Autistics Speaking Day 2015: Podcasting from autistic space

By coincidence, I reached the ‘In Autistic Space’ chapter of Steve Silberman’s New York Times bestselling, excellent, but often harrowing autism history book NeuroTribes on the morning November the 1st, Autistics Speaking Day. I’d just finished chapters detailing the pathologization of autistic people’s interests and social behaviours, the abusive origins of ABA and how the early US autism parents movement was derailed from its initial aim of services and acceptance by pseudo-scientific promises of cures and scare stories about causes. So it came as a relief to read about the development of the early online autistic community and in person autistic spaces, of ANI and the first Autreat, and of the birth of the neurodiversity movement.

It was a timely reminder of the importance of autistic people, regardless of where we are on the spectrum, having a voice to counter the stigma and the stereotypes spread by cure-focused charities, autism ‘experts’ focused on a deficit model and the mainstream media outlets that often amplify these messages. Thankfully NeuroTribes is full of profiles of and perspectives from autistic people, and its positive message has been getting widespread media coverage, countering many myths and putting the call for services and acceptance back on the agenda.

The other thing I was doing today was working on the 4th episode of Autistic Flappy Hour, the podcast I co-host along with two other autistic adults, Laurine, who initially suggested the idea on the #autchat Twitter chat, and Cisco, who is one of the founding moderators of #autchat.

There are some challenges in producing a regular hour-long podcast when everyone involved is autistic and busy with many other things. We originally aimed to produce our episodes every 2 weeks, but this quickly proved to be impractical given the amount of preparation and editing required and we’re now aiming to be monthly, although not always succeeding.

In order to make the process of recording accessible to all of us, we write out at least 80% of what we’re going to say in advance using online collaborative document sharing with multiple revisions as we each add comments based on the others’ responses. Even with a script and lots of preparation, during recording we may ramble, misspeak and repeat, or need to stop for breaks or to ask questions. Some of us tend towards saying too much and others tend towards being extremely concise, so balancing how much we each speak can be a challenge. When I’m moderating, I often lose track of the need to be brief and go off on elaborate tangents. All this means that editing involves more work that many podcasts do, and I also have the tendency to be over-perfectionist resulting in even greater editing time.

Early on we made the decision never to release episodes unless we had a full transcript available, because this is an important accessibility aid for any audio-based medium but especially important for a podcast aimed at autistic people, given how many of us have trouble with audio processing. Transcription does sometimes cause additional delays to our release schedule, but we’ve worked out a process to do this in parallel with the editing, and the tendency to script out most of what we’re going to say in advance usually makes thing a little easier. I think Laurine does an amazing job.

All in all, it’s a lot of work, but I think the amount of effort we put in and the different ways we’ve found to make podcasting work have resulted in some very strong episodes. We’ve been getting some positive feedback from people who have found it useful and affirming, including saying how great a feeling it is to hear other people talking about being different in the same way you are.

I think my favourite response came from Ari Ne’eman of the Autistic Self Advocacy Network who said:

Happy Autistics Speaking Day everyone!

Daily Art October 2015

After starting daily art on the 1st of September and successfully drawing every day in September, I’ve continued the habit and drawn for all 31 days of October too. I was initially trying to challenge myself to draw people but I found that was making the need to draw a bit overwhelming and I was procrastinating or avoiding it, so I switched back to drawing whatever I felt like – mostly things related to TV shows or films I’d been watching.

Again, the art’s very variable in quality and many would’ve benefited from more time being spent on them or a ‘second draft’, but I’m very happy with the achievement of keeping this going for 2 months and I even made a comic on the 8th! I think I’m also getting better at drawing what I was aiming for on the first try and much more comfortable with non-digital art. Next month I think I’d like to experiment with more digital art techniques, and hopefully actually make some more progress with my planned comic.

Here’s a tiled image showing examples of something I drew every day:
Daily Art October 2015

As with last month, here’s a collection of all the relevant tweets so you can see full, larger and alternative versions and so these images can be found more easily in the future.
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Daily Art September 2015

On the 1st of September I decided to join in with a project that my local comics making group was doing to create a new drawing every day. I’ve long wanted to create comics, but I struggle to make time to draw and know that the only way I’ll be successful is if I can make drawing an automatic part of my daily routine. In the past I’ve managed to do impressive work when drawing every day but then found it extremely challenging transitioning to doing the same thing on a less frequent basis.

It’s now the end of the month and I’ve successfully drawn something of varying quality and effort every day of the month. What’s important is that I’ve managed to do it, and by drawing something every day, I’ve drawn two pieces of quality digital art when I previously last managed to finish one in January.

Here’s a tiled image showing examples of something I drew every day:
Daily Art September 2015

As most of these are only archived on Twitter, I thought I’d collect all the relevant tweets here so they can be found more easily in the future.
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Strategies for coping with international air travel

Air travel is something that happens to me infrequently enough to not be ‘second nature’ or ever become truly familiar. I currently travel overseas every other February, with the gap of two years being enough that I forget some of the procedure and most of the details.

I’m prone to being late to everything and to getting extremely upset if I miss travel connections even within my own country, and that’s without the non-refundable expense and vastly increased administration requirements (visas, insurance, multiple connecting forms of transport etc). As such, I’ve come up with a great deal of strategies to compensate for my usual travel challenges, which generally involve an excessive degree of pre-planning and contingency planning. It seemed useful to share these strategies with others.

I originally wrote this post in one sitting of several hyperfocused hours in response to this excellent post by Alyssa at Yes, That Too. I’ve long meant to develop all of my blog-post-length comments on other people’s blogs into posts here, but never got around to it. Right now I’m in the ‘obsessively checking everything’ stage of preparing to fly to Los Angeles for a Doctor Who convention in a week’s time, so proof reading this post became a productive use of my time, and reassures me that I really have thought of everything.

Booking flights and transport

If you have access requirements for seating, such as needing a window seat to avoid airsickness (as I do) or an aisle seat to not feel trapped, or a seat with a space next to you if being accidentally touched by others is uncomfortable, you can increase the likelihood of meeting these by travelling at an off peak time, such as in the middle of the night on a week day. These flights are often cheaper.

I find the flight relatively comfortable but the time in the airports very stressful so I tend to try to save on flights by booking at ‘inconvenient’ times when the airport is likely to be less busy and put the savings here into avoiding having to change flights mid-journey (something that I find extremely stressful).

I also aim to spend extra to have flexible ‘open’ train tickets for airport travel so that’s one less thing to stress about on the way there and home (I’ve melted down or had panic attacks around missing exact train times enough times to know it’s worth the expense) – unfortunately this time it was something like three times more expensive to do that so I haven’t. This is especially useful when travelling home at the end of your journey as arrival time and time to get through customs can vary hugely. However I’ve been told by the ticket office assistant that if I get a letter from the airline saying that my flight was delayed, I can use this at the station ticket office to get my advance ticket changed to a later time.

Be sure to account for the travel to and from the airport when choosing the time of day for your flight. If public transport doesn’t run at certain times of the day or night, and you’re travelling from a long way away (as I am), you may have to limit yourself to afternoon or evening flights. Another option is to book a hotel relatively near the airport for the night before your flight. Be wary of how early you might need to travel as this can put you into expensive ‘peak time’ commuter rate tickets on a week day.

Since publishing this article a friend has reminded me that coaches (long distance busses) run directly to Heathrow airport terminals without the need to change coach or cross London. I usually discount the existence of coaches because I’ve been known to get extremely motion sick on them, I find them uncomfortable and the journey times tend to be longer, but I’ve verified that I could have got a direct open return coach ticket the Heathrow for slightly less than I paid for my train journey with set travel times there and back. This might have been the lower stress option (you do seem to have to use the telephone to get yourself onto the coach home though).

If possible plan to give yourself extra time for check in, customs and check out when planning travel to and from the airport. For international travel, the recommendation is usually arriving at the airport with 3 hours to spare. Allow more time if there are several connections in your domestic journey.

Work out the transport option you’re likely to take when you arrive (such as a taxi, hire car or shuttle bus to the hotel), note down all the details. Book in advance if possible. Use something like Google Maps to take a visual tour of the route to and from each airport and wherever you’re staying so it’s somewhat familiar when you travel.

Passport, visas and travel insurance

Don’t book your flights unless you have a passport valid for the travel dates, or you are certain you have time to apply for and receive one (going to the passport office in person can help with this, as can paying an extra fee). I also take a colour copy of my passport ID page with me, should my passport itself get lost, and keep this away from my passport.

After booking your flight, you’ll also need to ensure you have the required visa or visa waiver. If you’re travelling between European Union countries (or other such countries with open travel agreements, this may not be necessary but do check). When travelling to America you can pay for the required ESTA visa waiver online.

Make sure that you have travel insurance. This may come as a free perk, for example with your bank account, or cheaply as an additional option when booking your flight. Be very certain if you’re travelling to the USA that this is explicitly covered, as this is often excluded or comes at higher charge.

If you have any pre-existing medical conditions that you’ve been treated for in the last two years or have had recent surgery or medical treatment, the terms and conditions of basic travel insurance probably don’t cover you. Do not travel to America without being certain you are actually covered for medical emergencies. Not having valid medical cover in the USA could cost you several times the cost of your flight.

In my case I have asthma, which is enough to triple the price of travel insurance. I used a travel insurance company specifically aimed at travellers with pre-existing medical conditions. Signing up for this required me to list all my medical conditions that are currently undergoing some form of treatment, with Asperger Syndrome (and Autism Spectrum Disorder) being on the list of recognised conditions (I am still being seen by my local adult autism service, albeit only every 6 months now, so it met the criteria). When I disclosed Asperger’s I was additional asked several questions about anxiety. If you experience either of these and haven’t disclosed them to the insurance company, your travel insurance may not be valid.

Travel money

Be sure to buy travel money in advance, don’t use the exchange kiosks at the airport, this will have a poor rate and likely charge commission. I was able to order travel money delivered to my door (or nearest branch) next day through my bank’s online banking system.

I used to also buy a number of travellers cheques to convert into cash as I ran out during my trip. Some hotels will convert travellers cheques to cash without charging and with just your passport as ID, but this is becoming increasingly rare and cashing travellers cheques can be very difficult.

Be very wary of your home credit cards and especially debit cards as these may charge a lot for overseas use, including foreign currency fees for every transaction, additional fees for ATM use, poor exchange rates and even outright blocks on overseas use. Be sure to research this in advance.

Inform your bank if you’re likely to use your card overseas as they may suspect this is due to identity theft and stop the card. Have a back up payment option as in my experience even informing the bank may not stop their automated system from stopping your card when used overseas. Make sure you have the phone number to call if your card is blocked, lost or stolen when overseas.

I researched and found my savings account could come with a credit card with no fees for overseas use. I also ordered a pre-paid dollar currency card with extremely good exchange rates (that can be topped up online, by an app or by SMS) and topped this up to use instead of travellers cheques (and as backup to the credit card). As this has a better rate, I intend to use it to pay the hotel at the end of my stay – be aware though, you must authorise with a different non-pre-pay credit card. Having a check in authorisation on a pre-paid card will put a huge pending charge on the card that will put you over your limit and take weeks to clear. If in doubt, check with the hotel that you can pay with a different card than the one you authorised with.

Pre-paid cards often have relatively large minimum top up amounts and may have a delay in reporting transactions on the card balance monitoring app/site. As such you should be cautious about accidentally going over your balance by a small amount and having to put another big top up on to pay this off. My strategy is to use the card only for extracting cash from ATMs when needed, and to top up the day before checking out to reach the full hotel bill amount, so there’s no worries over using what’s left on the card. I think this approach will make it easier to keep track of whether the balance is up to date without straining my limited executive function and mental arithmetic skills, and also work around potential delays in the card balance app being up to date.

Be sure to research the expectations of how tipping works in the country you’re visiting and ensure you carry cash so you can tip when needed.

Preparation and contingency planning

Work out contingency plans for things that might go wrong, including who to contact in an emergency. And make sure that this person knows all about your journey in advance so they’re not surprised should they be called upon.

If going abroad, work out roaming charges for your mobile phone including SMS/text charges so you at least have the ability to contact someone in an emergency. However turn off excessively expensive data roaming in advance (and turn off mobile data entirely as soon as you’re on the plane there). It’s usually cheaper to get a local pay as you go SIM card when you arrive, or get one shipped to you in advance of departure, or to use WiFi especially if you’ll mostly be in a location where WiFi is free. I tend to use WiFi at the event for most things, with SMS on my UK mobile phone for updating Twitter and receiving mentions and direct messages while I’m away from WiFi reception (whether SMS integration is available depends on your mobile phone network. Twitter SMS notifications can be set to only come in certain hours of the day, you may need to change these settings when overseas).

If you’re visibly transgender or gender nonconforming (as I am), it might make sense to have a letter with you explaining this. I have also had success getting gender markers removed from boarding passes (very useful as I tend to be read as a different gender depending on if I’m calm or anxious).

It may be possible to get a plan of the airport terminals you’ll be in and mark where the airline check in and airport security likely are. If you need an accessible or gender neutral toilet, you may be able to work out where these are in advance.

Luggage

If, like me, you’re too uncoordinated for wheeled luggage and/or have hypotonic arm muscles or other impairments that make pulling or carrying anything for any distance difficult, get luggage that’s a knapsack that converts into a suitcase and a smaller backpack. Do up all the straps tight – this helps. It may be the case that wearing the smaller backpack on your front (like a backpack but facing forwards) rather than zipped onto the back may be more stable and comfortable, or may be a good way to make things more comfortable after you’ve got too tired of everything on your back. Find a trolley for your luggage as soon as you arrive at the airport, or ask a member of staff for assistance.

I use the smaller backpack as carry on luggage for the flight and the knapsack with all the straps zipped away as my checked luggage. I put items that I want to transfer from my knapsack into my carry on backpack into an easily identified plastic bag so I can access them easily once the baggage separation and conversion is complete (doing this frees up more space in the backpack).

I also have a smaller over the shoulder camera bag that I use as my gender neutral handbag (purse to Americans) containing my wallet (cards, coins, train tickets etc), ID and various essentials like lip-balm, earplugs, a mirror and a pen. This doesn’t get counted towards carry on limits.

If you use your small personal bag or your carry on luggage for every day use, be sure to take everything out before you pack, and make sure you’re not carrying anything that isn’t allowed through airport security – including scissors, blades, and liquids and gels bigger than a hand sanitiser bottle. Put anything prohibited from carry on luggage that you’ll actually need into your checked luggage instead. Leave things you won’t use at home. I generally take the run up to an overseas trip as my cue to clear out the huge amount of junk that tends to accumulate in all of my bags.

Packing

Take at least a week’s supply of all your medications (and a copy of your prescriptions, or a doctor’s note) with you in your carry on luggage, and pack several spares in your checked luggage.

Take a light change of clothes and travel toiletries with you in your carry on luggage in case your luggage is sent to the wrong airport or delays mean you have an extended wait without your luggage.

In your checked luggage, be sure to pack clothing appropriate for the weather where you’ll be staying. If it’s going to be sunny then pack sunscreen, sunglasses (if you’re me you carry these all year around anyway) and swimming gear. If it’ll be cold then back coats, gloves, scarf and if necessary a thermal layer. If you have unusual dietary requirements, your hotel may be able to give you a room with a fridge on request. You might want to pack a travel plate, bowl and cutlery if that’s the case. Bring your own toiletries as much as is practical – I’ve had bad experiences with things like hand sanitiser bought in the US that absolutely stank of perfume in a way that no British brand ever would.

A tip for emergency medical supplies – pack electrolyte powder sachets in case you get food poisoning or something similar and need to replenish lost water and body salts. These make me feel so much better after I’ve been ill, which is especially important if it happens while you’re on your own in a hotel room.

Make a list of everything you need to pack. If you use an app for your lists, you can then save this and use it again the next time you travel.

Take an itinerary with you and a ‘cheat sheet’ with all your emergency contact numbers on it including lost or stolen card numbers and the claims line for your travel insurance. I also document where I’m staying, all the booking reference numbers, local transport details and the charges for my various credit cards and overseas usage of my mobile phone on here. Put copies in your checked luggage, in your hand luggage and on your person. Make sure someone you trust at home and, if possible, someone you trust at your destination also has a copy of your itinerary.

You should put luggage labels giving your name, your flight and your destination (hotel) address on your checked bags. I also put copies of these inside my checked bag and my carry on bags, in case the external tag gets ripped off and any of the bags get separated from me.

Useful technology

I have a USB charging battery that works with my phone and camera and will recharge them several times over (it has roughly the same size and dimensions as the phone). This is extremely useful for keeping devices charged during a long flight. Be sure that this is charged up and that all the required charging cables are in your hand luggage.

I also have noise cancelling headphones that make noisy situations, including those with regular background noise far more manageable with my sensory issues (I have a separate diagnosis of sensory modulation disorder). Buy additional batteries and ensure that they’re all charged. Take the cable and/or adapters needed to plug these headphones into the airline entertainment system.

I’ve bought a travel adapter that coverts power sockets to two USB ports, a UK plug to foreign plug adapter kit and now a spare battery and travel charger for my camera. Be sure to pack everything you need to keep your devices charged while you’re away.

Bring some form of entertainment that doesn’t require an Internet connection with you for both the waiting time at the airport and the flight itself (in case the in flight entertainment system doesn’t work). Ideally also bring something that won’t require any power at all, in case you’re stranded for long enough that your phone and USB battery have lost charge by the time you’re on the plane (although you can usually sneakily find a power outlet in a restaurant in the airport departure lounge, or if you have access to an airline lounge, power may be provided).

Checking in online

Checking in online can often be done 24 hours in advance of flight time (check your airline’s website) and allows you a much greater chance of booking a seat that meets your access requirements, and less immediate stressful socialising to do once arriving at the airport. I usually need 15 to 20 minutes to calm down enough to be coherent once I’ve arrived, which isn’t a problem when I’ve already checked in from home. Some airlines allow you to book the seat a week or more in advance of the check in window. Setting an alarm to remind you of this is likely to be helpful. Once you’ve done this then your seat is confirmed, your boarding pass is printed (make sure you have access to a working printer first!) and all you have to do on arrival is hand over your checked luggage and go through security.

If you have dietary requirements, you may need to book your airline meal in advance. In my experience, doing so means that you’ll get your meal before everyone else, which may be a better sensory experience (or less awkward if you’re an uncoordinated eater and sitting next to someone else).

You may also be able to look at the airline entertainment options in advance so you don’t have to make decisions while stressed, however don’t rely on the entertainment system working reliably and do bring a back up or three.

At the airport

Once at the airport, even if it’s not yet time to go to check in, to security, customs or to your gate, work out where these are and the route that you’ll have to take when it is time. If your prospective memory is as poor as mine, set alarms to remind you to check notices and make a to-do list of steps you’re meant to go through. Try to stay in sight of displays/notices/boards that you need to check, and especially set reminders if you have to move away from them.

When checking bags, explain your access needs around seating and double check that your dietary requirements have been recorded. If you’re disclosing a non-apparent disability, it may help to bring documentation to support this (I have no direct experience of this as I haven’t chosen to disclose a label, rather asked ‘I have trouble with X, is it possible to Y?’ type questions and got all the help I needed).  If there’s anything you’re unsure of and couldn’t find out from the website, ask it now. It might be helpful to make notes (perhaps on a mobile phone) and/or summarise what you think you need to do next to allow the check in assistant to confirm that your understanding is correct before you leave the desk (this is my standard strategy when dealing with spoken instructions – it helps pick up receptive language problems and also slows things down to help with processing speed and makes me think about the instructions in a different way, so I’m more likely to take them in and remember them – you also end up with notes).

You may find that it’s possible to be among the first or last people to board the plane if you would find this less stressful. There’s no harm in asking even if they say this isn’t possible – if this is really important then this would be a good reason to disclose your disability/label/diagnosis so the Equality Act’s ‘reasonably adjustments’ will apply).

It may be the case that you won’t be able to have some of your access needs met so prepare yourself for this eventuality. I have personally found that if access arrangements are agreed and then don’t happen, this is worse than if I had no expectations for help, so I tend to be somewhat conservative in choosing when to ask for formal disability accommodations.

Before going through security, finish any drinks you’re carrying as any liquids over a small travel size will be thrown away by security (better to do this yourself before going in). While you can’t take a drink through security, you can take an empty bottle to refill on the plane so rather than throw out your drinks bottle, finish it up and put the empty in your bag. Anything containing liquids and gels has to be put in a 20cm/8″ square clear bag (that should be provided) and carried in your hand, do this as early as you can, if possible put all your liquid and gels into one of these as part of your packing to be certain that they all fit and prepare for security in advance. Be prepared to put all your belongings on to the security scanner and also to take off your shoes and belt. Wear trousers that will stay up without a belt. Keys, coins and smartphones have to go on to the scanner belt too (you could put smaller items into your bag before going in to make this easier). You should be provided with trays to put your items in. As Alyssa’s blog post suggested, take spare socks in your carry on luggage if having walked on the airport floor in socks will cause problems.

I personally found some of the instructions from security personnel unclear (not understanding instructions is a common problem for me), but I tried hard to come across as compliant. I tended to ask questions that mirrored their instructions like ‘I should put it in here and then put that on there?’ or ‘Am I doing this right?’. See more in the ‘Social strategies’ section at the end.

There will likely be a long period after checking your bags and going through security when you won’t be able to go to your gate yet and will have to entertain yourself in the duty free lounge or restaurants. Be sure to set regular alarms to check for a gate number or boarding being open if you’re sitting away from displays (for example in a restaurant, airline lounge for an airline you’re not travelling with, or an out of the way location where you could recharge your mobile phone). Set an alarm 30 minutes before your flight is due to depart to ensure that you don’t miss boarding (I have come perilously close to doing this before, despite all my other planning – my executive function, working and prospective memories, and perception of time are poor).

Befriending someone else taking the same journey with you can be helpful should something go wrong. I realise that this isn’t an easy thing to do and is usually something I only manage on the flight home after a large event. Having another person with you can also be a source of stress if they don’t respect the way you need to do things to feel secure.

You might discover that your bank account, credit card, breakdown cover, travel insurance or similar service actually gives you free access to an airline’s private waiting lounge at the airport. If this is the case then I very strongly recommend taking advantage of this perk as they’ll provide quiet comfortable space with free food and WiFi until your flight is ready. Sitting close to these lounges may allow you to access the free WiFi without having access to the lounge.

On the plane

Tell the flight crew if you have any seating or other access requirements. It may be helpful to have a letter explaining these requirements in case you’re too stressed or anxious to explain. If you’re prone to air sickness ask for sick bags and tissues in advance of takeoff and landing, especially if you haven’t been able to get a window seat.

If you’ve been able to book a flight at an off peak time and not all the seats are filled, you may be able to move to a different seat once the plane has taken off. In my experience you’ll be asked to sit in your reserved seat for takeoff but may be allowed to take to any seat you like once the seatbelt lights are off, as long as you ask permission and then tell the flight attendants where you changed to.

I’ve been on empty enough flights that I was allowed to take an entire empty row of seats and lie down horizontally across them.

Your feet are likely to swell up on the plane which is uncomfortable if you have shoes or socks on. I’d recommend taking off your shoes and bringing a pair of loose socks to change into once you’ve taken off and settled into your seat.

A neck support pillow can help you sleep in your chair. This may otherwise be difficult, especially if you’re not used to sleeping on your back.

Work out which of the toilets are least frequently used should you need one in an emergency. Some planes have water fountains and cups in the middle of the economy section, if you bring an empty bottle on board you can also refill it here.

Schedule breaks to get up and walk around, this can help with cramp and avoiding deep vein thrombosis (if you’re in a high risk group take support stocking with you and also wear these), and also stop you from feeling too squirmy, uncomfortable and restless in your seat. Walking around on tip toes and doing stretches out of your seat seem to be acceptable full body stimming (proprioceptive feedback) for a plane – they’re recommended for avoiding DVT. Putting your carry on luggage on your lap could give some of the effects of a weighted blanked too. I’ve also found hugging my bag to be calming when I’m stressed.

Social strategies

How other people treat you varies hugely depending on how you’re perceived.

I’m an autistic, white British, employed, younger-looking-than-I-am, usually articulate, androgynous but ‘blending in’ trans* person with no visibly apparent disabilities, generally taken to be a middle class student (even though I’m a 34 year old IT professional) who is likeable if ‘neurotic’ under stress.

I tend to attempt to be non-confrontational, friendly and slightly apologetic when I talk to people who are just doing their jobs, and I’m even more cautious when they’re in positions of power over me. I try to smile at people, do positive small talk and make light hearted comments whenever someone’s being nice to me (although around airport security I just do what I’m told and only ask questions when I don’t understand). I can’t usually predict how strangers will gender (or age) me, especially based on first impressions, so I have several strategies around avoiding problems with this.

I’m more likely to respond to aggressive or dismissive reactions or unpleasant treatment with crying rather than aggression. People’s negative reactions to me are generally finding me slightly ridiculous, annoying or neurotic, or being upset for some reason, or simply ‘over compensating’ once discovering how old I am (or, at airports, unfortunately on seeing the gender marker I’m forced to have on my passport).

If you have a history of people responding to your attempts to be friendly and compliant with suspicion or aggression, you might need different social strategies to me.

Given all the above disclaimers, I’ve found that it’s best to find someone who works for the airline or who looks friendly when I’m lost of have a problem. This usually results in friendly attempts to help, even when they ultimately can’t do anything constructive. I’ve had very few negative experiences from doing this, but I try to prepare myself for getting them.

I’ve only had one unpleasant, upsetting airport security experience with body scanners and the operators disagreeing over my gender when travelling (leaving LAX), I was lucky to have someone I’d met at the convention I was coming from with me at this point or I would’ve struggled to calm myself down afterwards. I’ve otherwise not had problems and actually weirdly found the tight lower leg and arm pat downs oddly pleasant.

I’m more likely to get upset during local public transport journeys than for international air travel, as I over prepare to the extreme for weeks or months in advance for the latter.

Summary

Prepare for everything, give yourself lots of time. Write to-do lists of everything you need and set reminder alarms for all critical steps during travel such as online registration, leaving for travel, checking for boarding being open etc. Document everything you might need, including card and passport numbers and your full itinerary, addresses and details of any connecting transport, and carry copies of these in all your bags. Ask for help when needed, but whenever possible talk to representatives of your airline or the airport rather than airport security. Pack your hand luggage as if you might be without your checked bag(s) for several days. Especially include any medications you might need.

Nottingham Cafe Sci “Thinking about Neurodevelopmental conditions in adulthood”

Yesterday I attended the Nottingham Café Scientifique talk “Thinking about Neurodevelopmental conditions in adulthood” given by Dr Jo Jones, Psychologist based at the NHS Nottingham City Asperger Service aka NCAS. I live tweeted the event and then later developed these tweets into a more detailed report using the free service Storify.

As NCAS is the service where I was diagnosed and where I’ve been seeing various specialists for over a year (although not Jo), and as the talk was very interesting and very much within the ‘autistic spectrum and its overlaps’ remit of this site. I thought I’d share the summary I made here. It’s easily as long and taken as much work as a typical blog post.

If you have any trouble reading this, try the version hosted over at Storify.

First Impressions of a Non-stereotypical Autistic

When you first meet me, you might not think that I’m autistic.

The Stereotypes

I’m probably not the stereotype the that average person would think of when imagining an autistic person or someone who’s been diagnosed with Asperger Syndrome. I know this because since I started disclosing to casual friends and new people, I’ve received several variations on disbelief including “I would never have known”, “You don’t seem autistic to me”, “You aren’t like any people with Asperger’s I know” and “I obviously don’t understand what autism is”.

(Although people who’ve lived with or worked closely with me have instead said that “This explains a lot”, “makes sense” or that trait lists “describe you perfectly”).

Most media depictions are a simplification or focus on children, textbook definitions don’t account for growing up and developing coping strategies, and people tend to generalise the traits of the small sample of autistic people they’ve met into an idea about all of us. By definition, stereotypes are simplistic and limiting while the autistic spectrum is diverse and varied.

I also know that I don’t fit many of the stereotypes for Asperger Syndrome because for the first ten years of my adult life, I had the recurring experience of hearing or reading someone talking about what it was like to be autistic and finding myself relating incredibly strongly to some new aspect of it. Each time this happened I’d go into an intense period of research, hoping again that this would explain how I was different. Every time I would ultimately abandon the idea having found some other rigid explanation of what having Asperger’s was like that I wasn’t able to reconcile myself with.

It was something different each time. First it was how people with Asperger’s didn’t care about the feelings of others then, after I discounted that, how they were monotonous, overly formal or spoke with a flat affect. Then when I came across exceptions to that, how they were extremely shy or socially avoidant, then how they were highly organised, following rigid routines, then how they lacked imagination and creativity, or only read non-fiction and disliked the theatre.

It was only through learning that the DSM-5 would be removing the distinction between Asperger’s and autism, that I instead researched autism as a whole. And by doing that I started to see myself reflected.

Ironically, I first found confirmation that I fit the spectrum in outdated lists of how adults labelled with Asperger’s differed from those labelled with ‘High Functioning Autism’; not in the Asperger’s column but in the list of things that people with my lack of childhood speech delay supposedly didn’t do. (One of my books even says that people with Asperger’s don’t tend to stim, and another fails to mention this at all!)

After learning that the consensus was now that having had a speech delay or not made no meaningful difference to the person in adulthood, I was able to read older materials about ‘High Functioning Autism’, and from there newer articles about ‘atypical’ and non-stereotypical Asperger’s, including alternative ‘types’ such as “Hidden Autistics” and newly developed stereotypes for how Asperger’s presented in women and girls. The more perspectives on the autistic spectrum I read, the more alternative lists of traits I came across and the more theory I understood, the more I recognised as fitting me.

I now see the old stereotypes as corresponding with a subset of the spectrum, but also as corresponding with only some of the possible coping mechanisms for growing up with social impairments while still being verbally able. Ones that are likely to be more common if you’re socialised as male, but which are by no means the only response. And ones that have previously been disproportionally selected for during autism assessments (or at least, other presentations were selected against).

My Reality

Nat TitmanAs for how I come across on first impressions in casual social situations? Well obviously I’ve never had a first impression of myself or interacted with myself from the outside. But I have had a lot of conversations about my social interactions; first while I was trying to explore if I was autistic, and then later when trying to adjust to and disclose my diagnosis. How I come across to others has been discussed in some detail.

So then, assuming I’m not sensory overloaded or fearing for my safety, I tend to be humorous, animated and enthusiastic. Possibly over-expressive, definitely with way more gesticulation that is usual.

If you smile at me I’ll probably smile back and I’ll probably laugh at your jokes even if I don’t always get them, because I have the habit of mirroring other people’s positive emotions. In fact I find it difficult to stop myself from smiling when I’m happy or other people are happy.

If you seem to value eye contact, then I’ll probably mirror this (although possibly in a slightly awkward way), if you don’t seem to be looking at me, I’ll happily look at something else while I talk. I may even start to pick up your vocal mannerisms and accent, although this isn’t intentional.

If the environment is safe and comfortable, I tend to be energised by social interactions (which is some people’s definition of extraversion). In fact before I recognised this and learnt to moderate myself better, I often used to become extremely over-enthusiastic in new situations and would come across as manic or, as a friend once said, ‘completely freaking out’.

If I’m around the right people who appreciate the things that I like to talk about, then I’m likely to be actively interacting with others. This doesn’t mean that I’m necessarily good at these sorts of social interactions, but it does mean that I’ve learnt how to choose social situations where I’m more likely to fit in, to be appreciated and where having impaired social communication isn’t a barrier to participation. (Yay science fiction conventions!)

When I’m talking I tend to lace everything with humour (although not necessarily humour that I expect anyone but me to notice or enjoy) and may grin or laugh at my own jokes.

Because I use so much humour, people often assume that I’m joking or being intentionally silly when I’m not, which can allow them to overlook signs that I’m failing to understand them or respond appropriately. If I take something literally then people often assume that this is a joke, this is compounded by the fact that almost all my humour is connected to the absurd literal meanings of words (unless it’s sci-fi references and personal in jokes).

I have a habit of forgetting to greet people because I’m so excited by seeing them, or distracted by something they’re wearing, holding, saying or doing. Sometimes I remember that I forgot to do this and do so twenty minutes into the conversation. I’m told that this has the same jarring effect as suddenly getting the opening credits to a TV show several scenes into the episode.

I’m talkative and likely to be the one doing the most talking, usually about whatever I’m interested in at the moment. My favourite type of interaction is probably closer to a lecture than a conversation, but I do try to remember to talk only half the time. I’m unfortunately really bad at telling if people are bored and not so great at remembering to ask them, and I’m also not good at telling if people are humouring me or genuinely interested, and if people ask me a really exciting question I might tend to forget all the rules.

I also tend to be verbose, not know which parts of an explanation to leave out and go off on long rambling tangents about barely related side topics. Then later jump back to the original topic exactly where I left off, often disorienting the listener.

However, I’ve had enough people genuinely beg me to keep talking about what I was talking about, and invitations to give talks and run workshops, to know that you may not ever realise that I have these problem because you were actually engaged by and interested in what I was saying and actually wanted me to talk ‘at’ you for hours. (Especially given that I try to pick my social outlets so they’re likely to be full of people who share my interests and passions).

The pitch and volume of my voice tend to go all over the place depending on who I’m talking to, what I’m talking about and whether I’ve just been singing. My vocal quality is closer to ‘sing-song’ than monotone. I tend not to notice if I’m speaking too loudly or if my voice has suddenly changed pitch. If I’m excited about something I may talk too quickly. This results in most people seeing me as very animated and expressive.

I’m also easily distracted by, notice and comment on other people’s conversations or the background music, and have a bad habit of managing to distract myself with something I’ve just said. If I realise that I’ve made a mistake or think of something new, I tend to immediately comment on it, even when doing so is inappropriate or distracting.

That isn’t intentional ‘quirkiness’; I have poor impulse control and generally tend to say whatever comes into my mind.

If I’m in a situation where it’s important to control my impulses then I tend to put a lot of effort into filtering myself and so finding this extremely tiring, so if I’m comfortable and in verbal mode then I’m probably unfiltered. However this does mean that on the small number of occasions where I got extremely drunk, I was still able to control myself and behave as if I was sober when it became necessary to do so.

I’m fidgety and tend to be in motion, but I’ve learned to limit this to inconspicuous motion unless I’m tired, at which point I may begin to squirm. However if I’m talking, my hands will probably be gesturing a lot. If I’m in a situation where I’m required to do something physical like dance, stand on one leg, jump up and down, swim in a pool or bounce on something (as long as the sensory environment is comfortable and it doesn’t hurt) I’ll probably look pretty strange but end up infectiously gleeful and giggly.

Although I can be quite cynical and pedantic, I can also be surprisingly childish and joyful in an entirely unselfconscious way. I may absentmindedly sing, dance or skip in public. Although my writing tends to come across as formal and my written tone seems to be taken as very serious, in person I’m faintly ridiculous.

In general people who’ve met me in environments where I’m comfortable, tend to report that I made a positive first impression on them. They use words like ‘intelligent’, ‘interesting’, ‘articulate’, ‘expressive’, ‘warm’, ‘funny’, ‘quirky’ and ‘likeable’. They also report assuming that I’m socially capable and comfortable because of this, even if I can seem pretty unconventional.

Of course the people I’ve got this feedback from are the ones who’ve got on well enough with me to be having those conversations, so they may be overly skewed towards the positive, but that also means they’ll tend to be people who communicate in honest and direct ways because that’s who I tend to be compatible with.

If you’d like to judge my ‘first impressions’ for yourself, here’s a video I made two years ago talking about androgynous voices and here’s me giving a talk about asexuality at the WorldPride Asexual Conference in 2012 (note though, someone else briefly introduces). Both of which I begin by introducing myself and talking a little about my history.

The Disconnect

Despite coming across to most people as socially confident and able on first impressions, or when I’m interacting in an environment where I’m comfortable and appreciated, the specialists who undertook my diagnostic assessment didn’t have any difficulty giving me a diagnosis of autism. It’s standard procedure at that service to have the two assessors discuss and analyse the assessment results in detail and report back on if they’re diagnosing or not in a follow up appointment weeks later. But in my case they were both confident enough to tell me I’d been diagnosed immediately.

My diagnostic assessment report states that:

“Nat comes across as socially capable in their interaction and described themself as making an initial good impression. As more time is spent with Nat, it becomes more apparent that the social reciprocity is learnt rather than instinctive.”

That summarises the issue well. I have learnt good surface social skills (and enough social confidence that my failings don’t matter) and I have very little social anxiety, but the more time you spend with me past a first impression or a casual social interaction, the more likely you are to realise that we’re not making deeper social connections.

You might notice that I’m very often misunderstanding you or changing the subject back to something I’m more confident about. You may notice that I give ‘mixed signals’; seem to be socially reciprocating your interest but then seem to ‘go cold’. You may notice that I make ‘socially careless’ comments or don’t give the responses you’d expect.

If we socialise somewhere that overloads my senses, you might wonder why I’m so much more withdrawn than usual or seem to have trouble thinking clearly or remembering the words for things. You may wonder why I make my excuses and leave early, or why I’m too tired to talk to you the next day.

Ultimately you might give up on me, assuming I didn’t really like you or that I’m not worth the effort, or I might tell you I’m autistic which will either shock you or explain a lot, depending on how much time we’ve spent together outside of my ‘comfort zone’.

You might never even get to know me. I have difficulty approaching people, especially if we haven’t been introduced or there isn’t a reason or ‘permission’ to be talking. I also have difficulty recognising that people want to talk to me if they don’t show this in a direct way. When combined with the fact that I may seem socially able and confident enough to talk to anyone, this results in me only talking to assertive people who’ve approached me in a very direct way and then not been put off by my apparently carelessness.

Disclosing doesn’t always help. Lipreading deaf or hard of hearing people who ‘sound hearing’ (due to having the higher pitched sibilant sounds in their speech) can find that people with otherwise good deaf awareness find it difficult to remember to keep their lips visible to them while speaking because they’ve associated this behaviour with deaf-sounding people. In the same way, my over-expressiveness and ‘active but odd’ outgoingness can mean that people who understand how to accommodate autistic traits may forget that they need to when talking to me.

Most people’s stereotype of autism includes that the person is noticeably poor at socialising, this usually seems to mean that the person doesn’t seem confident, that they’re ‘rude’ or monotonous or boring. I’ve even had someone tell me when I was seeking assessment that I couldn’t be autistic because they found me too ‘warm and likeable’ – quite some prejudice there!

Even people with good autism awareness tend to expect to be able to tell that the other person is autistic so that they can adjust. Making a ‘good first impression’ isn’t always positive if it means that people assume too much of you or attribute malice to your impairments and coping strategies.

This said, I make very little effort to ‘pass’ as non-autistic. When I feel comfortable and safe my traits are very visible, if you know what to look for. I used to have negative coping strategies that made me socially withdrawn, repressed and constantly uncomfortable with who I was, but I’m lucky enough to have found a way to break out these while I was still in my teens and vowed never to ‘pass’ again long before I learned that I was autistic.

All the things that I’ve said about myself above are clear autistic traits that would count towards a formal diagnosis. Even the positive traits that lead people to see me as expressive, enthusiastic, engaging and likeable.

More autistic people than ever before are growing up having words for who they are and the understanding of the people around them. And more of us are talking openly about our experiences and are visible autistic faces to the world around us. I hope that soon the public understanding of the autistic spectrum will widen and more happy, flappy, stimmy, enthusiastic archetypes of all genders will join the currently understood stereotypes.

Understanding the ‘Spectrum’ in Autistic Spectrum

One of the most common misconceptions I see about the autistic spectrum is the idea that a spectrum must cover all people. I’ve seen variations on this statement appear in several places:

“Everyone’s a bit autistic, that’s why it’s called a spectrum.”

People who make these sorts of comments seem to think that the autistic spectrum measures everyone’s ‘degree of autism’ on a scale from not at all autistic to totally autistic, and so everyone’s somewhere on the spectrum.

The Autistic Spectrum? [A gradient from white to grey, labelled '0% Autistic' at one end and '100% Autistic' at the other]

This is not what ‘autistic spectrum’ is meant to mean.

In fact only autistic people are on the autistic spectrum. If you’re ‘on the spectrum’ then you are autistic (or ‘have autism’, whichever is your preference), it is a spectrum of the people who are autistic. Not autistic? Not on the spectrum.

We say that autism is a spectrum condition because there’s a huge amount of diversity among people who are autistic, so it’s more helpful to consider autism as a wide range of different experiences rather than taking a single one-size-fits-all approach.

The cliche is that when you’ve met one autistic person then you’ve only met one autistic person, and there’s a lot of truth in this. It’s surprisingly easy to find two people who are both autistic but have astoundingly different traits, personalities and communication styles. In fact I’d go as far as to say that you’re more likely to find these extreme differences in a group of autistic people than in a similarly sized group of non-autistics.

Instead of imagining the autistic spectrum like a scale, think of it like a spectrum of colours. All the colours are on the spectrum, regardless of where they appear in the rainbow, but they can look very different to each other.

Some colours go well together, while others clash. Some colours blend in, while others stand out. Which colours are most visible depends on the observer and the lighting conditions.

Some colours we have words for and you’ll find them in every box of crayons, while some are in-between colours with names like ‘yellowy greenish colour’. The important thing is that, despite being hugely diverse, every one of the colours in this spectrum is as much a colour as any other.

Now we’re talking about colours, perhaps your mental image of the autistic spectrum looks like the spectrum of visible colours, but maybe, rather than labels like ‘Red’, ‘Yellow’ etc, perhaps you’ve labelled them with diagnostic terms like ‘Asperger Syndrome’, ‘Kanner Autism’, ‘High Functioning Autism’ etc.

The Autistic Spectrum? [The Visible Light Spectrum labelled "Asperger's" "HFA" "Kanner Autism" and "PDD-NOS"]

(If you don’t know what you’re looking for, you might mistake the fringes of the visible spectrum as colourless rather than blending into ultraviolet or infrared, that’s why I put PDD-NOS at the opposite end to Asperger’s – sorry for over-thinking the analogy!) Visible spectrum image credit

However, these types of separate, defined diagnostic terms aren’t actually all that useful because they suggest stereotypical patterns of behaviour and both similarities and distinctions between arbitrary groupings that aren’t really there. In practice they’ve been found to make it harder to recognise autism in many individuals, and to do useful research about the spectrum. Because of this they’re being phased out, replaced with either ‘Autism’ (as is more common in the UK) or ‘Autism Spectrum Disorder’ aka ASD (as is already the single label in America).

Maybe when you think of your idea of the autistic spectrum you place people on it in different positions in the order that you consider to be most ‘severe’ or most in need of support, or perhaps to correspond with how visible and detectable their autism is.

But the other important thing to remember is that there isn’t any one factor in autism – it’s not a single trait of ‘autisticness’ but a collection of different traits that affect different people in different ways.

Yes, it’s possible to rank people in terms of who is most visibly autistic (by some standard) or who currently needs the most support to function in society (by some standard). And yes, there are sometimes practical reasons to want to do this when budgets are tight and services are being rationed to only those who need them the most.

However, it’s important to remember that any two people who are very ‘visibly autistic’ may be autistic in very different ways, and that a grouping of the most ‘visibly autistic’ and a grouping of the most in need of support and services won’t necessarily be all the same people. Some people who you consider to look very autistic might be better equipped to succeed or cope in some situations compared some other autistic people who you perceive to be much ‘less autistic’.

The Autistic Spectrum [A colour wheel showing a huge range of possible colours in a circle, labelled 'Autistic People']

(You could also label this ‘People With Autism’, ‘Autism’ or ‘Autism Spectrum Disorder’ depending on your philosophy or preference)

Perhaps a better metaphor for the autistic spectrum is a colour wheel with every possible colour available in a circular space. The only label this spectrum needs is ‘Autistic Spectrum’ or ‘Autistic People’, as everyone on the spectrum is an autistic person.

But without labels or a scale, how do we understand what any one ‘colour’ on this spectrum means?

Perhaps then an even better way to imagine the autistic spectrum, is not just a set of colours or ‘types of autism’ but also all the different autistic traits that make up how any one person experiences autism.

Maybe that circle of colours is like a colour picker with several different sliders under it, each of which can be used to control one aspect that makes up the colour selected. No one slider on the colour picker explains the spectrum above it. The only way to fit that diverse and complex circular colour space into a linear scale is to break it down into lots of individual traits, each with their own slider. Together the interactions of all the sliders combine to produce a unique colour, and similarly all the different traits of autism combine together in different ways to create all the diversity within the autistic spectrum.

A colour picker showing the colour wheel used in the spectrum illustration followed by sliders for red, green, blue, cyan, magenta, yellow and black. A yellowish green colour is selected and each of the sliders shows a different position making up this colour

(Don’t over-think this analogy, autism isn’t really about colours! The idea to take away is that it’s not any one slider/trait that defines someone’s autism, it’s all of them in combination)

Perhaps the sliders represent the traditional ‘triad of impairments’ and the traits within that. Perhaps they represent the person’s competencies when handling different areas, such as social, sensory, verbal, nonverbal and emotional demands. Some people may have strengths in some areas and difficulties with others. Some people may be severely impaired by some demands, but competent in others. Looking at traits this way may seem like an apparently contradictory mixture of strengths and weaknesses, but this unevenness is part of the nature of autism.

Of course this metaphor still isn’t complicated enough, because there are a lot more traits that define and affect autism than there are sliders on a colour picker. There’s also the factor of how people may learn to mask certain traits by developing coping strategies (perhaps we need an alpha transparency slider?) and how traits may change with time and by situation (gradients? intersection rules?).

However, unlike a linear scale or a limited set of labels and stereotypes, this is a much better foundation to build your understanding of autism from. It shows how varying traits (that can be at different extremes or anywhere in between) combine together to produce something unique within a wide range of diverse experience, all of which falls inside the autistic spectrum. It invites you to understand that there are differences and oh so much diversity, before moving on to the commonalities.

Autism is a spectrum, remember that.

Unblocking myself

Huge apologies for not updating this site since June. A few people told me they were excited that I was writing here in general or because of particular topics I mentioned I was covering, and I feel like I’ve let them down, so I’m sorry about that. I have in fact written several posts but I seem to have lost the …confidence(?) to properly finish or publish any of them.

I think one of the factors behind this is that I feel that my first ‘explanation’ should start off with something general about the autistic spectrum as an introduction, but autism is such a huge and complex subject and autistic people’s experiences are so diverse, any attempt to represent things concisely fails.

My natural tendency when proof reading and editing is to expand and clarify rather than remove and simplify, which means the result quickly becomes unreadably dense and confusing, or I’ve produced a hugely long post about something that only really makes sense as a side point in an introduction. The nature of the subject and my natural tendency to add caveat after caveat are interacting badly and producing unmanageable and overwhelming drafts.

I’ve been struggling with this problem, giving myself insomnia, talking to friends about it and musing on Twitter. Today I went back and looked over my draft posts and noticed that the common factor was that I start off by saying that I can only talk from my own perspective and experiences. Yes, I’ve researched a lot, have autistic friends, go to autistic conferences, support and social groups, but ultimately I can only explain my perspective and my understanding.

So I’ve just started another draft post (that I’ve edited these first five paragraphs out of) to explain autism in general by giving an overview of how it affects me and how that might differ from other people. I’m going to try to keep that post brief, talk about the breadth rather than the depth (although that still probably means an essay; I tend to verbose even when trying not to). Perhaps this will both give an overview of what the autistic spectrum can encompass while also serving to explain who I am, how I’m autistic and what my perspective is. Perhaps that will manage to satisfy my need for a ‘perfect introduction’ post.

However, that’s not my only problem. I think the fact that I’m so fixated on why I’m not finishing posts is affecting my ability to finish posts, so perhaps letting myself off from the pressure of having to produce a perfectly formed ‘explanation’ before I post anything else, and instead allowing myself to just blog my thoughts about this situation might also help me get on with producing something useful. So I hereby declare this post ‘not perfect’ and give myself permission stop worrying about that respect. This is just a ramble about what’s happening to block me, not a great work of literature.

Another factor that’s scuppering my ability to finish posts is that some of the ones I’ve written need to be illustrated and need about a dozen illustrations, while I’ve been failing to incorporate drawing into my routine for months. I also know my tendency is to take longer and longer on illustrations, tending toward photorealism. The last one I drew easily took me a full week spread out over months of free time, which is clearly not sustainable. I think I need to take the pressure off drawing and ‘finding an illustration style’ and all that and get back to having drawing be something that I do everyday for fun, not a long list of illustrations that I’ve failed to produce. In fact perhaps I should forget about drawing for this site all together and perhaps rewrite a long should-be-illustrated draft I’ve finished into a shorter concise introduction to the other post I started today.

The other problem is that I’m not very good at providing my own structure and deadlines, but I know from bitter experience that I need structure, deadlines and a degree of non-stressful pressure to be able to finish anything reliably (or at least efficiently). I believe that this is an executive function and autistic inertia issue, and it’s one of the things I’ve been given accommodations for at work.

I know that I can write high quality content for this site, but due to my executive function and autistic inertia interacting poorly with my full time job, energy levels and all the other factors above, every attempt to write here spirals into something unmanageable.

Not being able to obsess about structure and revisions also seems to help. One of the best things I’ve written about the autistic spectrum was a Storify made from a sequence of tweets I sent to Twitter during World Autism Awareness Day. I had been thinking about it for months, I knew the shape of what I wanted to say and the subjects I wanted to cover. I tweeted them in a stream, while I was travelling to and from an appointment with an autism specialist to work on my self-awareness (ironically). All I did when I made the Storify was arrange them in order (with very few changes), add an introduction and include clarifications at any point I didn’t think my intentions were clear. I couldn’t rewrite any of the tweets, they were what they were. That actually made things much easier.

I also know that I do a hugely better job with writing if I’m provided with a pitch to respond to, a first draft to improve on or a blog post to reply to, rather than a blank page or a title to start from. This is evidenced by the fact that I only managed to write here when there was a flashblog event to contribute to, and that I was happily producing regular blog-post-length comments on other people’s autistic spectrum blogs for months, yet totally fail to do the same on my own blog. I recently produced 24 well reasoned and well received responses to panel questions on someone else’s blog, but since then I’ve never managed to finish any of my own work.

It seems that my ideal writing project is “take this, see why it doesn’t work, make it better”. This usually involves moving things around, adding a narrative, expanding on some things, achieving others in different ways. But somehow I can’t do that with my own work, the only response my brain produces is “Needs to be longer and more detailed” or “Argh too long and detailed, can’t cope!”. Alternatively “This needs to be split into more posts” after which each of those posts expand to become too long and too detailed. I’m hoping that this tendency is being amplified by the fixation I have on making my first post encompass and represent the entire spectrum, and maybe when I move on to smaller topics this won’t be such an issue.

I seem to do better when I have a length limit (more structure!) or pressure not to write something huge and comprehensive because I’m commenting on someone else’s blog and writing more than them would be rude. Or in fact when someone else has done all the introduction and attempt to be comprehensive and I can just write detail for the part that interest me, which again happens with blog comments. Perhaps I should actually start enforcing a word limit on my posts, and perhaps I should write a blog post introducing why I want to write each ‘explanation’ post so I don’t get sidetracked trying to do that in the post itself (rewriting the introduction multiple times as the post’s content changes) and also have a pre-announced fixed topic with some form of pressure that I’ve already announced it? (Not that I haven’t already announced several of my posts on Twitter then failed to publish them).

I think ideally I’d make this site a collaborative partnership with someone else who was competent and very compatible in their interests, writing style, strengths and weaknesses, but I know that it’s extremely unlikely that I’ll manage to find such a person who would also be willing to commit to spending so much time on this project with me. In fact I’m quite baffled at the idea that anyone manages to set up such collaborations. Presumably a large degree of luck is involved, or both people also happen to be friends with existing work that both admire and similar goals?

One thing I did consider was perhaps organising some sort of group blogging project where weekly topics and deadlines would be set with a description of what sort of thing should be written about and who it would be aimed at, then everyone would post their finished articles in the comments at the end of each week and have them compiled into a group blog. I even suggested this idea at Autscape and had positive interest. Thing is, I think that would really help me if someone else organised it, but if I ran it then I know from experience that I’d end up using up all my energy on administration and commenting on everyone else’s work and never actually manage to write my own content. I’ve done that before with art communities and it was a frustrating dynamic. I think I would need to have worked out how to produce a blog with one quality post a week before I even started considering trying to organise other people to do the same.

If anyone else reading has struggled to get into a routine of blogging or doing any other type of regular writing or creative work, especially if you’ve had trouble with finishing things, I’d be very interested to read your insights of how you eventually got around the problem? Please leave comments if you have any suggestions 🙂

Working through all the above has really helped me to organise my thoughts on this, but I haven’t ended up with a neat conclusion. I think ultimately I need to learn to keep my posts to a sensible length. Learn to edit my own work in the way I might do other people’s, and provide myself with my own deadlines and structure. I know from experience that it’s important to work this into my routine and make a rule that I have to spend at least an hour a day on writing (or every other day, but somehow that’s harder), but that’s difficult when my full time job can sometimes expand to take up all my free time and energy. I also think it’s important to let myself write unstructured rambly blog posts about my thoughts and plans, like this one. This kind of low pressure writing helps me to break cycles of perfectionism. Although believe it or not, I’ve read it through multiple times, expanded on minor things and rewritten a number of sentences to make them clearer. I can’t help but think that I’ve actually made things worse and harder to read though 😐

The most important thing though is that I need to actually start publishing my draft posts and letting my work get out there even when it isn’t perfect. So in the spirit of that, despite not being at all happy with this post (particularly the excessive length), I now declare this post to be finished and I’m releasing it to the world! Who knows, maybe I’ll actually get my autistic spectrum overview post done now I’ve got this ‘out of my system’…

Autistic Pride Day: Why I’m Openly Autistic

autistic pride day - june 18 - there is no cure for being yourselfToday is the 9th annual Autistic Pride Day and the first since I’ve been ‘officially’ on the autistic spectrum. Of course I’ve been acutely aware that I was different from other people since childhood, and known that I was definitely neurodivergent since diagnosed as dyspraxic in early 2007.

Pride is the opposite of shame, and that’s what pride events are about; not being ashamed of who we are. Autism is pervasive, it affects how we perceive, think about and interact with the world, and so it’s an inseparable part of who we are as autistic people. There are a lot of negative things written and said about autism so it’s important for us to push back and say that we like being who we are despite of all the challenges.

I’ve already written here about how there are positives to being autistic but I also want to say a little more about why I chose to be open about my diagnosis rather than keep it as something personal that I only shared with family, close friends, and employers or other professionals on a need to know basis.

Firstly, being open that I’m autistic makes me make sense to other people. It means that friends who’ve struggled to connect with me or assumed that my ‘mixed signals’ meant that I probably disliked them realise that there’s maybe something else going on. It means that people who previously saw me as ‘socially careless’ gain some insight into how hard I’m actually working to be ‘socially correct’ and considerate. It means that people who always saw me as ‘difficult’ might understand how stressful the wrong type of sensory environment can be for me. It means that people who might have been indirect and implicit in their communication might think twice about wording things in a more direct and explicit way. And it means that when I say that I don’t understand something, people are more likely to stop and take the time to reword it, and less likely to assume I’m joking or ridicule me.

Secondly, it means that non-autistic people who know me are aware that they know an autistic person, and that there’s more to the autistic spectrum than the stereotypes and media depictions they’ve probably learned. It means that when I write about how I experience executive function, emotional awareness, sensory overload, social interaction etc, these aren’t just seen as my personal foibles but as there being more to autism than they might have understood.

And perhaps most importantly of all, autism is a spectrum where each of us can have wildly different traits; different strengths, different challenges, different coping mechanisms and different personalities. So being openly autistic means that there’s one more example of autism visible for other ‘undiscovered’ autistic people to recognise themselves in.

I’m out and open for those people who are like I was from ages 12 to 32; aware of being different, aware of so many challenges but not aware of exactly why, not having the words to search for to find all the help and insight that’s other there. People who are working it out the hard way, struggling on their own. Those who might be aware of the stereotypes, but not of the true diversity.

As an extraverted autistic person who makes friends but struggles maintaining friendships, who’s expressive and ‘active but odd’, has poor emotional awareness but strong verbal skills, difficulty dealing with stress and terrible executive function but many coping strategies and successes, I wanted to share my experiences, share what it looks like to be me. To add to the diversity of autistic voices out there, so hopefully even one more person like me can find a word for who they are, and realise that it’s nothing to be ashamed of.