Autistic Meltdowns - A Timeline to disaster!

TRIGGER WARNING - This post describes in detail an autistic meltdown - please do not read further if this may act as a trigger

The autistic meltdown is possibly the most feared, misunderstood and daunting aspects of ASCs. This will be the first of number of posts exploring this topic as it has been by far the biggest topic I've been asked to write about, but it is probably one of the hardest. Why? Well it is such a huge and complex topic, is fuelled by so many elements and labelled with terms that are often misleading to a neurotypical audience.

So I guess the best place to start is to give a basic explanation my understanding on what is actually occurring in the body during a meltdown cycle and the different elements at work. 

Living in a neurotypical world us aspies have a battle on our hands every day just to get by. With sensory and communication difficulties even the simplest tasks can become problematic and require levels of 'translation' in our heads. The constant mental gymnastics can sometimes get just a little too much and every so often the brain has a quick break. It is like a computer crashing. You've got too many windows open and things slow down, the more you click the worse it gets until it freezes then reboots. This is like what our brains do. It comes back on line, de-frags itself then away you go. I will try my best to describe the effects of average meltdown for me.

Timeline: 3 DAYS TILL MELTDOWN

The first signs I am heading for a meltdown usually start to occur a long way in advance. At the stage we are starting our journey into the meltdown together I have already noticed the warning signs and we are 3 days away from the meltdown. I don't yet know exactly how long I've got but I know it's imminent so I need to start preparing. I've learned the importance of spotting the early warning signs as a surprise meltdown can be catastrophic. My brain is beginning to get tired and 'glitch'. This is a sign I need to reduce it's load and fast. A few things have happened in the week leading to this point, a busy week at work, disturbed sleep, argument with a friend, nothing too daunting to have caused alarm but I've now started to get irritable about things vastly out of proportion. A random and un important issue is playing on my mind and I'm losing my temper about it. My ability to act neurotypical has dropped and a few people have commented on this. I'm struggling to follow my daily routines and I've noticed that I'm not eating properly, keeping up with housework, keeping personal hygiene in check etc (did i brush my teeth this morning? I've not done the ironing, when am I going to do the ironing? Oh no, I forgot to have dinner!). This quickly escalates and simply trying to process what needs to be done vs what is irrelevant becomes a major task. I start to cancel things from my diary and prepare as I know what is coming next....

Timeline: 1 HOURS TILL MELTDOWN

Clearing the diary and allowing a few days to let my brain rest should have returned me to normal by now, but not this time. A few tricky commitments have remained. A friend has been unhappy about me cancelling plans, noise from a neighbour is triggering sensory overload, someone cut me up on the drive to work. My ability to respond correctly has now vanished and my brain is approaching it's capacity. I feel a wave of emotion and confusion vastly out of proportion to the situation. As I have started to loose the ability to filter and process information whatever this 'final straw' has been is probably now the focus for the meltdown. Although the meltdown has technically started I have enough time to get myself somewhere safe and this is my priority as I know I've reached the point of no-return.

Timeline: 10 MINUTES TILL MELTDOWN

My brain is beginning to go offline. My speech has become repetitive and obsessive. Due to the fast breakdown of my cognitive function, all the emotion, fear, frustration etc is being projected on this single trigger. The supermarket having run out of my favourite brand of cereal, my friend turning up late or the TV show I was about to watch being cancelled isn't the real problem, and I know this - but my ability to express anything at this stage is fast decaying so I'm stuck in a loop of venting at some random issue. (This is why it can be mistaken so easily for a temper tantrum).

Timeline: MELTDOWN HAPPENING - CODE RED CODE RED!!!!!

My brain has now gone offline. This is the most dangerous stage of the meltdown, but only lasts a few minutes. During the brain freeze stage I simply cannot process the information around me. It is scary and confusing. I simply cannot make sense of anything going on. Sound is painful, my vision is blurry and more importantly for you - At this stage I don't know who I am, who you are or where I am! If am still talking, it will have reduced to a loud repetition of words. (this is not conscious, it's like a record being stuck)

My body is trying to be helpful and released an enormous surge of adrenaline into my bloodstream. This is to protect me while I'm not able to cognitively function. As in the classic anxiety attack this is to facilitate the fight or flight response and becomes a huge factor in the immediate aftermath.

Timeline: 10 MINUTES INTO MELTDOWN

After shutting itself down, the brain has now started to come back on-line. But it doesn't happen all at once. Things go in one of three directions from this point on....

Route 1: I have retained enough cognitive function to put in place a helpful solution to the adrenaline overload. Either by regulating breathing, walking around the block, using a punch bag etc or by using sedatives to allow me to sleep through the re-boot.

Route 2: An internalised response (What I call a shutdown). The extreme reaction has turned inwards and I am shaking or rocking like in a seizure, I'm unresponsive and vacant, very hot and clammy and my breathing has become wheezy and stilted. I've either collapsed right where I was stood or I've positioned myself in an inexplicable place (under the bed, in a corner etc) probably as a subconscious means of protecting myself. This is the most frequent type of meltdown I experience. It WILL resolve itself fast if you let it run it's course. I will not die, suffocate, pass out etc, please try not to panic while this is happening, in reality it looks far worse than it is.

Route 3: An externalised response. The extreme reaction has turned outwards. This is the loudest and most daunting response. The adrenaline is being released in pure violent force, aimed directly at whatever the stimulus that caused the overload to occur was. The danger isn't for you (Unless you do something unhelpful like grab me or shout in my face - but even someone not experiencing meltdown may react badly to this!) The real danger is to me as one of the effects I'm experiencing is the almost complete loss of my sense of pain. This can clearly result in some nasty injuries if I'm somewhere unsafe. The only real factor that turns a meltdown loud and violent is the source of overload still being present. Remove this and it will quickly run it's course. I will be doing everything I can to get away from the source of overload. It is important that you help me do this or get out of my way. Unless you can directly help, you will be a hindrance. Do not expect logical communication from me even if you are helping me. Remember that autism seriously affects my ability to communicate and at this moment in time I have very little cognitive ability. It the source is too much noise, get me somewhere quiet. Too much light? Get me somewhere dark. Simple. If it's you, then go away! This may sound blunt, but my inability to communicate 'please leave me alone for a few minutes to calm myself' has resulted in very blunt and out of proportion requests from me for you to back off. By the time I've reached meltdown I don't have the luxury of being able to communicate, you do! Please use it wisely, leave your hang-ups at the door and give me the space I desperately need at this point in order to recover safely.

Timeline: 1 HOUR SINCE MELTDOWN

The meltdown has subsided and the adrenaline has left my system but now I face a new hurdle. The extreme affects of the meltdown have caused my blood sugar levels to drop dramatically. I need sugar fast. I carry glucose syrup for this reason. I am also experiencing a wave of extreme exhaustion. I need to sleep for a while. I may have simply fallen asleep wherever I am. Please leave me be unless I'm somewhere unsafe, I will move when I'm ready. In the following hours I may go through the cycle again a number of times, like an earthquake and it's aftershocks.

Timeline: 1 WEEK SINCE MELTDOWN

By this stage, a week later, things have stabilised. Now is the time to repair any damage that has been caused. I am likely to have been off work, missed appointments and social commitments. Perhaps I have people to make amends with or people to thank for their support. After a big meltdown like this I always try to do this personal evaluation. Unfortunately the medical input regarding meltdowns is at best lacking and at times dangerously incompetent so personal insight is the only real means of improving things for the next time it happens, and having a meltdown is the only time I can gain that insight.

Thanks for reading and I hope this can be of help in understanding this subject. This has been a very difficult post to write and one that can be expanded upon much further. Please feel free to comment on your own experiences with meltdowns.

10 things you shouldn’t say to an Aspie

Most people on the autism spectrum have probably had their fair share of comments and questions directed at them that make their blood boil just a little. Sometimes these are callous and hurtful remarks, but mostly it is from someone genuinely interested and trying to understand. When faced with an often misunderstood condition like autism, it is natural that people will have misconceptions, questions and an interest, but unfortunately this can come across in unintentially hurtful or unhelpful remarks.

I’ve compiled a humorous look at the top ten list of comments I’ve personally received. Please note that I have High Functioning Autism / Asperger’s Syndrome so my responses reflect this.

1. You look so normal. Are you sure you’re autistic?

Ok, so how does autism look?!? This type of statement is so common that I’ve lost count of how often I’ve heard it. I believe this statement is often intended as a compliment, but that’s rarely how it comes across. In reality it can offend on so many levels. After all what exactly is ‘normal’? So am I sure I’m autistic? Yes! Do I need to prove it to you? No! Unfortunately this was once raised by a manager at work who insisted on second opinion and sent me for re-diagnoses, and the results…‘See, I told you it was!’. The reason it’s not always evident is a combination of peoples misconceptions of how a person with autism should behave and my own strategies at blending in with the neurotypical world.

Now would it help you if I wore a label….

2. Stop hiding behind the label of autism.

Well you wanted me to wear the label! The difficulty of autism is that it’s invisible. Sometimes it’s really in everyone’s benefit if I can explain why I might need to approach something in a different way or may be acting in a slightly unexpected way. Good examples are the police alert card and times where I’m feeling overwhelmed and need to leave a situation.

So if you don’t want me to have the label afterall, perhaps you can wear one so I know you might be asking me silly questions…

3. Get yourself out more, that’ll make you feel better.

Ah yes I see you’re wearing the label, I’ll answer this before you open your mouth again!

Often a generic response to anyone feeling a bit down is to tell them to get out more and cheer up. That’s not what’s happening here. I might feel down or anxious at times, just like anyone else, but getting out more will probably make it worse. One of the more distressing aspects of autism for me is sensory difficulties. When I’m feeling run down for what ever reason my ability to process the world around me drops significantly. This can quickly cause a sensory overload where it feels as though the brain has crashed. Sounds and light become painful and communication almost impossible. I’d rather this doesn’t happen and I’m sure you wouldn’t like it either. I think I’ll stay in and listen to some soothing music thanks.

4. You look uncomfortable, stop doing that with your hands, it looks strange!

Well I told you going out wouldn’t help! Yes I know I look uncomfortable and I’m acting strangely. The more you point this out the more self conscious I’ll become and the more ‘autistic’ I’m likely to act. Sorry, that’s how it is! I’ve very aware of how this is. If it makes you uncomfortable then that’s your issue to deal with. If I’m feeling uncomfortable or starting to struggle please be respectful and accepting and things are more than likely going to resolve themselves without any dramas. Making an issue of it is likely to result in the dreaded meltdown…

5. Aren’t you too old to have temper tantrums!

Yes I am, that’s why I don’t have them! Meltdowns are a different beast altogether. In essence a meltdown is your brains reaction to becoming overloaded and just like a computer crashing, it reboots itself. While this is happening (for me usually 10 – 30mins) I cannot make any logical sense of the world around me. This can be deeply terrifying and disorientating.

From the outside it can appear to happen with no warning at all and be in direct relation to not getting your own way. In reality it is often simply that a small misunderstanding or upset has tipped the balance due to any number of factors you are unaware of. The biggest differentiator between tantrums and meltdowns is that tantrums are conscious and controlled, meltdowns aren’t. A tantrum is likely to quickly fade when the person gets their way or when not observed, whereas a meltdown will continue until it’s run it’s course, be repetitive and have after-effects of fatigue and confusion that can last days.

The terminology used for this experience varies from person to person which can lead to confusion. The way this manifests itself also varies greatly. Some rarely experience this, for others it’s a crippling daily struggle.

This is a huge topic that I’ll cover in more detail in a later blog.

6. You shouldn’t rely so much on your parents to help you, you’re in your 30s!

Don’t get me started on this one. Whether you like it or not in some areas I need more assistance than the average person. deal with it! I’m lucky enough to live a fairly independent and self sufficient lifestyle, but if I’ve had a bad turn things can grind to a halt. If this means that I require extra support then it shouldn’t be a concern of yours, everyone needs help some times. The level of support required and ability to live independently varies greatly from one person to the next. Perhaps instead of criticizing someone for asking for support and labelling them as lazy, you could politely ask if there is anything you could do to make things just a little bit easier.

7. How many ceiling tiles are there?

It is true that there are autistic savants out there with some incredible abilities, but not all of us can do that, maths and mental arithmetic certainly isn’t one of my strong points. One of the features common to aspies is strong and focussed interests so certain facts can roll off the tongue at ease. Ask me about mushrooms or US geography and I’ll quite happily talk at you for hours, but ceiling tiles – no. By the way, there are 136.5 tiles in this room.

8. My (friend’s kid, neighbour, cousin….. ) is autistic, you’re not like them.

No I’m not. I’m like me. Autism is a broad condition that doesn’t define who a person is. Every individual on the spectrum is just that – an individual. How and to what severity the condition presents itself in an individual varies greatly, as does that persons abilities and strategies in coping and overcoming what life throws at them.

9. let      me     speak     slowly     so      you      understand      me

OK,     let    me     reply      slowly      as       you       don’t       seem         very           bright

10. It must be hard not having any empathy with anyone.

Yes and no. Yes it is hard, but not because of lack of empathy, it’s because of this common misconception that we don’t have empathy! Personally and certainly with many of my friends on the spectrum there is no lack of empathy at all. What is lacking is the ability to instantly read the non verbal clues and signs to read what someone is thinking or feeling. This can come across as a lack of empathy, which for me often leads to great remorse at not having realised how someone felt. Recently at work I was asked if a colleague sat in my office was OK as she seemed very stressed. I had been sat next to her for 6 hours and simply not noticed anything as she had not vocalised her feelings. When I realised, I felt hugely upset that I had not been supportive or helped a colleague who I hold in high regard and been ignorant of her stress  This isn’t a sign of lack of empathy, it’s a sign of inability to read body language.

Thank you for taking the time to read this list. I’ll discuss further many of the topics touched on here in later blogs. The list could easily continue much further but If you have any comments and responses you’d like to add to the list I’d really enjoy reading them. Please feel free to post in the comments.

Glossary of Terms

Autism is such a broad spectrum that a whole vocabulary of both official and slang terms has arisen. As I am aware that you may not be familiar with the terms used in this blog or may have different ways of referring to certain things I have written this brief and simplified list to explain the definition of abbreviations and the meaning or understanding of certain colloquial terms I use.

I am aware that certain sensitivities arise around the use of certain terms (for instance some people refer to themselves as an autistic person, others prefer person with autism). I will try to be respectful of this in my writing, but for ease I will tend to use the terms that I find most acceptable in my day to day speech.

ASC – Autism Spectrum Condition

A blanket term used to refer to the whole range of corresponding conditions that make up autism. Autism is broadly speaking a grouping of three overlapping neurological conditions categorised as pervasive developmental disorders (PDD).

ASD – Autism Spectrum Disorder

As ASC. This is no longer the accepted term in England as the word disorder has negative connotations and is seen to be misleading. This however was the terminology used here until very recently and still in use worldwide. 

ASC is the politically correct terminology if (like me) you live England, but ASD will be the term you hear must often virtually everywhere else. 

Aspie

A slang term for someone with Asperger’s Syndrome.

DSM - Diagnostic and Statistical Manual

A handbook used widely by medical professionals in diagnosing and categorizing mental and developmental disorders. This is an American publication so for areas using different manuals (eg the World Health Organisation's ICD-10) will use different terminologies (see ASD/ASC above)

HFA (High Functioning Autism) and Asperger’s Syndrome

HFA is traditionally used to refer to someone deemed to be cognitively higher functioning (defined as having an IQ over 70). The overlap of diagnosis between HFA and Asperger’s Syndrome has been vague at best, and the most recent release of the DSM as grouped the two together. Depending on context I use both HFA and Asperger’s when referring to my diagnosis.

Meltdown & Shutdown

The extreme reaction to over stimulation where the brain ‘resets’ leading to loss of cognitive function for a period of time. If the response is externally projected, adrenaline fuelled, loud and active it is usually referred to as a meltdown. If the response is internally projected, withdrawal and unresponsiveness it is usually referred to as shutdown.

NT – Neurotypical

A term used commonly to refer to those without an ASD.

On the Spectrum

Refers to an individual diagnosed with an ASC

SO – Sensory Overload

Sensory issues are a common feature of ASCs. An overload or oversensitivity to certain senses can trigger a Sensory Overload. The brain stops filtering the incoming signals and extreme oversensitivity to that sense can occur.

Stimming

A term used to describe the repetitive self-stimulating traits seen in many autistic individuals often performed subconsciously as a means of calming and reducing cognitive overload. Examples are rocking, tapping of hands or repetition of words