Sick and tired

"I'm sick and tired of always being sick and tired." This is what Anastacia sang in her song Sick and Tired and this is how I feel.

My whole life has been a fight for getting the help that I need. As most of you know, recently I've finally gotten the funding to get that help. I've already got some coaching, but I need more intensive help. This would come in the shape of a training for people with autism to learn to live on my own. I'd get my own room and there would be a shared living space with some other people with autism.

I've gotten a lot of information on the methods of this training, and it would've been perfect for me! We would start at the end of October.

You're probably wondering (if I haven't told you personally yet) why I'm talking in the past tense. Well, it might still happen somewhere in the future, but for now it's not. Some things, beyond the foundation's power, have happened that have caused them to postpone everything until the papers for the new location, where I would've ended up, are cleared. They have no idea when this will be, or if it will be at all. They have assured me, though, that if they can't make it happen, they'll look for another location.

This is all fine and dandy, and I'm very happy with them doing everything they can and with my current coach, but in the meanwhile I'm still not getting the full amount of help I need. Also, I've been granted the funding for three years, of which one is already almost over now. I hope I'll be able to be granted more time...

I'm not really angry at someone in particular, as these things are nobody's fault in particular. It's all due to certain unexpected circumstances. I am angry at the situation I'm being put in though. But how does one yell at a situation?

So all I got is a coach to keep things together and to wait while being sick and tired. And I'm just so sick and tired of always being sick and tired...

When special needs clash

Most of the time I love to be around other people with autism, or similar diagnosis's. Because we all have special needs, often very similar ones, we understand each other. You can often count on people who are going through similar things, to understand your needs and not judge you for it.

It also works the other way around. I can relate to the special needs other people might have and won't easily judge them for it, as I know what it's like. I'll often quickly recognise what is wrong and what needs to be changed to make it better for someone with sensory difficulties, for example, because I have sensory difficulties myself.

However, sometimes there's a downside to this. Sometimes special needs clash. This can work in multiple ways. The first is when you have the same special need at the same time and need someone else to help. For example, when both me and someone else are paralysed by an overload of sound, then who's going to lead us away from the sound, or turn the sound off? We'll both be stuck, not able to help each other. This is a mild clash. You can also both be stuck in a strong emotion, with nobody to stop you. This can escalate quickly. However, if you look back on it, you'll probably know what happened and make up.

There's a larger clash though, that I find harder to work with. What if the other person needs something that is actually something that you can't cope with at all? For example, some people thrive in not having every step spelled out for them. They love to take life as it comes. This may lead to some risks, like forgetting to get some accommodations, like transport to wherever to need to go, having to think of something on the spot. There are people who like to live that way. It makes them feel alive.

However, if you're anything like me, this will stress you out to no end. If you're a person who needs to know as much as possible beforehand, being with such a loose person can be stressful. This counts for everyone, special needs or no special needs. But if you have a type of autism that makes it extra necessary to know as much as possible, then it won't just be frustrating to be with a free spirited person, but it will almost be impossible.

If the other person has another disability, let's say ADHD, which makes it very hard to live life very organised, then it's almost impossible for that person to live with the person who needs everything to be structured.

Don't get me wrong. I'm not saying people with autism and people with ADHD can't be friends. In fact, there are a lot of people who have autism and ADHD combined. This all depends on your needs with your specific disability.

But these things can potentially make it very hard to live together.

One time I was at an autism information market, where people with autism were allowed to showcase their talents. There was a person with autism and hyposensitivity (being less sensitive to sensory input, instead of more), who had a drumming talent. He was great at the drums and very eager to show it off. This was a problem for a lot of us with sensory difficulties. We had to protest to this, as it would drive about half of the visitors out of the building.

I felt very sad and conflicted over this. I mean, this person with autism had as much a right to be there and showcase their kind of autism and their talent, as much as the others right? But on the other hand, do we want to scare away half of the building for one person?

I understood this person and his needs, but I also knew that this would be too much for me and a lot of other people there.

This is where disabilities can sometimes clash. Someone may need a lot of stimulation, where the other would suffer from that same amount of stimulation.

A situation like that can lead to some heartbreaking moments. Who's needs do you choose at that moment? Do you need to avoid each other? Is friendship, being colleagues, or even being in the same room, even possible? What do you say to someone when you really understand their needs, but their needs are disastrous to you? And what does that person say back to you?

I've been thinking about this for a while now, as I've ran into this problem numerous times, especially within my line of volunteering work.

Fitting in a group

Recently I've gone to the training that I've spoken about. It was a training of two long (7 hours. That was way too much for me!) days, about how to best put your experience in your field to good use. I've learned some nice things in this training, that certainly helped me grow in my volunteering work.

On the other hand I've had a lot of struggles with this training. First of all, like I already stated, the days were too long. I couldn't cope with that, because of my chronic fatigue. This also made it even harder than usual to get along in the group. The trainers chose to go for a very loose training style, where everyone could chip in with their own ideas. When I asked for how long we got and how much they really wanted to know about my experiences, they said: "Anything you contribute is fine."

I tried explaining to them why I can't handle not having some clear perimeters, and if they didn't set out those perimeters, that I'd just interrupt them at any time and not know when to stop talking, which would be very annoying for them, and cost a lot of energy for me.

They kept saying: "Don't worry. Anything you contribute is fine."

I took those words to heart, so when they asked what we thought could be some tasks for an experience expert, I asked "Oh well, I've already done some things as an experience expert and I've done some research, so is it ok if I chip in here?" They said "By all means!" so I told them about some tasks that I knew about. Until I got interrupted by someone saying "Sorry, but... Could you please let someone else talk for once?"

I'm okay with someone telling me that I'm talking too much, since I know that I have difficulties finding the boundaries. What I dislike is someone telling me over and over again that anything I contribute is fine, even after I explained what the consequences could be, and THEN not just being pointed out in a nice way that I talk to much, but actually asking me if I could let someone else talk for once. That almost seems like I'm being rude and doing it on purpose to me! This truly hurt my feelings. I felt like I was as clear as I could be about my disability and the need for perimeters, and it still wasn't good enough. The rest of the day I hardly dared to say anything, out of fear of saying too much again. All I was doing was putting all my energy in navigating the unspoken social cues, making me miss a lot of what the training was actually about.

At the end of the training everyone walked away and I ended up in tears. I was absolutely exhausted, felt alienated and felt like I wasted my time and precious energy.

The person who was sitting next to me during the training also had Asperger's and understood what was going on. She stuck around to comfort me. The two people leading the training came up to me to talk to me.

I told them what had gotten me into tears. They said they understood and that when things would get too much to me next time, I could just leave the room. This didn't have the effect they hoped it would have. I didn't feel understood at all! I simply needed a teaching style with a clearer direction and clearer questions, so that I would know what was expected from me. Also, I wasn't the only one with this problem, just the only one with such a strong reaction, so the change wouldn't just be for me. In fact, there were just two people for who this loose teaching style really worked.

Rather than having someone walk away when the teaching style isn't fitting, especially when that person isn't the only one with that problem, please find a way that that person can join the group too! Of course, this isn't possible for everyone, in every situation, but I'm just asking for some more clarity, and it's not for just me. That's not a lot, is it? Also, we had a small classroom of about twelve people (I'm guessing here, I didn't count), so there's room for a bit more personalised teaching style.

But because there were no clear perimeters, I kept being busy with trying to navigate the social cues. This took all my energy, but it was also very clear to the group that I couldn't cope. In fact, because I was talking so much, I came across as arrogant, instead of helping. But when someone tells me everything I contribute is fine, and they want an answer to something I feel like I have an answer to, I don't feel arrogant when I answer. I feel like I'm helping. Isn't it bad of me to not answer when they want people to contribute? Aren't I helping by sharing my knowledge? I'd like the rest of the room to do the same! I can learn a lot from them too! But they don't seem to see those good intentions. They just don't want to put up boundaries, but want me to know... telepathically I guess... when and how to answer. If I don't, I'm arrogant (saying too much) or distant (not saying enough).

I told the trainers this, but they had a hard time seeing how, giving me time to walk away from the classroom, wasn't inclusion. Even when I told them that would mean I would be gone most of the time, not bonding with the group and missing a lot of information. They said I could just ask the group later what I missed.

The person with Asperger's, who was sitting next to me, came to my defence at this point. She told them she agreed with me that this wasn't inclusion and how much something like this can hurt a person.

The trainers said they would try to change some things and "I guess I'll better my life?"

Now, I have to say... They did make some changes the next day of training. They had a clear program and adopted a more clear style of asking questions. This helped a lot and I thanked them for it. They were happy about it, although one of them still had to make clear to me how difficult it was for her to do that...

Why did I write about this? Did I want to make you angry at the trainers? No, not at all. The trainers honestly didn't know what they were doing and that's why there are experience experts.

I'm writing about this, because this is just one example of why socialising in a group can go very wrong for a person with autism sometimes. This especially tends to happen in classrooms, where people with autism have to try to navigate unspoken social cues. Because these unspoken social cues are very unclear, the person with autism might have an unfitting response. This easily gets misinterpreted, isolating this person from the group. If this is being spoken about and there's an unwillingness to put in a little bit of effort, or the person is even being told to 'just walk away', then the isolation just gets bigger and the misunderstandings have not been solved. This, sometimes, can even lead to anger and bullying.

A little bit of understanding, and better yet, practical help, can often prevent a lot and make life a lot easier.

Squease pressure vest review update

A while ago I started using the Squease pressure vest. To read about what it is and what my first experiences were, click here: Squease Pressure Vest

By now I've had a lot of chances to try the vest and to give an update about what my experiences are. I've had some bad and some good experiences, but in general I'm very positive. I can recommend the vest if you're experiencing sensory difficulties. I do have to say that my experiences are my experiences alone. I've seen other people respond differently to the pressure vest. If you want to be sure if it works for you personally, then I'd recommend requesting a try-out period. You'll have to pay a bit for hiring the vest, but it's not that much and if you want to keep the pressure vest, they deduct that money from the overall costs.

Be sure to try the vest while you're experiencing sensory difficulties in that time. I have personally not felt much difference when I was already relaxed, and some other people have reported the same. So don't judge it yet while you're already in a relaxed state.

First I want to begin with the difficulties that I experienced and then I'll head to the positive things, so that we can end this blogpost positively.

Like I said, the vest does work for me and helps me calm down. The only problem is, when I use the vest within a group of people, I find it hard not to calm down so much that I shut myself down from the group. I find it hard to find a balance.

I have asthma, which sometimes causes me to hyperventilate. Especially when I'm stressed. When I hyperventilate, I breathe from the chest (think about how you breathe after you've ran a lot. It's a little bit like that). When I have sensory issues, I tend to get stressed too. So when I'm stressed out from sensory issues, I'd like to use the vest to reduce the stress. But when my asthma is also acting up, the vest just makes it harder to breathe. Of course I have asthma medications, but those won't help while I'm still dealing with the sensory issues (= stress). So in these cases it's hard, and sometimes impossible, to use the vest. I'll have to find another way to deal with the sensory issues then.

Someone I know, who also has asthma and sensory difficulties, tried the vest and told me she experienced the same problems.

Sometimes I don't expect sensory difficulties somewhere. For example, when I'm going to my therapist. In those cases I usually don't bring the Squease vest. But sometimes there are unexpected sensory difficulties, like road workers on the way to the therapist or things like that. But because of my asthma, I'd rather not wear the vest all the time, even when deflated. It's hard to decide when to bring it and when not to.

POSITIVES:

I have taken the vest to several places where I expected sensory difficulties now. In these places, the vest has helped me tremendously. It was like being wrapped by a plushie calming me down the whole time. This helped me concentrate during, for example, talking with someone in a big group of people. It raised my tolerance for certain sensory issues.

Of course, the vest can't drown out big sensory issues like a disco and things like that, but when it did help me, was when something like that happened, I got myself to a sensory issue free place, and I was still in overload. If I then put on the vest, it helped me get passed the overload a lot faster. It was a similar effect to when my mother holds me when I'm crying or something like that. It was very soothing.

Another positive thing is the fact that the pressure vest is very easy to cover up. The vest is made in such a way that it's easy to wear it under a normal vest or a sweater. "But what about when it's warm?" Well, yes, then it's very hard to cover it up. I have to say though that the pressure vest is very light and thin, so it won't be too warm. Also, even when people saw me wearing it, most people just thought it looked pretty cool.

Okay, so maybe the vest doesn't work in every situation. Is there really something that does help with everything in this world? That would be amazing, but no, it doesn't exist. But in a lot of situations it does work and it can make life a lot easier and I think that's worth it. When I need it, the vest is there. It makes me a lot more self-reliant and capable of coping with a lot more situations. If you're having a lot of sensory difficulties, I can recommend the Squease pressure vest.

The future is bright and scary

First of all the VERY good news: I got the funding for the guidance that I need! I can hardly believe it. All my life I have had to fight to get the proper help, because from the outside I seem like I can handle everything just fine, while on the inside I had to fight to the point of falling apart. Now I can finally get the support I need. I'm so happy!

Of course, this means that some new (new... different... scary...) things have been set in motion. I got a coach who supports me in a lot of different areas in my life. There have been two appointments so far. We're trying to have one appointment each week for now and we'll see where we'll end up. I'm curious to see what will come out of this.

The place that I have found, where I can get training for living on my own, is still being build. They expect it to be done somewhere between September and December. I'm one of the first people on the waiting list, so when the building is done, I can immediately move in! That's fast, isn't it? I'm very excited about this! But, of course, this is a very big change in a small amount of time, which means it is scary as hell. I have never moved to a different living place before, so this isn't just a big change, but it's also something new. I have no idea what to expect and am very scared. It's a good change though. I hope this will help me on my way to independence and some structured living (= peace of mind).

I also got someone to help me manage the funding for the guidance. I'll be meeting him in two days.

So, those are the first changes that have been made by using the funding that I received. It's all for the better and I'm very excited! At the same time I'm very scared. There are a lot of mixed emotions.

As for my volunteering work as an autism experience expert: I've promoted the usage of experience experts of different kinds towards some coaches and I've helped out at a symposium. I've also gone to a one day training to improve my presentation skills. This was a lot of fun! After that I haven't done anything for a month, but that's partly because there simply wasn't much to do and partly because I've been very busy with starting up this whole guidance thing. Soon I'll be starting a (longer) training to help me make better use of my knowledge in the field. I'm always striving to do better!

Differences in experience

Imagine two mice. One wants to get a bit of cheese and gets electric shocks when it gets the cheese. The other mouse gets injected a nice adrenaline rush when it gets the cheese.

If you were mouse number 1, you wouldn't want to get the electric shocks. If this goes on for too long, you'd decide that cheese is a bad thing, because when you get cheese, you get shocked.

However: If the shocks wouldn't happen anymore after just a few times, you'd learn that you don't like the shocks, but that you do like cheese. Cheese without the shocks please!

Now imagine you're mouse number 2. You get the cheese and then you get the adrenaline rush. Great! You get more cheese and get more adrenaline. If this goes on long enough, you'd learn that cheese is a good thing, because it gives you a rush.

However: If the adrenaline rush wouldn't happen anymore after just a few times, you'd be disappointed and confused. Without the rush, the cheese isn't that special anymore. You have learned that cheese isn't that special, but the rush is. You would try to find the adrenaline rush somewhere else.

Both mice are of the same species, with the same needs. Yet they give a different meaning to the cheese, because they experience the consequences of getting the cheese differently. By extension they give a different value to the cheese all together.

I want to show you that when someone experiences something differently, that person will also give a different meaning to something.

If you want to make the first mouse enjoy the cheese, you have to take away the applying of the shocks very quickly. Then the meaning the mouse gives the cheese would be right: Cheese is nice, shocks aren't.

The second mouse would like to keep the added consequence. It was an improvement for it, because of the different experience.

Because of this, it isn't fair to force people, who process information in a very different way, in regular structures. Something that can be a nice experience to one person, can be a very painful experience for a person with a very different way of processing information. When nobody sees the cause and nobody adapts the structure for this person, this person will learn that the activity is something to avoid. Even when the end result of the activity has the potential to be very positive.

If the painful part in the structure was removed, then the person would've had the intended experience.

An example of what I mean can be found in real life. When there's a concert, they tend to add a loud bass to the music, as to strengthen the impact. For a lot of people this helps to add to the rush of the moment and completely enjoy the music.

However, if you're much more sensitive to sound, the added bass probably won't be enjoyable, but absolutely painful:

People who experience the bass as painful, will most likely walk away from the concert. The people who love the bass, will like the concert even more.

If you took the bass away, the people who are sensitive to sound will probably be able to enjoy the music too. The people who love the bass, however, will think the concert is boring and walk away.

Because of this reason, it's very harmful if you force a person with a big difference in information processing in the regular structures.

Disclaimer: Yes, I realise that everyone processes information differently and that forcing someone to do something harmful is always bad. But most people, in general, can find their way in regular structures (there are exceptions). I'm talking about people with big differences in processing information, that cause them to not be able to get along with regular structures anymore. (for example: A person with autism who might find it hard to get a job, because there is too much sensory input)

Social confusion

In my daily life I often run into, what I call, social confusion. Social confusion usually happens when there's a subtext and/or non-verbal communication going on that the other person just expects me to pick up on, but I'm completely oblivious to it. Then that person responds to me not responding to something I didn't even know was there. So to me, that response comes out of nowhere and I'm socially confused, because I have no idea what just happened to cause that response.

A few days ago something so very confusing happened, that it left me confused all day long and even my sister didn't get what was going on. Because this is a situation that's even confusing for people without autism, I thought it would make a great example of what social confusion can look like.

My sister and I were walking around in a supermarket. There was a lady at the supermarket who gave out samples of a new type of pizza. Since we were planning on eating pizza that evening, meaning one of the things we were going to buy was pizza, this was perfect timing and I decided to try some of that pizza. There were two new kinds. One had tuna, scampi, salmon and spinach. The other one just had tuna and spinach.

I walked up to the lady and looked at her, ready to ask if I could sample one of the pizzas. She read the look on my face before I could say something and said I could just take one. I took a slice of pizza and happily took a few bites. I told my sister and the lady that I liked the pizza. The woman said: "Yeah, that's my fault," continued to say some more things that both my sister and I couldn't understand (she spoke very fast and soft), and then took the pizza out of my hands, threw it away and gave me a new one. I have no idea what happened here, but later my sister and I thought she probably misheard me and thought I didn't like the pizza.

With a new pizza in hand, I already got kind of confused, but decided that it doesn't matter, as I still had a pizza. I took two more bites, said I liked the pizza again, and then the lady took my pizza again, threw it away again and gave me a new one. This time she gave me another type of fish-pizza. After taking yet another two bites, I said I liked the pizza again. Then my sister and I got confused over which of the pizzas I just got and asked her. She took my pizza again, threw it out, and gave me a new one. I started to wonder if this was a prank and if there were some hidden cameras somewhere.

Absolutely thrown back by this whole 'taking two bites, taking the pizza away, throwing it out, getting a new pizza' routine, I stopped discussing the pizzas. Even my sister looked at me with a look of 'I don't know either'. I took another two bites, didn't even go on to eat more of it, and simply said I wanted to buy that pizza. I liked all the pizzas, so I didn't even bother to ask which one was which. She gave me the pizza I just sampled, my sister and I thanked her and then we walked out completely confused.

We couldn't get over this for the rest of the day. The situation was so absurd, that we kept on laughing, being confused and wondering: "What just happened?!"

Like I said, this situation would confuse a lot of people without autism too. But this IS what a conversation feels like for me a lot of times. A lot of communication is non-verbal and I'm very bad at picking up non-verbal communication, which means that I'm missing out on a lot of things in a conversation. Sometimes people expect a response from the non-verbal communication, but if I'm not picking up on that, then obviously I won't respond to it either. Because non-verbal communication goes so instinctively for most people, it's very frustrating for a lot of people if I don't pick up on it. It even comes across as me not caring about them sometimes, which is a big misconception. I do care, I just didn't even know something was going on.

In my example this woman said some things that I missed and reacted on it even before I could ask her what she said. She then continued doing things that made a lot of sense to her, but not to my sister and me. This is what it feels like when I miss out on non-verbal communication, which the other person expected me to pick up on. Because I missed out on a piece of information, to me they suddenly appear to act very weirdly, while to them it seems to make total sense. This can sometimes lead to very awkward situations, or even very angry people.