ADVOCACY ARTS-formerly Art in Action
Begins Feb.1st and runs every Monday from 6:00pm-8:30pm at the AAFS Clubhouse.
Registration Fee – $200.00
2.5 hours Respite or Community Aide Fee per week/ if you do not have FSCD/ PDD funding, there will be a $5.00 drop-in fee per evening.
This program will run on Monday evenings from February.1st – May 30th. Important dates are listed in bold font below…
February 1st, 8th (Deadline for Program Registration), 22nd, 29th
**There will be no Advocacy Arts on February 15th, 2016 (Family Day)
March 7, 14th, 21st, 28th
April 4th, 11th, 18th, 25th
May 2nd, 9th, 17th, 23rd (Dress Rehearsal), 27th (Emerging Artism), 30th (Pizza Party/ Wrap Up)
This is a commitment- based program. We ask that participants attend every week on time.
Advocacy Arts (formerly Art in Action) is an Arts based self-advocacy program influenced by a tool of empowerment called; Theatre of the Oppressed.
The facilitators of this program use a unique creation process, including games and exercises to break inhibitions, create a common language and develop trust through team building. The group is lead through a variety of fun exercises on an exploration of their own issues, self -discovery as individuals and as a community, and raise questions about problem solving.
By the end of the program, the group will have formed a tightly knit community and will be given an opportunity to present their truths in some type of performance piece. The group is empowered by being given a space to have their voices heard and make their own choices, including all details of the end performance. It is believed that once a person can observe themselves in action, they can then adjust their own actions to have a greater and more positive impact on the world!
You DO NOT have to be an artist or actor to enjoy the program. The focus of this is around the creation process, building community and solving problems as a community. This year will be a new journey and we really want to explore all creative forms and have space for theatre, film, art and even solo expressions, such as monologues.
This year we have booked our Emerging Artism event for May.27th at Cardell Theatre (more details TBA), and this will be an opportunity to celebrate art within the disability community as well as showcase your Advocacy Arts journey with some sort of performance!
Make art, make change!
Sign up on our website at www.aafscalgary.com or e-mail Michelle: michelle [at] aafscalgary [dot] com for more information!
A view into how a person with autism survives a day
A few words need to be defined as to how I am using them here. Many have different meanings inside and outside of the autistic community.
Asperger’s Syndrome – Due to personal reasons and the fact the DSM V has rolled it into Autism Spectrum Disorders will not be used here.
Neuro-Typical (NT) – Everyone whose brain does not function like ours.
Executive Functioning – is a set of mental processes that help us connect past experiences with present action. Some of the processes include: organizing, prioritizing, task initiation, shifting / thinking flexibility, accessing working memory, and self-monitoring / self-checking. Since this is one of areas examined when we are diagnosed we all have some issues in this area.
Masks – Things we do to fit in a Neuro-Typical world, thus hiding who we are. (I will be expanding on masks in the context of Battery Powered Spoons)
Over the years there have been many concepts and metaphors to try to explain our quirks.
In 2002, the concept of Autistic Inertia was first talked about. The key point is it can take a lot of effort and / or time to change tasks. For example: A NT has no trouble answering the phone while working on a project and then resuming the project after the conversation has ended. For someone on the Spectrum, it could go something like this:
Hear the phone ring. Stop thinking about the project. Compose yourself to answer the phone. Pick up the phone. Talk into the phone. Determine what the conversation is about. Converse. Hang up the phone. File the information from the conversation for later. Dwell on the conversation. Calm down from the anxiety of answering the phone. Return to work on the project before the phone call. Go back three steps in your project to get back into it. Start progressing on the project from the point you left off.
Not only do we go through more steps, some steps can require time and effort to complete. A NT may take one minute to handle a 30 second call. We may take 5 to 10 minutes for the call and to get back to work.
In 2003, Christine Miserandino developed the Spoon Theory. This was developed for people with disabilities, but has resonated for many with ASD. A NT will have access to as many spoons as they need to perform tasks in a day. However, we will have a set number of spoons, for tasks, in a day and have to carefully plan so we do not run out.
There have been many adjustments to the Spoon Theory to make it better fit what we go through on the Autism Spectrum. Corina Lynn Becker, in 2009, made the Battery Theory. This brought on the idea of energy to perform tasks we need to get through the day. A NT will have a large battery and will have plenty of energy to get through the day and with a good night’s sleep will not have to worry. We, on the other hand, will run out of energy if we go all out, even if we start the day with a full battery. So again, we need to carefully plan our day to conserve energy.
In an attempt to explain more than just energy and the ability to do tasks, in 2013, Luna Lindsey came up with the Splines Theory. The metaphor of reticulating splines may only make sense to those that played PC games in the late 1980’s. This makes it tougher to explain as many people will not understand the metaphor especially NTs. However, the concept does a good job of merging Autistic Inertia and the Spoon Theory into one neat package. The concepts in this theory are very relevant to how people on the spectrum function. I will not go into detail here as these concepts are expanded and adjusted for Battery Powered Spoons.
Building a New Paradigm
There are many elements of autism that are misunderstood. In Battery Powered Spoons, I am trying to show the relationship of doing tasks (the spoons), changing tasks (charging), and the energy to get through the day (batteries). Some other points that need to be covered is how trying to fit in a NT world, stress, anxiety, depression, being overwhelmed, meltdowns, stimming, autistic burnout, and adult autistic regression also affect us.
The batteries represent the power we have to get through each day. Some parts to the batteries are as follows:
- Has a simple indicator of how much power is remaining
- Is recharged each night
- Can partially recharge during the day
- Naturally loses charge over the day
- May short circuit
- Drained Batteries
- Develops a memory
The Battery Level Indicator
The indicator sometimes may be very simple. A 2 stage indicator may show Green and Red – green being you have energy, and red (0-10%) being little to no energy left. Studying the signs of how your body works can be beneficial as you can get an upgraded indicator that has 4 levels: Green (65-100%), Yellow (25-65%), Red (10-25%), and flashing red (0-10%). The percentages are just an example; you can use numbers that make sense to you.
Recharging at night
To properly recharge you need restful sleep. If your batteries are in the red, you will require multiple nights of good sleep. If your mind is racing when you try to sleep, you cannot recharge your batteries properly. Feeling rested in the morning may not always be a good indicator of how much energy you will have for the day.
Other Ways to Recharge
Although you cannot fully recharge, you can gain energy during the day or, at the very least, slow down the amount you are using. Working on your special interests, playing games, alone time, stimming, naps, music, and anything else that helps you relax can all help.
Even when you are doing nothing, your batteries are losing charge. Stress, anxiety and depression drain the batteries over the day. Even if you are doing nothing, you still can lose charge. The more you feel these factors, the faster the drain.
May Short Circuit
Something unexpected can happen to short out the batteries. The trigger may be something small and the short may be building for days, but when it happens, the result is the same. It will lead to being overwhelmed or having a full meltdown.
What happens when you drain your batteries. Wether your batteries drain slowly over the day or you have a short circuit you can become overwhelmed. When I use the term overwhelmed in the context of the battery, it is flashing red (<10%) and you have just enough energy to retreat and have a controlled shutdown.
If your batteries get completely drained of energy it will trigger a meltdown. With dead batteries you have no control and the shutdown will be immediate.
Develops a Memory
Constantly draining your batteries, not letting your batteries recharge or just plain getting older are ways that you batteries develop a memory. This means that even if you do everything right and get lots of sleep you batteries may still only be partially charged. This then requires you to learn to get through you day with less energy.
The spoons represent the tasks you do during the day. Here are the key characteristics of spoons:
- Limited number of spoons
- Multiple types of spoons
- Borrowing spoons
A Limited Number of Spoons
You start each day with a limited number of spoons. Day to day, the number of spoons available may vary. Stress, anxiety, depression and sleep all play a factor as to how many spoons you have access to.
Multiple Types of Spoons
The majority of your spoons can be used for most tasks. However, certain tasks may have their own dedicated spoon – social interaction, over stimulation, or even for talking. Just like the number of available spoons can vary each day, dedicated spoons may not be usable the same way everyday. For example: talking to a friend one day can take no effort and the next, it can be a real struggle.
It may be possible to borrow spoons from the next day. Since we do not know how many spoons we will get the next day, this can leave us short. Eventually will catch up and we will pay dearly. Think of it like you are borrowing from a loan shark. You may borrow a spoon from the next day and nothing happens. You the borrow another and another. One day the loan shark comes to you and says “Remember the spoon you borrowed yesterday? I am taking 5 spoons right now, and I will not let you borrow anymore spoons.” You are now severely short of spoons and may take a few days or longer to recover.
Powering the Spoons
Now to bring the Batteries (energy) and Spoons (tasks) together.
- Charging spoons
- Energy use in spoons
Spoons require a charge before you can use them. If you know you are going to use a spoon for a certain task, you can charge ahead of time. You may have to wait for a spoon to finish charging before you can use it. Depending on what else is going on, and the current charge of your batteries, charging spoons can take longer. Spoons used for different tasks take different times to charge.
Charging your spoons helps explain why we sometimes have problems changing tasks. This is how I bring Autistic Inertia into Battery Powered Spoons. When we know a task is coming, we can prepare ourselves for the change by charging a spoon and, if it is ready when we need it, we can transition tasks with little effort. If the task change comes as a surprise, you have to wait for a new spoon to charge before you can use it. In between these two extremes, you have partially charged spoons that result in some delay but not as long. In the same context, the spoon charges quickly for tasks that you do regularly, and tasks that you do less often take longer.
Energy Use in Spoons
The amount of energy a spoon needs may vary. For example, the spoon to make supper may require more energy one day compared to the next. Different spoons will require various energy amounts to use. A spoon for talking requires more energy than a spoon to get dressed. There is correlation between energy and charging time. You can have a spoon charge really fast but require a lot of energy, and the reverse can happen.
Other Battery and Spoon Interactions
Other traits that can be explained are ADHD, hyper focus, and executive dysfunction.
Lack of Focus (ADHD)
With all those spoons to choose from, you try to use them all – no matter if they are charged or not. You use one spoon, find there is not enough energy, then on to the next spoon. Even though you know you have to charge you spoons, you do not always do it before you use them. This bouncing around is also compounded by… Squirrel!
With hyper focus, you charge each spoon then use it completely before going onto and charging and using the next spoon. When you are interrupted, it takes time to charge that new task. While that is happening, the spoon that was your original task is quickly losing power and will need to be recharged before you can continue.
Executive dysfunction is a break down of the charging and use of spoons. It can show as not remembering to charge a spoon before use. This causes extra time to do and, for observers on the outside, looks like you need two tries to accomplish even simple tasks. Using a spoon that was charged for a different task can be done but there is a lot of wasted energy to complete the task. Later in the day, you can also not realize that you do not have the battery power and/or the spoons to do a task.
Emergency Battery and Spoon Uses
In a day, you may have more spoons than battery power to use them. This leaves options with how you can use spoons:
- Sacrifice spoons for energy
- Sacrifice spoons to prevent a short circuit
- Spoons that still have power can be used
- Use only in emergency
Sacrifice Spoons for Energy
Sometimes you can sacrifice extra spoons to give a little bit more energy. This may be beneficial in that you may be able to postpone a meltdown just long enough to retreat to a safe place.
Sacrifice Spoons to Prevent a Short Circuit
In the same vein as above, before you are completely out of power during a short circuit, sacrificing spoons here may leave you with some energy to retreat before a meltdown or, if you are lucky, will just leave you just overwhelmed.
Spoons That Still Have Power Can Be Used
When your battery is completely drained, you may be able use it as long as no extra surprises arise. It will feel like you are on autopilot. Again, use it to retreat.
Use Only in Emergency
Spoons used in any of the above ways may not be available for use for many days. You cannot choose which spoons you sacrifice so it may be one of your dedicated spoons. For example, if it is your social interaction spoon sacrificed, this could leave you incapable of social interaction, or it may take a considerable amount of power to do so.
- What we do to fit into a neurotypical world has a cost.
- We have been trained to don masks
- Benefits of masks
- Drawbacks of masks
- Masks for protection
We Have Been Trained to Don Masks
Throughout our lives we have been trained, be it formal or informal training. From Cognitive Behavioural Therapy (CBT), Applied Behavioural Analysis (ABA), Play Based Therapies, etc., rules imposed by others or self taught, we have many masks. These are the rules we apply to get through the day. Eye contact is one mask we all try to put on to varying degrees of success. We use so many masks during the day we may not be aware of them all until one day when the fail or through executive disfunction forget to put it on.
Benefits of Masks
Masks are there so we can fit into a neurotypical world. They are tools so we can accomplish our tasks and goals. Masks gives a basis to help understand and interact in the real world.
Drawbacks of Masks
Masks draw power directly from the batteries. The longer you use the mask, the more power required. Complex masks may also require a spoon to maintain. We have to constantly think about the mask so we are not as sharp picking up other details. That makes it harder to use other spoons while a mask is on. Masks may also hinder the ability to change spoons quickly when the need arises. Because masks hide who you are, you can start to lose your self-identity.
Masks for Protection
There are 2 types of masks. The first one, we put on to act like neurotypical people as described above. Think of the second type of mask as a goalie or gas mask, there to protect you. This mask can manifest itself as the physical things you do to help avoid over stimulation (see Other Ways to Recharge above). Or, used in conjunction with the “I am the type of person…” scripts, it protects you while still letting your unique traits show through. This mask requires less energy to use than other masks. It does require advance thought to plan for and implement the use of this type of mask, however.
Overwhelmed, Meltdown, Autistic Burnout and Adult Autistic Regression
A famous doctor once said, but I do to know who it was, “First things first, but not necessarily in that order.” I will thus skip what comes first and start at Autistic burnout.
What happens when you are continually overwhelmed, have regular meltdowns, are constantly using all your spoons or not able to let your batteries recharge fully day after day?
Causes and Symptoms
Your body is smarter than you are. With constant stress, anxiety, wearing a mask all the time, not letting your batteries recharge or constantly using all your spoons, your body starts to compensate. In the first stage, your body wants to sleep more. If you normally sleep for 8 hours, you may sleep for 10 to 12 hours. This helps to fully charge your batteries, and in bed, you are not using spoons. In the second stage, your masks start to falter. Your body wants to shutdown the masks and you show more of your autistic traits. The last stage is other tasks that you do on a regular basis can start to become hard or impossible to do. For example cooking, self-care or even talking can just be too much. A couple of symptoms that others may tell you before you recognize them are: people tell you that you are irritable or angry – feelings that you may or may not be feeling at the time. You may also exert more control over the variables in your life.
For autistic burnout, the recovery is relatively simple. You need more sleep to recharge your batteries. More you time – that is, working on your special interests, playing games, alone time, stimming, naps, music, and anything else that helps you relax – can all lead to recovery. Finally, cut back on the number of spoons you use during the day. If you are too busy, your body just cannot recover.
This is not a quick fix. Just like it took a while of overdoing it to get into this situation, recovering can take weeks or even months. Also, when you start to have more energy, do not immediately go back to your old routine. Burning yourself out again could get you all the way to Adult Autistic Regression.
Adult Autistic Regression
I struggled with what to name extended burnout. Over the years I have met many people on the spectrum that have been in burnout not just for weeks, but for months and even years. These people, and this includes myself, experience a loss of skills. These skills my return as you recover, however, some people have noted that they do not. for this reason I decided to use this title.
Causes and Symptoms
All the triggers for autistic burnout can develop into adult autistic regression. Other things to watch out for include: a traumatic life event (death in the family, loss of a job, etc.), depression, being overwhelmed on a regular basis (constantly draining batteries) or having a major meltdown. Also, not letting your batteries recharge to the point that they will no longer fully charge (battery memory). As noted above you may start not only to lose your masks but actual skills. You may go nearly non verbal, only able to give one or two word answers. Another example is you can no longer ride your bike because you cannot balance.
Recovery can sometimes be handled the same as for burnout (sleep, you time, and using less spoons). It will take more time to recover. As there are multiple ways to arrive in this state, you may need outside help to speed up the recovery. Talking to a counsellor, trusted friends or family, or attending our group meetings are all extra steps that will help in the process.
Part of the problem when you are in regression is that other people may not be understanding when you need concessions to help you get through the day. You can also be your own worst enemy and be critical of yourself when you cannot do tasks that you can normally do.
Recovering Lost Skills
What happens when you lose skills? Some skills will naturally come back as your energy recovers. Sometimes you have to relearn the skill. With the bike example falling down over and over as you relearn how to balance on your bike.
The next level is you may have to learn new way to do the skill. Again with the bike, before I lost the skill, I road racing style bikes (bent over hands close together for aerodynamics.) Now I have to ride mountain bikes, so I can ride more vertical and have my hands wider apart. I needed not only new way of riding but new equipment to be able to do what I used to do.
Sometimes you may never recover your lost skill. You may have to learn to do completely different ways of doing things. For this example a person has lost the ability to talk for the first hour or so every day. That person and the people around had to learn sign language to communicate.
Battery Memory Recovery
Battery Memory Recovery requires long term energy conservation. You need lots of sleep to keep as much energy to start each day. Continually do this and do not use all your energy during the day, and you will slowly increase the amount of energy you will have.
Overwhelmed vs. Meltdown
Now I previously described being overwhelmed as having less than 10% left in your batteries. For the symptoms, Look to Autistic Burnout they are the same. The two differences are it is only temporary only lasting a few hours to overnight, and the onset will be sudden. Learning to recognize when you are overwhelmed will help prevent meltdowns. More importantly, you can start to implement your coping strategies as you body shuts down.
The easiest way to tell if you are having a meltdown is control. When you are Overwhelmed we tend to try to exert more control on anything we can to compensate for starting to lose control in other areas. In a meltdown, You have lost control. With the loss of control, your emotions may also take over. One way this may show up in crying uncontrollably.
In a meltdown and continuing afterwards you may feel embarrassment or anguish for letting yourself meltdown. Meltdowns are a part of who we are, they show us where are limits are. Without meltdowns we will not know how we can push ourselves and what we can accomplish.
While original spoon theory may be a simple explanation, for others, it does not help us as much to explain why we can only do so much. I developed the Battery Powered Spoons Theory to help people on the spectrum recognize what is going on as we go through our days, and thus recognize some signs we are reaching autistic burnout before we get there, so we can stop it before it gets more serious. This can also help close friends and family better understand what we are going through.
Citations & Acknowledgements
Jessi Gowan — for editing and making sure I made sense
www.butyoudontlooksick.com/the_spoon_theory — Christine Miserandino
www.lunalindsey.com/2013/10/splines-theory-spoons-metaphor-for.html — Luna Lindsey
snakedance.tumblr.com — Ennien Ashbrook
archive.autistics.org/library/inertia.html — Anna Sullivan
nostereotypeshere.blogspot.ca/2009/10/spoons-batteries-and-autism.html — Corina Becker
We are an interdisciplinary team of researchers looking for input by clinicians and families to refine a newly developed clinical tool, the Autism Social Participation Classification System (ASPCS) through an online survey. You are eligible to participate if you have or work with a pre-school child (less than 8 years old) diagnosed with Autism Spectrum Disorder (ASD, autism, PDD-NOS, or Asperger’s syndrome).
There are no direct risks or benefits to participating in this study. The survey is anticipated to take less than 30 minutes to complete (most participants take approximately 15 minutes), and participants have a 1 in 10 chance of winning an Amazon.ca gift card worth $25. Please contact Tamara Germani, OT at germani [at] ualberta [dot] ca to participate.
Your Voice in Your Community!
& Inspire Others…
As the voice of individuals and families living with Autism Spectrum Disorder, Autism Calgary is pleased to announce the “Members Matter” category of our community blog. These articles feature stories, news, and inspirations from you – the Autism Calgary Members. As Autism Calgary members you may submit articles to be considered for publication to our community blog for one time publication or you can consider volunteering to be an ongoing contributor. Send an e-mail to our Community Development Analyst (Meg) at meghan [at] autismcalgary [dot] com to learn more.
The ideas and opinions expressed in our community blog represent the knowledge, wisdom, opinions and views of the author(s). While this does not necessarily reflect the views and values of Autism Calgary, these articles collectively reflect the valuable insight our members.
Autism Calgary is now on Instagram! We will be posting pictures and images about our services and upcoming events using hashtag #autismyyc. Click here to see our page!
We would also love if individuals and families in our community would use our #autismyyc hashtag to post pictures of an average day in the life of their families.
We are hoping our instagram page can be a source of inspiration, hope and laughter!