with us from time to time as we review and analyse the data we receive.
One of our interns, Georgie has written an incredible blog detailing her and others’ experiences of sensory overload, have a read: https://ericknows.co.uk/sensory-overload-speaking-from-an-autistic-perspective/ Such experiences are not uncommon and below you can read how the LSC are working to address these issues.
Pre-covid, The Life Science Centre ran sensory Sundays, one day per month where the centre was quieter with dimmed lights and fewer people. This was so those who are prone to sensory overload or have Sensory Processing Disorder (SPD) can come and enjoy the centre with a reduced risk of potential sensory overload. This is also wonderful practice for people who have dementia too, as environments can easily provide too much stimulation causing stress and a reluctance to go out. There are plans to bring this back in the near future. They are also aware of the need for a sensory room. At present they have a first aid room, which is not normally occupied and available for this purpose. Additionally, they have plans to create an inclusion room in the future, which will provide a safe, calming space for people experiencing sensory overload. This space could also be used for people who need to pray, or require a quiet place.
A sensory risk assessment (to look at what can cause sensory overload and ways to minimise the risk of this) is also in the plans and will most probably help underpin all the amazing continuing work they are doing. Sensory processing disorder is very common among autistic people, it can exist on it’s own too. However this condition can make people very sensitive to their environments, it can make people more at risk of meltdowns and shutdowns. So considering the environment and reducing risk where possible is a really positive step to take.
Fynn is a great example of how differently the same sensations can be experienced by many others. There is a part of the Science Centre where you can smell what it is like on one of the space stations! Fynn’s response was suitably animated; “urgh what is that??!!” He uses the same beautiful articulation to describe my cooking.
Plans for the future
David told me about unconscious bias training in the pipeline for the not-too-distant future. They will also be bringing back ‘Sensory Sundays’ in the future, allowing people with particular sensory needs to enjoy the centre, when it is a little quieter, less bright and more ideal for people who experience anxiety when they are around a lot of other people. He explained his knowledge and understanding is always growing and he shares this with his staff. It is easy to see how his love of the work and warmth towards people is infectious and would positively impact others working at the Centre. I found everyone we encountered incredibly supportive. Fynn brought with him his favourite fossil, found on a recent beach trip. David rapidly introduced us to Neil, who was knowledgeable and had connections in the Geology world, within minutes we had an answer to what the probable origin of the fossil was. Neil then showed us the oldest piece of rock to ever be found on planet earth. It was moon rock, part of an asteroid after it hit earth (many, many years ago). The rock was older than anything indigenous to our planet. It looked distinctly underwhelming, like something you might find while walking the dog, and yet completely mind blowing, and perspective altering all in the same moment. I will think about this the next time I have to do a tax return.
Sensory bags and visual stories
Fynn was provided with a sensory bag, full of gadgets and gizmos to take off into a quiet spot and play with should his environment become too overwhelming, or if he just fancied it! These are available to anyone who needs them. In this bag you will also find a visual stories booklet, it covers everything (that I can think of) to expect before and when you arrive at the LSC. Life’s visual story can also be downloaded via the accessibility part of its website. Knowing what to expect can help reduce anxiety in people, especially those who are neurodivergent. It also provides a memory aid, making it a great tool for someone who has problems with their memory, such as those with dementia or a traumatic brain injury. The visual stories also feature a sensory key. So if you are particularly averse to, or drawn to certain sensory stimuli, you can factor this in.
I am sure Fynn took the invitation to look through the sensory bag as cart blanche to test-to-destruction the squishy, tactile, blob-ish object that lights up when it is smacked off a hard surface using hulk style force (in Fynn’s case, the floor). It survived. Just. Fortunately, the booklet remained unharmed. They are single use too, obviously respective of current infection control guidelines.
The open plan nature of the Science Centre makes it easy to navigate. This is something I particularly like, as I’m prone to losing things, like myself and keys. There are also ramps and lifts to get to all areas. It feels spacious, like those ramps and lifts belong, and inspired the whole feel of the building, not like they were an afterthought and fitted retrospectively. I randomly met a gentleman who was there with his 5 year old son, who is a wheelchair user. I asked him and his son about their experience and the dad was very positive. He explained they had left his powered wheelchair at home and brought his manual one, because they took the metro and it was easier to navigate this with his manual chair. He explained that everything in the centre had been straight-forward to access and actually the most stressful part of their day had been using the metro. (I am thinking those gaps can be a bit tricky, and if I were a wheelchair user, I would be very wary about tackling them on my own. If you use a wheelchair and the metro, please let us know your thoughts!)
Fynn was excited to play with the rolling disc display that hypnotically propels a disc of your choice into its own undulation before shooting it off into a different direction. He kept going back to this as though pulled by a magnet.
Building, making, creating
At the Centre, there is a space dedicated to making and creating. The activities are carefully thought out and you have all the materials you need at your own workstation. At the far end of the room there is the holy grail of all things craft; a glue gun. This is exciting on several levels. The measure of parental joy is palpable when a creative space is well stocked and laid out. You can breathe as you remember that the glue gun you are about to use isn’t oozing over your carpet, and the planning and forethought behind the activity has been done. Stress-free creation. Bliss.
Ysmay was very supportive, encouraging and didn’t bat an eyelid when Fynn became very upset at the thought of having to go home. Ysmay, thank you.
On the week we visited you could build a windmill. We threw ourselves in, Fynn loved it and is a dab hand with the scissors. I assisted, I always wanted to be an architect when I was little. I think you can tell.
What does the wheelchair accessible toilet look like I hear you ask?
My curiosity was around the wheelchair accessible toilet and hoist. David said the staff at the main desk would be happy to oblige me, and they really were. I spent 10 happy minutes playing with the plinth and the hoist, (my expertise in a previous work-life).
The Life Science Centre also have slings to use, although I didn’t see these. So if you do take your own, just check the attachments are compatible. This ceiling track hoist has oxford-style loop attachments (as you can see in this picture). It is also electric-powered-height-adjustable. The hoist is an H frame style hoist so you can position the hoist pretty much anywhere within those 2 joists.
This picture indicates the maximum working weight capacity of the hoist and plinth (changing bench).
The plinth has a black knob to the rear and the right of the plinth (pictured left). If you pull this (you need to be quite firm with it), it will deploy the release mechanism and you can lower the plinth.
The loo has two grab rails for transferring on and off the toilet, the space in the toilet would either mean a head-on or left-handed transfer. There is also a baby/young toddler changing mat to the right of the toilet. I was informed that the toilet is 3 inches short of being able to qualify as a changing places location. This website shows all the changing places toilets in the UK.
What really takes away a person’s abilities?
“We are sharers of our reality, and in sharing, we debunk myths that previously may have been the only thing on which others built their understanding”.
Alexander Den Hejfer said “When a flower doesn’t bloom, you fix the environment in which it grows, not the flower.”
Reading some of this may lead people to think ‘this is all fine and dandy but I simply can’t afford to change my floors’. And to that I would gently say:
- Start where you are
- Do what is realistic for you and your business
- The ideas raised in this blog aren’t meant to intimidate or overwhelm, they are there to start a discussion and raise awareness. If in ‘X’ number of years when you come to decorate/change the floor, keep in mind that a bit of thought can make your venue more accessible and inclusive
During our chat David and I touched on something that has been very close to my heart for the last 20 years; the understanding that it is not someone’s physical, cognitive or emotional functioning that means disability, it is their environment and sometimes the limiting attitudes of others that remove peoples abilities.
David emulated this with his belief that with a constant need for knowledge and furthering his understanding, he would continue to share this with others. Not in a ‘we know best’ kind of way, but in a ‘let’s chat about this so we can all improve’ kind of way. That humility and quiet compassion is something that spoke to me from all the staff I encountered that day. It is what will drive the LSC forward, not just in being at the forefront of scientific developments, but understanding that we all experience the world in different ways, and the best way is for us all to do be able to do that. The best way we can accommodate everyone is to listen to people, the only ones who can give insight into the topics raised in this blog are those with 1st hand experience. Most of my journey of discovery has started with ‘can I ask you a question?’. The answer has always been yes, because the person I am speaking with knows I genuinely want to know what their experience has been. People want their experiences to be heard, I know I want mine to be. We are sharers of our reality, and in sharing, we debunk myths that previously may have been the only thing on which others built their understanding. And that’s not really understanding.
I would like to thank the Life Science Centre, not only for accommodating us and David for making the time to discuss with me the ways in which they are accommodating needs, but also Helen for some of the pictures used in this blog. Thanks also goes to Felix Mittermeier Phillipe Donn on Pexels
Thank you for reading this. These are just some of our thoughts and experiences at the LSC in Newcastle upon Tyne. Have you been to the LSC? Have you been anywhere else recently you fancy sharing your thoughts on? How accessible and inclusive do you find places? Any favourites? Please leave some of your comments/ideas below!