Sleep and Autism

Greetings Earthlings! 🙂

Did you know that between 40% and 80% of autists reportedly have sleep problems?

I have spent many a restless night tossing and turning whilst my mind races. Like a washing machine on the highest spin setting, my mind keeps going round and around when I turn out the lights.

This is a fairly accurate (and cute) representation of my efforts to sleep at night:

I struggle to get comfy and start thinking and stressing about my day, about tomorrow, about that embarrassing time when I got an answer wrong in class and everyone laughed at me…and it keeps rolling on in a similar never-ending loop. The pillow starts heating up (did you know that thoughts produce heat? ), I start stressing about not sleeping and how soon the alarm will go off, get frustrated and inadvertently end up even more awake than before!

Eventually I pass out, and when the sun comes up the next morning…

….I wake up feeling like death in a tangle of bedclothes, wearing my sheet as a scarf! 😛

It doesn’t happen every night, but on occasion, especially if I have to be somewhere important or catch a bus early the next morning. I spend so much time thinking about needing sleep that I end up chasing away any tiredness! 😛

But why are we prone to disturbed sleeping patterns?

As with many aspects of autism, it’s unclear why exactly we struggle with sleep, but the experts have a few theories on the subject:

Melatonin, the hormone which controls sleep and wakefulness, is thought to contribute to sleep issues in autism. The amino acid tryptophan is needed for the body to produce melatonin, an amino acid which research has shown can be either higher or lower than normal in people with autism. Ordinarily melatonin is released in response to darkness (to induce sleep) with levels dropping during daylight hours (to keep us awake). However, studies have shown the opposite in some autists, where higher levels of melatonin are released during the daytime and lower levels at night. So that explains why I’m often inexplicably dying for a nap in the middle of the day!
Sensory issues are also thought to contribute to these sleep problems. Many autists have an increased sensitivity to such stimuli as touch, light, noises, etc. During my first year in college I became somewhat of an insomniac due to city noises, late night fire alarms and paper thin walls…
A number of autists, such as myself, are night owls. Recent brain imaging scans have shown that there are physical differences in the brains of night owls and morning larks. Night owls show signs of reduced integrity in the white matter of the brain (fatty tissue that enables brain cells to communicate with each). This compromises the speed of transmission between neurons which can cause insomnia, daytime sleepiness, antisocial personality disorder and interfere with cognitive functioning. Differences in the integrity of white matter have been linked to ASD’s, so this could explain why we struggle to sleep at night. But it’s not all bad- some studies have shown that night owls are more productive, have more stamina and can display greater analytical and reasoning abilities than morning larks! 🙂
Anxiety problems are also thought to contribute to troubled sleeping

So what can you do to improve your sleep?

Weighted blankets are often recommended to help manage autism. As I’ve discussed previously, autists have higher levels of stimulatory neurotransmitters and lower levels of calming neurotransmitters. Weighted blankets contain metal or plastic beads in the quilted layers to apply deep, calming pressure to the user- like simulating a hug. This pressure is designed to stimulate the release of serotonin (which helps regulate the sleep cycle and temperature) and dopamine to relax and calm the mind and to better help us to sleep.

Some studies have shown that weighted blankets do not noticeably improve sleep for autists, however many people, neurotypical and neurodiverse alike, have found that they get a much better night’s sleep from using them- so it’s worth a try!

Personally, I’ve discovered that using screens too close to bed time can make it harder for me to nod off at night. Scientists have found that the blue light emitted by most screens can interfere with the production of melatonin, making it more difficult to fall asleep. If melatonin disturbances are indeed contributing to your sleep issues, it would be wise to decrease screen time in the night time.

Aoife’s Top Tip: Ditch the laptop before bed, read a book instead! 😉

Experts also recommend avoiding caffeine, getting more exercise, establishing a routine and taking measures to manage stress.

In my experience, stress management is key to getting a good nights sleep. My memories of being an angsty teenager are littered with sleepless nights spent fretting about everything! Once I got on top of my stress, peaceful sleep was quick to follow 🙂

Sleep will come, you just have to find what works for you.

Goodnight dear Earthlings, I’m feeling a nap coming on 😉

Enjoy the weekend!

Aoife

May 26, 2017 14

Autism Management- Fidget Spinners

Greetings Earthlings! 🙂

So today I’m going to take a look at the latest craze- Fidget Spinners. I couldn’t take more than 50 steps in Dublin the other day without someone trying to sell me one! 😛

So what exactly are they?

In case you’ve been living under a rock, Fidget Spinners are a handheld device where the centre is held between your fingers and you spin the device. They come in all shapes and sizes and are designed to relieve stress.

Here’s a video discussing them and some of the crazy things that people have been using them for:

But what have Fidget Spinners got to do with autism?

Whilst they may have only surged in popularity in recent months, Fidget Spinners were actually invented in the 1990’s to help people who have trouble focusing, such as those with ADHD, anxiety and autism, to channel excess nervous energy and stress into the spinning device. The thinking is that by diverting the excess energy into a physical action, this frees up certain areas of the brain from distraction, allowing you to better pay attention. It is also thought that fidgeting can relieve the brain of negative and obsessive thoughts.

But do they really work?

Opinions are polarizing as to whether or not they actually help. There is very little scientific evidence to support these claims. Of the studies that are out there, most focus on general fidgeting such as foot tapping, where it has been shown that movement can help to maintain alertness and improve working memory, but there are no studies specific to the Fidget Spinner itself.

Some experts warn that these toys may actually prove to be even more of a distraction for people with attention disorders. In theory, the toys occupy the hands so that you can focus your mind on the lesson (like stress balls), however, experts believe that the visually pleasing spin of the blades could add a further element of distraction.

For teachers, they are proving to be a distracting nightmare in the classroom with many banning the device.

As opinions are divided, I decided to get one for myself and, pardon the pun, give it a whirl 😉

There is definitely something oddly satisfying about holding the device between your fingers as it whirs into life, and there have been several moments where I’ve felt the addictive urge to spin it throughout the day.

However, I did not find it soothing from an anxiety perspective. In fact it actually really annoyed me when it would stop spinning and I would have to get the rotors spinning again! 😛 I also found that it didn’t substitute as a calming “stim” and that I still reached to fidget with my necklace whilst I was using the Fidget Spinner!

That being said, autism is a spectrum where no two are alike. The Fidget Spinner may not work for me, but it could still be a nifty little tool to help manage ADHD and anxiety in another autist 🙂

So by all means, go on! Give it a spin!! 😉

(I have got to stop with these terrible puns… 😛 )

Aoife

May 22, 2017 1

Autism on Screen: Forrest Gump

Greetings Earthlings! 🙂

Today we’re going to have a look at the portrayal of autism in the multi-award winning 1994 classic ‘Forrest Gump‘.

I know, it’s not a film that specifically mentions autism, but it’s on a list of films featuring autism by the Autism Research Institute so we’ll have a look anyway! 🙂

In actual fact, ‘Forrest Gump‘ was based on a book of the same name by Winston Groom (1986) in which the title character is an autistic savant with great mathematical ability! I’ll have a read of this at some stage and discuss it in the future 🙂

Forrest Gump Cover.jpg

So what’s ‘Forrest Gump‘ about?

In short, the film details the life and adventures of one Forrest Gump native of Greenbow, Alabama. Slow witted, but kind hearted, Forrest find’s himself in the midst of some of the most pivotal events in modern American history, showing everyone that mental disability does not preclude you from living a most extraordinary life.

For anyone who has yet to see the film- here’s a little trailer:

So how does ‘Forrest Gump‘ fare in it’s portrayal of autism?

Whilst ‘Forrest Gump‘ may not intentionally portray autism as in the book, nevertheless Forrest displays many autistic characteristics consistent with a diagnosis of Asperger’s syndrome. He does not always display socially appropriate behavior, as demonstrated by the memorable scene in the White House where he tells JFK that he has to pee! Forrest doesn’t always make eye contact, has some specialist interests (such as Jenny and Ping Pong) and can often ramble on, speaking in monotones as is often associated with AS. Forrest also demonstrates that he is a literal thinker in the film, often leading to some of the more humorous moments.

Image result for have you ever been with a girl forrest gump

Interestingly, the film depicts Forrest in a more realistic light than in the book. Whilst he is described in both as having a low IQ in the 70’s, Forest is not portrayed as a stereotyped mathematical savant in the film.

FINALLY! A bit of realism! 😛 😉

Although entirely fictional, this film delivers the audience an encouraging message of hope. In spite of his mental limitations, Forrest goes on to lead not just a “normal”, but an extraordinary life.

Forrest’s tale truly shows us how, as I’ve often remarked in this blog, you should never allow autism to hold you back. An autism diagnosis can be a challenge yes, but it does not mean that you can’t live a “normal”, happy and fulfilling life 🙂

To quote Sally Field in this film:

Image result for forrest gump gifs

Enjoy the weekend everyone! 🙂

Aoife

May 19, 2017 0

Autism and Phones

Greetings Earthlings! 🙂

So a little bit different today- I know the title is unusual! 😛

But the prospect of talking on the phone is something that fills many an autist with dread!

But why does this seemingly innocuous device strike fear into our hearts?

My relationship with phones is complicated.

On the one hand, I enjoy chatting to my family and friends on the phone; on the other, talking on the phone feels soooo AWKWARD to me!

As if reading a person isn’t hard enough, but when you can’t see them? It really adds to your social anxiety. You can’t tell if they’re bored or if you’re cutting across them, not to mention dealing with heavy accents, bad signal and awkward silences- the stress is a killer!

Worse still when someone asks you to answer their phone!

I don’t mind answering too much if it’s someone I already know, but when it’s a stranger….

“What do I say?

What if the person on the other end thinks I’m them?

How long will I have to talk until they can take the phone away from me??”

AAAAGGGHHHHH!!!!!

It makes me feel beyond awkward answering someone elses phone!

Not to mention the awkwardness of dealing with telemarketers and scammers…I try to brush them off and don’t want to be rude… but then when they keep pushing their product on you, I feel too awkward not to listen! I just sit there burning up, waiting for an appropriate opportunity to tell them ‘no’ and run! 😛

Sometimes I just want nothing more than to throw my phone at the wall! 😛

I will do everything that I can to avoid calling someone, if at all possible. I will email, text, Whats App, Facebook etc. before I will ever go near my phone. If the phone rings in the house and I’m closest to it, I have been known to get up and leave the room for the bathroom to force someone else to pick up the receiver! 😛

This meme is a pretty accurate transcription of actual conversations I’ve had with my mother 😛

Over the years however, I have gotten more comfortable with the phone. When I was younger, I never really knew how to act appropriately on the phone. When someone asked to speak to another member of the house, I would freeze up and throw the phone at that person while the caller was still talking! 😛

Since then, I’ve gradually developed my phone etiquette and learned to relax a little more when answering the phone. Practice makes perfect I suppose 🙂

Making calls can still be a little tricky.

A lot of it is tied up in the anxiety of not being able to see the person on the other end. When you initiate a conversation in real life, you know if the person is amenable to talking. If I call them however, my brain starts worrying about disturbing them if they’re busy or whether they really want to talk to me or not.

And then there’s the added stress of “I’ll call you back,” and the panic that ensues when they don’t.

“Did they forget?

Did they not want to talk to me?

Oh God, do I need to call them back???!!”

But as you grow older, these worries begin to fade. You just have to take a deep breath, press call and go for it! 🙂

An email is not going to fix your internet (for obvious reasons 😛 ) or secure your hair cut! 😉

Top Tip: It helps to remind yourself when calling strangers that they can’t see you, they don’t know you so they can’t judge you if you say something stupid 😉

Have a good week everyone! 🙂

Aoife

May 15, 2017 2

Autism 101- ADHD

Greetings Earthlings! 🙂

So today I’m going to be talking a little bit about-

Haha! Sorry about that! 😛 Although fun story- genuinely stopped mid conversation to cry “SQUIRREL” when out with a friend recently! 😉

Yes that’s right, today we’ll be talking about ADHD in autism- also known as attention deficit hyperactivity disorder.

ADHD is commonly diagnosed in autists (in the region of 29-83%), causing such difficulties as impulsiveness, over-activity and poor attention.

There are 3 main types of ADHD:

Inattentive ADHD (formerly known as ADD (attention deficit disorder))- This can manifest in a number of ways such as a lack of attention to detail, losing things, organizational problems, making careless mistakes, having trouble completing tasks and struggling to sustain attention.
Hyperactive-Impulsive ADHD- Signs of hyperactivity and impulsivity include restlessness, excessive talking (Guilty!) fidgeting, interupting others, impulsive descisions and activities etc.
Combined Inattentive and Hyperactive-Impulsive ADHD

Personally, I would have really mild combined ADHD tendencies. In addition to my sometimes impulsive nature, I have a habit of zoning out of lessons and conversations, sometimes even films, books and TV shows for brief moments, completely lost in my own thoughts.

I can be pretty easily bored and distracted!

Half the time I’m not even aware of it happening. I could be reading a page in a book one minute, and suddenly find myself halfway down the next page, without any idea of what I was supposed to have taken in! Other times I find myself in a room in the house unsure as to why I came in as I hopped onto another train of thought mid action! I often have to repeat tasks over and over in my mind to ensure I don’t forget them.

My mind just completely wanders off…

But somehow I’ve always managed to hide my inattention. It never really posed a problem at school. Teachers knew I was away with the fairies, but could never seem to catch me out when pressed! 😛 I suppose my deductive skills must have learned to compensate for my temporary lapses in concentration! 😉

Top Tip: Studies have suggested that playing video games may be beneficial to improving concentration in ADHD.

Just because concentration can be a struggle however, does not mean that you can’t concentrate.

Interestingly, there occurs a concentration paradox in ADHD and autism known as hyperfocus- an intense form of concentration where you are completely absorbed by a task, something that I like to call “The Zone”. I’ll write a separate post on hyperfocus at a later stage 🙂

Aoife’s Top Tip: Applying specialist interests to tasks can encourage concentration. Last year I was struggling to write an essay for college, I found an angle that allowed me to write about Eurovision and suddenly I couldn’t stop writing! 🙂

In addition to my lapses in focus, I can also be a little bit hyperactive. Now, hyperactive doesn’t necessarily mean bouncing off the walls like a child high on sweets, it can also mean abnormally active.

I am quite a restless individual. On the outside, I may look like I’m staring at a wall, in my mind I could be designing a cake, a knitting project, writing a story or drafting a hypothesis. I once spent a train ride visualizing, staging and arranging a musical based on the music of My Chemical Romance!😂

I always have this need to be productive, even if it’s as simple as building my trophy collection on the Playstation or binge watching a TV series.

My brain never turns off!

If I’m excited enough, I do bounce around the place on occasion too 😉

But what’s going on in the brain that interrupts our concentration?

It is not clear what exactly causes ADHD in the brain, but remember neurotransmitters? (Inside the Autistic Brain, Autism 101-Sensory Processing, Autism 101- Digestive Problems)

Most current models point to low levels of the neurotransmitters Dopamine and Noradrenaline. Pathways involving these chemical messengers project to the striatum and prefontal cortex of the brain- areas which are responsible for executive function (i.e. memory, planning, organization, behaviour control etc.). If these neurotransmitters are out of sync, this will have an effect on these functions. As neurotransmitters are also dysregulated in the autistic brain, this would explain why ADHD so commonly occurs in autism.

ADHD, like autism, can’t be cured, but it can be treated with cognitive behavioural therapy (CBT) and medication in severe cases, however, the side effects of medical treatment for ADHD have been controversial, and long term usage studies have yet to be completed.

However, like autism, ADHD need not hold you back in life. Some of the most successful people in the world have ADHD, such as Sir Richard Branson, Justin Timberlake, Simone Biles, will.i.am, Russell Brand, Ryan Higa, Jamie Oliver, Jim Carrey and Solange Knowles 🙂

So to conclude Earthlings-

Wait! What was I saying again?! 😉

Have a good weekend guys!! 😀

Aoife

May 10, 2017 47

Autism and Driving

Greetings Earthlings! 🙂

Soooo….driving…

Wouldn’t be high on my list of favourite activities I’ll admit! 😛 Stressful roundabouts, merging onto busy roads, idiot drivers, getting lost, the noise of hitting a pothole- it can be a lot for an aspie to handle!

My coordination issues did not make it the easiest of tasks to get the hang of, that’s for sure!

Coordinating pedal movements and gear changes, difficulties with spatial awareness, not to mention the stress and anxiety of learning to drive on country roads (Irish country roads tend to be narrow, winding, and full of potholes! 😛 ) made this a highly frustrating experience!

I never could understand why I found it so hard to get the hang of driving when my sisters took to it so easily, but after I got my diagnosis, my struggles began to make a world of sense!

Driving would not be the first thing to come to mind when someone pictures the struggles an autist faces. In fact it’s a requirement in some countries that your ASD diagnosis be listed on your drivers licence if it impacts your ability to drive safely– you can even be fined in the event of an accident if it’s not stated on your licence!

Studies among autists actually report more traffic violations than in neurotypical groups, however, this may relate to our tendency to be more honest than our neurotypical peers 😛 😉

This doesn’t mean that autists shouldn’t drive, but it’s something to be aware of.

So how exactly does autism impact our driving?

Impulsivity– Autist’s are naturally more impulsive than neurotypicals. This can impact our driving by causing us to make poor driving decisions on impulse. It has also been reported that this impulsivity may influence speeding behaviours
Sensory integration/processing issues– Driving involves a huge amount of sensory input. Listening to the engine, watching the road, spatial awareness, not to mention unexpected road noises and unpleasant smells from the outside- it can be a lot for the autistic brain to process when moving a vehicle
ADD & ADHD- Autists can get distracted quite easily…on busy roads where lot’s of things are happening, your focus can sometimes waver. If there’s a cute dog nearby, I have been known to take my eyes off the road…
Spatial Awareness & Coordination– Autists often have issues with these which can make it difficult in positioning the car on the road, parking and navigating gear changes. Spatial awareness was one of my greatest obstacles when first learning to drive. I always seemed to be veering towards the nearest hedge…When I first got my car, I was practicing driving around the house with no problems, aaannd then I decided to change direction- BIG mistake! My poor spatial judgement caused me to nicely scratch the car on the edge of the dog house…before getting it stuck on some cement blocks at the oil tank! Caused a mini shutdown which made my sister think I had run the dog over I was so incoherent!! 😛

Top tip for parents and instructors: PATIENCE!!!! Learning to drive is much more difficult for autists so don’t be too hard on us for when we don’t get it straight away. We’re already beating ourselves up for our slow progression; getting frustrated or annoyed with us will only make it worse.

Here are some useful links with driving tips for autists:

Click to access Driving1.pdf

https://sellmax.com/driving-with-autism/

Aoife’s Top Tip- Get a Sat Nav. They really help to take the edge off when stressed about driving to new and unfamiliar locations. If you mess up, it will recalculate and send you right in the end 🙂

Having autism may initially make learning to drive difficult, however, you will get there in the end 🙂 After two years of stressful practice, I passed my test first time and drive everywhere now.

The freedom you gain from this skill is worth the fight 🙂

Aoife

May 5, 2017 7

Autism “Cures”?

Greetings Earthlings! 🙂

Many of you may have come across articles or ads online claiming to have “cured” or found a “cure” for autism.

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Notice my use of air quotes? 😏

According to both the medical and scientific community- there is no cure for autism; fact!

Autism can be managed; but it cannot be cured.

In truth, these purported “cures” are unproven, and in some cases, quite dangerous. Here are the facts about some of these products/techniques:

Raw Camel Milk (whhhhyyyy!!!) & Essential Oils are just some of the many products retailed as a “cure” for autism. Neither have been proven safe or effective by the FDA
Hyperbaric oxygen therapy: Remember those stories about Michael Jackson sleeping in an oxygen tent? Some have claimed that breathing oxygen in a hyperbaric chamber can “cure” autism, but this is completely unproven
Detoxifying clay baths: These are mixed in with bathwater to supposedly draw out toxins, pollutants and heavy metals in order to “dramatically” improve autism; but again, these are entirely false claims
Diet Change: Some articles report that following a specific diet can “cure” autism. As I’ve previously discussed, many people report improvements in autistic symptoms following gluten (a protein found in grains like wheat), casein (a protein found in dairy) and sugar free diets, but there is insufficient scientific evidence to support this. Many doctors have recently spoken out against these fad diets as they can be very bad for your health if you unnecessarily remove these foodstuffs. Gluten free diets for example can increase your risk of cardiac problems through decreased intake of essential wholegrains
Chelation therapies: This is a medical procedure where chelating agents are administered to bind and remove heavy metals and toxins from the body, such as in the case of mercury and lead poisoning. These are often marketed as “cures” for autism, coming in the form of suppositories, sprays, drops, capsules, and clay baths. These are NOT approved for the treatment of autism, and should only be used under medical supervision, as they can remove important minerals from the body which can cause serious life-threatening issues such as deadly kidney damage!
Miracle Mineral Solution (MMS): This is perhaps one of the most dangerous “cures” for autism. A solution that claims to cure HIV, cancer and malaria in addition to autism, MMS contains 28% sodium chlorite solution- equivalent to industrial strength bleach! People have reported vomiting, diarrhea and symptoms of severe dehydration after taking this, but the labels claim that this means that the product is working!! This can also cause life threatening low blood pressure and death in severe cases. Naturally, this has not been proven to cure autism.

The bottom line, these so called “cures” are nothing but

For those struggling parents out there, I know it’s difficult. I wreaked havoc as a child and did not make life easy for my family; but seeking a cure is not the answer. Love and acceptance are the best way forward 🙂

This stuff is dangerous and can make your child very sick indeed.

Always be wary of what you read/buy on the internet dear Earthlings!

Aoife

May 5, 2017 2

Autism on Screen-Mozart and the Whale

Greetings Earthlings! 🙂

To mark the end of autism awareness month, today I’d like to tell you about a film that in my opinion, is probably the most realistic representation of autism on screen- the 2005 romantic-comedy-drama film ‘Mozart and the Whale.‘

Image result for mozart and the whale

(This film is also called ‘Crazy in Love‘ in some parts of the world)

The film follows the turbulent relationship between Donald (Josh Hartnett) and Isabelle (Radha Mitchell)- two adults with Asperger’s syndrome who meet at an autism support group.

Check out the trailer below:

What makes this film stand out from the crowd is that the film illustrates two very different pictures of AS and two different levels of functionality.

Donald, contrary to the OCD stereotype, lives in a hoarders paradise surrounded by birds (and their droppings…), and works as a taxi driver as he is unable to navigate job interviews to make use of his university degree. Isabelle in contrast lives in a highly organized environment, hairdressing by day and painting by night; maintaining a relatively normal social life and appearing to outsiders as merely eccentric.

Mozart and the Whale

In watching their interactions, a clear difference emerges in their expression of AS. In addition to this, the background support groups also provide us with different pictures of autism with no two characters appearing the same.

Autism is unique, and this film remains true to that.

Another key element to this film is that of gender and autism. Other films such as ‘Snow Cake‘, have a tendency to portray women using the male experience of the condition, however, in this film we can see that there is a clear difference between autistic men and women.

Unlike Donald, Isabelle appears relatively normal to an outsider, albeit eccentric. She performs better socially and in the workplace, and largely appears to be in control. The film also hints at Isabelle’s developed social coping skills when she says:

“I can’t keep from shocking people so I make it work for me.”

As someone who made great efforts in college to turn qualities that were once perceived as weird into (hopefully) endearing eccentricities, this remark completely resonated with me.

However, like many women with autism, Isabelle struggles with issues of mental health and she is seeing a therapist. This film gives us a true insight into the realities faced by many women living with AS.

This film has divided some critics as to it’s accuracy in it’s portrayal of autism. On the one hand, it has been praised by many critics as one of the truest cinematic representations of autism, however, others have criticized the film for portraying the leads as having savant skills (Donald is mathematical; Isabelle has artistic and musical savant skills).

I know, I sound like a hypocrite as I often give out about this over-representation,

BUT

the characters in ‘Mozart and the Whale‘ are based on a true story!! 😀

The film is loosely based on the love story of Jerry and Mary Newport, two people with AS who are savants!

Image result for jerry and mary newport

You can read a bit more on their story over on Goodreads:

http://www.goodreads.com/book/show/163483.Mozart_and_the_Whale

Fun Fact about the Film: The screenplay for ‘Mozart and the Whale‘ was written by Ron Bass- the same screenwriter for ‘Rain Man‘!

This fact is made even more interesting by the fact that ‘Rain Man‘ is often considered inaccurate, while ‘Mozart and the Whale‘ is perceived as the most accurate.

In comparing both films, we can really see a clear change in attitudes towards autism in the intervening 17 years. We move from a dramatic and stereotyped vision of autism to a friendlier, more accurate portrayal of the autistic condition.

If you want to watch a film about autism, this is the one to see.

This film definitely get’s Aoife’s ‘A’ of approval 😉

Aoife

May 1, 2017 3

Autism 101- Shutdowns

Greetings Earthlings! 🙂

Leading on from the previous post, I’d like to talk to you about shutdowns and autism.

So what exactly is a shutdown?

A shutdown is basically an episode where the brain briefly stops processing and making sense of information in response to stress or sensory overload.

The lights are on, but nobody’s home.

These episodes are much more discrete than meltdowns, and can often go unnoticed by the outside world. Sometimes meltdowns can turn into shutdowns and vice versa.

So what does a shutdown feel like?

Like meltdowns, shutdowns can manifest differently among autists. Some people go completely limp and unresponsive, some withdraw completely from those around them, some even become really sleepy and nod off.

For me personally, a shutdown is like entering a state of shock. You might struggle to move (as discussed in my diagnosis story), formulate sentences, or even think. It can be a completely overwhelming experience. When I first started to become aware of them as a teenager, I had no idea what was going on; I just knew that I felt, for lack of a better word, “wrong”.

Like meltdowns, in my experience, shutdowns can be either mild or severe:

Mild shutdowns tend to happen in social situations, especially in confrontation. Someone throws me off or says something that I hadn’t anticipated…aaaannnd my mind freezes up. I go limp and say nothing, whilst the other person talks on oblivious. To an outsider it looks like I’m just listening or defeated by an argument; in reality, my brain can’t formulate the words to respond.

The minute the conversation ends my brain reboots and suddenly all that I could or should have said comes rushing back- great timing! 😛

Severe shutdowns, like meltdowns, are brought on by serious stress, or a shock. Think of your brain like a computer that’s been attacked by a virus. The system get’s overwhelmed by the attack and needs to shuts down to recover. When this happens, it feels as though I’ve been locked out of my own brain.

However, unlike a meltdown situation, I’m locked out yes, but the brain hasn’t been hijacked. I’m not in a state of total control, but I’m not out of control either- a little bit purgatorial in nature.

It’s a very odd sensation.

I find myself in an overwhelming situation and fail to react. I know that I don’t feel right about the situation, so I try to break down what happened and process. However, when I go to think about the event, it’s as if a firewall has gone up and all of the files in my brain have been encrypted. You keep trying to access your files so you can run a scan to diagnose the problem, but your brain keeps locking you out.

It feels sooo weird, like my mind is flashing this giant ‘NOPE’ sign at me every time I try to think! 😛

^^^accurate representation of my “access denied” face 😛 😉

During a particularly bad shutdown, I once spent about 5 minutes of going “um…ah… what it is… er…you see…uh” down the phone to my mother before I could coherently form a sentence to tell her what had happened. My mind simply refused to let me go there!

But why do shutdowns happen?

There’s not a lot of information out there as to the biological cause of shutdowns, but experts seem to think that it is the result of an abnormal stress response like the meltdown, possibly linked to the high and persistent levels of stress hormones in autism. Some have theorized that the shutdown is almost a preventative form of meltdown wherein the autist shuts down to prevent further sensory input and injury- like playing dead to avoid a fight.

Shutdowns can be difficult, but you just have to give them time to pass 🙂

Top Tip: Like a meltdown, you can sometimes speed up a shut down through music. Animals are also particularly good to release the hold of a shut down. My dogs always seem to sense when something’s wrong with me- a concerned look from them will often get the waterworks flowing 🙂

Remember- your brain needs time to recover after a stressful incident- there’s a reason you need to leave your computer a few minutes rest after a reboot 🙂 😉

Enjoy the bank holiday weekend! 🙂

Aoife

April 28, 2017 16

Autism 101- Meltdowns

Greetings Earthlings! 🙂

Leading on from Friday’s post, I’d like to place the autistic meltdown under the microscope today.

So what exactly is a meltdown?

To an outsider, meltdowns appear like temper tantrums. You see a petulant, naughty child that didn’t get their way. Screaming, throwing things, violent behaviour- it seems like a tantrum, but the reality is very different.

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Meltdowns are described as a temporary loss of behavioural control in response to an overwhelming situation or stimulus. This can manifest physically (lashing out, kicking, biting etc.), verbally (shouting, crying, screaming) or both.

So what’s happening in the brain that causes these outbursts?

The human body increases secretion of what are known as stress hormones (e.g. adrenaline, cortisol) in response to a stressful situation. Studies have shown that autists have higher levels of these stress hormones than their neurotypical peers.

When a stressful situation passes, stress hormones should return to normal levels. In the case of autism however, these hormones persist in the body for some time afterwards. The autist is left with residual levels of biological stress which make us more susceptible to stress related outbursts.

Release of stress hormones is controlled by the hypothalamic–pituitary–adrenal axis or HPA axis, a complex interconnecting network that comprises the hypothalamus, the pituitary gland and the adrenal gland (i.e. HPA). This system controls how the body reacts to stress. Research suggests that this system is hyper-reactive to stress in the case of autism.

In particularly stressful or harmful situations, our bodies enter a heightened state of physiological stress which triggers the “fight or flight” response. High levels of stress hormones such as cortisol and adrenaline increase the release of glucose (to give a burst of energy) and increase blood pressure (to divert blood to the muscles) in order to prepare you to either fight the danger or run away from it.

This response is triggered in the case of a meltdown.

Excessive stress hormone release pushes the brain over the edge. The brain thinks it’s under attack and instructs the body to protect itself at all costs. The autist is in instinctual fight or flight mode at the mercy of their stress hormones.

Meltdowns manifest differently from person to person. When I would meltdown, it appeared as though I were throwing temper tantrums as I stood and fought my corner; other times I would run away from my trigger somewhere quiet. Sometimes I fought and then ran away.

My parents tried everything to get me to control my “tantrums”. Taking away toys, sending me to my room, bribery, guilt, you name it!

Bribery was perhaps one of the more successful tactics they used. My meltdowns were at their worst around the age of 6, so my mother implemented a sticker reward system. If I behaved myself, I got a sticker for the day on the calendar. At the end of the month if I had a full set of stickers I would get a present.

It didn’t really work though…I only managed maybe two months without incident, and I doubt that they were consecutive. I still think fondly of that hard earned Monkees greatest hits tape (such a Hipster child! 😛 ) and Hula Hair Barbie! 😉

Anyone else remember her?

One year, I was even asked to give up losing my temper for lent!!! 😛 I lasted about 4 weeks, had a meltdown and subsequently felt like the worst person in the world for letting Jesus down!

It seemed biology had a different plan- how naive we were! 😛

So what does a meltdown look like for me?

I like to classify the severity of a meltdown on a scale from 1 to 3:

Stage 1: These are very mild and normally pass within a few minutes. Usually these entail getting a little bit overwhelmed and starting to cry unexpectedly- often mid sentence! Think of these moments as opening the steam valve to cool the system 🙂 Maths classes for example triggered many of these mini meltdowns- I wouldn’t understand a concept or problem, get frustrated, aaaannnnd suddenly find myself choking back tears while my exasperated maths teacher attempted to break things down for me (or if this happened mid-homework I’ve been known to throw my book at the wall 😛 ).

Stage 2: This type of meltdown is a little more intense spreading out over several minutes, hours, and if particularly overwhelmed, on and off again over days. A situation, rumination or accumulation of stress tends to set these guys off. If wound particularly tightly, something very simple may tip the scales in this case- “You don’t want to play with me? FINE!” **Core meltdown activated**! Tears flow, your chest gets tighter and breathing can be difficult. This tends for me to be a “feeling” or cathartic stage. You’re in overload and need to feel, think and process the triggers until the storm passes.

TIP: I find that reasoning and music (songs that relate to the emotion or trigger) often work well to calm you and speed up the process. Hugs are also greatly appreciated as deep pressure calms and eases stress 🙂

In this stage I find that shutdowns can also happen, wherein I struggle to speak, think and even act (an experience I’ll delve into further on Friday 🙂 )

Stage 3: Enter the dragon! These are full scale, out of control meltdowns. Fight or flight is triggered and you are working on autopilot. The brain has been pushed too far and launches all out war. These tend to be brief, (gradually abating to a stage 2 meltdown when the adrenaline wears off), but are highly destructive. You can literally say or do anything in this heightened adrenal state. Your mind believes it’s at war and will act accordingly to protect itself. Reason is useless; scolds are futile. The real Aoife is locked outside her brain, banging on the door desperately trying to re-enter the cockpit. I’m aware that I’m out of control and want it all to stop, but am powerless to do so. Nothing can be done but wait until the door is unlocked once more.

TIP: Anger and attempts at restraint are useless in this situation, it only fuels the fire. Remaining as calm as possible until the mist passes is key.

I know these can sound a little scary, but they do decrease in frequency with time and stress management. It takes a significant stressor to trigger a stage 3 for me anymore 🙂 Happy stage 1 meltdown’s, like hearing the Phantom of the Opera overture, can even be quite amusing! 😛 😉

Meltdowns are tricky, but easily managed when you understand them for what they are. In the years leading to my diagnosis, without knowing it, I developed methods to help ease these passing hurricanes. Deep breathing, writing out my emotions, hugging a pillow or giant teddy, talking, and praying, but most importantly music. Music is key for me personally. The melodies, the riffs, but especially the lyrics; they soothe my soul. They verbalize the emotions I’m struggling to identify and process, guiding me safely past the storm 🙂

A meltdown is not a tantrum; it is not attention seeking behaviour; believe me- no one wants it to stop more than I do.

It is a biological response to excessive stress. We have no control over it. Punishments and judgments will only make things worse. Growing up would have been so much easier had my friends, family and (most importantly) I understood this.

Love, support and understanding are critical to meltdown management.

So try not to judge that kid crying hysterically in the corner at a party- there may be far more to it than you realize 🙂

Aoife

April 24, 2017 59