This past Saturday, I presented at the 2nd Annual Southeast Adult Autism Symposium! It was a very fun experience, and I met lots of interesting people.
As always, I try to upload the presentation information online. I know it’s difficult for some people to attend these events, whether it’s due to cost, distance, or other personal reasons. My fiance also recorded the session, and I can upload it if anyone wants it.
The PowerPoint Presentation can be found here:
Organization and Planning – Practical Strategies for Independent Living
(Please don’t use this in a presentation without my permission; thank you!)
As my presentation was part of the Independent Living track, it is important to note that this post relates mainly to tools to help you or someone you know live independently. When people think of independent living, they often think of financial freedom, living alone, having a job, and other aspects. However, the most significant aspect of independent living is self-determination and autonomy – getting to make your own decisions and choices.
Independent living also has a vital building block that many people do not cover – the concept of interdependence.
There’s a phrase that comes to mind: “No man is an island.” Contrary to what I thought as a kid, this has nothing to do with geographical features. You have to remember that everyone depends on someone else. Even the most neurotypical, able-bodied person you can think of needs other people. For example, very few of us grow our own food, create our own clothes, and build our phones and computers from complete scratch. All of us rely on other people in some way or another.
Understanding this is the first step to true independence – knowing that it’s okay to need supports and assistance. Never feel bad for needing help. That’s simply just how life works, and it’s okay. Know that your accessibility needs are completely valid.
Executive Functioning: A Brief Overview
Have you ever had the feeling of walking into a room and having completely no idea what you’re supposed to do next? It’s remembering that you’ve forgotten, but not knowing what.
Or, have you ever had so many tasks that you get too overwhelmed? A task so daunting you decided to go for a lie down instead?
That’s something many autistic people have every single day.
One of the things that is quite difficult for many autistics and neurodivergent people is something called ‘executive functioning.’
It’s the mental processing involved in making decisions, multi-tasking, organization, and getting started on tasks. It’s not exclusive to autism, though. It happens in people with ADD or ADHD, neurocognitive disorders, and even mental illnesses such as depression and PTSD.
Executive functioning has several different aspects that often overlap together. These include:
– Emotional Control
– Working Memory
– Organization of Materials
For this post, we’re only focusing on planning and organization.
One of the most significant issues with executive functioning is the assumption that the person is lazy. This is often the case when the person is a teenager or young adult- especially as teens and young adults are often known for the stereotype of being lazy.
However, it can actually be detrimental to accuse the person of laziness. Many times, they already are frustrated with the difficulties of executive functioning. The scolding, in turn, can exacerbate stress on the person and cause greater difficulty in functioning.
Of course, we can be lazy too. It’s okay to be lazy sometimes; relaxing is a perfectly healthy thing to do! That’s an entirely different conversation.
Someone who struggles with executive functioning may have difficulty with organizing tasks. If you give them several instructions at once, they may feel overloaded and overwhelmed. They may even have trouble remembering what you told them. When this happens, they may not be able to do them at all – or only one or two. For myself, I’ve sat in my floor for two hours because I was trying to process my tasks for the day. My brain has to pick each step apart so I can fully grasp it, or else I become overwhelmed significantly.
How to Cope with Executive Functioning
Let’s face it: “adulting” is hard work.
It’s hard to keep track of everything. Doctor appointments, chores, medications – it can get overwhelming really fast. I get stressed out by the smallest details, because there’s simply just so much going on at once and I can’t process it.
When you’re living independently, these things are all very important. However, when you’re autistic or neurodivergent, “adulting” is even more difficult.
Physical and Online Resources
One of the most important things to keep in mind is resources. There are some resources out there for adults with intellectual and developmental disabilities, although sometimes they can be hard to find. I will have a link to all of these at the end of the post.
For physical resources, there are some that are often local-based. For example, there are several Arc chapters across the United States. The Arc is an organization that helps individuals with intellectual and developmental disabilities, as well as their families. They can help connect people to community resources and services that people may otherwise not be aware of. Our local chapter here is quite wonderful.
There is also something called Home and Community-based Services, which is related to the Medicaid waiver. This is intended to help people with disabilities live in the community instead of institutions. Unfortunately, these programs usually have waiting lists. Programs vary by state. Tennessee, for example, has the Employment and Community First CHOICES program. This takes the place of the Medicaid waiver.
As well as this, there are places called Centers for Independent Living. These are not institutions, but are meant to be a community resource to help people live in their community. Another important organization related to this is the National Council for Independent Living.
Another resource is to find social groups in the area. Social supports are important for both your physical and mental well-being. When you have an intellectual or developmental disability, it’s important to establish and maintain friendships and connections. We’re much more likely to struggle with mental health concerns, which often stem from a lack of resources, acceptance, and accessibility.
For online resources, there are a lot of great websites and posts by autistic self-advocates. I’ll list them at the end of this post.
Tips and Tricks for Executive Functioning
For my presentation at the conference, I focused mainly on the practical aspects to help with independent living.
Statistics and numbers are great, but in a conference, I’ve found that people tend to prefer to learn about things that can be implemented or are applicable to related situations.
Most of the following strategies may be things you’re already aware of. Many of them are tools that people tend to take for granted, or don’t realize the importance of. While some may seem quite simplistic or obvious, please keep in mind that some people rely heavily on these things – and that others may have not even considered these as tools to help with executive functioning.
“First, Then” Boards
If you’re more picture-oriented, a “First, Then” board is also very useful. When my brother was first diagnosed, that was often used. We had a really nice binder with lots of different pictures, and it was great. It helped him transition more easily, and it helped prevent frustration a little. I secretly wanted one for myself, to be honest! We used them when I was with my friends in the CDC classroom as well, and they were fantastic.
They are more well-known for younger kids, but sometimes they can be great for very short-term tasks or shifting focus.
For myself, I’ve been in the process of making several visual schedules for my dorm. It might seem a little childish, but it’s really helpful to have a visual prompt and simplistic list of steps to keep me on track in the mornings.
If you’re a visual person, these can be very helpful. You can make them look more mature or “age appropriate” if you need to, but I like my little cartoon images on mine. It looks less clinical and more happy.
These can be found online and in classrooms. You can even make your own and laminate it! Afterwards, you can use a dry erase marker or even velcro if you want. It all depends on what works best for you.
In my previous dorm, I had several post-it notes around my room. These were used to remind me of important tasks, as you can see below.
Some of these things are processes I’m actually quite good at, such as looking after my Leia Lyta. This is because cats are mostly self-sufficient, and I tend to prioritize her anyway. Cats don’t let you forget.
Other things are things I sometimes need reminders on – like brushing my hair or taking my meds. When I used these, I was having significant difficulty with remembering to eat.
(Tip: if you or your kids have issues with this sort of thing, nutrition drinks are the way to go. They’re sometimes actually not that bad once you find the right flavor for you.)
If you’re using Post-it Notes, it’s important to make sure you place them in a visible area. Don’t forget to move them around occasionally as well. Your brain will get used to the note, and it may no longer be effective. When the notes begin to be a part of the background, your mind may filter it out.
If you take any medications (especially if you have several co-occurring conditions), it’s important to remember to take your medication when living independently.
I am unfortunately not very great at remembering to take my meds. I’ve found that using a medication box and organizer is really helpful. However, it’s important to refill the box on time. I have to be nudged because sometimes I forget, and get a little stressed out over making sure everything is in its correct place.
If you find it to be a stressful task, it’s okay to ask someone to help. Like I said earlier, independence is all about interdependence.
Many people have a very useful tool already on hand – the smartphone! From apps to pre-installed operating system features, phones can be incredibly useful.
Alarms and Timers
When you use alarms, they can serve as great methods of reminding you to do things. Some also pester you until you do the thing – a feature I’ve found useful with medication apps. I still haven’t found my favorite app to use yet, although Medisafe and Round have proven to be quite helpful.
Make sure you don’t use your favorite song if you worry about getting tired of it. Likewise, make sure that the alarm does not startle you or make you feel anxious. I tend to prefer vibration alarms because I’m hard of hearing. I may not always hear the alarms go off, but I have a Fitbit/medical ID alert wristband that can get my attention by buzzing at me.
Planners and Organization
As for daily planners and organization, I have several methods. My main calendar is through my phone, per the typical college student’s life.
Phone calendars can be very useful for marking plans immediately when made. You’ll find that the in-built calendars are useful, although there are apps that can do more. These apps should work with accessibility features such as VoiceOver, but not always. It’s important to keep that in mind if you rely on these important features.
There are several apps that can help with keeping track of habits and daily tasks.
This app is called Habitica. It’s free, and similar to a role-playing game (RPG). I have a lot of friends (both autistic and neurotypical) who love this app, and use it daily. It uses the gaming aspect as a motivator to complete real-life tasks, and is intended to help with establishing and maintaining daily routines.
Pen and Paper Methods
Many people prefer to write down things, especially those who learn best through writing and muscle memory.
Agendas and Planners
I recommend color-coding the information, as it can help your brain organize and associate things together. Handwriting may not be beneficial or feasible for some people, and that’s okay! Remember, always do what works for you.
Some people even prefer wall calendars or desk ones. I use different ones with mostly the same information. It helps me remember, but it also gives me a rough idea of how my day is going to go. With this information, I’m much less likely to have a meltdown or get too stressed during the day.
Worksheets and Lists
Things such as worksheets and executive functioning handouts are also incredibly useful. I went over some of them when I did the executive functioning workshop a while back. The best part is that you can use them to work out complex situations – or simply just to get a better understanding on how to keep your brain motivated and in tune with your daily activities.
There are several places where you can find these, from exploring printables on Pinterest to even speech therapists. The one posted above actually came from my speech therapist at the time.
I have a few resources and worksheets on file, but I’m not sure if I’m allowed to post them. f you want any of these resources, just send me a message and let me know! I can usually find printable things to help.
What if I have no motivation?
Writing, planning, and organizing is great – but it doesn’t necessarily motivate you to do the things. Sometimes, it’s hard to gather the motivation or energy for tasks that many people consider simple. This is especially true for those of us who have depression, chronic illnesses, and other co-occuring conditions.
If you’re absolutely too drained to do anything, pace yourself. Break things into steps, and take breaks if needed. You can set a timer to have a 15 minute break, and then go back to the task. And if you’re just not able to do the task, it is okay to take a step back. Autistics can go through burnout and are more likely to have meltdowns when they push themselves too far – or try to “pass” as neurotypical for too long.
If you’re noticing that your executive functioning skills seem to be less controlled, it could be a sign that you’re headed for burnout or a meltdown. I talked about meltdowns in a previous post, as those can be hard to deal with. If you realize this is happening, remember that it’s your body and brain’s way of telling you to slow down and breathe. Us autistics are much more likely to struggle with mental illness and other serious situations, much of this due to a lack of supports, accommodations, and acceptance.
Again, there is no shame in needing extra supports. If you’re struggling, it’s okay to take a break, request that extension, or ask someone for help. Like I said, everyone depends on someone else. It’s okay to need support.
Resources and more information on executive functioning:
- The Arc and local chapters
- Home and Community-Based Services (Tennessee specific)
- National Council on Independent Living
- Directory of Independent Living Centers
- Autistic Self Advocacy Network Toolkits
- Real Social Skills
- Judy Endow, MSW, LCSW
More Information on Executive Functioning
- What is Executive Functioning?
- Executive Function and Self-Regulation
For those who are interested, here is the video of the presentation: