Autism and Ehlers Danlos Syndrome (EDS) -12 Management Tips- Linda Wemyss

Having Autism or a Physical Disability on their own can be hard enough to deal with in a world that is as ableist as this one is.  Having both together can be downright infuriating and frustrating.

There are some real concerns when it comes to physical disability for autistic people.  Autistic people die, on average, 18 years younger than our neurotypical peers (http://www.sciencemag.org/news/2016/03/people-autism-spectrum-die-18-years-younger-average).  While some of this can be accounted for by higher rates of drowning (for those also with intellectual disability), and epilepsy, there is also concern that people with autism may have issues with expressing their concerns to medical professionals.

Medical professionals and I have quite the history.  My interactions with them have ranged between both of us giggling like schoolgirls as we bond over a shared fascination of my body that defies all medical knowledge and common sense, through to my developing Post Traumatic Stress Disorder (PTSD) from the interaction, and everything in between.

Quinn pushing me in my wheelchair at a shopping centre. Sometimes, you need to accept help from unusual sources.

I have Ehlers Danlos Syndrome (EDS), a genetic, degenerative, connective tissue disorder which (for me) results in a plethora of medical conditions, as well as joint instability leading to multiple dislocations and subluxations (partial dislocations) every day.  Due to the nature of this condition, in that it affects every single part of our bodies, it has been necessary (and will always be necessary) to consult with many different types of specialists.  I take a variety of medications.  My children also have Autism and EDS, and these conditions affect each of them differently to how they affect myself.

If I had to sum up EDS in one word, it would be “complicated”.  Add in Autism, and forget infuriating and frustrating – dealing with it all can become downright horrific.

There are ways in which I have learned to manage the complicated blend of having both Autism and a physical disability however.  Some of these ideas are suitable for any illness or disability or adverse life event.  Others are more specific to having both Autism and a physical illness/disability together.  And others are suitable for anyone!

1. Eat, drink, move.  I’m going to start off with the holy trinity of the wellness industry, partly to get it out of the way, because we have all heard it all before.  Eat well, drink lots of water, and exercise regularly may seem like common sense, however there seems to be quite a large industry out there taking your hard earned money simply to tell you to eat well, drink lots of water and exercise regularly.  It is good advice.  You do not need to pay for it.  I’m giving it to you now for free.  Ensure your diet is the best it can be to suit your body.  Not all bodies, and therefore not all eating plans, are created equal.  What works for one body may not work for yours.  Try different things until you find your groove.  The same goes for drinking lots of water (different people need different amounts), and exercise (choose activities that you enjoy).

2. Find your own way to relax.  For some people this may mean meditation, or mindfulness.  For others, it may mean taking a stroll around a local park, or down the beach.  It may mean pursuing an art project, or pummeling a punching bag.  I like to listen to music (with headphones, or I’d drive my family crazy!), and imagining I am dancing (I can’t physically dance any more).

3. Do what completes you.  We are all individual people, and when we start dealing with all things Autism, and all things disability, it can be easy to forget that we are individuals first.  I’m actually a great living example of what NOT to do!!!  I get so caught up in dealing with issues at my kid’s schools, and dealing with medical appointments, and dealing with our constant lack of money, and dealing with disability advocacy, and just trying to keep everything together, that I actually forget who I am most of the time.  I forget to listen to music.  I forget to do art, and I forget to write.  I forget to spend time on my spiritual self.  I forget that gay rights are just as important to me as disability rights.  My autistic brain gets stuck into the one lane of disability and it gets stuck there, but I am so much more than that as a person.  The past few months, I have been rearranging our lounge room so that I have space for a bed and desk.  It is my area, where I do not have to be mum, or wife, or patient, or advocate.  I can just be Linda.  Don’t forget who you are.  Ensure you have both the time and the space to be who you are.  Which brings me to…

Having a space just for you!!!

4. Space.  For most of us, our space is rather limited.  As I’ve stated, my bedroom is in the lounge room as we have three bedrooms and they are all occupied by boys.  I needed a girl space.  And while my husband would have been happy for me to arrange our bedroom any way I like, it’s just not the same.  I needed my space to literally be just for me.  So whether you get your own bedroom, or you just take over a corner of a shared living space as I’ve done, I do recommend having your own space in which you can do what you like.  Fill it with things you love.  Have all your favourite activities handy.  If you like to do art, keep your art supplies here.  If you love to binge watch Netflix, set up a media centre of some sort (or if this is out of your financial reach, at least get some comfy pillows and a nice doona cover so you can snuggle up while watching your fave show on your phone).  Make your space your happy place. And then make the time to fully be present on a regular basis.  Don’t allow your space to become wasted.

5. One essential item for any good personal space is a Happy Box.  The Happy Box is an idea that originated with a self-injury help group in the early 00’s.  I was a part of this group.  We each gave our names to the member organising the project, along with a list of our favourite things, colours, scents etc.  The idea is that when we feel the urge to self-injure, instead of acting on that urge, we open our Happy Box and try to keep occupied with our favourite things until the urge passes.  During the project, we each received a name along with their details, and we made a Happy Box for them.  My receiver was a member in the United States, so along with things I thought she would personally like, I also included a few Australian bits and pieces.  I still have my Happy Box that was sent to me, although it is put away for safe keeping, and the one I use is one I have put together myself.  Your Happy Box is a first aid kit for your soul.  What you choose to keep in yours is completely up to you.

Here’s a list of ideas to get you started…
•    Photo’s
•    Diary
•    Art supplies
•    Colouring in book
•    A deck of cards (for playing with a friend, or solitaire)
•    Other activities
•    Magazines
•    Books
•    Scented candles or other fragrances
•    Crystals (or other pretty things)
•    Memorabilia
•    Quote book
A Happy Box is a good tool for anyone who needs an awesome distraction every now and then.

When it comes to activities and sports, when you’re ill or disabled, sometimes you need to think outside the square. My children are not allowed to do contact sports due to having EDS, so instead they did climbing.

6. Dream.  Keep your imagination active.  As children, our imaginations run with the wildest of dreams.  Find your inner child, and give yourself permission to dream.  There is a time for realistic expectations and planning for the worst case scenario, however lest we become drones, we must preserve our inspiration, resourcefulness, and wit.  We must dream!  We must keep our hope, and in doing so, keep our humanity.

7. When faced with adversity, or even a more complicated life than most, we must also have realistic expectations and plan for the worst case scenario.  At least, I have found doing so to be infinitely useful.  While maintaining hope is also essential, being prepared can mean less heartache later on when things don’t go our way.  I am well known for having at least three or four “back up plans” for if (or when) things go wrong.  It means that if (when) things go wrong, I am far less stressed than if I were totally unprepared.

8. One back up plan I have is to try and maintain a good team of professionals.  From our general doctor, to our specialists, to our support workers, we try to make sure that we are surrounded with people who understand us, and who we can be honest with about who we are.  Having autism is hard enough to deal with on a daily basis without the added burden of having to either hide who we are, or having to explain who we are and why we are different to people who either don’t understand, or don’t care.  It is not always easy to find a good team.  It has taken us nearly ten years to get to the point we are at, and we still have a little way to go before we will be totally comfortable, if that is even possible.  If someone is not working for you, then in most situations, it is perfectly acceptable to say so, and request someone else who may suit your needs better.

9. Should you require external help in the way of medical professionals, or support workers, or the like,

BJ taking me into theatre.

and you do not yet have an ideal team in place, it may be useful to employ the services of an advocate.  An advocate can be a friend, a relative, a professional advocate (through various organisations that offer such services), or someone you already have in your team.  I once asked a FaceBook friend I had never met in real life before to come with me to my new neurologist (thanks Elisha *waves*).  Thankfully I did, because it did not go all that well, and I needed the support!  Sometimes it can be hard to ask for what we need, or to tell medical professionals what our issues are.  Having a support person or advocate with us can ensure we do not shy away from telling the person we are meeting what we need to, and for those of us who have trouble being vocal or can not verbally speak, they can also speak for us if and as required (or explain that we need a minute to set up our communication device).

10. Possibly my favourite tip for anyone, ever, is this – declutter.  Life is SO much easier to deal with when you are surrounded only with the essential items needed to survive, and those items that you absolutely can not live without.  There are a variety of authors and books on the topic of decluttering your life, however my way is quite simple.  Take everything out of one room (either visually, or literally).  Put back only what you use regularly.  For everything else (memento’s, books and other media, knick knacks, and anything else you do not use regularly), decide how much space you wish to devote to storing said items, and limit your items to that space.  For example, when we moved towns last, I decided that I would assign one plastic box for all my childhood memories.  So I organised those items according to priority, and stored the most precious first.  When I ran out of room in the plastic box, I took a photo of the rest, and either gave them away, or threw them out.  I decided I was happy to keep five stuffed animals from my childhood, so I took photos of the rest, and gave the rest away or threw them out.  I have one drawer for kitchen utensils, so we do not buy anything “extra” that needs to be stored in that drawer (nor do we cheat and store utensils elsewhere).

If you are lucky enough to have a pet, they can be great company!!!

Part of the allure of decluttering is that it makes cleaning easier.  So while making over your home, ensure that your floors are kept as clutter free as possible.  I have a rule that only furniture or rugs are allowed on the floor.  This way, when it comes time to vacuum, there is no need to move things off the floor, and the never ending cat fur that seems to replicate itself at an alarming rate, is much easier to clean up!  I have a similar rule for counters, tables and desks – I like to keep them as clear as possible.

When you are ill or disabled, decluttering can seem like the last possible thing on earth you feel like doing.  And perhaps it isn’t for everyone.  I have found it life saving however!  It means I know where everything is, and can direct the never ending stream of strangers that come to our house to where things are.  It means the 1.5 hours of cleaning time we get each fortnight is actually enough to do a half decent job.  It means that I’m not always complaining about the mess, or constantly telling my kids to clean up their rooms, or constantly on my husband’s back about cleaning the kitchen.  And when it is time to tidy up, it takes ten minutes instead of two hours.

11. Following on from decluttering is general organisation.  Generally speaking, once you have decluttered, finding a home for everything should be relatively simple.  Organising your life however, can be quite tricky!  I have a three part system.  One part is visual – a notice board with information on it that we need to have at hand on a daily basis, such as our eldest son’s school timetable, and what days the kids need to take their swimmers or library books to school.  I also have a diary where I keep our appointment information, our fortnightly budgets, and other day to day information, or things that I want to write down when the mood takes me (such as Christmas lists).

The kids, Quinn and Nick

The second part is short term folder filing.  I have a folder for general household information and files, such as housing information (rent agreements etc), transport information (such as registration certificates for our car and my scooter), information from disability and support agencies, and all manner of personal items, such as holiday ideas, or labels for our Tupperware containers.

I also have a folder for each of us that hold our health information, which I have organised according to speciality, as well as sections for test results, etc.  Lastly in this pile of folders which I keep on my desk, in easy reach, is my insurance folder, and my documents folder, which holds all our official documents such as birth certificates, marriage certificates etc.

The third part is long term filing.  I have a folder for receipts, and others for various things such as old files in regards to our home that we lost, basic information in regards to old loans, information packs sent from our utility providers, etc.  I store these folders in the linen cupboard, as I rarely need to ever pull them out.

Being organised is essential for most people, if they want to decrease their stress levels.  You don’t really need to keep that phone bill from last year, unless you are disputing it for some reason.  Make sure you are getting all your bank statements electronically and reduce your paper waste.  Figure out a filing system that works for you, keep only what is absolutely essential, toss the rest, and never again spend three hours looking for your marriage certificate!!!

12. Lastly, because it is by far the most important tip for keeping your sanity if you have a disability – maintain a good sense of humour.  If possible, have at least one person in your life who can make you belly laugh, and try to make sure that you get together and have those laughs as often as possible.  If that is not possible, at least try to watch some funny movies or read some funny books as often as possible.  If you don’t have to take something seriously, then don’t.  There is enough negativity in life without adding to it unnecessarily.  Be kind to others.  Make others laugh.  Once, in the emergency department after a failed suicide attempt, I was cracking jokes so much that the doctor working on me had to stop until she had finished laughing.  Even though I had decided that life wasn’t for me at that point in time, I kept my sense of humour.  Some days it just isn’t possible, and that is alright too.  If you need to be sad, then be sad, however try not to make sad your default position.  If we have to live, if we have to put up with the injustice of being handed more to deal with in a day than most people have to deal with in a year, then we should at least do our best to laugh at it all.

After all, what’s the point of having joints that snap, crackle and pop, if you can’t make a Rice Bubbles joke occasionally???

Spoon Theory

A lot of Autistic people have been using the term “spoonie”, or referring to the spoon theory, as a way to explain autistic burnout. Spoon theory is more about the physical side of things however, so appropriating it can be rather offensive. Karla’s ASD Page on FaceBook talks about Tokens for Autistic burnout, and differentiating between the two can be quite helpful! You can find more information here – https://m.facebook.com/permalink.php?story_fbid=164133410392118&id=155369821204141     https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

About Linda Wemyss

Linda is a writer, wife, mother to two children, and slave to two cats. She identifies as Autistic (diagnosed), and has Ehlers Danlos Syndrome, as well as a variety of chronic medical conditions. Living in sunny Queensland, Linda likes to scrapbook, make beaded jewellery and explore different art mediums (usually mashed together).

Read more at Linda’s blog here.

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