Welcome to Steve’s Aspie Adventures



Whether you are reading this as a parent, carer, friend or are on the spectrum yourself, a warm welcome to the blog and I’d welcome your comments. I was diagnosed with an autism spectrum condition as a teenager. Throughout my life this has brought unique challenges, deep lows but also very happy times. I hope with this blog I can share some of my experiences, challenges and successes with you. My hope is that it can help along the way at breaking down some of the fears, misconceptions, stereotypes that come hand in hand with Autism by giving an insight into what it’s like as an individual living with the condition.

At times when I’m affected most by my condition life can grind to a halt, but that has given me a drive to experience all I can when I’m feeling well. Travel brings a new perspective on life and the experiences it brings have made my good days even better and given hope in my bad days. For me it’s a metaphorical middle finger to a life-long condition. In my other blog (The Adventures of Steve) I share some stories of my travel and adventures.

I hope you enjoy reading this blog. Feel free to share this with your friends if you've found it helpful. I'd love to hear your thoughts, any topics you'd like to read about and own experiences so please comment or message me.


Please note, that in all my blog entries I can only relay my personal experiences and perspective. It is important to remember that every single person on the spectrum is an individual with a different story to mine. I have no medical expertise or training and am writing to share my personal experiences only.


Saturday, 28 June 2014

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.

6 comments:

  1. Jonathan Ramsden28 June 2014 at 22:08

    Seems like a very good page steve.

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  2. Thanks for this Steve, very well written. My 11 yo Aspire son also calls his meltdowns 'glitches' in his brain and he was really pleased to see you understood that feeling. :) Great job!

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  3. I work in Special Education and also have several people in my personal life on the autism spectrum. I just found this blog, and I deeply appreciate your technical knowledge and the way you are able to apply it to your own experience. I know that every person with autism is unique, but I feel that your insights will help me understand my students better. Thank you for putting yourself out there.

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  4. Thank you for your kind reply. It is so encouraging to hear that this blog has been useful to you. Please let me know if there are any topics you would like to read about in upcoming blogs :-)

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  5. Thanks for the insight Steve. My 7 year old grandson Robbie has ADHD and ASD and this has helped me to understand better what he is going through when he has a meltdown. Thanks again and I would like to wish you all the luck in the world for the future x

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  6. Neat blog post. I experience Meltdowns more quickly and with less warning... sometimes I do not even know they are close. There are so many different flavours to Autism... in this blog I have learned something new :) Thank you.

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