8 Summer Survival Tips

Summer is a time of year I love. The sun, the beach, getting outdoors, BBQs, all great fun, but for many this is one of the most challenging times of the year. For us aspies change is a big deal, but someone forgot to tell Mother Nature and she's decided it's time to heat the Northern Hemisphere up again for another few months...

Schools close down, my regular support networks go into 'summer mode' - regular meetings stop and sensory issues take on a whole new dimension.

Growing up I found school so traumatic that the prospect of 6 weeks off excited me no end, but I'm sure my parents dreaded this! Even though I enjoy summer I still get affected by the disruption.

In this post I'd like to share the top 8 things I've found that have helped me make the most of the summer months. I hope you enjoy reading this and if this is an area you or your child struggles with then I do hope it is helpful or gives some ideas you might be able to try.

1.  Make a plan

BBQ invites, pool party, summer club, family visits, friends out of town, is quiz night still happening? What's going on?!

How do I co-ordinate the ad-hoc randomness that is summer? I plan. I plan everything. Neat, orderly and visual is how I roll, so for me making sense of summer involves a plan too.

I have both a wall planner to plot my weekly schedule and a page a day diary to track what I intend to do. It's colour coded and very visual. I can instantly see what is and more importantly what isn't happening. Now I work full time it is far easier to keep routines going but over my school days having a visual chart made it easier to see what was happening. 1 week at home, 1 week at Granddad's, 1 week back home etc. It may sound overkill to plan in such detail, but a simple change in my regular routine can cause me huge confusion if I'm not careful. If I'm used to attending club on a Wednesday evening but it's not on during August, then I default to being confused every Wednesday in August. It's far easier to plan advance what I'll do during that time so I don't go into a spin over it later.

2.  Have a sleep routine

I don't sleep well EVER. Summer is worse. I barely sleep AT ALL! OK, so this may be an exaggeration but tiredness features very large in summer for me. My sensory issues mean I struggle with the heat, the light and the sound. If it's too hot, I won't sleep, if it's too bright I won't sleep, if it's too loud... you get the picture.

So here in the UK heat is a relative thing. I'm too hot today and it's 20C (68F) - I've just had a message from a friend in the USA, it's 40C (106F) there. I should quit my complaining and move to Greenland! It does however mean that I have a very low tolerance to heat when it comes to sleeping, the bedroom must be cool!

This far north the issue of light also causes problems. It gets dark at about 10:30pm and light again at 4am. I have a thick blanket I drape over the blinds to keep the light out, otherwise I'm wide awake very early! Of course this unhelpfully keeps the room nice and toasty.

Noise might not seem a particularly summer issue but here's the problem. In the winter my window is shut and everyone is inside, nice and quiet. In the summer the opposite is true. Saturday night I had the pleasure of listening to a neighbours party roll on until 4am, it wasn't a crazy party, but enough to stop me settling.

I live in a crowded British town, so until I win the lottery and move to an isolated cottage in Svalbard I have to prepare for sleep in advance. Making sure to keep the room cool, earplugs at hand, no caffeine after noon and if all else fails a cup of warm milk and a nice book.

3.  Know your limits

It's so easy to take on too much in the summer. I find it hard to sit indoors when the sun is out. Britain is famous for it's rain, it's true it rains any when and everywhere. If it's sunny it could last an hour or a week, but there's no guarantee. So many times the sun comes out, you plan a beach trip for tomorrow, by then it's cold and rainy. I have a tendency to end up doing too much and forgetting the importance of resting and having days off. I make a point of planning 'Do Nothing' days in my diary to make sure I get to recharge.

4. Keep hydrated

I think everyone gets a bit moody when they're a bit dehydrated, but it's especially important for me as getting a bit moody makes me less likely to spot and deal with meltdowns. Meltdowns can cause my body temperature to soar and have seriously dehydrated myself this way in the past. I have water at hand everywhere I go and make sure I keep drinking regularly even if I don't recognise I need it.

5. Sun screen, sun screen and more sun screen

The lobster look isn't great and we all know the dangers of sunburn. The problem is applying the lotion. I don't like the feel of it and I don't especially like being touched so getting someone to rub it in is a pain. What's more of a pain though is dealing with the sleep problems when I've turned into a 6foot blister on legs. I think the sensory issue of yucky lotion is better than skin cancer. I tell myself each year that I'll learn this issue; I say as I type away with sunburn yet again.

6. Earplugs

Earplugs? Yes earplugs are on my summer survival list. People get loud in summer, windows get opened, music gets played. I want quiet. Easiest solution is to put in earplugs. If I'm out I'll substitute these for headphones. They don't have to be connected to anything, they can simply muffle the noise enough for me to enjoy the beach or park or wherever I am. I think my parents might have liked this approach when I was a child too. Seeing someone with headphones on is a great visual clue that I shouldn't keep talking at them. It might have saved my parents the constant interruptions from me while excitedly showing them my collection of woodlice or broken pottery or whatever I was whittering on about as a child!

7. Get outdoors

Alone or with friends and family, I love to get outdoors. I like to get out all year round but summer offers some great new options. I had lunch today sat by outside and then spend the afternoon reading a book. Very peaceful and relaxing. Go for a walk. Get some fresh air. I find that the exercise and fresh air helps me sleep and lifts my mood. Geocaching is a personal favourite. Fun for adults and children alike. A modern global treasure hunt. In essence it is using multimillion dollar satellites to help you locate hidden Tupperware boxes filled with rubbish toys. Give it a try!

8. Stay in touch

Finally for me it's important to stay in touch. Friends and family who may be away and disruption to routine can leave me feeling isolated. The wonders of the internet allow for easy communication with people around the world. If I recognise I'm getting a bit lonely it's very easy to send a message or text and keep in contact with people who are important to me.

I hope you've found this list of interest. I'd love to hear what you enjoy most about summer and how you overcome the challenges you may find with this time of year. Feel free to let me know via the comments or Facebook. Enjoy your summer!

A Little White Pill

How do you medicate a neurological condition? You don't, but in the absence of affordable therapies the healthcare professionals often resort to throwing pills at the problems and hoping it goes away. Due to the complex issues that living with autism causes I'm often subject to severe anxiety, depression, hypoglycaemia, insomnia, digestive problems; the list goes on. These can all be helped by medication so often these side-affects to autism are managed with medication while leaving the underlying triggers in place. Unfortunately this means that medications for ASD related issues can have very strange and unexpected effects and interactions. Finding the right balance can take years of trial and error.

We all have an opinion on medication, whether you're pro, against, reliant on, don't need the pills. I hope with this post to give a humorous look at my (unsuccessful) journey with meds. I've changed the names of the meds and the doctors for two reasons.

1.         You may find the meds effective and I would under no circumstances want to dissuade you from taking what's been prescribed for you, this post is merely MY experiences - and I'm aware that I am one of those people that has bad side effects. You may not!

2.         The Doctors and Pharmaceutical companies have better lawyers than me! Please don't sue me!

So here is a light hearted look at my story.....

Doctor, What do I do??

Me: 'I'm having terrible meltdowns, help me!'

Doctor: 'Take 2mg Lethargopam tablets twice a day. they'll sedate you'

1 month later...

Me: 'These pills stop me functioning, I'm TOO sedated! this isn't better! I'm getting terrible anxiety'

Doctor: 'Take 7.23mg Pumpozoidbloodmax 36mins before meltdown, they'll help'

1 month later...

Me: 'I keep getting dizzy with these. I fell down the stairs and I can't remember anything that happened yesterday!'

Doctor: 'Increase the dose to 45mg Lethargopam tablets whenever you feel anxious and Take 2x 46mg Sparkofartozol with food 6 times a day, they're highly addictive. You must not take them for more than a week. Here's four week's worth'

1 day later...

Me: 'I felt anxious and took a Lethargopam, but still felt anxious. I've now had all 28 and still feel anxious!'

Doctor: 'That's a serious overdose! You must be running short, here's another 28 Lethargopam'

Me: 'Is it wise giving me more of these when I've just overdosed on them?'

Doctor: 'You're catastrophising, take a lethargopam'

1 month later...

Me: 'I'm back to where I started and am now more anxious. I'm now depressed, Mr Twinkleton has stopped functioning, my girlfriend is unhappy, I'm unhappy,take me off these stupid pills!'

Doctor: 'Oh? Is that a problem?'

Me: 'YES! FIX IT NOW!'

Doctor: 'You'll get withdrawal effects if you come off them now, possibly anxiety, depression, suicidal thoughts, heart failure, death (*Seriously, these were genuinely listed!). Here's some Glumobetalol 72.35mg capsules. Take one every 48 minutes.'

1 month later...

Me: 'I'm puking in the mornings and have put on three stone - these pills have made me PREGNANT!'

Doctor: 'Steve, you're catastrophising again. Take these Cranialblipodeathmax 560ton antipsychotics'

Me: 'I'm not psychotic...'

Doctor: 'These pills will fix that - just don't take with alcohol'

1 beer later

Unicorn: 'Steve, I've been pondering the meaning of life, what are your thoughts?'

Me: 'Well Mr Unicorn, good question..... wait.....unicorn?.... Why am I on pills that have made me hallucinate??'

Doctor: 'Well it's you're choice whether you take the pills I prescribe. Here have some Lethargopam tablets. I see from your notes that they didn't work last time so we'll try them again'

Flushed toilet...

nasty withdrawal effects...

1 month later...

Am I still on the pills?

Take a guess....

Well... I do still have medication but it's now much better controlled. I take a sedative to help with meltdowns, beta blockers for heart rate and sleeping pills sparingly. In extreme cases I find the medication I currently have seems to work well for me now, but I'm definitely far more cautious when it comes to which pills I take.

I would be very interested to hear your thoughts on medications and hear your stories. Have you found success with meds or do you find them unnecessary? Feel free to comment and share. 

5 times you should tell someone you're an Aspie

Should I tell them I'm Autistic? This question comes up regularly and it's never an easy one to answer. Sensory Overload is hitting and I feel myself building into a meltdown, I've started to draw attention to myself and am acting odd. 'Should I say I'm autistic??' I panic, and excuse myself by saying 'Sorry I'm just a bit drunk' and running off. This is a great approach in a bar with friends but not ideal at work or when talking to the police!

So when is a good time to disclose your condition? It varies so much depending on circumstance and personal preference, but here is my top five list of times I've found it helpful to come out of the autism closet....

1. Dating

'Shouldn't they like me for me, why do they need to know?' Indeed, if you're looking for a quick hook-up then great but if you're in for something long-term, well if you're an aspie then it's part of you that might be relevant to let them in on at some stage. In a relationship my aspie tendencies can make relationship dynamics a bit different to what might be expected. A great example is if I'm not feeling good then I need alone time; yet in a relationship there is an expectation to talk. Do I want to be leaving a girl feeling like I'm rejecting her when I'm just trying to fend off a meltdown? No, of course not! But with open communication it's easier to talk about these situations. I try and approach the subject of autism early in the dating game. 'Hi I'm Steve, I'm autistic' will send 'em running, but casually steering the conversation towards the subject after a few dates seems to work well. It also gives a clue as to their preconceptions.

'I did a talk at an asperger's support group last week' I offered to my date. The reply,

 'I dated a guy once, he was well fit, but then he said he was autistic. I was like yeaugghhh!'

This one clearly wasn't to be the love of my life - at least I knew before getting too involved!

2. Work

Employment is a big issue and a big part of life. For me it is a no brainer, my employers need to know! For many, the opposite response would be heard. But why not be open with the people you probably spend most of your day working alongside? Perhaps it comes down to this question...

'What if they discriminate!?'

Yes this is a real and ever present thought with employment. The hard answer is, yes they might. It's a hard fact of life that people can sometimes be small minded idiots and no amount of laws and legislation can change that - this is exactly why I see it as essential to be open about it! Think about it, a large portion of your life is spent at work. If your potential management are unsupportive or discriminatory then perhaps it's better to find out before accepting a job with them?

Assuming that you are not in possession of a magical neurocloaking device which enables you to completely hide all aspie traits, it is likely that at some point it will come out anyway. I feel more comfortable knowing I have allies I can turn to if I get into difficulties. I've had many times in my working life when I've had to address issues. It's never easy but when the condition is already out in the open then it is easier to address the problem directly. For instance simple communication difficulties can be addressed so much faster if you aren't tiptoeing around not revealing yourself as autistic.

The benefits for me in disclosing this with management has far outweighed any negatives I've ever encountered. Adjustments, flexibility and genuine caring support from colleagues - all of which wouldn't have happened if they hadn't have known.

Who and when to tell? I'd always say your line management should know, but not necessarily all your colleagues. I think by posting this blog everyone knows in my case, but for you, use your discretion and seek advice from someone you trust.

When to tell? Again up to you, but Preferably before having a meltdown at work. Believe me, having a meltdown at work if they haven't been told about your condition is MESSY!

3. Police

You've just crashed the car and the police turn up. What do you do? Have a meltdown probably! Any situation that involves the police will probably be stressful in some way and acting odd at this stage is probably not ideal. I carry an alert card in my wallet and car for this very reason. In the UK all police officers are (should be at least) autism trained and this does at least give you a bit of back up should they start getting heavy handed. As a meltdown can be mistaken for drunkenness or violence to an onlooker it is really in your best interests to find a way of alerting them that it's not before you get pepper-sprayed and dragged away. This has never happened to me, but the alert card is staying just in case...

4. Travel

Travel can be a very stressful thing and navigating airports, train stations and bus depots triggers sensory overload. You are trapped with bright lights, noise and people. By letting staff along your way know of your condition you often find people go out of their way to ease your journey. I always get pre-boarded on flights as this helps me settle before the masses arrive. Sometimes it is possible to be met and escorted or found a quiet room to wait.

5. Leisure Activities

I was always naturally private about my diagnosis. 'I don't want charity' I'd say and would never use the word disabled. Until one day. I don't know what it was but something flipped and I just thought why not! 'I'm disabled!' I chirp while waving my disabled badge at everyone. Doors open, prices drop. Bonus.

Sounds like a great discount scheme but it's actually very helpful and allows for access to places and activities that otherwise would be a strain. Take theme parks for example. Most offer a queue jumping scheme for those with proof of disability. Sounds like a good perk but unnecessary? A 2 hour queue with 200 other noisy people with no clear way out with bright lights on a hot day. OVERLOAD! For most it's an annoyance, but for me it could trigger a meltdown very publicly that renders me out of action for weeks. I'd just have to avoid that ride altogether. The queue jump makes it possible, and why not? Shouldn't we get access to attractions as well?

Thank you for taking the time to read this list. Please I'd love to hear your thoughts on where is and isn't good to disclose your condition, let me know via Facebook or by adding a comment. If you've enjoyed reading this please feel free to share it.

Can I call you an Aspie?

‘Can I call you an aspie? Don’t you find that offensive?’ I’ve been asked this a number of times since starting this blog, ‘Call me what you like!’ would be my flippant reply, but in reality this question hints at a deeper issue. One of personal sensitivities, political correctness and fear of offending. A huge obstacle to open communication is right here staring at us – simply because of not knowing what to and what not to so say.

Why should this be the case? I believe this can be broken down twofold.

As an individual growing up I’ve encountered my fair share of abusive and nasty comments, relentless bullying at school and often unhelpful remarks even from professionals. Unfortunately this experience is all to common for those on the spectrum. Clearly this shapes the way each individual will refer to themselves and which words they find acceptable. When talking with friends on the spectrum I tend to steer my words to match theirs and let them take the lead. After all it is unlikely they will refer to themselves using a term they find unpalatable. For me, the terms I use change to suit the audience. I tend to generically refer to myself as ‘autistic’ to a neurotypical (NT) audience, whereas I sway towards HFA with professionals and ‘Aspie’ amongst friends.

For professionals we encounter a new obstacle. The dreaded political correctness. I appreciate the need for a set standard on terminologies but the ‘correct’ terms changeover time and vary regionally. As a (patient / client / service user / whatever I officially am labelled as!) what I want to be called is irrelevant. Set guidelines are in place as to what to say. This is designed to try and create a unified and inoffensive set of terms for professionals to use.  

Because of all of this, in a hypothetical conversation between myself, my key worker, doctor and friend, we may all be using different terms for the same thing. Confused? I don’t blame you! Lets unpack a few of the phrases and terms you may hear…

Informal Terms:

My blog is called Steve’s Aspie Adventures, so the term Aspie is clearly a good place to start. This is a shortened and slang term for Asperger’s Syndrome. I use it commonly amongst friends and when asked will tend to say, ‘I’m an Aspie’. I do not see it as insulting at all, although it is definitely casual. It would sound strange if my doctor called me an Aspie, but it certainly wouldn’t concern me.

‘So you call each other Aspies, but we (NTs) shouldn’t?’ asked a friend. Good question, but it’s not that simple. For some people the term Aspie is actually very offensive. It could be that it is simply too casual. For other’s it is a cutesy label.

How can you tell if it’s ok to use or not? Listen and ask.

I tend to use the term Aspie in relation to myself, as that pinpoints closer where I fall in the spectrum. But sometimes I use the term Autie. This is a shortened form of Autistic.

It’s not just informal terms for people on the spectrum you may hear, we have lingo to describe those not on the spectrum as well. The term Normie can be used as a slang version of Neurotypical.

Let’s get more formal:

How about Asperger’s Syndrome? This one’s simple right? Wrong! Lets start with that word ‘Syndrome.’ Many people don’t like this word at all and drop it altogether, simply saying ‘Asperger’s’ for others they prefer to abbreviate it to A.S.

The confusion doesn’t stop there. What about pronunciation?

Asperger’s takes it’s name from an Austrian pediatrician named Hans Asperger. In his native Austria the pronunciation would be As-Bur-Ger, so why do we often hear it pronounced As-Bur-Jer? This is simple, we have a clear case of bully fodder here. As South Park’s Eric Cartman so eloquently put it, ‘I’ve got ass burgers!’ while pulling a hamburger from his trousers! I’ve never felt troubled by this pun. In fact I find it quite amusing, however clearly some people can take great offense to this, especially if they have been subjected to cruel taunts in thepast. So let’s stick to the professional terms?

What’s politically correct?

Well Asperger’s (however you pronounce it) officially no longer exists in a professional sense! Since last year the diagnosis has switched to High Functioning Autism (HFA), which is an Autistic Spectrum Condition (ASC) (If you live in England) or an Autistic Spectrum Disorder (ASD) (If you live in the USA) – for other countries this varies. Why the difference? The word condition is seen as a better descriptor and less negative. I agree, but as this is a recent change I'm still used to saying ASD.

To the best of my knowledge, at the present moment in time this is the politically correct term to use is……

A person with an Autistic Spectrum Disorder / Condition

What a mouth full!! I’d never actually use this in real life. Imagine if I used this style of speech for everything.

‘Hi, I’m a person with the name of Steve. I’m a person with 30 years of age, I’m a person with masculine gender, I’m a person with Caucasianness…..’

It’s clumsy, but that’s what we’ve got for now. Until they change it again…

A Final one: Retard

NO! I hear you cry. Indeed, this is never an acceptable term. This, however, was the politically correct word we were using 100 years ago. How times change. What will we be saying in another 100 years I wonder?

I’m Confused!

I know, sorry. There simply are so many terms and so many variations on what is seen as acceptable that it’s bound to be confusing. In a professional sense it’s important to follow whatever the official guidance is for you locally, but in an informal setting? Just use common sense. After all I’d much rather you use the wrong words to me than avoid conversation at all. Us people with Autistic Spectrum Conditions have FAR more pressing issues to deal with than the words you use. Your support is vastly more important to me than whether you use the correct terminology.

I hope you have found this blog useful and hasn’t scrambled your brains. Please share this post if you have enjoyed reading it.

I’d love to hear your comments about theterms you like best and those you dislike. There are so many I’ve not been able to fit into this post and it would be great to hear your feedback.