You may or may not know this, but today marks the start of World Autism Acceptance Week. Now, I will be perfectly candid up front—this is a subject where I am in need of education. I do not have meaningful experience in this area in my own life, and as such it’s not something I have spent a great deal of time thinking about.
So, I was happy to oblige when a reader reached out to me with a request to share their own experiences with you. Today, I’m handing over the microphone for a rare guest post, one that I think offers a valuable perspective many of us may not have taken the time to consider.
I hope you appreciate it, and as always, I thank you for reading and supporting The Action Cookbook Newsletter.
I’ll be right back here with you on Wednesday.
—Scott Hines (@actioncookbook)
One of the interesting aspects of the internet is how folks will tell you that you are wrong for not having the same preferences, perceptions or tolerances that they have.
There are folks who enjoy a nice rare steak, while my perception of steak not cooked at least medium well is that it has a texture which is not good. Growing up, a rare treat was to visit the local steak restaurant where my sister would order a steak tending towards rare while I usually ordered well done. She complained that her steak was not good, meanwhile my steak was perfectly fine. Next time she asked me to order her steak and she would order mine. My steak which she ordered was good, hers wasn't. It wasn't until she started consuming 2 week dry aged steaks that she perceived that her rare steaks were good. Meanwhile I enjoyed lots of tasty steaks with at most a tinge of pink that had in my perception the perfect texture. And for those who think well done steak is dry, I will only say that is because they are not cooked properly and there is a proper means of cooking steak.
Another food where my perception is quite negative is dates and raisins. I dislike the texture a lot, and avoid both of these foods as much as I can. Date paste in an energy bar is one of the most disgusting things I have found. Oatmeal cookies are delicious until such time as you add raisins, even small bits tend towards bothering me and not enjoying an otherwise delicious cookie. However there are others who find the use of dates and raisins perfectly acceptable.
There are probably a group of the readers at this point who think I'm a monster, another group that think I'm entitled to my opinion and then those who support both of my perceptions for these foods.
I'm used to it.
It doesn't matter if it is academics, sports or work, there are those who dislike me due to how my mind works. At worst, they try to have me fired, work towards having others dislike me and more than once physically assaulting me (less common as I've aged, but I've still had another try to physically intimidate me in the work place in the last 5 years.)
Another perspective on sensory issues concerning food.
This week is Autistic Acceptance week, which is starting to have more and more who are Autistic guide Autism Awareness Day (4/2) into something a bit more positive and directed by Autistics rather than just asking non-autistics, i.e. allistic, to be aware of Autistics. Although, we are outnumbered by a large margin and really do not have as much influence as others even in organizations directed towards Autism.
In case you are wondering why Autistics are working towards improvement:
In >3500 papers, Autistic well-being is framed as parent/carer wellbeing.
Prevalent “treatment” is ineffective at best and abusive at worst.
A thread on Autistic research, it isn’t positive, as “dehumanization, objectification, & stigma” are present.
Most likely you won't interact with an Autistic, as we are only about 2% of the population, and only about 20% are employed full time; if you've not interacted with an autistic by the time you leave school it is unlikely you will. Unfortunately the stereotypes are not a good indicator of autistic individuals.
Sure, there are those who have an ability which is amazing while having a lot of limitations but then there are the remainder who are not in the very rare category. As a note, Rain Man was based on an individual who was not autistic although the movie tended towards portrayal as autistic (interesting article). Or you will see a post showing the destruction caused by an Autistic meltdown, but nothing will be said about ignoring how the Autistic person felt, the build up of frustration/stress until a release is needed. As mentioned, I’ve had others attack me, then my eventual response was considered inappropriate although if the other had not provoked me I would not have responded.
As an aside, bullies never think they are bullies.
There is also the aspect, both online and in person, where others do not “bully” you through physical assault but instead perform actions which lead to isolation of the Autistic individual. I’ve had this happen more than once, in some instance just because I exist and in others because another takes exception to how my mind works. I’ve overhead conversations where I’m being discussed, or had another say it to my face, where the overt message is that I’m not acceptable, that I have no value or in the worst instances that my value is negative.
Autistic suicide rates and deaths higher.
Anyone who is autistic finds life challenging to say the least regardless of other factors, someone with a university degree who is autistic has more in common with a non-verbal autistic as it relates to how their mind works than with university graduates who are allistic. The autistic mind is spiky in its ability, maybe great in one area without being savant level but not so great in another area, such that non-autistic can underestimate the ability of an autistic mind as the low ability areas may be easier to perceive.
Academics are much easier when you study something the mind is more inclined towards, and if you are fortunate that it aligns with a special interest (area of intense focus) then full speed ahead. While studying an area, or in a manner, where the mind has difficulties then learning is very difficult. One area where I have trouble is verbal processing, as lectures are the typical teaching method in higher education this led to having to learn work arounds and using exercise to fight the stress.
Interesting article on autistic people in research setting and discussion of perceptions —researcher is mentioned in the Atlantic article above.
The double empathy aspect is particularly interesting as autistic individuals are asked to adapt to the normal world then make the slightest mistake which is not forgiven as the normal individuals think they are giving a lot when in reality they are not moving far from their normal place. If you want to learn more, this is a decent introduction.
Which leads to the question of how does an autistic person perceive the world.
Only speaking for myself, I find it noisy, there are messages/perceptions/sensations which can bother me. Living in a dorm and being sensitive to noise was not a fun experience, an open office plan is highly bothersome especially if management has a traditional view of the workplace. There are times when my watch, or clothing for that matter, just feels uncomfortable; my mind notices and wants that noise/signal gone. Although I do have work arounds for most issues and being an adult has provided means to avoid aspects of life which cause issues in the sensory area.
I still have times when it is too much, sometimes it is caused by my mind leaping ahead of others in thoughts (note to self, always explain how you end up at a solution, state or argument) where it seems self-evident while others are still at the initial stages or have no comprehension. While other times it is the environment itself which is causing the issue and I need to remove myself prior to sensory overload. Even nonverbal communication is something I have had to learn, I do decent in formal situations these days but when the rules are relaxed then it is a very big struggle (highly recommend Lie to Me or Desmond Morris’ The Human Animal for interesting non-verbal communication aspects) where I’m usually perceived differently than I intend.
The most difficult aspect is that I have to hide, which I'm not good at, how my mind works to try to fit in. Most workplaces, after a certain amount of time there is that segment that start feeling comfortable trying to get me fired (even if I excel in the work), disparaging how my mind works, and in other ways work towards making my life uncomfortable such that I need to find other employment; this typically takes from 1 to 3 years. Working from home, despite some other stressors, during pandemic was great as I could make the environment fit what I needed while only interacting with folks remotely which removed several areas which can cause problems.
My perceptions from interacting with those who are not autistic is that they are very good at interacting with others like themselves, but they have a very difficult time in recognizing different desires/needs/wants from others that may be different than the normal people. I think it is highly beneficial when folks ask themselves how they can learn to interact with others who are not like themselves by adapting rather than causing extreme discomfort to another who's perceptions and thought processes are different.
Who knows, you might find a friend.
As I end this, a couple of foods I enjoy, fried chicken like mom and grandma made, where it has the crispy outside and moist chicken inside along with just the right amount of spices; pecan pie has just the right blend of crispy and crunchy combined with sweet smooth filling.
I’d like to thank ACB for being a mensch, interrupting his excellent writing (and emotional terrorism) for a newsletter outside the norm.
Thank you Scott for giving this platform and a sincere thank you to our guest writer for this post today. I found it enlightening and deeply personal. My brother is both autistic and non-verbal and I would give anything in the world just to live inside his brain for 5 minutes to better understand him, his needs, and how I can support him doing all the things he is capable of.
I often say he is forced to live in a world that wasn't built for him so he has to be incredibly adaptable. And be adaptable in ways in which those of us who are neurotypical would never have to experience let alone be able to comprehend.
I don't mean to speak for those who have autism as my experiences are not theirs but this post says what I have felt for a long time in regards to my brother and those like him - instead of asking him to adapt to us, we should be asking how we can adapt for him. Thank you again.
I appreciated this column. Life is difficult for those outside the norm. Thank you for sharing your experience.