Why is my Autism getting worse?

angry bad john art black and white emotion

Photo by Jan Prokes


 

All at once, those noises that previously were manageable are now too loud, those smells are too much, and you are crying, frustrated, and cannot make sense of much of anything….

Oh no, is my autism getting worse?

 

First things first: Autism is a neurological condition with no cure.  You cannot “get better” from it, nor can you really “get worse”.  What is happening at these key times is glaringly simple (which is why I think we overlook it so much).

 

Getting “better”? — That’s your coping strategies in action.

Getting “worse”? — That’s a sign of autistic burnout.

 

What is autistic burnout?

Autism is diagnosed by identifying a set of differences in behaviour, learning, and self-expression… these are defined as “deficits” by (the majority of) society.  As such, we autistics begin to learn new skills and techniques to manage in the world, to cope, to find calm and to “fit in” or “be seen as normal”.

Many people on the spectrum, young and old, have personalized techniques that help them cope in daily life.  Some things we learned from teachers, parents, caregivers, friends, or from reading books.  Other things we learned from our therapist, doctors, or by observing other people.  All the strategies we employ to manage in our world are *learned*.

The thing is, when an autistic person is exposed to prolonged stress, they can (like most stressed people) forget how to think…. and this causes “autistic burnout”.

While a non-autistic having a moment of vagueness while stressed may reflect, ‘well I can still manage and not feel burnt out’– To them, I say this: YOU ARE NOT AUTISTIC. Essentially, autistics need extra energy, extra focus, extra inner-calm in order to manage in the world, so when autistics get stressed, they lose all that “extra”.

 

Autistic burnout = when you’ve been stressed and you lose your ability to cope.

  • It feels like your autism is “getting worse”.
  • It feels like a sort of depression.
  • It feels like being stuck.
  • It feels like you are doing nothing right anymore.
  • It feels…. SHIT

 

Here is a helpful infographic:

31084eff5a8841a04d57bd44130f1b84

 

If you are feeling like your autism is “getting worse”, fear not— you are not regressing, or slipping.  You are just stressed!  Take a moment for you.  Find calm, find space and set your boundaries clear (say NO). Look after you…. and slowly, I promise, you will start feeling like your usual self again.

 

Bless.

Aspie Xmas Survival Guide

candle celebration champagne christmas

Photo by Pixabay

Ah, it is that time of year again: Christmas.  There is so much to enjoy about this festive period, yet – being autistic, it can also be hugely exhausting.

Managing your energy levels during this busy time can be a delicate balance act, however you can enjoy the celebrations and take care of yourself.

You can get involved and still honour yourself.  It’s just a case of being self-aware and giving yourself what you need.

If you find Christmas often leaves you tired and worrisome, this post will help ensure you do not end up running on empty.

 

1. It’s okay to say NO

Just because people are inviting you out does not mean you have to say yes.  Saying No is self-care. Make sure you build some breathing space into your calendar to allow some time to re-energise yourself. You can block out hours or days if need be. If anyone asks about your days off, you can say “I know myself. I need time for me” — then no-one really can say anything more on the topic (because this is about respect).

 

2. Find moments of quiet

During parties and other gatherings, make sure you give yourself little quiet moments here are there to catch your breath and pause.  Develop awareness of how you feel and give yourself breaks when you need it.  You may like to focus on external sensations at first (is my heart beating faster? am i shaky? do i feel sweaty?) to gain some sense of your feelings, then ask yourself “do i need some quiet?”.

 

3. Be gentle with your body

Christmas is a time of indulgence and temptation. I am not about to suggest that you should give up all the delicious goodies and treats.  Just maintain your energy levels in balance by getting enough sleep, drinking lots of water, walking a bit, and eating a few greens.  Treat yourself, but remember your body needs kindness too.

 

4. Enjoy yourself

This holiday season is for everyone, so turn it into something that feels right for you.  If you want to spend an afternoon curled up on the couch, then do it.  Whatever your traditions or bah-hambug-ness, the origins of Christmas are about coming together and shining a light on the darkness, so if your togetherness is you and a book, and your light is quite literally a lamp, that sounds fine to me! Do what you need this festive time; take control and do things your own special way.

 

Original text taken from ‘Pocket Christmas Survival Guide’ booklet which I designed for my group clients in 2016, “A is for Aspie”. I hope this guide helps everyone it can!

branch christmas christmas ball christmas decoration

Photo by Pixabay

Meltdown vs. Shutdown vs. Tantrum

adult alone anxious black and white

Photo by Kat Jayne

Autistics have meltdowns. Autistics have shutdowns. This is just part of life. We experience the world at 100% and some days it can just all get too much.

I’ve heard recently a lot of talk around people using autism as an excuse for bad behaviour, specifically with respects to childhood tantrums… I want to clarify some things here.

I wonder if there is just not enough information about the differences between autistic responses to overwhelm and temper tantrums?

 

So, here’s my take on it all.


 

What is a Meltdown?

A meltdown is essentially a complete loss of control over emotional regulation and behaviour.  It is an autistic’s response to overwhelm, which often is seen as an explosion of emotion, or an implosion (or sometimes both). When an autistic person is completely overwhelmed by something that is happening in their environment, or something that was said to them, they can *melt down to a childish state*.  So, a meltdown can look like: becoming reactive, stomping feet, throwing objects, screaming, banging things (or themselves), running away, etc…

Meltdowns are the result of sensory-overwhelm. Yep, this can be emotional overwhelm (too many feelings!), or too much light, texture, noise, aromas, people… Remember, meltdowns are never really about you. They are about the *environment* being too much for us to bare. A meltdown is completely non-reliant on your attention or reaction; it is a response to the environment.

 

How to help in a meltdown:

It’s generally hard to identify the start of a meltdown in your loved one. You may become cluely to their personal triggers, and this is definitely handy because it means you can help keep them calm… but sometimes LIFE just happens, and meltdowns occur.

If your autistic loved one is in a meltdown, stay calm. We dont need you also melting down! Please try to make sure they are somewhere safe, remove the offending sensory stimuli and leave them be.  Give your autistic SPACE. Avoid excessive verbal prompts. Aaagh, words are hard for us to process during meltdowns. Depending on the autistic individual and whether they have advised you of their needs, weighted blankets, firm hugs, or comforting sensory objects may help.

Meltdowns are not about a grab for attention or bad behaviour; this is simply a response to overstimulation, overwhelming factors.  Yes, as adults, we can rationally discuss the reasons why a meltdown is a silly action, childish and inappropraite. As adults, we can also agree to *not* meltdown, but essentially this is moot point. Meltdowns are out of our control. We do not choose to have a meltdown. They just sometimes happen.

 

black and white black and white depressed depression

Photo by Kat Jayne

What is a Shutdown?

A shutdown is an anxiety response to “too much”. It can be triggered directly by the sensory challenges in the immediate environment, or over a long-term exposure to being in crowds, at work/ school, around media/ TV. When an autistic person is completely overwhelmed, they may *shut down to a silent state*.

Shutdown is a coping response to overwhelm.  It is not reliant on you; it is not bad behaviour, nor is a grab for attention. It is a response to the environment. We need to shut it down, shut it out, and find peace.

A shutdown may look like:

  • They may hide away in a small dark space
  • Get far away from the noise/ offending sensations
  • Close their eyes
  • Block up their ears
  • Non-communicative/ Silent
  • Non-responsive
  • Staring blankly, as if they are “not there”
  • Not being able to move

 

How to help in a shutdown:

Noticing a shutdown about to happen in an autistic can curb us back into reality and make us feel stable again. The triggers and signs of shutdown will differ with each person you meet, but for me it starts with stuttering and confusion in my mind. I quickly lose my ability to think and to speak, and then it just stops all together. When I begin to stutter, my partner Z. will tell me to sit down, breathe, say ‘everything is ok’, offer me a comfort object, and that helps me so much!

If your autistic loved one is in shutdown mode, make sure they are somewhere safe, remove the offending sensory stimuli and leave them be.  When the autistic person has calmed down you can rationally chat about ways to manage the future. I recommend they keep a mood calender and to record their worries in a seperate booklet. The worry book can then be discussed with therapists/ parents/ partners together with your loved one to remedy or remove some of these anxieties.

 

“A tantrum is an on/ off event, where the person is SOLELY seeking a response from you”.

 

What is a tantrum?

A tantrum is a form of bad behaviour, meant to attract attention, often puported by young children (and some adults). Tantrums happen because these people do not know how to communicate their complex feelings of frustration, guilt, anger, or disbelief. As an expression of temper, they cry, stomp their feet, throw objects or scream… and why? Because something did not go their way. A tantrum feeds off attention with even negative comments propelling the emotional response… A tantrum stops when good attention is received.

What makes a tantrum different to an autistic meltdown or shutdown is that a tantrum is an on/ off event, where the person is SOLELY seeking a response from you. For example: The child wants a chocolate bar. You say ‘No’. Child screams and kicks and cries. You give in. Child gets chocolate bar. The screaming and kicking stops. This is a tantrum. If this event occurred in an autistic meltdown, the child will keep screaming regardless of whether a chocolate bar is presented or not.  Why? Because in an autistic meltdown, the denial of a chocolate bar is not even remotely related to the emotional outburst. You may be able to calm your autistic child down in time, but in autism, your interventions will not switch the behaviour on and off.

 


In Sum…

An autistic experience of the world being too overwhelming, and resulting in either a meltdown or a shutdown is NOT bad behaviour. We cannot control this. We do not choose this. We are not being bad.

Knowing the difference between a meltdown and a shutdown can help when working with, living with, or being with autistics. We understand that these intermittent experiences and responses to stimuli can be frustrating or unusual for you.

Yes, therapeutic interventions such as psychotherapy can help us manage our own emotional space, yet sometimes sensory overwhelm creates a response of meltdown or shutdown in us. What we really need is your patience and calm and awareness that we are not having a tantrum, or acting out…. we are autistic.

At times like these, we ask for your kindness.

Depression and Getting Shit Done

“Every man has his secret sorrows which the world knows not; and often times we call that man ‘cold’ when he is only sad.” ― Henry Wadsworth Longfellow

black and white woman girl sitting

Photo by Gratisography 

 

It has been hard to write recently due to the pervasive sadness that has moved back into my world.  I find it difficult to explain what happens, but let me try.  My depression is like a quiet underlying existence in my life.  It becomes a challenge to manage because it is predictably unpredictable.  When I feel good, I know it will be short lived, for I know the cloud of depression will return– but when?– I do not know.  And so, I try, like most people I guess, to enjoy my happier times and embrace the world and get shit done… but then suddenly the cloud returns and envelopes me.  When the sadness is here, my ability to complete tasks, think more coherently and be a better person in the world– that shrinks, and I’m left this shell of my past self, putting on a smile, lifting on foot in front of the other to walk and force myself to go out, go shopping, get out of bed, or– WRITE.

 

The Diagnostic Statistical Manual of Mental Health Disorders (DSM5) explains depression is a mood disorder whereby the individual experiences “either (1) depressed mood or (2) loss of interest or pleasure.  Additionally, individuals suffer five or more of the following symptoms during the same 2-week period:

1. Depressed mood most of the day, nearly every day.
2. Markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day.
3. Significant weight loss when not dieting or weight gain, or decrease or increase in appetite nearly every day.
4. A slowing down of thought and a reduction of physical movement (observable by others, not merely subjective feelings of restlessness or being slowed down).
5. Fatigue or loss of energy nearly every day.
6. Feelings of worthlessness or excessive or inappropriate guilt nearly every day.
7. Diminished ability to think or concentrate, or indecisiveness, nearly every day.
8. Recurrent thoughts of death, recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide.

To receive a diagnosis of depression, these symptoms must cause the individual clinically significant distress or impairment in social, occupational, or other important areas of functioning. The symptoms must also not be a result of substance abuse or another medical condition”.

(Wow, that’s just depressing to read. Thanks DSM!!)



I could write a long lament here about things that suck about depression, but I think it’s kind of self-explanatory, especially after that DSM descriptor! What I will do here is give you some tips and ideas on “Getting Shit Done” when you’re depressed.  May it’ll help you (or me?) today.

 

Tips to get shit done

1. AIM FOR COMPLETION, NOT PERFECTION

Ok, so you have something that needs to get done.  It’s a high-priority task. You have work due, you want to pick up a creative activity, you need to buy toilet paper at the store, or perhaps you just need to eat something healthy today.  Plan to complete the ONE task, and “just do it”.  This is not about perfection; it’s about completion.

With depression, focus becomes harder.  Decision-making becomes harder.  And worst of all, your critical voice becomes louder. Accept that you may not perform to your best, but give yourself a little leeway. You’re depressed today, and that means completion is good enough.

  • Aim to complete one task today, and give yourself permission to feel a tiny bit of pride over that.

I understand it’s hard to do that, because you feel all judgmental about yourself.  I know that when you’re not depressed, you’re like a wildfire of activity– you get shit done! However, today you are depressed. Today is where you are right now. So just for now, let it be.  Just for now, do one task to completion.  Just for now, breathe and be okay with completions.  Yaye, you did a task.  That’s really great!

 

2. GIVE YOURSELF SOME STRUCTURE

While most of us autistics like structure and routine anyway, when we get depressed, all that structure can go out the window.  Like, for example, I used to get up every morning between 8-9am and make myself breakfast, listen to music and dance in the kitchen, before attending to my day of tasks ahead.  Now I’m in bed till 11, 12 or 1pm… sometimes 2pm and I often forget about breakfast, don’t listen to music or dance, start-and-not-finish tasks, or just find myself staring blankly at the wall for hours on end without noticing the time pass.

Now, I’m NOT saying that you must now get up at 8-9am to have breakfast and alike, because that’s my schedule.  What I mean is that perhaps you should aim for getting up at the earliest end of your current wake-up cycle (for me, this would be 11am). Set your alarm clock, and put a plan into effect. Follow this plan, and substitute your own wake-up time and tasks, as indicated by the square ([…]) brackets.

  • Today, I will get up [at 11am], make and eat breakfast, then complete my ONE task [write the blog].  After that, I will give myself permission to feel a tiny bit of pride because I completed the one task I really wanted to do today.

Losing structure creates additional problems in many autistics; our routine is in place because it reduces anxiety, acts as self-soothing, and having this plan helps us to be motivated and ‘get shit done’. When we know what to expect from the day, it is easier to manage our emotions associated with the upcoming activities.

 

3. MAKE NATURE A FOCUS

There is a lot of research (studies here, here, here to name a few) into how spending time in nature can alleviate or reduce feelings of sadness and depression.

I know some of you hate the outdoors.  I am not suggesting you go camping today, or sunbake.  All I am suggesting is that you spend a little time in nature. Here are some ideas on how you might bring nature into focus today:

  • Go for a short, 10-15 minute stroll, passing trees and shrubs.  If you like, it can be a stroll to your local cafe, to buy a coffee/ tea.  Perhaps touch the leaves as you pass, or smell a flower.
  • Find a comfortable place outdoors and take 10 minutes to just watch the insects or birds.  Look for ants or spiders or bees; magpies, crows, cockatoos, parrots– whichever you like and is around you.  Watch them go about their day, think about them, what they might be thinking or doing, and reflect on how they behave.
  • Take a 10 minutes to walk through your garden and pluck 3 weeds.  Should you feel inspired to weed some more, or snip the hedge, do so.  Allow yourself to be with your garden.
  • If you have an indoor garden or plants, take 10 minutes with your plant.  Look at it, explore its leaves, the colour, shape, and feeling of it. Consider if it needs any support (water; sunshine; bug sprays; harvesting; pruning). Take some time to give it what it needs…
  • For winter or rainy parts of the world, take some time to sit on your balcony, or at an open window and watch the outside.  Listen to the rain, look at the clouds, observe the trees in the wind, feel the coldness on your breath and skin.  Take 5-10 minutes to look, listen and ‘be’ with nature.

It seems the breathing-in of fresh air, movement of the body, reflections of the ebb and flow of the seasons, on how nature and trees continue growing in spite of obstacles, and the experience of being in/ around natural environments is calming to the mind and balancing to mood.

 

nature-tree-green-pine.jpg

Photo by Tookapic

 

There’s just 3 possible ideas to help you get better focused and motivated when you are experiencing a downward turn. I don’t know about you, but I’m feeling quite positive having just finished writing this blog… and having reflected on those 3 tips.  I’m now going to make another coffee and look at some of the other work I need to do.  Maybe I can complete TWO things today? *hopeful*

Take care everyone.

As usual, comments are welcome. Much love.

 

 

 

Stress and Overwhelm

Many a calm river begins as a turbulent waterfall, yet none hurtles and foams all the way to the sea.” —Mikhail Lermontov

photography of barrel wave

Photo by Emiliano Arano on Pexels.com

The dictionary defines stress as “a state of mental or emotional strain or tension resulting from adverse or demanding circumstances”, and for autistic individuals, stress is one of the greatest challenges to living life well.

Research shows autistic people have a higher stress-response and are more susceptible to stress disorders than their neurotypical counterparts.   A combination of childhood adversity and heightened sensitivity to emotions, hyperawareness of the environment, and interpersonal challenges with others create the space for stress to grow.

Autistics find it hard to “let go” of a stress-response; their bodies hold the stress-response longer, meaning that they need to be more mindful of stress-reduction activities, and become aware of how stress affects them.

 

Stress Response – What it can look like

Stress can lead to a range of sometimes vague symptoms– some that overlap with “just being autistic” and some that overlap with mental health conditions, like depression.

WebMD gives this handy list-

 

Emotional symptoms of stress:

  • Becoming easily agitated, frustrated, and moody
  • Feeling overwhelmed, like you are losing control or need to take control
  • Having difficulty relaxing and quieting your mind
  • Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
  • Avoiding others

Physical symptoms of stress:

  • Low energy
  • Headaches
  • Upset stomach, including diarrhea, constipation, and nausea
  • Aches, pains, and tense muscles
  • Chest pain and rapid heartbeat
  • Insomnia
  • Frequent colds and infections
  • Loss of sexual desire and/or ability
  • Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
  • Dry mouth and difficulty swallowing
  • Clenched jaw and grinding teeth

Cognitive symptoms of stress:

  • Constant worrying
  • Racing thoughts
  • Forgetfulness and disorganization
  • Inability to focus
  • Poor judgment
  • Being pessimistic or seeing only the negative side

 

Okay, so how do you know if you’re experiencing stress-symptoms rather than just existing in this world with autism, or having the flu or something?

There are some key stressful life events that can shake you– like moving house, getting a new job, death of a loved one, falling in love, or the birth of a baby… but other things can also rock your boat.  Good things can be stressful, as well as bad things. EEK!

I think the key is to look BACK. I mean, defining whether we are in a current state of stress is not exactly easy. So, look back at your week or month or few months you’ve just had.  Defining whether you’re stressed is necessary, because you can’t start looking after yourself unless you know what’s wrong.

Write a list of what’s happened in the past week/ month/ year. Take the past week, per day describing key events, or a per week, or per month. Look at what happened. What events took place?  This will help you see the truth of what is happening.  I find analyzing your experiences really helpful to figuring out what you need to change them.

Notice your productivity levels.  What are you not getting done, that previously you could easily get done? Are you way behind on your work? Another factor is change. Have you recently changed something big in your life, like made a new friend or let go of someone toxic? Also, consider your moodiness. Are you having more bouts of ups/ downs? Do you find yourself in more fights with loved ones over small and pointless things?

Just note these elements… and if you decide YES, I AM STRESSED, then go about changing that.  Find your equilibrium again; get out into nature; take space; immerse yourself in your special interest; take a self-care day (or week!); ask for help; see your therapist or doctor; exercise; meditate.

 


I think I am stressed.

At the time, I didn’t think I was stressed.  But now I am looking back on this year so far, I can see I was stressed in each month, and hell- I still am stressed now!

In the beginning of the year,  my narcissistic mother told me that by Christmas I’d homeless because she has decided to WITHDRAW FINANCIAL SUPPORT and move overseas.  She said I am stealing from her, that I need to be taught a lesson, and that I am undeserving of help (she also thinks my autism is a made-up disorder and completely untrue).  See, from 2004, she decided that I needed to receive a small living allowance which she said would enable my independent living. So, I moved out of home, and she paid me a small weekly amount so that I could live a modest existence outside the family home. Her initial idea was that I’d find work and she could cut down my allowance till such a time I was completely independent.. however, whenever I started to earn money, she would refuse to cut my allowance, and then later used her gifting of the allowance as a way to blackmail me… ahhh the trials and tribulations of a narcissist!  At the start of this year she made it clear that she was not going to continue giving me financial support and that when she left Australia, I would just have to fend for myself.

In February, I found out I GOT INTO UNIVERSITY to do my PhD topic and was really excited about that, but soon found out that I needed to PAY FEES and I couldn’t really afford it.  Mum refused to pay anything, although she encouraged me to do this degree and said she’d pay for it.  So, that sucked. Then, when I started my course, I also discovered that my SUPERVISOR IS ABSENT, and that he was rarely available or, it seemed, interested to give any support in the writing of my thesis. Such a disappointment. I’ve actually been seriously considering dropping out of university because of this situation…

In March, I started dating a friend, but as it turned out, he was depressed and had some strange sex trauma from his past, so our ‘relationship’ if you can even call it that, did not really progress beyond a few cuddles– even though he talked about being together, he was completely disinterested in intimacy and well, we broke up after a number of weeks… which really was blessing, because I was QUITE DEPRESSED by then.

In June, my mum forced a visit upon me where she spent a great deal of the time criticizing my life, picking on me, and joking about me being homeless. I realized that HAVING A NARCISSIST IN MY LIFE is not a good thing.

In July of this year I got a PAID JOB, one that I got totally by myself; my first ‘real’ job in 10 years- I was now being employed by someone else, paid a wage that more readily suits my qualifications and experience. I also got a NEW BOYFRIEND, someone who is really into establishing roots together.

In August, I had an unexpected condition which really required that I GO TO HOSPITAL, and I was very emotional about it because my recovery would take a long time. Later in that month, I also learned my MUM HAS CANCER. And I had a minor CAR ACCIDENT, but it totally shocked and shook me. When I heard about my mum, I just did not care. Her physical illness made her even more selfish, even more demanding, even more critical of me and my life… and she did not give me any emotional support in my situation. She told me I was a bad child for not wanting to quit my job and ditch my university to be with her.  She cut off individual payments of my living allowance because I was apparently not being loving enough to her, and that really hurt me financially. August was the month that made me question whether my mum even understands the concept of love.

In September, I was still recovering from my operation, and I TOOK LEAVE FROM UNI, quitting one of my subjects.

In October, I decided to cut off all contact with my mother, and that was really freeing and beautiful for me because I could now finally be who I am without hearing constantly how wrong and bad that is.  Yet, in all the amazing good, not having her occasional financial support has made it pretty hard as I now have these insurmountable  FINANCIAL STRUGGLES, especially with health insurance, rent and bills — these things cost so much! At the end of October, I also experienced a strange tightness in my chest and inability to breathe… I had a severe ASTHMA ATTACK, and now I’m taking asthma medications, despite never having had asthma before; I’ve acquired it as an adult, and it sucks. In late October-early November, I experienced choking in the middle of the night; had it not been for my partner waking me up, I’d probably be dead. Frightening stuff!

Now it’s November and I am behind at work. I am behind with my thesis.  I have been fighting more with my partner. I have neglected seeing my friends. I am aware that I have been more forgetful than usual, struggled more with focus, had more aches and pains, felt more overwhelmed, felt more lost, found it harder to self-soothe, and had greater anxiety.  I am stressed.

My stress comes from the fact that I didn’t accept I was experiencing stress

I let myself get stressed and did not address it when it was happening.

Not all is bad.  I am getting support NOW.  And that’s the take-away, here. No matter when you notice it, seeing and accepting your stress is the way to reduce it.

Being autistic means we might totally miss the signs of stress brewing, and sure– we’re like stress-magnets, but we can find balance again once we’ve identified the problem as, well: STRESS.

If you have an autistic friend or partner and you see their lives getting hectic and full of stressful life events, remind them to breathe, take time out and de-stress.  We’ll appreciate your kindness… and, as you may know, a calm person is a productive and lovely-to-be-around person.  🙂