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autism Archieven - Page 2 of 2 - Being Atypical

Getting Proper Sleep: Sleep Mask

Since I am having quite some sensory issues, which become worse when I don’t sleep properly, it is very important to get a good night of sleep.

Sleeping can be quite a challenge, especially when living in a big city (I live in the capital of my country), which never really sleeps. Although I do no live in the busiest part of the city (thank god!), I do live in a part of our country where there is a lot of light pollution. It never gets really dark here, which is a real pity… and, a sensory input I would rather get rid of.

So I started looking for a good, portable solution. A sleep mask seemed to be the solution, but most sleep masks are just horrible: they put pressure on your eyes and replace your original problem (light) with a new one (pressure).

After doing some online research, I found a sleep mask that had a lot of positive reviews, the sleep mask of Tempur. I decided to buy one, desperate for some ‘darkness’ in my life. 🙂

I must say, it worked out well. I absolutely love this sleep mask. It is soft, really blocks out light, and does not put any pressure on my eyes. I sleep with it every night now, without pulling it off while I am sleeping.

I can also recommend using it when you need some time to calm the senses after being sensory overloaded (just lie down on your bed with the mask on) or when having a migraine (ditto)!

Want one of your own?

Get it @ Amazon!

Or @ Bol.com

Note: I bought this item myself.

Autism Specialists: Where Are They?

As soon as I got a suspicion I might have autism, I read up on it as much as possible. I was surprised, and also delighted, to learn so many new things about the disorder, but also a bit baffled I did not have this knowledge yet, being a doctor myself.

Learning about the sensory issues, the meltdowns and the shutdowns was  a real ‘treat’, finally I could understand what I was experiencing for so long, but could not really describe properly. Especially the meltdowns I started experiencing were very hard to understand. I wondered what was going on with me. Was I turning into a person with a borderline personality? Why did I start throwing things around? Why did I seem to get overloaded and unable to process any information?

Like I said, reading about it was very helpful. And I think it’s good newly diagnosed people with autism get education about their disorder. I can highly recommend to read as much about it as possible, because aggregating information is a way of getting control of your life. And we love control! We need it desperately, to function.

But after reading everything I could possible find, I was quite surprised to find out I have become more of an expert in autism than the people who are guiding and treating me. I haven’t been able to locate just one psychiatrist who specializes in high-functioning female adults with autism. I did find a centre who could diagnose me, specialized in women, though. But that’s quite new, and they did not have a psychiatrist.

I am telling the people, who are helping and treating me, what meltdowns and shutdowns are. How debilitating the sensory issues are. It feels quite strange to be ‘the expert in the room’, since I am being a patient.

This lack of knowledge worries me. An acquaintance of mine used to work with disabled children. Some of them were autistic. When they had a meltdown, she was instructed to ‘talk to them to calm them down’. Wow, this is so worrisome! Everyone who ever had an autistic meltdown knows this is the LAST thing you should do. Since there is a mental/sensory overload, you need to stop the input. Which means, get the person away from any sensory input, if possible. If this is how institutionalized children are being treated, well, we have still got a looooooong way to go.

Another example. I just read a blog of a Dutch pediatrician, about a child with autism. It is an interesting blog. A child with autism gets more and more disturbed behavior. The parents go to the doctor, and he is testing the child for every physical issue a young child could have. Results: none. From what I am reading, his behavior was being caused by meltdowns, especially during transitions, when he doesn’t know what is going to happen, which stresses him out a lot. The parents come up with a plan. During showering, they sing a song with the boy to announce the end of the showering, and the start of the other bathroom routines. It works, and the boy calms down during this transition. But then, a new problem arises. The people who are dealing with the boy in daycare, start singing this sung when he gets very angry and upset (to me, this seem to be meltdowns), and this of course does NOT work.

Again, a story that worries me because no-one in this story, seems to know what this child is experiencing and how to deal with it. Luckily the parents find a great way to deal with transitions, in order to prevent meltdowns. But both the pediatrician and the people in the daycare do not seem to have a clue what overloading en having a meltdown entails.

I just really hope to be able to spread some knowledge about autism, and all its related problems. I can not blame people for not knowing, and I am sure everyone who is trying to help people with autism, is doing and trying this in the best way possible. I am just shocked about the lack of knowledge about all our problems. I hope I can vocalise them to a large community, so people can understand more about the behavior, of people like us, who just seem to experience the world in a somewhat other way.

HBO Movie ‘Temple Grandin’

After being diagnosed with autism, I started researching the disorder as much as I could. Very obsessively, of course. 🙂 I was quite shocked to find out most people are sent home by their doctors/psychologists after being diagnosed.

Ok, in my country you can get some education about autism spectrum disorders, and if you’re lucky, you can find a psychiatrist that is willing to see if they can give you some medication, but that’s it. As an adult – being diagnosed ‘late’ – you are quite on your own.

Most books, help, doctors, psychologists and psychiatrists are focused on children with autism. Mostly male children. With very typical forms of autism (think: Rain Man).

So I was very happy to find out there was at least one, very well educated woman, who has autism and who did a very important discovery regarding deep depressure in humans: Temple Grandin.

HBO made a great movie about her life. Claire Danes portrays Temple Grandin; and I was stunned by her amazing performance.

Too bad this movie has never been shown in theaters (why?). It’s a must-see for everyone with (or without) autism. 🙂

I’ve found my ‘copy’ of the movie online, but it is also available on DVD at Amazon:

Life Hack: Computer Glasses

Recently I bought a pair of computer glasses on Aliexpress, after a friend recommended them to me. They helped her out, making it easy on the eye, to look at a pc all day long. So, the glasses came, and I used it behind by Mac, but wasn’t that impressed. The glasses went into a drawer.

But lately, I’m being more bothered by lights. My tolerance for sound is getting better, but it seems to be shifting to lights, my intolerance. Lights on cars, LED lights and fluorescent tubes really bother me, and they seem to be everywhere. 🙁 I decided to give my computer glasses a try, to see if they would help ‘fighting’ all these bright lights. And they did! If I wear them, the world is much less blue, much less bright, more sepia-ish, which is really nice! The first time I wore them, I even got tired. I think because being outside wasn’t as exhausting as usual.

So I am very happy to have discovered this works out pretty well for me. I go out with these glasses a lot, and they are also very helpful in the workplace, where fluorescent tubes are ubiquitous. They make going to the supermarket much less dreadful too.

Computer Glasses of Ali

The only disadvantage is, they are very reflective, so it is hard for other people to see your eyes.

Want to give it a try? Get yours on aliexpress for 7.90 US dollar.

Note: I bought this item myself.

What is Autism (to me)?

Although I have suspected autism in some patients I have seen in my career, I never really knew what it entailed to have autism. I have learnt the symptoms by heart, during my study, but did not understand what caused patients to behave, the way they did.

I had never heard of the debilitating sensory issues that go hand in hand with autism. These sensory issues are my true nemesis. During the most part of my life, they were minor, and I didn’t even notice them.

All changed when I became really stressed out and my sensory sensitivities became major sensory issues. It was pretty confusing to go from a state of ‘being and feeling pretty normal’ to ‘not being able to leave the house’ because sounds would literally hurt on the inside, when I heard them.

Lights became very bright, especially those on cars, or those awful LED lights and fluorescent tubes, which you can find everywhere nowadays. Touch became almost unbearable. Interaction with other humans beings was totally exhausting. Grocery stores became my biggest enemies. Sleep became more and more difficult due to the ongoing  sensory overload, which was sending my body into a continuous state of alarm, and made my cortisol (stress hormone) levels peak continuously.

Fortunately I have found my way out of this hellish sate of being, but I am still sensitive, especially on the sensory ‘side’.

To get an idea what sensory overload is, please check this movie:

To me, autism is mostly dealing with sensory issues and sensory overload. Of course there is more to it. But to me, this really is my core problem.

How about you?

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