From one obsession to another… autism and obsessions

Photo by Brett Jordan on Unsplash

For as long as I can remember, I’ve been throwing myself from one obsession to another. When I was a child, I was very often the one who absorbed everything about one subject for a few months and then, suddenly, became interested in something completely different. In that period of months everything around one theme dominated my life. Clothes, way of speaking, pronounced opinions, … I copied a lot of my obsession. That was not always appreciated. Sometimes this resulted in a ‘interest-related friendship’, that mostly came to an end after a few months. It wasn’t so much a friendship but more a shared obsession. Sometimes the friendship itself became an obsession. If that was the case, I became the shadow of that boy or girl. Until they made it clear I was too much, I came too close. Nowadays I am much more aware of my obsessive behavior, but I still find it difficult to moderate my enthusiasm on something or about someone. My current obsession is more on activities such as writing and reading or collecting quotes than on people or certain objects.

What can I do to better serve autistic customers? … autism and shopping

Now that it’s spring again, shopping becomes a bit more fun. At least, for those who like to shop and relax in a tearoom or cafe. Of course, there are many autistic people who would rather not shop or go out for a drink, or are forced to do so, with protection such as earplugs or headphones.

When I look at the reactions and suggestions in my mailbox, I notice that there are some autists and people involved who prefer adjustments that really help. More structure, clear information so that they can prepare and know what to expect, according to them this is more useful but also more difficult for the shopkeeper and costs more money than occasionally turning down the lights and the radio. In addition, there are also autistic people who just love a busy shopping street and a snack and a vibrant city life.

Every now and then I am also asked whether there is a list of shops with which autistic people or parents with their autistic children have good experiences, or that are known to be more autism friendly. Subsequently, some people sometimes ask me if I know of campaigns that raise awareness among small shops or large retail chains so that they can better help their customers with autism. Occasionally I even get the question from a (local) entrepreneur what he/she can do to better help autistic customers. Twelve years ago, I wrote on article on it, but since then I have not been aware of such initiatives.

When my wife and I go shopping, we have five areas to consider when deciding where to spend our money. Of course, I don’t want to give a generalized picture. Every autistic consumer has his own criteria for making a purchase. As far as I know, no research has yet been done on the consumer behavior of autistic consumers.

Whenever possible, we buy online. However, sometimes it is unavoidable to go to the physical store. Sometimes online shopping also brings so much stress that the original concept is almost a breath of fresh air. Sometimes the way product information is displayed is incorrect, unclear or simply misleading. For example, when I go shopping for clothes, it is impossible for me to find my correct sizes online. Other products are damaged too quickly when I buy them online.

When I go shopping, I like to know how busy it is, whether I will find what I expect to find (and not get lost), whether I can easily find out who to contact for what, in case of questions, whether they help me in an understandable language, and, above all, whether they will not force anything on me that I do not want.

It’s not that easy to find out at most stores. A lot of information may be known to the operator but is not made public. Everything else is either “secret” or so ingrained in the commercial concept that many sellers don’t realize that it could lead to losing customers.

Take, for example, the crowds in the store. Our assumptions about that crowds are not always correct. This is not always due to the unreliability of Google’s statistics of how many people on a particular moment are in a particular store. Even if we see a parking without vacant lots, for example, we assume that it is very busy, and we choose another store. But sometimes visitors from other shops park there or perhaps just tourists of locals looking for a cheap parking space. On the other hand, a store with not so many customers can also be quite busy. Besides, it depends on so many factors whether you think a store is too busy or not.

Some store traffic tool would therefore be useful. They already exist and are often used as a source of information for the marketing strategy. You would think that such an instrument would be part of the Covid-19 measures, but that is not the case, perhaps for fear of commercial setbacks. However, there are also quite a few people who are attracted to crowded shops. Provided, of course, that it is clear what is meant by “crowded”, and that this can be measured objectively.

Also, an accessible, adapted, clear floor plan is usually missing, unless as part of the evacuation plan. If it is already there, important information is often missing, such as the entrances and exits, different zones or walking routes, where the cash registers are located, where there is a toilet, where the reception and/or information point is located, and whether there is WIFI. is present (and how to activate it).

Not immediately finding what you have in mind, and having to search the entire store for that, seems to be part of the sales strategy in many stores. It would be more convenient if there was some sort of GPS or catalog that would show me the shortest, fastest, or least populated way to my product of choice.

After all, in that case I wouldn’t be tempted to buy something I don’t immediately think of, or I wouldn’t be persuaded by some of the shop assistants. el probably also not interesting to always know to know exactly where I am in the store. On the contrary, I must stay as long as possible in the store and pass as many products as possible. I prefer to lose my shopping list while on the road, as well as my WIFI reception, because this prevents me from comparing prices with other stores’ websites.

When I go shopping, I also like to know who to contact if I have questions. I like that I take the initiative in this. So, sellers don’t have to come up to me right away and ask me if they can help me. A simple and polite ‘welcome’ will suffice.

Furthermore, a clear mention of the name of the employee and his/her expertise on the clothing would also help me, for example with the sentence ‘I am TOM, and I will help you with household consumer products’. I also like Tom to help me in a language I understand, and not with technical jargon if I don’t start with it myself. In some stores, a glossary, or folder of the most used words, would help to understand what’s on the labels.

A fifth and final criterion is help in the selection process. During shopping I often have trouble making a choice from the overwhelming number of possible products or services of which I can hardly tell the difference. It’s often hard to see what’s left in stock (unless you’re buying online), and what’s included in the price quoted.

Every now and then I talk to a seller about it. I like that they have product knowledge, know if they can help me (or can tell me where I can find it), and that I don’t get something forced on me that I don’t want. Especially that product knowledge, and knowing where I can find it, often turns out to be disappointing for many sellers. Whether purchasing a cotton men’s shirt or a washing machine, a salesperson needs to know what they’re selling. Unfortunately, some sellers don’t know the difference between cotton and polyester, or between a washing machine and a dryer. On the other hand, they seem to know what needs to get out the door the fastest.

When I feel that way, I can unfortunately become a very difficult customer, but if I feel like I’m going by the rules of the sales art, I’m very loyal, even writing glowing reviews that others appreciate. Then you can call me a satisfied customer.

Finally, there are of course many more aspects of shopping that are illogical through an autistic lens and can be done much more efficiently and better. This of course also depends on the situation, whether it concerns a parent with a child or an adult autistic person with a partner, or a counselor with an autistic client. Addressing the right person, in a clear and concrete way, not being put off by, for example, headphones or earplugs that someone is wearing, is of course also important. The five aspects I discussed are for us, my love and I, the most important at this point, for other autistic people, there may be very different ones.

What I do notice is that many of these points of interest are rarely or not addressed when it comes to autism and shopping. A low-stimulus shopping moment may well be an encore, but to shop as independently and relaxed as possible, you really need a lot. And autistic people and the people who feel involved with them (such as parents, family, etc.) can help to make sellers more aware of this.

The Reason I Jump … autism and documentary

In recent decades, autism has increasingly become a topic in films, series and in pop culture in general.  As We See It, Everything’s gonna be ok, Hors Normes, Follow the SOA, The Good Doctor, Float, The Bridge… are just a few of the documentaries, series or movies that may sound familiar.

In the coming weeks, another of these productions, the documentary ‘The Reason I jump’, will hit our screens in Europe. This documentary from award-winning filmmaker Jerry Rothwell was also selected for the annual Disability Film Festival in Leuven (Belgium) in the beginning of May. I was already allowed to watch the film, and on May 12 I am invited by the Flemish Autism Association to introduce the screening of this wonderful work of art. 

With ‘The Reason I Jump’ Rothwell mainly wanted to make a film in which autism is explored ‘from the inside’. The basis for this is the book of the same name by the autistic writer Naoki Higashida, who at the age of 13 described his experiences and feelings as an autistic person amid neurotypical people.   

The now 29-year-old Japanese did not want to participate in the film. That’s why director Rothwell interweaves the stories of Naoki Higashida with the images and stories of five young autistic people in India, the UK, the US, and Sierra Leone. A narrator uses Naoki’s words to guide you through the world of non-speaking autistic people. Reviews from the American press were mostly positive, and in 2020 the film even won the audience award at the Sundance Film Festival.

From the beginning of the film, there seem to be only two worlds: the enigmatic of the neurotypicals and the mysterious of the autistic people. The voice of a narrator takes the viewer on an 83-minute illuminating, compelling and loving film that immerses you in the stories of non-speaking autistic people.

All kinds of cinematic techniques are used in a creditable attempt to make an autistic experience tangible. The autistic people in the picture are shown in their daily lives in seemingly unnoticed, personal moments, but also in stressful and overstimulating situations. This results in a lot of enlightening, poetic, and sometimes quite poignant moments.

It goes without saying that involving these autistic people does not immediately mean that ‘The Reason I jump’ as a film or documentary does justice to all autistic people. Although I don’t have the impression that the director has any pretensions to turn this ‘participation’ into a ‘representation’.

What he does seem to want to show is the dizzying gap between the valuable experience of some autistic young adults and the image that their speaking environment has of them.

For the parents and other relatives of the people in the documentary, for example, autism is essentially a misfortune, an ‘evil fate’, a contrast to the life they live. This seems to be mainly due to their focus on spoken language as the only valuable means of communication. The various other forms of communication such as body language, sign language, electronic tools… are considered artificial.  

According to our society, anyone who does not share the fixation on spoken language as the only accepted form of communication must lack intellectual capacity and awareness. For example, Amrit Khurana, a young woman with great talent and a rich inner life, is portrayed as a dependent, immature child only because of her shortcomings and other form of communication.

The unworldliness of society is portrayed even more poignantly when you consider the vehement demand to see non-verbal communication such as facial expressions, gestures, and body language on an equal footing. Instead, their environment often presupposes what they think and want, only to bring those assumptions out as their voices.

It reminds me, among other things, of passages from the book ‘Ongehoord: about small interactions when words are not self-evident’ , selected by Dr. Leni Van Goidsenhoven. In this wonderful book, writers, artists, therapists, and remedial educationalists take the reader into their thinking about the theme ‘ alternative forms of communication’ and about what meeting and interaction means when words are not self-evident.

In ‘The Reason I Jump’, the autistic persons can, with the use of letter boards, arrive at a form of communication that also accepts their environment. This is not a panacea, but the help of the letter boards seems to change a lot.

“You can take classes for the first time,” says Emma Budway’s mother, who seems to believe that her child has only now acquired intelligence, as if she hadn’t been able to learn and experience before using this map. Another mother realizes she’s been preventing her autistic daughter from being herself for years, and challenges ancient Sierra Leone myths that autistic people are possessed by demons.

It is one of the few moments in the film in which the gap between autistic people and their environment seems to become less deep. While autistic people still live in the same world and are equally entitled to freedoms. This documentary is not only worth watching for that reason. It also offers a beautiful representation of the difficulty neurotypical people have in contacting people who do not have the same communication style and who live in a strange, unfamiliar culture whose rules and logic seem incomprehensible.

Overall, I had a positive feeling about this documentary. It is clearly aimed at the parents, family and people who frequently meet autistic people. Still, I think she can also provide a lot of insight to more verbal autistic people who often mistakenly attribute intellectual deficits to non-verbal autistic people. Care providers and therapists can also learn something from this documentary. They could identify with the parents of the main characters and wonder about the way they speak about autism.

Finally, it is important to have the right expectations before watching this documentary. The Reason I jump is clearly not a Hollywood-esque film adaptation, a love story between two autistic geniuses, or a biopic of a creative genius with autism. It is an indictment and a critical view on the ‘valid’ worldview, on what we consider ‘normal’ in our daily communication and society. It tries to portray the lives of autistic people who communicate in a way other than spoken language. People who would prefer to remain as they are. But even more, it exposes the gap between people with and without autism, between autistic people, but also the inability of non-autistic people to, despite their abilities.

9 tips to be good allies to autistic people

(c) The European Autist

Respect that someone calls themselves either autistic person/person autist or a person/person with autism. Then do not try to correct or correct that person with a terminological explanation. In both cases the use of words mainly says something about how the person concerned orients himself towards or associates with autism (spectrum disorder). A negative interpretation or context can cause problems in both ‘autistic’ or ‘with autism’. I would like to live in a world where every word that comes after “I am” or “I have” never creates negative frictions again. Leave it to people on social media to nitpick about this.

Listen to autistic people, and don’t fill in for them what you think they should mean. Listen as you listen to others, by giving your full attention to what they want to say, being aware of your assumptions, being open to their interpretation (however divergent it may be), and verbally following them.

Avoid making assumptions or estimates of the level of functioning with autism of who you address or talk about. Do not assume that someone is mild or (very) severe, high or low functioning, ‘pronounced’ or ‘subcutaneous’, self-reliant or self-reliant autistic. This is often a generalization and incorrect assessment (certainly as an outsider), and is done on the basis of external characteristics from a limited number of situations or experiences. It can lead to gross under- or overestimation and frustration or aggression on the part of the person you are talking about. Understand that any autistic person may experience a disability in one situation, appear ‘severely autistic’ in another, and exhibit nearly the same capabilities as others in yet another context.

Inform yourself as widely as possible about autism.Don’t limit yourself to either autistic authors or authors with a great deal of empathy and/or experience with autistic thinking and living together with autistic people.  Do not limit yourself to books, but watch a film or documentary, experience an artistic work of art by autistic artists or artists from the environment of an autistic person. Regularly listen to different autistic speakers and speakers who have a lot of experience and insight into autistic thinking and get in touch with autism ambassadors.

Regularly enter into a dialogue with the widest possible group of people with autism and people who live in their lives, especially those who do not immediately match your image or experience of autism and who do not communicate or live in the same way as you do. Also, don’t forget to enter into a dialogue with those who live with autistic people day and night, not because they give a voice to autistic people, but for their own experiences and experiential expertise.

Support organizations that are led by autistic persons or that significantly involve autistic persons in their activities. Get involved in their work or ask them how you can contribute to their project(s).

Try not to be ’empathetic’ with statements such as ‘we are all a bit autistic, aren’t we?’, ‘yes, the (autism) spectrum is broad’ or ‘your autism is not that bad’. Also, don’t make the unforgivable beginner mistake of telling someone with autism, “But you don’t look autistic at all.” Also, just assume someone has autism when they say so, and don’t wave it off. Don’t see it as an embarrassment, or a sign of some ‘Big Pharma’ conspiracy theory or ‘label mania’.

Don’t apologize to someone for their diagnosis. If someone tells you that he/she has a diagnosis of autism, or if a parent/grandparent or partner tells you that his/her child or partner has a diagnosis, never, ever say “that’s a shame” or “that’s sorry to hear’. It’s even better to say “congratulations,” although that may not always be appropriate either.

Be autism friendly and respect everyone’s difference. Be aware that in every environment where you live, work, live or spend your free time, there are autists who you work and communicate with you.  They may well experience those environments very differently than you do, and mostly have to put in a lot more effort to get the same thing done. Try to be concrete and clear about your expectations and your intentions, go along with his suggestions about what could be more pleasant or better, think about what you can do and don’t wait for someone to present their diagnosis.

The importance of Tumblr

One of the frequently asked questions on the microblogging platform Tumblr, is how I see Tumblr, how important it is for me personally and how I see platforms in general. In this short text I’ll try to answer those three questions.

A screenshot of a personal Tumblr collage

For me Tumblr enables me to build a kind of a museum in progress or a collection of what and who I think is beautiful or what motivates me to enjoy life. It’s quite easy to use, I think, and not too expensive. Of course, every platform or system has its flaws, weird rules, or limitations, and so does Tumblr.

I try to show there’s more to autistic blogging than just writing text on autism related topics

In contrast to the other social media I use, my Tumblr has only little to do with autism, or at least a first sight. With my Tumblr I try to show that there’s more than just writing text on autism related topics. Instead, I’d like to think my life consists of discovering all kinds of things, people, places, … that I dream of or dance within my head.

Tumblr is a great way to find inspiration and to be part of a community

How important is Tumblr to me? It’s a great way to have new input, and enjoy beauty in all its forms, and it lets me share things that are not possible on the other platforms, such as Facebook, Twitter, Pinterest, WordPress or Medium. It also gives inspiration and stimulates me to write on other topics than I immediately think of. I also get questions in my private box, though much less than on other platforms, for advice or information on certain autism-related topics. And Tumblr is of course also a community of people I find myself related to in a way.

Finally, Tumblr is a part of the Tistje ‘sphere’, and it is one of the platforms I like to experiment with to share information, joy, inspiration of others and of myself, or to report of my pilgrimage to a way of life that is compatible with autistic living as well as living in this hypermodern (somewhat conservative) society of ours.

How do autistics deal with eroticism?

Photo by Deon Black on Unsplash

One of my contacts on Tumblr, asks me how autistic people deal with the spectrum of eroticism on social and other media from the soft beginnings to more edgier expressions without becoming puritan nor pervert. This honest answer is written without much experience on the subject but with so much more zest.

First, autistic people differ a lot, there is a vast spectrum of different emotionally and sexually developed people. I am certainly not a specialist in autism, nor do I know so many autistic people that I can say something about the group. What I can do, is write about my experiences, and about those people who I know well (because I’ve spent a lot of time with them online or offline).

Eroticism is not a topic much talked about, it’s one of those topics that are taboo. Some, with or without autism, even get anxious if I begin talking about what’s called ‘adult entertainment’. I think they are a bit scared or even anxious to do something wrong, to be punished because of breaking rules or doing something illegal.

Most autistic people have a tendency to be scared or even anxious to be punished because of, unintended, breaking rules or doing something illegal

Some are also scared of being overstimulated of the view of erotic beauty (or ugliness), or what they haven’t yet experienced or have had bad experiences with, a lot of autistic people (especially women) have been (sexually or otherwise) harmed in their life. Some autistic people also have not developed to maturity as to sexuality or are uneven developed as to their body and mind.

A minority of the autistic people I know, on the other hand, are very fond of eroticism, like they are fond of edgier media. That consist mostly of collecting erotic pictures, movies, and all kinds of ‘things’, mostly neatly organized.

Some are searching for a group to belong to, others are enjoying the aesthetics of the body or search for a way of releasing the pressure of everyday life. Some, but not many of them share their collection on social media. There is of course the danger, like with all other things in life, that they get into trouble because they don’t know their boundaries, when en where to stop, and what really is forbidden.

There’s nothing wrong with eroticism provided that you realize that most men and women in real life, as well as their behavior, is different than what’s shown on erotic pictures and in movies.

To me eroticism is generally something that enriches my life. There’s nothing wrong with that when you also know that men and women in real life are different than what’s shown in pictures and in movies.

During my higher education years, I discovered eroticism and all the varieties up to soft and hard porn. At first, I didn’t know what to think of it, but I’ve never really been shocked or disgusted.

Autistic people are no perverts nor puritans

Of course, a lot of how autistic people deal with it, has to do with their life, their education, the way their friends think about this and how they see their own body and mind.

Autistic people are no perverts nor puritans, and most are something in between, or perhaps something of both (all depending on your view on both terms), but they are most of all people of flesh and blood, with a very vivid and sometimes somewhat naughty imagination.

Writing in English

Writing a text about my feelings, thoughts, ideas in a foreign language is tricky.  Somehow I have to simplify what I mean. So that’s why I only write in Dutch, the language in which I grew up. Although I have had many years of education in English. Still it remains difficult to express exactly what I am trying to say.

Furthermore, I am a bit afraid to make stupid mistakes. English is rather difficult to write in. Especially if I want my text to be more than a series of online quotes put together. Or something like the texts and talks of non-native speaking politicians and entrepreneurs abroad. But then, why  not give it a try? If everyone else fails to write well, I shouldn’t bother to make huge errors. It is, after all, a free world, and writing without errors is so unfashionable.

There is, of course, a lot to write about. On what autism exactly means to me. On behavioral and communicational challenges I experience every day. On sensory and social skill issues I’ve been trying to solve. I could try to write on the question of the cause(s) of autism.

Or how I could help a parent cope with their childs autism diagnosis. Although I would leave that to those who have more first-hand experience.  Then I would rather write on dealing with spousal and other relationships. Or how to begin if someone you know has been diagnosed with autism. In that case I would emphasize some typical areas of strengths.

Writing my blog in English, I would stay away from certain topics. Like methodologies and treatments for autism for example. I don’t want to be like the many wannabe autism-experts that write blogs on that. Besides, there are so many of them, some backed by more research than others. Not to mention the more alternative interventions like swimming with dolphins and irlen lenses. Only the thought of having to swimming makes me agressive.

Yes, I could write about my weaknesses and my strengths, and linking them. Or on the many attempts to adjust my attitude, on the family dynamics, my early learning and teen years. And on thinking what the future will bring. But who wouldn’t that be too self-centered, or, like some say, too over-intellectual? So, unfortunately for you perhaps, I’ll stick to Dutch and leave the rest to native speakers and writers. Better safe than sorry.

How about autistic happiness?

Some of the more popular books that are published on autism, are about recovery. Not about acceptance or social inclusion, but about stimulating children, youngsters and adults, yes even elderly people with autism to outgrow their autism, or, if you like, loose their autistic symptoms. So that they can appear, from the outside, normal. Normal as in the same as everyone else. Unremarkable, not different, and not distressing. Eye contact, non-verbal and verbal communication, interactive attention span, flexibility … this is what is sometimes called the fundamental four. Not wellbeing or happiness, not feeling good in body and mind … although I find this far more important. Surely surviving economically and socially or trying to live as independent as possible is important, but what does it mean to be able to manage if he or she is on the verge of suïcide or euthanasia? Perhaps because no looked at what he or she made ‘autistically’ happy, what went well and what gave them joy.