Our world is not ready for autism yet..

Yesterday, I had this horrible thing happening to me again and it went way quicker than expected. I’ve already felt that the pressure was becoming too much, when my brain started to scream “STOP” towards me, but also to the people around me. It was a truly embarrassing situation, which I had been pushed into!

To avoid over-stimulation and early fatigue, I pre-order every week 2 * 6 liters of biological 3.5% fat milk, because their brand is one of the only ones, which does not turn my stomach and intestinal system into a full war-zone. As many people with autism, I got a condition in my intestinal system. Also, I was quite sick for over a week, with fever and heavy medicines, because of an urinary tract problem, making my left nut being bigger than the size of a Dinosaur-egg! That pain is indescribably high.

Ordering goods to avoid over-stimulation..

I order this weekly in advance, especially to keep the visit at the supermarket at it’s lowest (and latest!) time as possible. This pro-active attempt is to prevent over-stimulation to happen.It has been like this for almost over a year and I have never had a better shopping experience like this.

This way, I am not getting over-stimulated by all the noise around of beeping cashiers, yelling children, intercom calls, telephones going off, crackling bags, falling glass, people standing in the way with their carts, rambling change, people yelling over the phones and so much more. This way, I can focus upon what I need, without forgetting essential goods, without crashing out on over-stimulation and it works marvelously, well mostly, till today, for example …

But, when the order goes wrong..

Past Friday, the lady who helps me with my structural needs at home, went to the local supermarket, Albert Heijn, to get my weekly ordered milk. Instead of giving the right milk with the lady, they gave her 6 bottles of the wrong type of milk. Biological semi-skimmed milk, which does still bring war inside my intestinal system, giving me diarrhea from hell.

After the weekend, I called Albert Heijn immediately to ask this to be fixed, to exchange the semi-skimmed milk towards the usual ordeal. This was no problem at all, I just had to go to the counter, in order to get it changed.

But, Oh boy, did it went wrong there..

How did this procedure happened before?

Usually, when an order gets delivered wrongly, the staff them-self ask me to go to to the counter immediately with my remaining shopping articles, to subtract the return-price from the total amount. That way, I can pay the rest by card, without having all kinds of loose change in my pockets to worry about.

This has happened five times before, whereof I’ve asked myself the last 2x for that same procedure (subtract the refund from the total) to happen, without any problems at all..

Which agreement was made this time? .. The same!

Because I had to take the 6 bottles of semi-skimmed milk into the shop myself, towards the stocking-room, I’ve asked pro-actively to the blonde lady behind the counter, if I could like again before, first get the rest of my shopping supplies, so the remaining amount could be subtracted from the main bill, so I do not have to run away with loose change in my pants (which I would loose faster anyways, than that I can spell supercalifragilistiexpialidocious).

The blonde lady said it was OK, she kept the money and the ticket aside and said to go inside to go switch the milk and get my other groceries. I go to the stock-room, ask to switch the milk and verify quickly again with the team-leader if it was REALLY OK (while pointing to my cart with 7 small products in it) to go to the front counter with it, to pay my groceries with the subtracted refund, of the bad-delivery subtracted from it.

Yeah, that’s all fine, was the answer.

My question to verify again has some background information, which I will explain soon.

The pain already started to kick in while I was walking to the counter, my entire kidney area was nagging me with pains, like there was no tomorrow, but, I had to change the milk myself inside the shop, while sick, because I had no help till that next Friday. At that moment, the fresh milk would have been expired and not-refundable.

I have already taken *a lot* of painkilling medication, to be able to do this and had no extra painkilling medication with me. I usually don’t even take painkillers.

Again, at the counter…

The lady at the counter says dryly she cannot help me. I had to go back into the store and go to the cashier, pay there by card and get the cash afterwards at the front desk.

To my disbelief, I’ve asked her if she really understood her own logic.

I responded: “First I ask especially here at this same counter with you, to be able to leave the refund here and pay the remaining articles, to subtract the refund from the total amount. At that moment it was OK and now suddenly you change procedures on the fly, while I am already in pain to change the wrongly delivered goods?”

I got as respond: “yes, these are the rules”. I’ve asked immediately: “Can I talk to the shop responsible person? Because the pain is getting me too much now!”, because I felt “it” coming up, getting annoyed, stressed, hyper-active and agitated, together with the nagging pain.

“No, I am the responsible person, these are the rules, you go inside now!” was the final answer. I replied with: “How can you be responsible if you change your own agreements on the spot? How do you find this logical that I have to go inside the shop now, pay by card and get the change here afterwards, while this was going to be subtracted from the total amount?!” but she ignored me totally and urged other customers to be helped by her.

I went again inside the shop and crashed straight towards a meltdown…

So, I went into the shop again, while the pain was dominating my mind. My mind was raging! All the beeps, the sounds, the overwhelming noise, the pressure, I could not escape because I would loose my money again then and about 2 minutes later, at the cashier desk, I started to crash. I smashed the shopping basket against the floor, because I was in total pain and immediately called the telephone number of the shop itself, saying in total stress, while crashing, in chaotic sentences, that I am tired of being treated like this and that I want to run away.

I’ve explained that first two people (including the lady herself behind the counter!) tells me that it is OK to subtract the refund from the bad delivery from my total amount of shopping goods. There were 7 pieces extra in the basket, while now, I had to go through this again, and still to end up with the loose change!

I’ve also explained over the phone that I was crashing totally and that I am sorry to have smashed the cart against the ground, because, I was dragged entirely over my own limits! I started to hyper-ventilate, get more anxious and could not form any decent sentence anymore, because I was crashing towards an autistic meltdown.

This was the first time that I have ever smashed another property against the floor. Well smash, rather said “hard-handed put against the floor”. Apparently, when I think more lucid about this, I must have been pushed very far over my limits.. which I could not take anymore.

It escalated badly, I was crashing into a meltdown, again :(

The (true!) responsible person of the shop did settle the situation quietly and with respect, while cleaning the yogurt which have been damaged, when the cart hit the ground. I have said multiple times sorry for what happened, since I am never violent like that. I have also offered to clean the yogurt from the floor, which was friendly denied.

At that moment, I could not remember the pin-code of my bankcard, my name, my address, anything anymore. It was going entirely wrong in my head, I could not remember anything anymore, while the shop owner did everything to easen the process.

I took 2 tablets of Alprazolam on the spot, especially to relax and try to get my mind back. I also tried calling two people to help me getting home, but they were unavailable, so I had posted to Facebook: “Need help at 2060 Antwerpen Albert Heijn – in meltdown”. One of them called me back, I explained the situation that I could not remember anything anymore and he said he was going to be there within 30 minutes

Eventually, I found back my pin-code and paid with it, after having 2 times the message on the terminal that the pin-code was incorrect.The shop owner went inside the shop again.  but, I could not figure out what the next step was to do, how to get home, where I lived, how I had to go there?

And there it was, the meltdown I was especially NOT waiting for!..

I was getting into a total meltdown and all the noises were beating in my head as the chaos ensued. I could not think anymore. I was crashing.

I’ve asked the blond lady behind the counter if there was a silent place I could stay at for a moment, to be able to get some silence, because of autism. She replied (again, very dry) that was not possible and that I had to sit in the parking.

I went to the parking area, but the noises did not stop. It was also very cold sitting on the floor.I tried covering my ears while having my hoody on, while a man stamped with his shoe against my leg while yelling to me “filthy junk, go somewhere else!”. However, not the first time this happened, when I isolate myself from a crowd..

At that moment, it was getting worse. I called again to the shop. The telephone got picked up, but was immediately put on-hook again. I called again and had the shop-owner on the line. I explained her that I was in a meltdown and needed a quiet place to get back to my senses for a moment, while the parking spot was definitely not the right spot, because it was cold and people treat me like shit.

The shop owner offered me to go back inside and go sit in the package storage room.

I took another Alprazolam and rested at that place with my hoody on, till the friend picked me up. At that moment, I was saved and being able to go back to my own trusted home.

Which position does that put me into?

Into a very awkward and embarrassing position, to say the least. As known by many, people need rigid procedures and scripts in order to be able to function in daily society. Once procedures get changed, unexpectedly, from one-side, the stress gets real.

I have rigid procedures set up, to ASK every week at the people doing my order, to let the order please be right for the coming week, especially because some orders went bad (various times) before. This happens especially in holiday-periods. This verification routine gives however less stress, than having to shop in a full shop while being over-stimulated to hell. The handling of this has however went bad in the past, which I have not complained about, till yesterday.

Now, it went extremely bad, because there as totally no logical understanding of (the one-sided change of) agreements made by that same person. I was (and still am at the time of writing) still in a lot of pain.

The order went wrong, mistakes can happen, but that way of handling? …

Solutions are only working, if there is at-least some understanding. Understanding from people to understand why I tend to grasp towards such kinds of procedures. Even to the bitter end, I could not find any empathy from this person to help me out towards a place of silence, by something she caused at start, so I just went to the parking, beaten in my mind.

Does this always happen?

Oh, thank-god, no. This does not happen frequently. Most people working at this supermarket, especially the “higher” staff-members are extremely friendly and caring. I cannot complain at all, about the respect and time they dedicate towards their customers. I even got to be honest, the quality and service only went better when they transformed their old supermarket towards Albert Heijn.

But some people, like two ladies working there, sometimes break all that effort of the good into a bad situation. I think, these two should at-least start to learn how to communicate with customers and their needs, without putting their position of control in the equation.

That “position of control” was already an issue at the previous supermarket of these two ladies, making me to do everything to avoid having contact with these two people, which is sometimes unavoidable, or, it would costs me money like it happened to me several times before! At those times, I have chosen to throw away the money, to avoid the stress.

I surely hope, the management will think twice about who to put where, since having somebody behind the general counter continuously answering with “no, that is not possible”, while having earlier approvement from the management, is totally not customer-friendly or PR-friendly, at all!

What did I learn from this?

Frankly, I do not know how to optimize this procedure of shopping, without loosing my mind. I have an already working solution which works most of the times. The problem arises, when there are people which use their “position of control” to order others around without any logic, without understanding the consequences or impact on the daily life of someone with autism.

Like most people with autism, I am mostly secure when I know a procedure is in place.

When unexpected acts happen like this, things get haywire. This is a classical example, where a person is not thinking at all about how their behavior affects towards the consequences it has to their fellow human…

I wanted to run away, the way of treatment, so many decisions, the noise, the pressure to have to stay, the thoughts, the fear of having to stay where I didn’t want to be anymore ..

That is, why I say the next …

I am sorry!

I am sorry, I am pro-actively trying not to bother anyone with my condition.

I am sorry, I am trying to pretend to be as normal as possible.

I am sorry, for when it goes wrong when people don’t keep their own agreements.

I am sorry, but I try to be as human as possible.

I am sorry, for being different.

I am sorry, for saying:

this world is definitely not ready for people with autism yet…

Nota Bene: This article has not been checked for grammatical mistakes yet.