07309 563 563 alex@waymakers.co.uk
There’s a crack in everything, that’s how the light gets in

There’s a crack in everything, that’s how the light gets in

by | Oct 7, 2024 | Autistic, Communication, Inclusive, Mental Health, Neurodivergent

Title quote by Leonard Cohen.

About the AFAB Group

We are a small social group of 14-19 year old autistic girls, and those assigned a female gender at birth (AFAB). We come together once a week during term time in understanding and solidarity.

In May 2024 we all shared a special journey together into the world of Kinstugi, where with broken fragmants of pottery we set about rebuilding and repairing a series of pots.

The strength and solidarity we bring to each other is gold. This group means everything to me.

Anon – AFAB group member

About Kintsugi

Kintsugi, also known as Kintsukuroi, is the Japanese art of repairing broken pottery with lacquer mixed with powdered gold, silver, or platinum.

This practice not only restores the functionality of the broken item but also transforms it into a unique piece of art.

The word “kintsugi” translates to “golden joinery” or “golden repair,” highlighting the use of precious metals in the repair process.

It is often used as a metaphor for healing and recovery in life, suggesting that brokenness and repair can lead to a stronger, more beautiful whole.

The process

So the practical process goes likes this:

  1. Pots were purchased from our local charity shops. 
  2. We all went to a grassy area and, well, we smashed them.
  3. We gathered up the pieces and took them back to our AFAB room.
  4. We mixed together some glue and gold glitter.
  5. We stuck the pieces back together using the gold glue.
  6. We left the pots to dry in a ventilated area.
  7. We then placed them on a decorative plinth to display them and set out amongst them some relevant quotes that encapsulate Kintsugi.

Top Tip

Stick the pieces back together one at a time whilst leaving time for the glue to dry in between because otherwise it all turns into one big sticky, slidy mess!

Images and quotes from our Kintsugi experience

To grow is to change. Change can be scary. It causes you to dive deep into your inner self. It’s hard to go diving, to find our strength.

We need to break open to grow and become everything we can be in the world.

AH – AFAB group member

I’ve had multiple set-backs and losses. There were times when I felt I had no strength to keep going. I have learned I am stronger than I ever thought possible.

When everything falls apart the reconstruction is almost impossible, but so satisfying. I’m badass!

AD – AFAB group member

broken pinky red pot with someone holding the bits together

AFAB group

This article was written in collaboration with the members of our AFAB group whom we are proud to have as guest contributors to our site.

My journey – altruistic, non-directed living kidney donation

My journey – altruistic, non-directed living kidney donation

by | Dec 11, 2023 | Autistic, Giving

On December 13th 2022, I did the best thing I’ve ever done and maybe will ever do: I donated my right kidney to a stranger. As we arrived at the Royal London Hospital, my mother was very nervous. I on the other hand was completely calm: I’d never felt as certain about any decision as this one.

It was something I’d been planning for a long time: I’d come across the concept initially while reading a book on ethics, Strangers Drowning by Larissa MacFurquhar, in my last year at university. As soon as I’d read the words on the page, I knew this was something I had to do. I read hurriedly on, scared I’d come across some factor that might prevent me from donating but everything more I learned about donating made me more certain it was right.

The strong sense of purpose I had made a real difference.

Researching extensively

Originally I had planned to think about this for one year, which eventually morphed into three due to the pandemic. I didn’t speak with anyone I knew about donating but I researched the topic extensively, including accounts of people suffering from kidney failure. It’s a brutal situation and I felt determined to go ahead.

After approaching the situation, I had to go through about a year of medical tests. Usually a task of this type, with numerous morning appointments and a need to chase hospital staff to keep the process going, would have been daunting. The strong sense of purpose I had made a real difference though and tasks I would have struggled with usually felt simple.

By the time I was approved to donate, I had informed my close family: they were surprised when they first heard my plans but I was well-prepared and was able to explain my reasoning clearly. Once I was on the register, a match came up instantly and my surgery date was fixed. I took six weeks off work, told my extended family and went ahead.

Thanks to my donation, a total of five people received kidney transplants.

Being part of a chain

Giving was remarkably easy: I was put to sleep and when I woke up it was done! I spent four days in hospital and then about a month living like an old man and taking constant naps. I never had a happier Christmas, though I spent much of it dozing. By the time I returned to work it would often feel like it was all a dream, then I’d reach for the scars on my stomach and remember it was real.

All I know about my donee is that she was a woman, in her 40s to 50s, and that the operation was successful. She was part of a chain: a loved one of hers who had been unable to donate to her agreed to donate onto another person if she received a kidney. The chain was continued such that thanks to my donation, a total of five people received kidney transplants. One, I learned, was an eleven-year-old girl who had been on dialysis: I had never imagined I could help someone like that, but I’m glad I did.

A strength of being autistic is being able to follow your own path and act on your own reasoning.

The worst part about donating a kidney – you can only do it once.

Day to day, living with one kidney has changed nothing in my life. In the long-term, it shouldn’t have much impact on my health: the average kidney donor actually lives longer than the average non-donor. I feel I paid an absurdly small price given how much I was able to help others. This seems to be not an uncommon experience: I met another altruistic donor who gave at 65 and who said it has changed very little in his life over the last decade.

The worst part about donating a kidney is you can only do it once.

  • In the UK, there are 68,000 people at any given time who are in kidney failure, including 1,000 children.
  • Only 20% of these people will be able to get the transplant they need to survive.
  • Altruistic kidney donations, despite the outsized impact they can make through starting chains, are still very rare, having reached 100 a year in the UK recently.

The fact that going in, I didn’t know any others who had donated a kidney wasn’t an obstacle to me as the benefits so clearly outweighed the costs. A strength of being autistic is being able to follow your own path and act on your own reasoning, without being concerned about whether something is a norm in wider society.

I did come out of the process, however, feeling there is a lack of awareness about the possibility of donation, about how great the benefits are and about how surprisingly easy it is. I’m keen to change this. I feel deeply grateful to all the medical professionals who enabled me to donate, as well as to my fellow donors in my chain. Donating is the best thing I’ve ever done; even so, I have more to do and more to give.

Useful links:

Guy in a hospital bed following his kidney donation along with an image representing the chain.

Guy

This article was written by a past coaching client of WayMakers whom we are proud to have as a guest contributor to our site.

Love, love the bright star you are

Love, love the bright star you are

by | Sep 25, 2023 | Autistic, Neurodivergent

Poem and Artwork by Diane Melanie.

 @dianemelanie_

I am sure life is more wonderful and precarious than we should ever know.

In fact, it may be a mistake to consider anything ordinary.

Amazing is all there is.

Think about it.

painting of a child with a rainbow of different colours around them

There has never been a day like this day,

and there will never be another you.

Child of Earth, you are a miracle,

with your very own starsong for guidance and protection…

…listen   …listen

Understand that you belong – as everything belongs – to the wondrous Web of all Creation

You walk in myth and legend,

the hero of your own story,

instinctively directing yourself toward a better day.

drawing of a single daisy with soft pink and greens in the background

You live in beauty, not because you own beautiful things,

but because you appreciate that the world is one of abundant beauty,

– including beauty you will never see –

and knowing you are blessed.

Please don’t spend any of your precious time trying to be flawless.

Fighting yourself only adds to the sum of conflict in the world.

drawing of a field mouse with berries in pastel colours

Nothing will ever be enough,

if you do not accept yourself in this moment as complete.

It is in your wholeness – in your perfect imperfection – that you are beautiful.

And try not to agonise over purpose or achievement.

Your most significant act could be one you never even recognise –

the fleeting smile to a passing stranger that, unknowingly, made all the difference…

pastel drawing of a bumblebee hovering over a foxglove purple flower

You do not live without effect in the world.

‘I don’t know…’ is just one of many ways to stop yourself before you’ve even tried.

It’s also the best place to start.

Only take your first step and keep walking.

As you venture, trust that life will always meet you half way.

There may be doors you approach, and even knock on – perhaps many times – before you are ready to go through them.

Sometimes you have to do the difficult thing because it matters,

and because it is no one else’s responsibility.

pencil drawing of an owl's face

In challenging times, seek sanctuary in the safe harbour of your truth.

Life is much too precious to be doing something you neither love nor believe in.

As unnerving as it can be, change renews the world.

And the timing is always right. Don’t doubt it.

pastel drawing riverbank

A river knows its path after all.

Be assured, you are never lost

Though at times you may feel forsaken or without hope,

even then, forces are at work to relieve you.

Have faith. Hold on.

Everything is perfectly in order – even the chaos.

Problems only have the power you give them to spoil a day.

Give yourself that power instead – the power to thrive.

Wherever plans may take you, there is really only one journey;

only you to leave and return to.

You are home, dear one. In yourself.

The dream, the destination already exists within you.

Was there from the very beginning.

pastel drawing of a horse and foal hugging

Promise to do one thing, every day, that your future self will thank you for.

Go as far as you can imagine, beyond all chains,

knowing that your truest dream is always the universe’s will for you.

Graciously accept the loving gifts of others along the way,

just as your lungs accept, without question, your next breath of air

You are loved immeasurably.

Let love give you wings and awaken you to so much of what you already have

And love in return –

with your whole life not just your heart

pastel colour drawing of a child's face with swirls of colours around it

Be generous with your light –

it helps others to shine

You are your own radiant gift to the world

Love, love the bright star you are

X

Diane Melanie

This article was written by a past Neurodiversity Profile Mapping client of WayMakers whom we are proud to have as a guest contributor to our site.

Are you questioning your gender?

Are you questioning your gender?

by | Jun 20, 2023 | Autistic, Gender, Inclusive, Transgender

Are you questioning your gender? Or do you know a trans person?

Well, recent studies have shown autism and transness* conflate more often than in neurotypicals.

Autism and transness are linked – you’re not an anomaly or anything! Yippee!!

If you know any autistic people who aren’t trans, maybe ask them if they’ve ever questioned their gender, or vice versa.

[* transness: the fact of being transgender; having a gender that does not match the body you were born with].

Autism and transness are linked – you’re not an anomaly!

Why the link?

The most common reason people think autism and transness converge often, is that it’s thought people hyper-fixate on figuring out their gender. Autistic people are also more likely to be gender non-conforming, so that may play a part.

Perhaps the reason is genetics, perhaps it’s related to differences in perceptions of gender, or maybe it’s connected to how autistic people interpret internal sensory signals that then inform how we feel in our bodies, and about ourselves.

People are now coming out and saying, “Yes, this is me!”

What do the statistics say?

Did you know that:

  1. Trans people are up to 6 times more likely to be autistic.
  2. Autistic people are more likely to be gender diverse.

In statistics generally, when a group of people are finally given access to information about or just generally allowed to exist somewhat peacefully, there will be a spike in numbers, as these people are now coming out and saying, “Yes, this is me!”.

People who haven’t before said they are this thing, are now being recognised, in which case, the spike will eventually level out to a steady level.

More people will be counted in a statistic if they feel they can finally and safely identify as trans without backlash.

In Spectrum News we see the “Largest study to date confirms overlap between autism and gender diversity“, showing that an autism identified are more common among gender-diverse people.

Statistics showing autism diagnosis by gender identity

gender expression and gender identity are different things!

Your unique brand of trans

A lot of the autistic people I know are also some brand of trans, or have questioned their gender at some point. There may be more people like you around than you think. 😀

Talking about ‘brands’ of gender, a useful thing to remember is that gender expression and gender identity are different things!

How you dress and how you identify gender-wise are two completely different things: you wouldn’t call a cis-girl tomboy a guy just because she’s wearing – I don’t know, a lumberjack shirt.

It’s ok if you’re trans and your gender identity and gender expression aren’t the same, that just makes you super-comfortable in yourself!

These identities have existed for centuries, probably longer

History

If you are a person that draws a line at some identities, maybe you've said something like,

“You’re ‘non-binary’? You can’t be in-between! Pick one!” 

or

“‘Gender fluid’? Ha, they’re taking this too far now!”

... then take a look at history. These identities have existed for centuries, probably longer.

Like in Hawaii, the Māhūs are third gender people with additional spiritual and social roles.

And in Norse mythology, Loki is shown to be gender-fluid.

A Polynesian third gender, RaeRae, is a man who behaves as and considers himself to be a woman.

History says trans rights, so maybe you should too. 😀

I don’t believe this needs to be said but: if you are any brand of non-binary gender that is fine. If we were all either a ‘1’ or a ‘2’, the world would be so boring! And even if only two genders are recognised in most countries, psychology and medicine and such support non-binary, gender-fluid and other identities as valid.

Resources:

    Pronouns

    If you are having a hard time figuring out about gender pronouns Jake Edwards, a non binary youtuber, talks about "Gender Pronouns, Get Them Right!"

    YouTubers

    Finding trans YouTubers and such are helpful too. I watch Jammidodger and Noahfinnce, they have good videos on transition stuff.

    I’ve heard Ash Hardell is also good – just have a look around, find the YouTuber that makes content you like.

    NB Keep in mind that the three I’ve mentioned are trans masc/trans men; I’m not overly familiar with any trans women YouTubers unfortunately.

    Supporting a trans person

    The Trevor project is good if you’re struggling to support a trans person in your life and feel out of our depth

    You might also want to look at Supporting the Transgender People in Your Life: A Guide to Being a Good Ally

    Other useful links

    Proud2Be is a grassroots user-led social enterprise that exists to support and enable LGBTQ+ people in Devon (and beyond).

    The Proud Trust is an LGBT+ organisation that supports LGBT+ young people. They have a good page on their website for exploring gender identity.

    Intercom Trust are based in Exeter and are an LGBT+ led charity improving wellbeing and inclusion across the region. They also have a great resources page.

    Oreo- He/him

    This article was written by a past coaching client of WayMakers whom we are proud to have as a guest contributor to our site.

    Life at uni – you might just be surprised!

    Life at uni – you might just be surprised!

    by | Dec 12, 2022 | Autistic, Communication, Transitions

    Moving away from home to start university can be a daunting prospect for anyone. How refreshing to find that it has not been the monumental challenge I expected it to be. 

    It has now been over two months since I started university and I am pleased to say I am absolutely loving it! My first term is nearly complete and already I have made some lovely friends and am making good progress with my course.

    Most helpful of all is that I am living in a

    ‘designated quiet block’

    Living on campus

    I am very lucky to be living on campus in the university accommodation and this has worked out brilliantly. My lectures and seminars are a ten-minute walk away, so I can come home in between classes to rest and enjoy some quiet. I am also only a five-minute walk from the university shop, which is very helpful if I need to buy anything and don’t have enough social energy to walk into the city.

    Most helpful of all is that I am living in a ‘designated quiet block’. This means that everyone who lives in my building has requested a quiet accommodation which doesn’t involve alcohol or partying. This has been amazing as it means I can work and sleep undisturbed, and my flat mates are all very similar to me in their appreciation of a calm living space.

    It could be a good idea to:

    1. ask about quiet accomodation when you visit a university on an Open Day if you feel this might suit you.

    2. understand more about the Disabled Students’ Allowance (DSA), which is a grant to help with any extra costs.

    3. Read around. I found Disability at University: guidance and a glossary of terms really useful.

    The idea of living in a flat with five other strangers was initially extremely anxiety-provoking

    Living with five strangers

    The idea of living in a flat with five other strangers was initially extremely anxiety-provoking. Although the university had supported me by giving me a room with an en-suite. I would still have to share a kitchen and living space with people I had never met before.  Surprisingly, my flat is the most enjoyable part of being at university so far: my flatmates are some of the kindest and most considerate people I have ever known and it’s reassuring that we all experience very similar stresses. For example, we all have quite low social batteries and so spend a lot of time in our rooms rather than out, and everyone is very tidy and respectful of each other’s space and belongings.

    It has also been wonderful getting to know people from different cultural backgrounds and countries and bonding over interests and hobbies. All these things have been an enormous help in transitioning from my family home to university halls.

    The biggest challenge so far for me has been managing energy levels

    Establishing new routines

    Some things that helped me adjust to the change in lifestyle included decorating my room with familiar pictures and books early on in the moving in process and establishing my new routines to include my academic work as well as free time, time for meals and walks to stay healthy. Also, keeping in touch with the accessibility team throughout, who offer a social group every week for students with similar struggles was comforting as it established a go-to support network for whenever things got overwhelming.

    Planning breaks and rest

    The biggest challenge so far for me has been managing energy levels throughout the week. Learning which days I need to plan a break and a rest is important for me because I am managing many different scenarios throughout the week. Constantly meeting new people can be exciting but also exhausting, walking into a city centre can present intense sensory overwhelm, and engaging in society activities and demanding academic work can feel like a lot to balance.

    Having a quiet bedroom to go back to as well as regular visits back to North Devon means I have breaks to manage it all without feeling like I’m missing out on anything.

    the best thing is being able to study my interests in intense detail.

    Overall, the best thing is being able to study my interests in intense detail. It is a privilege learning from some of the best academics in my subject, diving deep into my interests, and being surrounded by fellow students who share a deep appreciation for our course.

    I cannot wait for next term and would encourage anyone who is thinking of going on to university to start exploring your options and available support – you might just be surprised!

    Some key tips and takeaways that might be helpful:

    • take a break, take a step back and scan your body. 
    • notice your social battery – do you need some time out?
    • think about types of social interactions e.g. size of groups, duration etc.
    • anticipate the upcoming day and build in some downtime to recharge.
    • think and ask about accomodation e.g would a quiet block suit? This student’s blog post might reassure you: https://www.bristol.ac.uk/blackwell/news/2020/autism-at-university–being-an-autistic-student.html 
    • take time to do something you enjoy, perhaps your special interest.
    • from my last blog, don’t forget to recognise your strengths!
    • most importantly, give yourself a little time, grace and self-compassion.

    I hope this was helpful.

    Kit

    This article was written by a past coaching client of WayMakers whom we are proud to have as a guest contributor to our site.

    Visualising an independent future

    Visualising an independent future

    by | Aug 23, 2022 | Autistic, Mental Health, Neurodivergent, School & Uni, Sensory Sensitivities, Transitions

    I hope that sharing my journey since completing Secondary School and Sixth Form will be helpful, especially to those, like myself, who found it hard to visualise an independent future after the struggles and stresses of school. I’m going to tell you a bit about my experience at school, taking a gap year, setting up a small business, getting a part time job, learning to drive and preparing to leave for university.

    School can be extremely stressful but this doesn’t mean that the rest of life will be

    Secondary School

    I am 19 years old and I completed my GCSEs in 2019 and my A Levels in May 2021 at my local secondary school. The seven years I spent there were intensely stressful and anxiety-provoking for me due to the sensory struggles associated with extreme noise and large crowds, the unpredictable and disruptive behaviour of the students, the pressure focused around academic achievement and the inconsistent and uninformed support available. This made school life very overwhelming for me.

    I lost confidence in myself and retreated more and more

    For these reasons, I lost confidence in myself and retreated more and more from interaction outside school, which meant that when I finally completed my A Level exams, I felt much less independent and socially capable than my peers, as well as exhausted from the intensity of the academic work load. For these reasons, I decided to take a gap year to give myself time to essentially ‘catch up’ with my peers. I am now at the end of my gap year and I can say it was the best decision I could have ever made!

    Gap year and rediscovering me

    I started the year by giving myself some weeks in the summer to ‘recover’ from school. This meant trying to let go of the anxious ‘fight or flight’ state I had been in for so long, and exploring my creative interests and hobbies. Over this time, I was able to rediscover my personality and interests, which felt amazing after so many years of masking. By the end of the summer, I had written up a plan of everything I would like to have achieved by the end of my year. I then needed to find the independence and confidence to achieve these things and coaching was amazing in helping me do this!

    Coaching at WayMakers and driving

    While I was meeting weekly for my coaching with WayMakers I had started to have driving lessons. Driving was much more demanding and tiring than I had imagined and I found the one on one lesson style very intense but it was really nice to have an ongoing project to work on through the autumn and winter.

    My Etsy shop grew and grew, and so did my confidence as I went through coaching

    My Etsy Shop

    During this time I also set up my small business, an Etsy shop selling my textile and handmade goods. This was slow to take off but really exciting once I started and the nice reviews and customer feedback gave me lots of confidence in myself and my craft. This venture was really helpful because at this stage, I didn’t feel ready for a part time or full time job, particularly because those available were based in sensory-demanding environments such as supermarkets or cafés, so having some financial independence was really rewarding.

    My Etsy shop grew and grew, and so did my confidence as I went through coaching. Soon, I could live much of my life independently and felt like I would like to explore the possibility of having a part time job. I enquired at one of my favourite places, a historic house and gardens. And suddenly I was working there, interacting with the public and exploring the history of the house.

    Although demanding on my energy levels, this opportunity was brilliant for my self confidence as I could work alongside people with similar interests and feel equal and valued in an adult environment. The fact that the job involved very short shifts and short breaks in between interactions meant it was much easier for me to enjoy the workplace and never felt too tiring. I have really enjoyed the months I’ve spent working here and will miss it when I leave for uni!

     

     I didn’t think I would be able to manage living away from home in an environment of such high social demand.

    Uni

    I have always wanted to go to university. Although I had a confirmed place since leaving sixth form, for a long time I didn’t think I would be able to manage living away from home in an environment of such high social demand. But being at work, back in an environment with academics made me realise how much I valued this world and my subject and so I started to book accommodation, register with the accessibility team, apply for my DSA equipment and so on, and now I am really looking forward to trying uni life, comfortable knowing that if it isn’t for me, I can come back to a successful business, a lovely job and the option of pursuing my degree online.

    Some key things I’ve learned this year:

    • School can be extremely stressful but this doesn’t mean that the rest of life will be. Many teachers will tell you that it gets a lot harder when you leave education but the reality is, for people who don’t thrive in such a pressured environment as school, life opens up and becomes a lot easier when you leave.
    • Taking time out to develop your independence and build some confidence is really helpful. It doesn’t mean you’re failing or falling behind, it just means you know yourself and understand you may need time and space to work out your own independence.
    • Seeking people who understand your disability and your strengths and struggles can open up many new possibilities. It is especially important to recognise the strengths of neurodiversity!
    • Support at school can sometimes feel very negative as it tends to centre around your struggles rather than your talents so talking to people who truly understand what makes you special is important.

    I hope this was helpful and I look forward to sharing my experience of university!

    Kit

    This article was written by a past coaching client of WayMakers whom we are proud to have as a guest contributor to our site.