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A Functional Guide to Autism

What is it like to have High Functioning Autism?

I have a condition called High Functioning Autism Spectrum Disorder, which you matey know as Aspergers Syndrome.

Ive had it since birth, but only got a diagnosis when I was 19, after a stay in a psychiatric hospital and living my life up till that point never quite knowing why I was diferrent.

I’m 22 now; and here’s what I have learnt about having Aspergers Syndrome.

I am high functioning, and can do all the things that’s you can do.

I can cook, I can use public transport, and I even managed to get a degree at university.

But its taken practice to be able to do all these things. Learning the ropes from non autistic people and trying to follow societies chronology to get things done. But that doesn’t mean I am able to do things at the same speed as you, as what takes you 1 hour to do, takes me 2, 3 even 4 hours to wrap my head around, process and complete. My Aspergers means I am slower at processing things; but certainly not incapable.

Having a good support network is vital when you have Aspergers. This can range from family members who give you that all important pep talk when you need it, to close friends who you can turn to for a great time. Whoever is in your support network; they matter.

Finding and embracing your niche is so important. For me, I have a number of things I consider to be part of ‘my purpose’. Running is a big one, whether outside doing a 5km, 10km or a quick jog on the treadmill, running helps me activate endorphins and make sense of the world one step at a time. Another big one is writing as being able to let my words out on paper as oppose to verbally can help when I’m having a reflective, quiet day. And finally, creating performances that offer an honest insight into my experiences with Autism, mental health conditions and being non-binary. If I am to ever get anywhere, I’ve learnt that creativity is one way I can be my authentic self.

These niches are not ‘talents’, and it doesn’t mean I’m amazing at these things either. For me, it just means I find enjoyment in them as they become ‘safe’ coping mechanisms to help me work my way through life- and explain to others how I see the world.

So that’s what I’ve learnt about having Aspergers Syndrome.

I’m still discovering more and more each and everyday… and I cant wait to see what comes next and tell you about it!

Dual Diagnosis: A short piece on my perspective.

What it like living with both a learning disability and mental illnesses?…

It’s not easy, I can tell you that much.

I’ve had Autism since birth but only got diagnosed afew years ago; and when it comes to my mental health, that was only diagnosed after a breakdown afew years ago too.

Living with both has it’s downfalls, sometimes I’m not able to communicate how I feel because I’m anxious; and overwork myself due to my autism to ensure I don’t appear weak and stay ‘functioning’.

Other days I have an autistic meltdown where reality becomes distant and my depression is the only thing that I can think about.

But, it has its benefits too. Living with both a learning disability and mental health illnesses allow me to see the world through a perspective I never thought was possible. I see the tiny details in things, the colours, the textures, the feelings people have hidden under their smiles.

I am determined to inspire others and remind them that the labels society puts upon us, the diagnosis each, the stereotypes, the stigma do not merely define us. They do not hold us back. They make us work ever that bit harder to achieve, and… we do achieve.

We achieve and conquer those silent battles that nobody knows about. We fight everyday to survive, and we try our bests to make our way through life: one step at a time.

The power of panic

My experience with panic attacks, working with the process & how to turn problems into purpose.

The wonderful world of panic. We all get panicky at times but there’s a big difference between panic attacks and having a moment or a blip in the road.

My experience with panic attacks

I remember the first time I had a proper panic attack and it goes all the way back to when I was 8. I was in primary school and it was just another regular day in the classroom.

I was already known to most students and teachers by the nickname ‘Spider’ due to my handwriting and the fact I struggled to learn at the same pace as my peers (throughout my whole school journey, I was working at a level a year behind what I should of been).

It was just like any other day though. I’d stay quiet, get the work done, try my hardest to keep up with the class… so that’s what I did.

But this day was different and I found myself unable to ignore the words and jokes both students and staff were making about me.

I started to get an overwhelming sense of panic as my breathing became less synchronised. I found myself unable to focus on the work I had to do and felt very confused and disorientated.

Now as an 8 year old and this happens, you feel like its fatal. It felt like the worst thing in the world that could ever happen to me.

Although I really wanted to reach out and tell somebody about what I had just experienced, I didn’t tell anyone and nobody noticed I was having a panic attack because I thought that if “I make a fuss, it’ll come back and ill have another one.

The problem with panic attacks

The thing about panic attacks is, that for the most part they can happen anywhere, and at anytime. This can make it quite difficult to spot and acknowledge that you are actually having a panic attack.

From what I’ve researched and a lot of people who I talk to say that the stigma around panic attacks is why they don’t talk about them and hide them. (I guess this is one of the reasons why I’m being so open right now: it’s something quite difficult for me to talk about my struggles, but in doing so, I can (hopefully) let others know that they aren’t alone).

If you have a panic attack or suffer with panic attacks sometimes it can be regarded and stereotyped as attention seeking behaviour, like you just want to make a scene. In reality, this isn’t the case and actually those who do have panic attacks just want them to stop as quickly as possible.

It’s a sad reality that there still isn’t enough being done to reduce stigma and smash stereotypes. I believe a large part of why there’s so much stigma around panic attacks is because we just don’t know enough about them.

We have come far though, but we still have a long way to go. If people don’t feel they are able to speak up share their experiences; it becomes difficult to understand, support and provide the appropriate care to support those struggling.

We need to all take an active role in removing barriers and opening up discussions surrounding mental health and panic attacks, whether that be lending a listening ear or being able to turn to a friend and say…

“I don’t understand how it feels, but I’d like to learn more so I can know how to support you better”.

A big factor in why panic attacks are not talked about enough is that they aren’t always easy to spot. You can look fine on the outside but inside you may be having a full blown panic attack. It’s not always clearly visible to spot and recognise.

Symptoms can range from shaking, to heavy breathing, to crying, to rocking and stimming (of which swimming is also linked to OCD, autism spectrum and anxiety disorders), to being withdrawn and non-responsive to the environment you’re in. They can be outwardly extreme and almost seizure like, or be more internally with hallucination type behaviours or blurred vision.

Working with the process, not against it

Sometimes however, panic can be a good thing- as long as it doesn’t play a significant role in your health. A little bit of panic is natural, like that bit of anxiety when you have to speak to a large audience, or when you are on an aeroplane waiting for take off.

This kind of panic is what I like to call the positive adrenaline panic and in small doses its good as it get the blood pumping and get your adrenaline rush going.

I think we are very quick to dismiss adrenaline based panic as something that doesn’t ’t exist, but I really think it does. It can be really beneficial at times because I believe in certain situations, panic can help us find purpose.

Just after I was discharged from a 6 month stay in a psychiatric hospital back in 2014, my panic attacks began to get worse because I was back out in the real world where I was faced with daily life and had to learn to recondition myself back into a normal, not so routine environment.

I found that the panic attacks were so frequent I even thought about making a tally chart to keep track of them as I’d loose count on how many I’d had.

Taken a few weeks after I was discharged. 2014.

Over time I developed a personal strategy to manage the panic attacks, both adrenaline-rush panics and severe anxiety panic attacks. I decided to apply my own mantra to allow me to manage my panic attacks more easily…

I will let myself have the panic attack when I feel them coming along”.

Breaking them down into smaller chunks has really helped me deal with panic attacks.

But I’ve come to recognise and accept that for me, they never go away completely. I can’t really remember the last time I had a day when I didn’t have some kind of panic attack or adrenaline rush moment. But they are getting less frequent. Having 2 or 3 small ones a day instead of one big panic attack can help to relieve the stress and allow me to stagger through my day and face life in the best way I can.

Another way I use to manage my panic attacks is Grounding.

Grounding yourself within your surroundings to bring yourself back to the present

I find grounding useful and it is something you can do whenever or wherever you are. It’s all about recognising where you are at, how you are feeling and realising that these feelings are temporary.

I think that panic attacks are something that we all deal with in our own different ways. But, over time we learn techniques to help ourselves become the best that we possibly can be.

“Panic causes tunnel vision. Calm acceptance of danger allows us to more easily assess the situation and see the options” – Simon Sinek

For me personally, sometimes my purpose comes from that assessment; finding the best way through situations to have the most positive experiences in life that I can possibly have.

My purpose also comes from all the times in the past the panic has taken over, and I’ve realised that sometimes a little bit of panic is okay, but in proportion.

The power of panic attacks can move us in many ways, but it’s what we do in those panic moments that defines who we are and what we do to help ourselves thrive that makes the difference.

Panic into purpose, no problem.

An Autistic Affair: Pride or Prejudice?

Why we all can become Autistic allies

Living with an Autism Spectrum disorder comes with many positives. The ability to process information in a sensory-heightened fashion. A perspective of the world that is extremely vibrant. Possessing a creative mind that has the capacity to think outside the norms. But it also has its negatives: struggling to adapt to ever-evolving environments, confusion surrounding over-sensitivity to stimulus and the ability to use standard methods of communication to express emotion.

Although having Autism can be a wonderful thing there’s still much inequality and many problems that Autistic community faces, from those who have also fallen through the gaps of misdiagnosis, to those misunderstood by neurotypical minds.

So what are some of the issues the Autistic Community is still facing?

  • Awareness and Education: 60% of teachers in England do not feel they have had adequate training to teach children with autism
  • Fewer than one in four school leavers with autism stay in further or higher education
  • Only 16% of autistic adults are in full-time paid employment 
  • Many of those on the Autistic Spectrum feel unvalued, unconfident in their abilities and unsure of how to adequately manage their emotions
  • One in three autistic adults “are experiencing severe mental health difficulties due to a lack
    of support” 

(Data courtesy of www.ambitiousaboutautism.org.uk/stats-and-facts\)

So what can be done to reduce prejudice, raise up the pride and support Autistic individuals to thrive?

Awareness: Creating awareness doesn’t have to mean wearing a badge saying “I am Autistic”, or “Autistic Ally”. Also, instilling awareness doesn’t have to mean attending every conference (even the ones in shady offices with half stained coffee mugs) on the Disorder to feel like an ‘awareness hero’. Reshaping the way we talk about Autism is one of the most helpful ways to raise awareness. Instead of seeing this disorder as an illness or as a disease, we should strive to view Autism and Autistic people as a community of neurodivergent minds just trying to live ‘the best we can’.

Accessibility: The availability of services that are tailor made to support those on the Spectrum needs to be adjusted to assist Autistic individuals with living the most productive and fulfilling lives as possible. Services and schemes such as coloured lanyards for hidden disabilities around stations, airports, buses etc. (I’ll be touching on this in another blog post), Autism-Friendly cafes, restaurants and eateries, cinema screenings and relaxed shopping hours can all be utilised and tailored and more accessible to help those on the spectrum. It can make ‘normal’, everyday tasks and activities seem more manageable, and enjoyable for the person with a diagnosis of Autism.

Education: Education about Autism Spectrum Disorders should be implemented from an early age right up to senior citizens. We teach children about people with disabilities who are in wheelchairs, or deaf, or blind and how to spot and support them where appropriate, so why not teach them about the less visible disabilities of Autism and mental health? Resources should be widely available within all educational settings and within the community such as schools, youth clubs, libraries, workplaces etc. We all can be better educated about Autism to make sure everybody can thrive.

Transitions: For an individual who is on the Autism Spectrum transitions can be difficult. A person with Autism can often feel overwhelmed due to sudden changes such as moving from adolescent to adult mental health and learning disability targeted support services, relocating to a new house, and anything and everything in between. Change is hard for most neurotypical society, and we each react in different aways, however for someone with Autism change and a disruption to routine can bring on a downward spiral of confusion, poor self-confidence in their abilities and sometimes, feeling inadequate of suffering from severe anxiety due to in actions and dynamics. Sometimes, though, we can’t help change from occurring, but we can make informed attempts to make transitions smooth for those on the Autism Spectrum. By creating an environment where open questions from the Autistic individual are encouraged not discouraged, explaining the course of action and the reasons why (where appropriate) the changes are happening, and supporting them through the whole process; including post-transition.

Employability: Finding paid, long-term employment can be difficult at the best of times for neurotypical minds but for someone who has Autism it can especially challenging. Employers, businesses and companies whom are not Autism aware are more likely to reject candidates on the spectrum because they do not know how to ‘manage’ with an Autistic member of staff. If given the chance, many Autistic people are successfully integrated and introduced into the workplace through a variety of paths including work experience, taster days, paid part-time and (eventually) resulting in full-time positions. Individuals with Neurodivergent minds have always been willing to learn, adapt and overcome barriers (and stigmas and stereotypes) within the world of work, if given equal opportunities to thrive.

No matter how big or small our actions, we can all take steps to make this world a better place for everyone.

So, what can YOU do to support those on the Autistic Spectrum?

Let’s make it happen, one step at a time.

For more information about Autism, check out Episode 2 of my Podcast: The Spectrum Series

Claudia

Clock-Conscious Culture

The trouble with timed tasks

Time. Every second counts- and we keep on counting. We check our phones, watches and clocks religiously to see how long has passed. Sometimes it goes fast, sometimes it goes slow- but it always keeps moving forward. Infinitely. Indefinitely.

So why are we so obsessed by time? Are we really living in a clock-conscious culture?…

Time grips us in the midst of business, of peacefulness: wherever we are, whatever we are doing, it always has a role to play.

Time: “A driver of effort”

As Daniel Kahneman, author of the international bestselling book ‘Thinking, Fast and Slow’ writes; one of the reasons why we pay such close attention to the seconds that have passed is because the very essence of time evokes our attention. And, our attention to certain tasks is one of the reasons I believe that ‘time’ (as a construct) may have the power to control us (in varying ways).

When our minds are so focussed on one task, we get tunnel vision and won’t stop until we have completed it. Our brains and subsequently our bodies go into ‘work’ mode- and when a time limit is applied, we end up taking one of two routes to consummate the action.

Route 1: The Rush

Route 2: The Pace

Route 1 is what happens when you focus so much on the time limit that you forget about your basic functional needs. To eat. To rest. To exercise. To live. Stuck in a mode of ‘work until the job is done’; this route usually ends up in a complete burnout where the brain becomes a bully. Although the task is complete with plenty of ‘time to spare’, more often than not it takes longer to recover from the burnout than it does to complete the actual task.

Route 2 is what happens when you allow the process to have as much of an impact as the time limit. You appreciate the time limit and knuckle down to complete the task, whilst maintaining a healthy relationship between your brain and your body. A fusion of fuelling, focussing and feeling rested. You complete the task slower than Route 1, but still within the allotted time- and, still able to function. When you follow route 2 and you have a positive work/life balance, it significantly improves your productivity.

With the rise of technology comes a tidal wave of organisational apps, alarms, calendars and mood trackers that allow you to track your activity every waking second- there are even some for sleep, too. And, such as the tide, we begin to go to and fro between apps getting caught up in a sea of systems. Sometimes we are able to float, and sometimes we drown under the pressure to constantly track our lives.

It’s time we step up and start living.

So as the dial ticks over and we approach the next decade, how can we maintain good productivity and healthy well-being without cutting corners?

Heres some of my suggestions we can all consider…

  • Make a note (mental, digital or on paper) of what’s most important to you. This can help to refocus attention on personal priorities to evoke practical and positive well-being
  • Instead of thinking ‘Could be’ or ‘should be’, why not try out a ‘Just Be’ mentality? This can help as a coping mechanism for anxiety when it comes to busy schedules, time limits and deadlines.
  • Look out for time-saving ‘Life Hacks’. Could it mean doing laundry split into colours instead of doing it all at once (and potentially a missing sock dilemma)? Or doing dinner preps for the week on the Sunday Night? There are lots of ways
  • Set aside some “Me time” every day. It could be 2 hours, it could be 20 minutes. Ensuring quality time to focus on the self is an important factor when it comes to painting positive emotional and physical well-being. It could be as simple as going for a stroll on your lunch hour, an early morning run, meditation or mindfulness, or reading a few pages of your favourite book.

The dynamics of the durative culture we live in means that we are forever transposing unto the next chapter of our existence. We are constantly learning to live with the clock, instead of against it. Although this will take time for us to adjust to, it’s something that we need to strive for, to not let let our body-clocks fall victim to the second hand, but find a pace of survival that works for us as individuals.

Tales of an Anxious Artist

Art and Anxiety. An elusive fusion of creativity and concern.

As an artist who has anxiety; when I have an anxious episode my functioning’s as a creative individual are often compromised by my ability to see a task through to the end.

When I’m producing a piece of art (in whatever medium that may be) I often find it challenging to stay motivated when thoughts of self-doubt, low confidence and negative thoughts that come into my mind.

I’ve had anxiety for a while. With irrational thoughts about the “could be’s” rather than the “just be’s” have plagued my mind for as long as I can remember. Sometimes its cope-able anxiety; whereas other times it becomes such a hassle that I’ve needed extra support.

… So what helps?…

During my stay in a psychiatric hospital back in 2014 I was given various medications to ease my anxiety (also prescribed for depression). Although these worked at first, I soon became docile to them and they didn’t have any effect. In 2017 after my discharge I was taken off all medication and honestly, I feel a lot better for it. I’m not saying that medication is a bad thing as during this difficult period of my life it allowed me to get to a place where I was on a ‘level playing field’.

Another type of treatment that I was also prescribed took the form of talking therapies. As someone who suffers with anxiety, depression self-harm (using various methods to regulate my emotions), OCD and bulimic tendencies; DBT (Dialectal Behavioural Therapy) and CBT (Cognitive Behavioural Therapy) was offered to support me in regulating my emotions to allow me to think more clearly.

Imagine believing that your only ‘cure’ was an hour-long session once a month with a counsellor and a pill every morning that takes the pain away. This was my life from 2014-2017. It became an addiction. I realised that I wouldn’t be able to cope and live a healthy life without having these ‘cures’, these ‘quick fixes’. And it became more detrimental to me because I was only surviving until the next appointment, surviving for the next capsule.

At the end of 2017 in order to get out of this negative spiral of addiction, release and anxiety: the only way was to come off of it altogether. I had reached a point where the medication and therapies did not have as much of an effect as what they were intended to have.

After many appointments and a long period of trying, it was finally decided by a team of psychiatrists, doctors and other medical professionals specialising in mental health that I didn’t need them anymore. I practically “grew out of them”, they said.

“After coming off the medication and the talking therapies, I knew I had to take an active role in creating my own therapy.”

“Why don’t I get creative through art?” I said to myself one day at the beginning of my second year of University in 2017.

I allowed myself to really enjoy the creative ventures that not only my university course (Theatre Technologies creating performance using lighting, sound and projections) offered, but what the world had to offer. I began to see everything around me as a possible inspiration to make art (be it a picturesque painting, a sculpture, a building or even a broken floor tile).

After the realisation that I could use my creativity to make art that was thought provoking, inspiring and self-healing, I have never looked back. I use all kinds of mediums including technology, performance (something I’m looking more and more into now!), pencil and paper, sound, poetry to create art.

Ive come to a conclusion that art has the power to connect people from all walks of life. Creativity has the ability to impact lives in ways which we are only just beginning to scrape the surface of. For me, the art that I create provides me with a window of opportunity to forget about the pressures of the outside world, to focus on making something that sets me free and, support me in surviving in this crazy world.

Now that I am able to consciously recognise, acknowledge and gain a deeper understanding of my emotions I realise that I will always have anxiety.

“I’m an anxious artist. And I’m okay with that.”

Claudia

Power Rangers. Poses. Positivity.

Stand up and prosper.

When I was younger, I used to love watching the Power Rangers on TV. Not only did I think I had special powers when I was wearing my superhero cape (trust me- old bed sheets make the best costumes), but I felt free.

You’ve got to admit, those outfits were fab.

But there was one thing that I couldn’t quite understand…

Why did I see them as ‘strong’ and inspirational figures?

It took me a long time to figure this out, but I realised the answer was simple…

Introducing the Power Pose.

Their power pose was something that was unique to them, it was what made them an individual. It was something that reflected their personality. It was something that they could show the world at anytime, anywhere. It was their own ‘stamp’ on life and the world in which they live.

Moving to the modern day; we see many influential figures that have their own ‘stamp’ on life and the world they live in. From A-List movie stars to red carpets, influential minds of the future and the averages joes like you and me: how you present yourself physically has a big impact on how you are perceived, and how you perceive yourself.

A few months ago I attended a talk by Claire Eastham, author of the amazing “We’re All Mad Here” (which I highly recommend you read!). Aside from discussing how she deals with her anxiety, she spoke about the importance of confidence in the face of adversity: how having a power pose helps her to face the world, achieve and prosper.

On the subject of power poses and body positivity; although controversial “Don’t fake it till you make it. Fake it till you become it. Do it enough until you actually become it and internalize” as Amy Cuddy mentions in her inspirational TED Talk (well worth a watch!), resonates with me.

For me personally, I’ve never really been confident in my body image and the way I look; but after coming out as non-binary last summer, I’ve been able to find my own power pose that’s unique and authentic to me- working on how I see myself everyday, one step at a time. One that defies stereotypical norms and stigmas. A pose that makes me feel confident, inquisitive creative and worth investing in.

“Power Pose.”

I’m not perfect, and never will be. I’m constantly finding new power poses and ways of expressing myself and realising that I truly can face the world and any challenges that come my way.

Do you have a power pose? Time to stand up, speak up and believe in yourself. You have the power. Just believe it.

Claudia

Mentally Moving

Moving towards a mentally healthy society

As of 2018, it’s estimated that approximately 16 million people in the UK are experiencing mental illness.

Thats about 25% of the population

Its a shocking statistic…

… And a number that keeps rising at exponential rates.

As a society we are growing more mentally unhealthy and our attitudes towards mental illness needs to change.

But what can be done?

Here, I share some of the ways I believe we, as a collective community of sufferers, survivors and supporters, can move towards creating a more mentally healthy society… for the better.

Stigma, Shaming & Stereotypes

The stigma around having a mental health condition can be difficult to deal with. Many people who have a mental illness are stereotyped.

Sadly though, stereotypical thinking goes hand-in-hand with shaming.

But as a society we need to realise that each individual who struggles with their mental health is not ‘just sad’ if they have a diagnosis of depression, or ‘just nervous’ if they have an anxiety disorder.

There is no single ‘face’ of Bi-Polar. There is no single voice of Schizophrenia. There is no single ‘weight’ of Eating Disorders.

There are so many ways to describe each individuals relationship to their mental health.

Don’t let tick box culture win.

Accepting Yourself

To begin with, I know first-hand that accepting you are struggling with keeping your mental health in check can be tough. Nobody likes to admit they are facing difficulties or going through rough times.

“Why is my brain like this?”…

“I’m too scared of admitting I need help”…

… These are phrases that were constantly in my vocabulary. They were the words that went through my head repeatedly during the hardest times of my journey with mental health issues.

I struggled for a long time to accept that I had poor mental health and didn’t understand or know how to reach out for help in constructive (and not destructive) ways. Because my thought process was so fragmented at the time wasn’t sure how to approach my friends, family or medical professionals when I needed support.

However, it was during the time I was sectioned in the psychiatric hospital that I found myself gaining a hint of acceptance of my difficulties.

I realised that “change starts from within”.

This helped me to see the various treatment methods (consisting of numerous types of therapy and medications) I was receiving at the time as ‘reconditioning’ of my mind instead of a ‘quick snap fix’. I was essentially accepting that I was learning how to train my brain into being healthy again.

I’m not saying that when you accept you are struggling you will change instantly from a struggler to being ‘cured’; but you may find yourself reacting to treatment that is provided in a more responsive way.

Secondly, we as a society need to accept that Mental Health issues exist. That statement may sound blunt, but we as a society need to step up and recognise that people are suffering and struggling mentally. Mental Illness is a silent killer. Just because it isn’t physical and visible, doesn’t mean it isn’t real.

We each have our own battles to face. We all have ups and downs. We all struggle. We all have a Mental Health. Let’s not put those down who are struggling but be supportive towards them. No matter what you may or may not be facing, we need to stand together as one.

Acceptance is a process. It’s something I’m still working on every day.

Acceptance not tolerance.

Awareness

When it comes to Mental Health, the word awareness is a word used so often.

But what does it actually mean?

To me, awareness means a combination of things.

Knowing, Accepting and Feeling.

You don’t have to be a genius to be aware…

… You need to be human.

I’m becoming more aware of Mental Health everyday- it’s so refreshing to gain knowledge and use it to help others too.

Heres some of the ways I find useful:

  • Podcasts / Books / Short Films / Blogs (I’ll be doing a blog post soon where I’ll be sharing some of my personal favourites and recommendations)
  • Attending Events, Talks and Conferences (Many also have Live Feeds online if you can’t attend)
  • Talking openly to those who have mental health difficulties. (Don’t be afraid to ask!)
Be Real. Be You. Be Human.

To summarise; there is no one size fits all ‘cure’ when it comes to moving towards a more mentally healthy society. It’s a process that each individual respectively must take in their own time, at their own pace.

We need to drop the Stigma, Shaming and Stereotypes. We need to have Acceptance. We need to have more Awareness.

We need to Speak Out.

Claudia Van-Nimwegen

A Broken System

Schematics of the Depressed, Oppressed and the Suppressed.

The mental health system as we know it is struggling, and although staff are doing their best with the (rapidly) limiting resources they have at their disposal, many people are falling through the gaps.

The system is broken, and we are becoming well aware of the schematics that take place behind closed doors and the subsequent repercussions affecting support services for emotional wellbeing.

But to what extent does the crisis present itself…?

Just how badly is the broken system?

I describe it here, using just 3 words. Depressed. Oppressed. Suppressed.

And here’s why….

Depressed

Approximately 1 in 4 people within the UK are suffering with their mental health, with 4 out of 10 having reported episodes of anxiety and/or depression at one point or another during their lives. These may seem like surprising statistics, but they are far from palpable as this data only represents what is reported and recorded. There are many more suffering in silence.

In fact, on average we are much more depressed as a nation than we were 50 years ago.

The cause?

Although disputed; my opinion is that amongst other factors, technology has played an important role in our downfall to becoming more depressed as a nation than ever before. Since it hit the mass market at the beginning of the 21stCentury, media and technology as we know it has supported the cause for concern in paving the way for a closed off society. We are constantly stuck behind screens and, a lot of the time we feel more comfortable with sitting behind a computer or a smartphone to communicate and make connections with the world and others rather than meeting in person and experiencing life away from our devices. With media and the internet everything is at our fingertips within an instant, which has lead to our impatient personalities and unrealistic expectations of ourselves and others. It’s a world where we misperceive reality as what we see on our devices is far from the society we truly reside within.

My Experience: Depression is something that I experience often and having the condition means that some days I am capable of filling my mind with positivity and facing the world with a smile on my face, whilst other times I get stuck in a negative spiral where it’s a struggle to keep my head up and carry on. I’d be lying if I said it isn’t difficult to get out of the spiral of depression as I call it because it affects my ability to function at a cope-able capacity. Depression is also silent which means that for me, it can spring up and occur at anytime, anywhere. This can sometimes make it difficult to speak out or recognise if I am heading into a downward spiral of unhelpful emotions. But overtime I’ve been proactive in learning about some of the more prominent triggers that cause my depression and try to avoid them as much as possible, as well as some coping mechanisms to get through the difficult patches.

Oppressed

Have you ever been in a situation where you’ve wanted to share something about your mental health, your struggles, your anxieties and you get told to “sit down and shut up”?

With many people feeling unable to share how they feel due to outside influences and social stigmas; it can be difficult to find a voice and speak up when suffering.

This is oppression at its core.

Oppression does not have a set source, but it largely stems from the ‘unwritten rules of society’.

Conformity is not just appreciated but is expected as a ‘rule of thumb’ in order to live in a progressive, ordered and organised world. Anyone who breaks this rule by vocalising their concerns and struggles are considered as ‘rebels’ of the system who seek to cause havoc outside of the social norms. There are a multitude of ‘conformity’ issues within our world that increase tension amongst communities and make talking about our struggles a taboo topic especially amongst (but not limited to) LGBT+, Mens and Post-Natal and Students mental health.

Targeted support means that sometimes minorities seeking mental health support feel oppressed because there are not enough support services that offer tailored support to individuals who fit into these psychographics/demographics. This is largely due to stigmas, stereotypes and taboos.

My Experience: Oppression is something I have experienced a lot due to the complexity of my mental health diagnosis’. Fitting in has always been a challenge as my personality and style is not always accepted, and I have often found myself as an outcast, as one of societies rejects. I defy the stereotypical boundaries and outside appearances of what someone with ‘Depression’, ‘OCD’, ‘Anxiety’ and ‘Autism’ should behave like (Read my 10 things you should know about my Autism blog to gain more info into my disability). For a long time, I lived up to expectations of what conditions I had instead of accepting them for what they are and learning to shape my own story. By haulting my attempts to fit in, I’ve learnt to create my own piece of the puzzle of ‘life’ and by sharing my struggles and not feeling oppressed to conform to one way of thinking, I can be the person who I truly am.

Suppressed

Suppressed

Suppression manifests in mental health more than you might think. Some of the people who desperately need the support are suppressing their struggles. Many people supress because they’ve either been turned away from services for not being ill enough or are waiting so long for support that becomes ‘easier’ to push the emotions down and bury them under a ‘fake smile’ and ‘positive’ mentality.

Suppressing only leads to much greater difficulties and struggles in the future and with a lack of funding and 

My Experience: I’ve supressed a lot in the past for a number of reasons, butI’ve learnt to take matters into my own hands and discovered a number of coping mechanisms that help to ease my emotions.

Here’s some of the ways I’ve found are useful…

  • The Outdoors: Appreciating your surroundings
  • Exercise: Eases stress and anger out physically
  • Regular Chats: With your support network (friends, family, colleagues etc.)
  • Creativity: Express yourself through artistic ventures (Painting, Drawing, Writing, Photography)
  • Do something that challenges you every day: Moving through the anxiety one step at a time
  • Share out loud: Get your side of the story out there (Blogging, Speaking at Events, Networking)

There needs to be a drastic shift in how Mental Health is treated and discussed. It needs to happen fast. Something needs to change for the better.

Claudia

On My Way…

Travelling with Aspergers’ Syndrome

I love to discover new places and go on adventures, and having Aspergers’ Syndrome (a type of High-Functioning Autism) means that sometimes despite enjoying exploring my new surroundings, I find it can be difficult to support myself. This can occur in a variety of settings and situations when I am travelling around whether this be in my local area, venturing into unknown places, or just spontaneous adventures.

With Autism and learning disabilities becoming more acknowledged within society; a lot has been done to provide those on the spectrum with tools, systems and strategies to fight stigmas and allow the individual to have independence whilst travelling.

So, to the purpose of this blog…

To help those on the spectrum or those looking to support someone with Autism, here’s my guide to (English Based) transport services including Buses, Trains and the London Underground that may help to make travelling easier and more enjoyable!

Buses:

Buses are an important method of transport for many people living in both crammed inner-city and more rural, countryside locations. Conveniently located bus stops and regular services (usually, anyway) make it simple to travel to where you need to get to.

We all know that Off-Peak Bus Passes are given to the elderly and the physically disabled; but did you know that if you have an Autism Condition you could qualify to receive one too?

Local County Councils (some may vary, so check if you qualify) have been issuing bus passes to those who meet the criteria of:

You qualify for a bus pass in England if you have  “a learning disability, that is, a state of arrested or incomplete development of mind which includes significant impairment of intelligence and social functioning” (From: http://www.legislation.gov.uk/ukpga/2000/38/section/146)

If you meet this criteria (if you have a diagnosis of Autism by a GP, Psychologist or SEN worker) you will receive a bus pass that can be used at Anytime in your home county, and Off Peak (After 9.30am) in any other country across England.

My experience with Buses:

I cannot drive as I would find it too difficult to focus due to my sensory processing difficulties, so using the bus is a good option for me when getting around. My Bus Pass is really useful as I am able to travel independently and learn how to read maps, check-timetables and plan routes to get to destinations. It gives me the freedom to do my own thing and see new places.


Trains:

If you travel long distances, or need to get somewhere fast, trains are a convenient option. Many Autistic people find the motion of the train a lot smoother to buses (as buses can be bumpy and loud), so travelling by rail is sometimes the best way for someone on the spectrum to get around.

Alternative to a Bus Pass, if you qualify, you can choose opt for a Disabled Train Travel pass which entitles you to 1/3rdoff selected tickets.

My experience with trains:

Despite delays, changes to services and cancellations, I often use trains as they are a lot faster than buses when I need to get somewhere.I use trains frequently to travel home from University or to see friends who live further away.

London Underground: 

If you live or travel around or into London frequently, you will be aware of how cramped the tube can get (even during off-peak times). For someone on the Autism Spectrum, it can be really difficult to process the world around them, and using the tube can trigger meltdowns, breakdowns or sensory-processing overloads. To combat this and to help those with Autism or who stay find it difficult to navigate their journey; London Underground offer ‘Please Offer Me A Seat” badges to anyone who has a disability or medical condition, is pregnant, is elderly, or are less capable of standing.

It is free to apply and you can do so on the Transport For London (TFL) website at: https://tfl.gov.uk/campaign/please-offer-me-a-seat

My experience with the London Underground:

When travelling on the underground I wear my badge either on my person or on my bag, so it is visible to other passengers. Often people notice the badge and offer me a seat so I can feel comfortable as I get shaky or panicky when in busy crowds and find it hard to stand-up. Although the badge doesn’t guarantee I get a seat, most people when I ask are than willing to give up their seat.

I often have experiences though that can be really difficult for me to handle, where people have mocked me or looked at me with disapproval because I physically look able to stand. This is hard for me to process and I often have to explain to commuters that I have a hidden disability. Just because on the outside I look capable, doesn’t mean that I don’t have a disability that affects me on a daily basis.

General Tips for travelling if you are on the Autistic Spectrum

Here’s some of the things I personally find useful when travelling…

  • Have a plan of your route memorised or written down: This can help you stay focussed during your journey and can make it easier to communicate with people if you are lost.
  • Have a back up plan or alternative route: If something goes wrong, you have a back up plan in place (I always try to have some cash on me, or have a friend or family member on stand-but when can give me a lift to my destination or pick me up).
  • Always bring water with you. Sometimes it can get busy, cramped and temperatures can rise, so stay hydrated!
  • If you have an iPhone, use Medical ID on your home screen: This is a really great feature that Apple have developed for their smartphones. It allows you to manually enter medical information such as Blood Type, Medical Conditions and Emergency Contact Details that are easily accessible for anyone who picks up your phone. Emergency Services are aware of this feature so if you are ever in a crisis and find it difficult to communicate. You can provide them with your information so they can support you in the most convenient way.
  • Find a distraction. Whether listening to music, reading a book, having a moment of mindfulness… it’s good to have something to keep yourself occupied or a task to focus on whilst on your journey. This can reduce anxiety and helps with building concentration skills. 
  • Most importantly… Have Fun!

So go out there and be proud of travelling and seeking new adventures, creating new memories and having amazing life experiences!

Claudia

(Note: All information gathered is correct at time of blog publishing.)

Autism Spectrum. Stigmas? Smash Them.

10 things you should know about my Autism Spectrum Disorder.

There are so many stigmas and stereotypes surrounding disability and mental health knocking around within society today, especially Autism.

I got my official diagnosis after dealing with many mental health difficulties and a stay in a psychiatric hospital. I received the diagnosis of having a High Functioning Autism Spectrum Disorder condition, formerly known as Asperger’s Syndrome…

…And I’ve found a really captivating way of describing my Asperger’s’ is using what the National Autistic Society say, and they say that: “People with Asperger syndrome see, hear and feel the world differently to other people”.

So, on that note; and in response to Autism Awareness Week 2019; here’s just 10 of the things that I’d like to clear up about my specific disorder.

(Just for a bit of background, a little while back; I conducted a survey where I asked the general public about some of the things that first come to their mind when they think of the word Autism- and this has formed the basis for some of the points I’ll be making in this blog.)

(1) It’s not a disorder, it’s just a reordering of my life

My Autism means that I process things in a diferrent way, and we all have our own individual ways of doing things. My order of doing things means that sometimes it can be really difficult to adapt to new environments and situations if I already have a routine or a process thought out in my head, and this can be a challenge, but it also makes each day exciting and diferrent to the last.

(2) Just because I am verbal, doesn’t mean I am not Autistic.

There has been a lot in the media with portrayals of those on the Autism Spectrum as being non-verbal and using hand gestures or vocal ticks to communicate. Although there are many people on the spectrum who are not verbal, I see myself as extremely lucky to be able to communicate through words. It can be difficult at times to find the words to express myself and communicate, but I find using an online thesaurus or a word chart of which there’s some amazing ones out there can really help me to pinpoint how I am feeling and make it easier for me to say what I need to say.

(3) I don’t have a special talent, but that doesn’t mean I am not Autistic.

You know, a lot of stigmas have been circulating around those with Autism as having an acute ability or special talent but for a lot of those with Autism, including me; we don’t have a hidden talent. We are just like you, and want to feel that way.

(4) I don’t have a sixth sense, but that doesn’t mean I’m not Autistic.

At times I would love to be able to see through walls or have super accurate hearing, I don’t, and I never will. I have the same amount of senses as the regular person. My senses just work differently. Some people on the Autism Spectrum also have a condition called Synaesthesia, and for me this means that I see sound visually as pictures, colours and shapes. With so much stimulus in the fast paced and bustling world, especially living in a big city where its constantly go-go-go 24/7; it can be tricky to cope at times. One way I’ve learnt to manage this is by conducting my brain to block and filter out what’s not important by prioritising and focussing my attention on what I need to do.

(5) I don’t want any special treatment because I have Autism.

We all need support no matter if you have Autism or not, and it can sometimes be quite tricky to work out how much support each individual requires. My support I think comes in the form of sharing my story and being open about the difficulties I face. Also, for me, I tend to focus on what I can achieve as oppose to what I maybe cannot or will never be able to achieve. I don’t want to feel like a sob-story that people feel sorry for me, or see me any differently, and many people with Autism also feel like this. People say a lot of the time all over the world that those with learning disabilities should be integrated into society and accepted. I believe one of the best ways of doing this is to treat those with Autism such as myself just like anyone else you come into contact with, as an average human being.

(6) I do feel emotions, and I do have Autism

People with Autism express their feelings in diferrent ways, and for me personally; it can sometimes be a challenge, but it’s so important I believe for people to remember that those with Autism do have feelings- we just need to be given the time to find methods of exploring our emotions that work for us. For some people with Autism they let their emotions out through creative methods such as music, art and movement; and for others they do so by talking. For me, I use a mixture of blogging, podcasting, multimedia design and public speaking. But every person is diferrent, and no way is wrong.

(7) I can’t be cured of my Autism

Autism is an example of a neurodivergent disability, and it cannot be cured no matter what experts say. However, it can be managed. I can condition my thinking and massage my brain into surviving in society, but it won’t magically disappear overnight. For some people medication can help to soothe the situation many with Autism face, and for others a mixture of therapy and intervention from support workers can help to aid their reconditioning. For me currently, after having a mixture of these in the past, I currently find that what helps me is sharing my story with others and inspiring the world to embrace Autism as oppose to disregarding those who have the disability.

(8) I can live an independent and fulfilling life if I am Autistic

This is something I actually hear quite a lot of the time, and i think it stems back to what is portrayed through various media platforms; where everybody with Autism either needs round the clock care or may be uncapable of living independently. Whilst a large number of those who do have an Autism Spectrum Condition do need this kind of support and are dependent on others to live and thrive; to put it bluntly, this simply isn’t the case for everybody. I see myself as an example of how a person who has Autism can thrive and live independently, I go to University, I cook and clean for myself, travel all over the place by myself, and you know, the list can go on and on and on. And a lot of people are very similar to me. I think it’s really important to remember that even though I am able to live independently and cope as well as I can; everybody with or without Autism needs a support system in place for if and when they may struggle.

(9) If I am Autistic, I must be an introvert and a loner

For the most part, I am an introvert and like spending time by myself; but so do a lot of people who maybe have or don’t have Autism too. I love being surrounded by people and have friends I can chill and meet up with, and I love getting out into the world sitting in coffee shops doing work. You know getting out into nature taking photos, going swimming and cycling and creating art in remote locations. Getting involved and networking with some amazing Motivational Speakers and Mental Health Advocates is also really important for me, and it helps me to get out into the world and make an attempt to thrive in my surroundings.

(10) If I am Autistic, I just cause problems

Honestly when I hear this, and I hear it a lot more often than you might expect, it really doesn’t surprise me anymore, because I believe that those who think like this and who have this mentality are the real problem, not those us with Autism. One of the causes of their thinking I believe is a lack of awareness and understanding. And maybe one of the ways we can break the stigmas surrounding Autism could mean having direct conversations with those who have these opinions; is to give them the opportunity to ask the questions and for them to receive open and honest and direct answers from those the condition affects. There will always be people who feel like this though; but maybe by stepping up more and doing this; people will think twice and feel more comfortable with understanding and accepting Autism, for what it is, and not what it is not. I think that this goes for any kind of issue in society today you know, Mental Health, Disability, Race, Religion, Gender and Identity, and it’s important to create these open spaces whether virtual within the media or face to face places to show that it’s okay to talk and share.

So… there’s my 10.

To wrap up this blog; I think it’s really important to remember that when it comes to Autism, each person has their own relationship with their condition, and the support they require will inherently vary.

For more information on Autism, there are some great websites out there such as

www.autismspeaks.org

www.autism.org.uk

I hope this blog has been a little bit of an insight into my Autism; and how you may be able to support those who have Autistic Spectrum Disorders.

Claudia Van-Nimwegen

Procaffeinating

The subtle art & addiction of getting shit done.

People always ask me; why do you spend so much time in coffee shops?and How do you manage to do so much sat behind a desk?

The reason why…

It’s all a form of inspiration.

Rocking up at any cafe, bar or bistro at whatever time of day (there are some great ones in both Central London and Brighton that are open right up until 10pm), I see all kinds of people, all kinds of cultures, and all kinds of life. It gives me inspiration to invest in myself, to become the person I want to be, the person I deserve to be.

Even though I may look like bit of a mug (pun intended) sat in a coffee shop for 6 hours…

I get shit done.

Maintaining an ‘everything in moderation’ mentality, and getting the balance right.

So… Its 10 am and I’m sat in a coffee shop somewhere in Central London…

Laptop. Coffee Mug. Notebook. (Check.)

Shit to do?: Yes.

Ready to do work?: Nah.

When I’ve got a long list of things to do; I find myself procrastinating, telling myself “I’ll get that done later”. But…

Prioritising is paramount to heighten your performance.

What helps me to stop procrastinating and to perform better (whether it be in my work, my studying, or in my personal life); is to prioritise. And; there are many ways to do this.

  • Prioritising can be as simple as writing a list with the most important at the top, and the stuff that can wait for a bit at the bottom.
  • Prioritising can be setting yourself aside 20 minutes every few hours of intense work to take rest breaks.
  • Prioritising can be setting your phone to silent every now and again to allow yourself time to connect with yourself instead of through posting, liking and taking selfies.
  • Prioritising can be scheduling down-time for a catch up call or coffee with a friend.

So remember, wherever or whenever you decide to get shit done, go at your own pace. You deserve it.

Forever Alone… (Gladly)

Valentines Day 2019:Being Asexual, relationships and doing what YOU love.

I’m asexual, and so is about 1% of the population of not only the UK but the whole world. So yes. We do exist. We aren’t a myth. But let’s clarify one thing about the term asexual…

For me, I see myself as an Asexual individual who doesn’t want any relationship with a significant partner, either sexual or purely platonic; no dates, no romance.

“But you’ll change your mind!”

“Maybe you just haven’t met the right person yet!”

“How do you know if you’ve never ‘tried’?

To this I say…

Thank-you.

Thank-you for telling me what I already know; yes I don’t want a relationship. No I am not looking. I am comfortable in turning people down; ironically- it’s something I’ve had to do a few times.

“So, do you love at all?”

Besides coffee (as I sit here writing this with an espresso in hand); the answer is yes. I do love. I love that little 4 letter word…

Life.

The possibilities. The adventure. The thrill of waking up in the morning and not knowing what will happen. The suspense where I find myself at the brink of exploration and new discoveries, excited who or what I’m going to share my creativity with and to learn from. Taking a leap forward into life. Leaning into life and learning from life as I live. Just living.

I’ve changed a lot.

It hasn’t always been like this… 5 years ago I really didn’t love life (as I talked about in Episode 1 of the Spectrum Series Podcast).

To think back and ponder on that state of mind I was in at that time, I didn’t love anything but the detrimental distractions stopping me from seeing anything but loss. Losing my mind, losing everything I’d ever done, and ultimately, losing my life. I felt like my relationship with the world was so distant.

I realised that it’s okay not to be okay. It’s okay to enjoy things that others may not. It’s okay to be you.

If I can love what I do; I’ll live loving life and have a relationship with the world that I can share the positivity through in a kind of platonic partnership with everyone in society. As a game-changer, as an adventure seeker, and as a worthwhile individual amongst society.

I’ve got to love myself for anything to change. For the world to change surrounding stigmas. For everybody to have a voice.

You can only be you.

Because you can’t change other people; you may be able to massage and make tender certain emotions, or situations, but at the end of it all; it’s up to the individual to shape their own journey.

Really, love is what you make of it. It’s you, knowing you, and accepting yourself for who you are.

So…

Love yourself. You’re worth it.

The Blabbermouth Blog: (‘Time to Talk Day 2019’)

The power of words.

Being a verbal, Autistic individual has its ups and downs (just like my coffee: whether it’s the 8am Espresso rush or the 2pm hot-desking Latte).

People say I’m a blabbermouth as I never stop talking; and other times they say I shy away and need to talk more…

What do I make of this?… Honestly I’d say I’m both!

I’m lucky to be verbal and able to communicate using words and spoken language. But many individuals on the Autistic Spectrum are non-verbal and use gestures, movements and noises to communicate with the world.

Why is talking so important in todays society?

Silent but deadly…

During the darkest times; I had real trouble in speaking up and sharing how I felt with the world. I wasn’t sure how to ‘reach out’ to gain support.

I put up a wall, a hard exterior where the silence kept people out, and kept my emotions in.

The wall comes tumbling down…

Through my admission in the psychiatric hospital; I learnt ways to slowly break down the wall I had built around myself. With the foundations so strong; it would be a challenge for me- but I was determined to try.

“I learnt that letting it out doesn’t have to leave a scar and letting people in doesn’t mean I have to break the whole wall down.”

Some of the ways that helped me have been:

  • Recording myself speaking (then listening back and reflecting)
  • Writing Slam Poetry
  • Using a ‘Feelings Wheel’ (This is a great one!: http://feelingswheel.com)

I realised that I didn’t have to break down the whole wall, but I could etch out windows and doors to provide a way for me to reach out and for people to step in.

Sharing is caring… (But when it comes to coffee; I don’t share. Not ever.)

Cliché, I know; but it is true. When you are able to share openly- it eases the tension and allows others to support you, and for you to support yourself.

It’s ‘Time to Talk’… It’s time to speak up and speak out!

“Time to Talk Day 2019 is taking place on Thursday 7 February. However you do it, make a conversation about mental health.” (Find out more: https://www.time-to-change.org.uk/time-talk-day)