10 Ways to Assist Your Autistic Loved One

Thinking upon three autistics, my middle son (age seventeen), my adult partner, and myself, the following things assist:

  1. Having things out in the open. When items are out in the open and I can see them and know there is ‘enough.’ This applies to real concrete objects and other people’s thoughts and opinions. When something is hidden or out of sight, my mind tends to go off track and focus on what’s missing. Having someone be transparent and upfront helps me to stay focused on the immediate present and not drift into the land of what ifs. Having things in reach and out in the open, such as one pair of socks (sorted and ready for every day of the week) and toilet paper rolls (the extra ones), and things I use every day (toothbrush, toothpaste, shampoo, and pertinent notes) makes life predictable and easier. I even like my clothes out for the next day and sometimes the whole week. This has to do with object permanence and generalized anxiety disorder. It’s hard for me to logically (and emotionally) trust that objects are there or will be there when I cannot see them. This isn’t something I can change. It has to do with my neurological structuring. If something is there, right in my line of vision, it helps alleviate multiple questions and fear-stricken doubt.

 

  1. Having predictability in my day. I do best when I know what to expect. I don’t like surprises of any sort; not even well planned potentially “happy” surprises. I need time to thoroughly consider and visually walk through what will feasibly transpire in the future. When I don’t have ample time to process, I get confused. Change of plans causes a whirlwind of what ifs and how. My mind doesn’t stop at a one-sentence statement; it typically undergoes an entire chapter of a book with the coming of new news and change. Not generally at a devastating level of inquiry and mayhem, but at a makes-me-immobile and makes-me-overthink level. With the sudden coming of change of plans, I get all clustered in my head and seemingly out grow my own brain! In response to a surging panic and confusion, I might make biting remarks, fully recede in thought, ask a series of well-meaning but sometimes “annoying” questions and/or escape the scene of the change-of-plans crime. My brain deciphers, dissects, reorganizes, and spits out information at rapid speed. I need time to go through what my mind needs to go through. An immediate change of plans equates to an immediate sense of unknowing and a foreboding unease. When there is change, it is best presented in a rational, slow, and logical manner. I need to know the reasons behind the news—and sometimes the reasons behind the reasons.

 

  1. Having something to look forward to. I function best when there is something I am anticipating to be an enjoyable experience. Thoughts of an upcoming happy time help to counter balance the torrential ever-building storm of anxiety. I don’t need anything fancy. Knowing I am going to treat myself to my favorite takeout meal, thinking of a new release of a television series that I can binge watch, knowing I am going to have a day to myself to sleep in and rest, or lunch with a dear friend—all these ‘small’ things add up and help me keep going.

 

  1. Having an outlet for my angst. It took me a long time to figure out how to release my stress in a healthy way. I didn’t readily realize certain things I innately did were natural stim techniques I was implementing, such as playing video games, watching a television series, cleaning, organizing, perusing social media, reading and re-reading my writings, and creating in multiple forms/projects. It also took me some time to recognize that if I spend a significant amount of time stimming (through one various aforementioned activity), and then the access to that activity is halted, then, as a result of the “end,” I am inevitably pulled into a state inertia or disheartenment. That is to say, when the main distraction from the challenges of life and sensory overload is removed (perhaps as a result of completion), I then charge full speed into an uncomfortable state of body and mind. What happens is with finality and absence, I am left rather dumbfounded and out of sorts.

 

  1. Having things in order. The need to have things in order reaches across all areas, including my immediate space, rooms in my house, paperwork, my mind, and life in general. Having things in a systematic place means one less thing I am wading through to find closure and the end mark. It means less anxiety brought on by challenges with object permanence. It means one less thing I have to decipher, figure out, sense, experience, and wander through in mind. Knowing what to expect when I open my own dresser drawer or enter my own living area, means not having to guess, conjecture, and process in excess before, during, and after an encounter. If I am unable myself to sort, organize, or find needed structure regarding a concrete situation or abstract situation, then having a trusted someone enter my realm and assist is beneficial—particularly without added shame, blame, or expectation.

 

  1. Having Silence. I am much the one to absorb with all my senses on the highest notch. I am searching and recreating everything. Music becomes rhythmic colors and memories. Smells bring me forward and backward and forward again in the timeline of life. Sensations spark questions—inquiries about how, why, and what. Words enter and become living entities with personalities and their own wherewithal. Tastes evaporate, one into the other, forming insights and possibilities—reminders of enough, not enough, and excess and emptiness. I am uncomfortably penetrated and other times lavishly bathed in the swirling motion of my environment. Having reprieve from the noise and incoming data is essential to my healing and reenergizing and my ability to take on another moment.

 

  1. Having others understand I am tired. I have a condition similar to EDS. My joints hyper extend; I don’t heal well or completely from injury. I also have other immune challenges and pain conditions. In addition, simple tasks such as standing in line, standing upright, walking, and getting myself up from a seated position, can prove exhausting and even bring about increased anxiety. My heart will beat rapidly at times, I get out of breath, and it takes me some time to gain my balance, maneuver corners, and adjust to my own bodily sensations and pains. I am on overdrive, even when I don’t move. And so it is, when I do move, a whole other added dimension materializes, that of readjusting the whole of me to a whole lot of discomfort.

 

  1. Having others know I might not be able to follow through. Overall, I am a reliable person. I stick to my word. I mean what I say. I say what I mean. I show up on time. I keep people posted when I change my mind or circumstances dictate a change in my plans. Overall, you can trust me. With that said, I still have to back step and renege from time to time. If I change my mind it’s typically nothing personal. If I cancel a lunch date at the last moment, it’s likely not because something dynamically shifted. Oftentimes, there is no exact reason I can pinpoint for changing my mind. Usually, if I am a no-show, it’s a result of a potpourri of thoughts that spin me into overwhelm mode. I might cancel as a result of physical exhaustion. It could be I changed my mind because when I initially said “yes,” I was feeling brave; I was likely the confident me at that time: self-assured, reasonably well adjusted, reasonably at peace with who I was. But that sense of self-assurance isn’t stagnant in form; in fact, my sense of who I am alters moment-to-moment. So, wherein I might have seemed super excited, or at minimum a bit interested, when I originally committed, by the time the actual date rolls around, much todo about a lot might be bouncing about in my over-filled brain, including self-doubt and multiple questions: What to bring? What to wear? How to get there? How to act?

 

  1. Having unconditional love and acceptance. I thrive in an environment where I am loved for me, where people aren’t expecting me to change, or to pull my weight under their strict direction and personal guidelines, a place where I can follow my own pursuits and self-nurture through routine, special interests, and plenty of think- and alone-time. I do best when there are long periods to any given day in which I can become absorbed in thought and endeavors without interruption. I need my alone time much like the human body needs sleep. Through my interests, I rejuvenate and subconsciously work through input from the day. Knowing someone understands this about me and loves me regardless, helps me to continue to be who I was made to be.

 

  1. Having others know I need ample time to process. The act of processing circles back to pretty much everything in my life, including my own emotions and self-expectations. I cannot function well without having ample time and space to go through what is occurring in my life both externally and internally. During the act of processing, I might act in a way that seems out of the “norm” or unexpected. I might ask a lot of questions, I might retreat into a private space, I might lash out, and/or I might have an anxiety attack. Knowing another understands I am doing the best I can do (and that I am taking in a lot all the time), lessens my circulating discomforting thoughts. Knowing another accepts me at face value, and understands I am autistic alleviates self-pressure to be something I am not wired to be.

 

Sam’s book, Everyday Aspergers, will be available on Amazon starting this summer. 🙂

Most Recent YouTube: If the sniffling bothers you, mute the sound.

 

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16 thoughts on “10 Ways to Assist Your Autistic Loved One

  1. Oh my goodness- this is so bang on. This is my life and how I need to manage the day to day. So many do not get this but thankfully those that matter do. I am so glad my life can be a haven of this assistance most of the time! and that I discovered sisters like you who get it and my own personal needs. LOVE this.

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  2. We are in a legal situation and need comments or statements from doctors that agree with much of what you have set down here. Can you suggest any doctors who have written about sensitivities to noises, need for privacy, to feel safe, dietary issues….all those things that you would not.get in an institution setting for a high functioning autistic male adult. Thanks.

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    1. Lovely article. thank you! I need to spend some time looking around your blog. I just got my manuscript back and have to do a quick glance and finalize it!!! eeeekkkk I’ve read more in the past 6 months than in my entire life. And yes, INFJ Idealist. Took the test at 27 and again at 44 … same 🙂

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      1. Yes I have always been an INFJ- in my teens till now- always the same:) LOVE it. EEEEK so exciting about the manuscript!!! I can’t wait!

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  3. Great post! Agree with them all! My #11 is “Believe Me.” If I say I need time alone, leave me alone. It’s not a cry for help or me trying to be difficult, I just know I need to be alone for a while so I can calm down and/or focus. Or if I say I don’t like something or don’t want to do something, don’t try to force me. I know when I’m at my limit or getting close to it. I know myself and my limits and know what happens when I get to that point where I need to be alone. Wish my family would understand that.

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