Understanding Anxiety

 

My autistic brain likes to research. I have an almost pathological need to understand things. I can’t take things at face value, I must dig deeper. So, I have an anxiety disorder and in true ‘me’ fashion, I have to know why.

I’ve spent 49 years living with anxiety and the last eight years researching it. I don’t know what it’s like not to have anxiety on some level. I think I came out of my mother’s womb hyperventilating, but having anxiety and understanding it are different things.

I understand anxiety.

I understand panic disorder.

Knowledge is power.

So, the educational stuff..

The Cortex (or Tex because I like to give things names)

Tex is the thinking part of my brain. He’s what makes us human, able to reason and know when some chancer has short-changed us. It’s also where we develop negative thoughts and irrational thinking. This is cortex based anxiety.

Tex is a good bloke but sometimes he gets overwhelmed by the volume of negative self-talk we throw at him with the ‘I’m a shit person’ and the ‘What if’s?’ These negative thoughts repeatedly trigger the fight or flight response which releases stress hormones into our bodies. We have lots of uncomfortable physical symptoms, then we worry that we have a life threatening disease. When this happens, we have become mentally ill.

Simplified: Tex thinks.

The Amygdala or Amy for short. (see above)

Amy is small, almond shaped and responsible for the response and memory of emotions, especially fear. She is also the reason humans don’t become extinct because: No amygdala = no fear = extinction. Whenever your flight or flight is triggered, that’s Amy doing her stuff.

Amy is responsible for phobias. The reason I break out into a cold sweat when I clap eyes on a spider is because I found one crawling around in my nightie when I was five years old..

I SCREAMED THE HOUSE DOWN!

Amy remembers this event so every time I see one of the eight-legged motherfunglers, my heart starts banging like an old barn door in a gale, ya get me?

I have bad dreams every night and wake up in a state of anxiety because my fight or flight response has been triggered by my subconscious. This is amygdala based anxiety.

Simplified: Amy reacts.

Some people have cortex based anxiety. Some have amygdala based anxiety. Some unfortunates have both.

I have both.

My physical symptoms have given me cause to imagine the very worst is happening to me, as in terminal illness instead of anxiety. This is cortex based anxiety. Basically, one of Harry Potter’s Dementors has Tex in a choke hold and is draining all the happy from him. How’s that for an analogy?

Every night my Quentin Tarantino-esque dreams prompt Amy to leap into action, cape and all. She’s literally a super hero trying to save my life. Only, she doesn’t understand that the ‘danger’ to my life is a harmless dream – not an axe murderer making his way up the stairs..

None of this is Amy’s fault. She is trying to keep me safe. She must be knackered though. I know I am. Therefore, changing how I think is necessary if I want to control my anxiety instead of it controlling me. Note I say ‘control’ as opposed to ‘cure’. I have to be realistic here. I’m autistic and the autistic brain is prone to anxiety. I’ve always been anxious and, failing a lobotomy, I always will be.

Changing how we think is important but there are other things we can do to take back some control. The first thing is to understand the stress response and how relaxation can reverse, or at least improve it.

The Sympathetic Nervous System (SNS)

  • The sympathetic nervous system is part of the fight or flight response.
  • Adrenalin and cortisol are released.
  • Heart beats faster.
  • Blood pressure goes up.
  • Digestive system slows right down.
  • We experience trembling, sweating or chills.
  • The urge to open our bowels or have a wee (because needing a poo isn’t helpful when we need to run like buggery or punch a mugger in the face, right?)

When SNS kicks in, the amygdala has been activated. Remember, Amy doesn’t know if you are in danger of being run over or if it’s merely your thoughts that are asking her to step up and save your life.

The Parasympathetic Nervous System (PNS)

  • Heart rate slows
  • Blood pressure lowers.
  • Gastric juices increase enabling digestion.
  • Breathing slows down.
  • Body temperature returns to normal.
  • PNS is the body returning to normal.

We need BOTH responses to live. It’s just a question of balance.

Research shows that doing deep breathing exercises, mediation and relaxation exercises helps to activate PNS. If you do relaxation exercises regularly it’s possible to stop your amygdala from responding to your thoughts as if they are a threat on your life.

If your anxiety is cortex based, you need to work on your thoughts.

Things you can do include:

  • Writing your thoughts down.
  • Try and look at your situation in a different way.
  • Do what makes you happy.
  • Avoid people off who make you feel like crap. (If you are in the quicksand, you want someone who will lift you out, not push you down even further.)

If your anxiety is amygdala based, relaxation therapies are the way to go.

Relaxation therapies include:

  • Yoga
  • Guided meditation
  • Progressive muscle relaxation
  • Deep breathing exercises
  • Mindfulness

Any of these therapies will help with anxiety but you have to be prepared to put the effort in. It won’t happen by itself. The beauty of breathing exercises is that they can be done anywhere and nobody will know you are doing them except for you. Also, progressive muscle relaxation will teach you exactly where you hold tension in your body. For me, it’s my jaw, shoulders, stomach and, believe it or not, my arse.

Moving on..

Breathing..

We need to breathe or we die. Simple.

Anxious people don’t breathe properly. They breathe so shallowly that they hyperventilate which causes a whole load of unpleasant symptoms.

Learning to breathe properly is probably the most valuable thing we will ever learn.

Try it when you feel stressed.

Take a big breath in.

Feel your diaphragm expanding.

Then let it out s l o w l y.

Do this another three or four times.

If you’ve done it correctly your heart rate will have slowed down a little and you will feel calmer.

If you do nothing else, learn to breathe properly.

When it comes to therapies find what works for you but be consistent.

I find it helpful to acknowledge when my thoughts are turning funky and to do my breathing exercises.

It slows my heart rate down.

It calms me.

It stops Amy from launching into action.

I tell her, ‘Stand down, Amy. It’s just my crazy thoughts. Go wash your cape or something.’

To summarise: Anxiety is truly horrible, but understanding how the body works takes away the fear of the fear. Once we understand how our thoughts affect our body we can work towards a more manageable level of anxiety. Be realistic. If you’re autistic, you’re always going to exist in some level of anxiety because it comes with the territory but I’d take manageable over full blown panic any day. How about you?

Most importantly, breathe.

Breathing
(Out, in, out, in, out, in) ~ Breathing ~ Kate Bush

 

 

Highly Functioning?

I am a wife and the mother of three children. I’ve had numerous jobs, therefore I am what’s referred to as ‘highly functioning’ and if you stick around I’ll tell you why this term gets on my ‘highly functioning’ tits.

You see, some people question the authenticity of people’s ‘autism’ if they’re nothing like their sister’s mate’s autistic cousin or the savant brother of Charlie Babbitt in the infamous movie Rainman. And the problem isn’t only with NTs because I’ve had the immense displeasure of communicating with a member of the Autistic Dark Web who stated that a person cannot be autistic if they’re married, have kids or can hold down a job for longer than an hour.

Well, I am autistic and I am all of above things. Well, I don’t work now cus I’m mentally part-cabbage and my body is decomposing at an alarming rate, but, yeah, I’m a wife, I have children and I’ve had numerous jobs.

But here’s the thing..

I masked throughout school.

I masked in order to get a boyfriend.

I masked in order to get a job.

I masked in order to get married.

I masked all the way through parenting my children.

I masked until mental illness stripped away my ability to do so.

Masking requires a great deal of mental and emotional effort and another problem with masking is that the lines between what’s ‘you’ and what’s not you become blurry until you lose yourself completely.

Masking is stressful, which means that stress hormones are constantly released and this has a direct effect on the mind and body. To the onlooker, it might look like a person is handling a situation well enough but inside is a different story and it’s a very physical experience as well as mental. Ability to function varies on a daily (sometimes hourly) basis and in my case that was always to do with anxiety levels. Now it’s anxiety levels and chronic illness which dictate whether or not I can walk the dog or go to the shop.

When an autistic person keeps pushing through mental and physical exhaustion, day after day, there comes a time when the body says, ‘Nope. Can’t do this anymore.’

This is when an autistic person breaks down.

When you say someone is ‘functioning highly’ you are belittling the effort it takes to exist in this world, let alone, thrive. You show me a ‘highly functioning’ autistic person and I’ll show you a human being who is pushing themselves at full throttle in order to get through life and if the brakes haven’t slammed on already, they soon will, and when that happens they will struggle to function at all.

NERVOUS BREAKDOWN

ANXIETY DISORDERS

OCD

EATING DISORDERS

CHRONIC ILLNESSES (FIBROMYALGIA, ME, AUTOIMMUNE CONDITIONS ETC)

DEPRESSION

INSOMINA

PAIN

IBS

These conditions tell a story. They are a direct result from years of masking and trying to cope. The above applies to me but they apply to a lot of autistic people, especially my generation because we had to try and survive mainstream education (where bullying was still seen as ‘character building’) and life thereafter with no support whatsoever. It took me 41 years to breakdown and when I did it was catastrophic.

Is this highly-functioning?

The term ‘highly functioning’ implies that something is done super well. It has almost heroic connotations. The state of my mental and physical health and that of many (if not most) autistic people over the age of 40 strongly suggests that this is not the case and I definitely don’t own a cape! And how about my anxiety is so bad that I go non-verbal? Is that functioning highly?

Autistic people do not function highly. We function in chronic states of anxiety until our nervous systems malfunction and we burnout. Can you imagine how belittling the term ‘highly functioning’ is to those of us who have literally been broken down by the exhaustion of trying to cope?

It’s not about whether or not an autistic person can physically do something, it’s how they do it that makes the difference. If an autistic person can make a phone call but it involves using scripts and having to psyche themselves up for hours, then feeling exhausted afterwards – that’s not functioning highly, is it?

If an autistic person can go to work but requires anti anxiety medication in order to do so – this is not functioning highly.

If an autistic person panics in unfamiliar situations and emergencies – this is not functioning highly.

If an autistic person relies on people for practical support – this is not functioning highly.

I can drive, so people presume I’m ‘highly functioning’, but it’s not that simple.

Learning to drive was hard because I have Dyscalculia and problems with verbal instruction, however, my fear of public transport gave me the determination to drive and I passed second time. Journeys have to be planned and I need somebody to take me to unfamiliar places first. When anxiety is too high, I can’t drive. I can’t get in the car, let alone drive it. I have a mental breakdown if someone asks me for a lift. I drive to the same places and park in the same bays and it bothers me if I can’t. I’ve never taken a car for an MOT (or through a car wash) and these days I hardly drive at all because of concentration issues. But, I can drive a car..

This isn’t functioning highly, it’s treading water. My head may be above the water but I’m thrashing away trying to stop myself from going under. That’s what us ‘high functioners’ do – we try to keep afloat in a world that’s constantly trying to drag us under. Is it any wonder that most of us are mentally and physically wrecked by the time we’re 40?

This isn’t functioning ‘highly’. It’s functioning, just about.

 

 

 

 

 

Defined by Autism

As a community we are divided on the matter of ‘autism defines me’, ‘autism does not define me’. Me? I’m pro-definition and while I respect the views of autistic people who are not defined by ‘their autism’, I do not respect the views of parents (autistic or not) who make that decision on behalf of their child because it’s not their decision to make.

Reasons Why Autism Defines Me

Reason One

I’ve been autistic since I exited my mother’s womb and such was the shock of finding myself on this confusing planet that I required 24 hours of unbroken sleep to begin processing the experience and I’ve been processing it ever since..

Reason Two

I was diagnosed late (in my forties) but the world obviously sensed my autistic ‘aura’ from the time I started school. Maybe the other kids couldn’t handle the disappointment of being so ordinary and they took their frustration out on my face, legs and psyche? Thanks to social media, I see that they are still ordinary but time hasn’t been kind to them and given that I never got an apology from any of them, I’m hi-fiving Mother Nature for the kicking she’s given them.

Am bad, no?

Reason Three

As crap as life can be (and most crap is NT related) there are joys to my existence which occur because I am autistic. I experience the world in technicolour and surround sound – well I did until I started to go deaf in one ear but even that has it’s benefits.

My NT husband’s face goes screen-saver when I try to explain what it’s like for me to watch a movie, listen to music or read a book – so I’m guessing he doesn’t experience these things in the same way that I do? But the fact is that I feel music and when I read a book I become part of the story –  a bit like Bastian in The Never Ending Story. Only I’m not hiding away in the freezing school attic because I prefer my literature to be experienced horizontally and with the heating on.

Another comparison to The Never Ending Story is the world of Fantasia (my inner world) and the malevolent force ‘The Nothing’ – or abusive and/or ignorant neurotypical  or self-loathing autistic people aka Dark Webbers. Five minutes interacting with one of those guys and it’s suddenly sub-zero and you feel like hurling yourself into the path of an oncoming lorry. (speaking from experience)

My computer screen after interacting with a member of the Dark Web.

When I watch a movie, it’s a multi-faceted experience, not least of all because I absorb the personalities of the characters in the film which I identify with. Since diagnosis, absorption time is confined to hours and days as opposed to months. This is because pre-diagnosis I didn’t know who I was or how I was supposed to be and I was always trying to create a more ‘acceptable’ version of myself out of an array of fictional characters. It’s since occurred to me that the characters who I wanted to be like were the weirdos and misfits who, after much pain and humiliation, were not only accepted but respected by their peers and for the trillionth time I am wondering why weirdo acceptance is still generally in the realm of fantasy and not reality? Because in the real world you generally get ya head kicked in, no?

Reason Four

The word ‘define’.

To express the essential nature of something.

I am essentially autistic.

If I wasn’t autistic, I wouldn’t be me. I would be a completely different human being having a completely different human experience. Everything I am and everything that I have experienced in the way that I have experienced things is because I am autistic.

Maybe it depends on how a person perceives autism? If it’s something that they would rather not have, then I can see how a person wouldn’t want to be defined by something they dislike. Even so, there is no choice with autism, you just are. With some non-autistic parents of autistic children – it seems to be the case that it’s them who have the issue with autism. The problem with that is that their children will probably grow up to believe that autism is something to be ashamed of and will most likely spiral into inevitable mental breakdown. Parents lead by example and if that example is to hate autism and whinge excessively about their lives being ‘ruined and broken’ by autism then that’s what their children will take into the world.

I tell my autistic son that he is awesome and I am proud to be his mother. I tell him that, because he is autistic, he will have to work much harder than his peers with life skills but also that he excels in other ways. I also tell him that the things that he loves about himself are because he’s autistic. It’s a one package deal, is autism. Whether or not he chooses to be defined by autism is his choice. It will always be his choice.

Whether or not autism defines a person should be a personal choice, not the choice of a parent or anybody else for that matter. I choose to be defined by autism. It’s who I am.