Ten tips that can help parents, teachers and caregivers
By Samantha Craft
Thinking about three autistics, my middle son (age 17), my adult partner, and myself, the following things assist us:
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 as well as 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 can’t 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.
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.
3.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.
4.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.
5.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.
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.
7.Understanding 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.
8.Understanding 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?
9.Giving unconditional love and acceptance
I thrive in an environment where I’m 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.
10.Giving me 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.
Autistic writer and artist, Samantha Craft is best known for her prolific writings found in her well-received blog and book, Everyday Aspergers. A former schoolteacher, with a Master’s Degree in Education (special emphasis on adult education and curriculum development), Sam has been published in peer reviewed journals, been featured in autistic literature, and has completed several graduate-level courses in the field of counseling.
Some of her works, especially The Ten Traits, have been translated into multiple languages. A natural entrepreneur, in her lifetime Sam has established and developed a pre-Kindergarten program, a counseling business, and a homeschool curriculum site. Recently, she founded Spectrum Suite, LLC, dedicated to the celebration of neurodiversity through the arts. Always attracted to a life of service, Sam has served as a volunteer tutor, a spiritual counselor, an advocate for children with special needs, and a voice for Aspegerian females. Since 2012, she has had the opportunity to converse with thousands of individuals touched by autism across the globe. A mother of three teenage boys, (her second oldest son is on the autistic spectrum), Sam lives in Western Washington where she enjoys writing, painting, the arts, movies, her work as a community manager (for a technology company that employs neurodiverse individuals), and spending time with loved ones.
This blog was originally published here.
Editor’s Note: Samantha Craft’s book Everyday Asperger’s is available on Everyday Aspergers. The e-book is free on August 1, Sept 1, and Oct 1, 2016.
Perhaps you can help me better understand. In my mind, #1 and #5 seem to be at odds with one another. How can one have things “in order” and “out in the open and within reach” at the same time? It seems to me that creating “order” would require putting things away (in drawers, on shelves, etc) and having everything in the open would create a lot of stress-inducing visual clutter. Can you describe for me how you keep your bedroom, office, or kitchen tidy with things out in the open?Do you have a system? Thank you for sharing your insights and for your patience with those of us who may not understand.
I commented below.
That’s such an excellent question. It seem contradictory in nature, if taken to extreme. Recognizing I have object permanence challenges has been a recent self-discovery. For my son (age 16 ASD) he likes his clothes folded on top of his dresser. We solved the clutter issue by putting his dresser in his closet, but we keep the closet door open. He keeps most of his things on a tall book shelf. They are organized but within reach and sight. For me, I love to organize, but have discovered if I put something in a drawer or file folder I either forget it’s there or have anxiety when I think about having to find it, even if it’s within simple reach. I cannot see it. If I cannot see it, a part of my brain thinks it is gone. That’s fine for summer clothes (off season) or keepsakes (memories) or things I won’t need for a few months. Every day things are kept in sight. I keep my bills and paperwork in one big basket now. In one place, so I don’t have to have that frantic feeling of wondering where I might have filed something. I limit things I own to decrease clutter. I like things behind glass, such as a book case or trinket display — I can see them but they are neater and organized. My clothes I have in a stack inside a tall armoire that opens. I have a harder time with things inside drawers for clothes. I might stack undergarments for the whole week neatly on a stool in my bathroom near the shower. Some things stay in drawers and cupboards… kitchen items. But if they are, then they are kept in white drawers in bright light and open wide or pull out far (as is my kitchen) it is easier for me. I hope that helps. Feel free to friend me on Facebook and on twitter I am @aspergersgirls.
This is a very helpful list for people who need to understand the experience of an autistic person. Very often I think people can’t comprehend the difficulties of coping with environment while trying to get on with everyday tasks.
Love this! Thank you for sharing. I’ll share this with my co-workers.
I didn’t realize that having things out in the open helped those with autism focus more on what is going on. I can see why this would help avoid them from thinking about other things. I’ll have to keep this in mind the next time I am hanging out with my friend with autism.
My children have asd
Thank you for this informative article. My daughter (24) was recently diagnosed as being on the spectrum. She is amazing as she was diagnosed AFTER she graduated college.
But I see so many of the traits from your “Females with Asperger’s Syndrome: An Unofficial List” in her. She is curently working with an autism specialist.
I want to learn more to relate and help. But in all honestly I never focused on Autism until she was diagnosed.
Regarding the traits you list in your List article, are these things that if I notice these traits should point them out?
Is this something that should or needs to be corrected?
I guess what I’m awkwardly saying is how can I as a parent guide and support my daughter as she deals with Aspergers?
(my apologies if I used incorrect language or terminology)
Love this! Thanks for sharing such a useful article.
Thank you so much! Your insight has given me a telescopic view into my son’s perceptions, views and behavior I haven’t had until now! Major Thanks!
In your experience, do you know of any organizations that would need a very bright 34 year old who has a degree in Psychology, degree in Economics and soon an MBA in business analytics? Where might we search for opportunities that in your experience would be a fostering and stimulating career for someone on the beautiful spectrum?
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