Tag: Autism

Crip Monologues Project: A Writer’s Journey to Recognition and Inspiration

So back in November I spotted a Facebook post which mentioned that CRIPtic Arts in London were looking for writers for a project named the Crip Monologues.

Writers were invited to pitch ideas at the CRIPtic team and from those pitches 12 would be chosen to develop a script for a 10-15 minute monologue, with the subject being scrutiny; people who are stared at when they enter a room or go shopping; people who look different to the “norm”.

I was one of the 12 commissioned, which was obviously exciting for me, and I quickly had to learn how to write a script, having never done this previously. The commission for this piece was paid into my bank a few days after completion and that then made me officially a paid writer. For the first time in my life someone saw value in my writing! This has reawakened the buzz inside of me to get a book finished and out there. I believe the Crip Monologues will be performed this year (2024.)

Meet the writers:

Riding the Waves of Motivation: Staying Afloat on Off Days

The Highs of Motivation

We’ve all felt it — that surge of energy when motivation courses through our veins. It’s the fuel that powers us to tackle our goals, the wind in our sails pushing us towards success. On these days, we’re unstoppable, checking off tasks with a vigour that seems to come from a boundless well.

The Lows of Demotivation

But then, there are the other days. The odd ones where that well of motivation seems to have dried up overnight. We wake up feeling like we’re wading through treacle, every task an insurmountable mountain. It’s normal, yet it can make us feel isolated, as if we’re the only ones struggling while the rest of the world charges ahead.

Understanding the Cycle

It’s crucial to recognise that motivation isn’t constant; it’s a cycle. Like the ocean’s tides, it ebbs and flows. Accepting this can be liberating. It means that feeling down or unmotivated isn’t a failure — it’s part of the human experience.

Strategies for the Low Days

So, what can we do when motivation is scarce? Here are a few strategies:

  • Start small: Tackle the smallest task on your list. Completing it can give you a sense of achievement and might just kickstart your engine.
  • Seek inspiration: Sometimes, we need external sources to light our internal fire. Read a book, listen to a podcast, or watch a TED talk — anything that resonates with you.
  • Connect with others: Reach out to a friend or colleague. Often, just talking about our lack of motivation can help dissipate it.
  • Be kind to yourself: Remember, it’s okay to have off days. Be as compassionate to yourself as you would be to a friend in the same boat.

Embracing the Journey

Motivation is not just about the highs; it’s about learning to navigate the lows. It’s about understanding that our worth isn’t tied to our productivity on any given day. So, on those odd days when you’re feeling down, remember that the tide will turn. The key is to ride the wave, not fight against it.

Interoception: The Inner Sense That Shapes our Experience

Introduction

Along with alexithymia, my autism diagnosis also made me aware of my lack of interoception. This has been a lifelong issue for me.

What is Interoception?

Interoception is our ability to perceive and interpret signals coming from within our own bodies. It’s an internal sense that informs us about the physiological state of our body, such as hunger, thirst, temperature, and internal pain. This sense can be both conscious and subconscious, and it plays a crucial role in maintaining homeostasis and facilitating self-awareness.

The Causes of Interoceptive Dysregulation

Interoceptive dysregulation can arise from a variety of sources. It’s often associated with mental health conditions like anxiety, depression, panic disorder, anorexia nervosa, bulimia nervosa, PTSD, OCD, ADHD, alexithymia, somatic symptom disorder, and illness anxiety disorder. Misrepresentations of internal states or a disconnect between the body’s signals and the brain’s interpretation of those signals are suggested to underlie these conditions.

Treatments and Techniques for Managing Interoception

Several approaches exist to enhance interoceptive awareness and regulation:

Mindfulness and meditation: These practices can enhance one’s awareness of bodily sensations and help regulate emotional responses.

Talking therapies: Cognitive-behavioural therapy (CBT) and other psychotherapies can assist individuals in better understanding and responding to their interoceptive signals.

Interoceptive training: Specific exercises that focus on recognising and responding to internal bodily sensations can be beneficial.

Aligning dimensions of interoceptive experience (Adie): A novel therapy that involves interoceptive heartbeat training to align interoceptive experience.

Conclusion

Interoception is a vital but often overlooked aspect of our sensory experience. By understanding and managing our interoceptive signals, we can improve our emotional regulation and overall mental well-being.

Understanding Alexithymia: The Challenge of Emotional Blindness

Introduction

In my autism diagnosis journey, and after several sessions meeting other autistic people through the National Autistic Society for Scotland in their Embrace Autism group sessions, I have come to realise that I can’t, and have never been able, to pinpoint what I’m feeling (emotionally) at any given time. This is a condition linked to autism that is named Alexithymia.

What is Alexithymia?

Alexithymia, often described as “emotional blindness,” is a condition characterised by difficulty in identifying, expressing, and describing emotions. It’s not just about being less emotional; it’s about having a hard time understanding what you’re feeling at any given moment. People with alexithymia might find themselves confused when asked how they feel, or they may struggle to recognise the emotions of others.

The Roots of Alexithymia

Although not fully understood, the causes of alexithymia could be influenced by genetics, brain structure, and early life experiences. Some studies suggest it could be related to damage in the insula, a part of the brain involved in empathy and emotional awareness. It’s also associated with various mental health conditions, including depression, anxiety, and autism spectrum disorders.

Living with Alexithymia

For those with alexithymia, everyday interactions can be challenging. They might appear distant or uninterested because they don’t express emotions in a typical way. This can lead to misunderstandings in personal relationships and difficulties in social situations.

While there’s no specific treatment for alexithymia, therapy can help improve emotional awareness and expression. Techniques like cognitive-behavioural therapy (CBT) and mindfulness practices can assist individuals in better understanding their own emotions and the emotions of others.

Conclusion

Alexithymia is a complex condition that affects how people perceive and express emotions. By recognising its presence and understanding its implications, we can create more supportive environments for those who experience the world differently.

Presuming Competence in Autistic People

How to Presume Competence Without Dismissing Disability Support Needs.

Autistic Social Hangovers

Autistic Social Hangovers

What is autism and how does it affect people?

Autism is a lifelong developmental disability that affects how people communicate and interact with the world. It is not an illness or disease, but a different way of thinking and processing information. Autism is also known as autism spectrum disorder (ASD) or autism spectrum condition (ASC), because it covers a wide range of abilities and challenges.

According to the National Autistic Society, more than one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK. However, this number may be higher as many autistic people may not have been diagnosed or identified yet.

Autism is a spectrum condition, which means that every autistic person is unique and has their own strengths and difficulties. Some autistic people may need a lot of support in their daily lives, while others may be able to live independently. Some autistic people may have learning disabilities, mental health issues or other conditions, while others may not.

There are some common characteristics that autistic people may share, such as:

  • Social communication and interaction challenges: Autistic people may find it hard to understand and use verbal and non-verbal language, such as gestures, facial expressions and tone of voice. They may also struggle to make eye contact, initiate and maintain conversations, or take turns in speaking. They may prefer to communicate in different ways, such as using pictures, symbols or sign language.
  • Repetitive and restrictive behaviour: Autistic people may have a strong need for routine and predictability, and may get upset by changes or unexpected events. They may also engage in repetitive actions or movements, such as rocking, spinning or flapping their hands. They may have highly focused interests or hobbies that they are passionate about and want to share with others.
  • Sensory differences: Autistic people may experience sensory input differently from other people. They may be over- or under-sensitive to sounds, lights, smells, tastes or touch. This can affect how they cope with everyday situations, such as crowded places, bright lights or loud noises. They may seek out or avoid certain sensory stimuli to regulate their emotions or cope with stress.

Autism is not something that can be cured or changed. It is a part of who a person is and how they see the world. However, with the right support and understanding, autistic people can live fulfilling and meaningful lives.

If you think you or someone you know could be autistic, you can find out more about getting a diagnosis and where to get support from the National Autistic Society website.

My Journey to my Autism Diagnosis

On Tuesday, March 29th, 2022, I was diagnosed with an Autism Spectrum Disorder by a Psychologist working in our great NHS.  A diagnosis of autism doesn’t come easy.  There are currently no blood tests, urine dips, or imaging techniques that can detect autism.

My journey started in August 2021 when I was hospitalised with COVID for a period of around 10 days.  The consultant treating me asked me one morning if I’d ever been assessed for an autism diagnosis, which I hadn’t.  Here I was, a 44-year-old man, with a long professional career, being asked if I had been assessed for a condition that I thought only affected kids.

The consultant put in a referral to the local autism assessment service and gave me a questionnaire which I now know was the AQ10 – Autism Quotient 10.  It’s a screening tool to see if a full assessment is warranted.  Out of the 10 questions, I scored 9, which shows that the person taking the test is highly likely to be autistic.  I also had a questionnaire for my mum to complete.

Having completed these questionnaires, they were posted back to the assessment service, and I waited.  Eventually, I received a phone call from the doctor at the assessment service with some more questions, and told me she would need to speak with my mum about what I was like as a child.  I gave her my mum’s phone number and waited again.

The call to my mum was made in January of 2022.  I was not made aware of what had been discussed, and at the time of writing, I have not received the report from the doctor.  I now know this was called an ADI-R which is a structured interview and took 2 hours.

Following this, I was called into the assessment service for a face-to-face appointment to carry out an assessment named ADOS-2 module 4, the ADOS assessment for adults who are fluent speakers.

At this appointment, I performed several tasks in front of 2 psychologists who observed me very closely.  During these tasks, the doctor with me attempted to spark a conversation and I don’t know how I did but I’ve never been one for small talk, it’s a struggle to hold a conversation unless it’s about a subject I know about.

One of the tasks was to tell a story and the doctor handed me a picture book full of frogs that fly on lily pads.  All I could do with that was tell the doctor what was happening on each page and noted the very precise times on the left-hand pages which were blank except for the times.

Another of the tasks was to choose some items from a bag of toys and tell a story using them.  At the time I’d just had a horrible car accident that involved a large bull in the middle of a dark country road and just around a bend.  As I rounded the bend, doing no more than around 30-40mph, I came into contact with the bull and he wrote the car off.  According to the ambulance crew, I was lucky to get out of the car alive.  Back to the assessment, the items I chose were a toy car, a pair of glasses, and something else, a large thing, to represent the bull. I re-told the story of my crash.

After all of this, I went home and waited a couple of weeks for a results appointment, which confirmed what I had suspected since the consultant at the hospital had asked me about autism.

At present, I’m waiting for the report from the assessment service.  This diagnosis has made sense of so much of my life.  Behaviours, meltdowns and shutdowns, masking, and over-sharing, which I’ve always done.

So, I’m autistic.  I’m with the camp that say it’s not a disability and is instead the way our brains are wired which is different from neurotypical people.

Coming to Terms With my Autism Diagnosis

Just over 2 weeks ago I was diagnosed as being autistic. While this wasn’t a huge surprise it still came as a shock. It also explained a lot of things in my life, things that have happened and my reactions to them, things I’ve done and times when I’ve misunderstood what’s going on.

Now I find myself wondering if some incidents in the past have been autism related. For example at work I’ve found myself shouting at my manager twice. Frustration turned into anger and while I knew at the time what was going on, I was powerless to stop it. It was as if I was a spectator. It also wasn’t me. I’m one of the most placid, calm people I know. Of course when those incidents occurred I didn’t know I was autistic.

I hate small talk. Whether in written messages such as emails or instant messages or verbally, I am rubbish at it. I’m also useless at starting a conversation, even with people I know well.

I can’t do subtext. I take everything literally and a former partner had to explain when she was joking or being sarcastic about something. This has a large impact on my life because neurotypicals tend to speak in subtext most of the time, never directly saying what they mean.

Another thing I have issues with is knowing how I feel. This applies to both physical feelings such as hunger, thirst and types of pain as well as emotions. I now know this is an autism thing called Alexithymia. It’s not a diagnosis in itself, it’s more of a symptom. This leads to problems when seeing a physician and they ask what type of pain I’m in; I can’t answer because I simply don’t know.

With the emotion thing, I don’t know how to explain how I feel if someone asks, so I always give the stock answer that I’m ok, even when I’m not, but can’t explain how I am actually feeling.

Eye contact is a very common symptom of autism, and it’s something that I struggle with, when I’m talking with someone face to face I tend to look over one of their shoulders instead of making direct eye contact, which is way too intimate.

I also get very anxious about having to change a routine or an arrangement, for example I have a morning routine and if I get anything in the wrong order it upsets me and makes me ver anxious. If arrangements/plans are changed it causes anxiety. Finally for now, I am rude. Let me explain; I don’t know when to enter a conversation and am tactless, I say things as I see them rather than skirting around the way neurotypicals do.

These are just some of the issues I have and now I have a name and a reason for those. It’s reassuring to know there are a lot of people going through the same issues themselves.

I’ve come to terms with my diagnosis. It is what it is and it makes me, me. Sometimes it causes problems in life but, on the flip side, it also enables me to see things that others miss, to see things differently with a unique perspective. I spot and remember car registration plates and can instantly recall when and where I’ve seen a particular car previously. This isn’t something I “do” as such, it just kinda happens automatically, or autistically, if you will.

Now that I know the cause of so many problems I’ve had in the past, I can move forward with that knowledge and hopefully understand more about my life.

Autism is part of me. My brain is wired differently to the majority of people and that’s ok. I think. I’m only 2 weeks in, I’ll have to come back and revisit this in 2 years maybe.