Conference: Latest Insights in Research of Adults With Autism – 9th of May 2018

The International Society of Autism Research (INSAR) comes together on an annual basis to discuss the latest insights in their research. Usually this conference is being held in the United States, but this year, it will be in the Netherlands, in Rotterdam!

Prior to the scientific conference, a special conference for interested parties will be held in Amsterdam, at the Koninklijk Instituut voor de Tropen. Professionals from the medical and psychological field are welcome to come, as well as people with autism and their family members!

The conference is designed in an autism-friendly way, so every person with autism should be able to come and ‘enjoy’ the conference. There will be places to withdraw, you can bring your assistance dog, you can opt out for photo’s and there will be support to help you with your needs on the location!

You can get your ticket(s) here. People with autism and their family members pay 25 euro, professionals 99 euro. More info on the conference can be found here.

Date: 9th of May 2018

Location: Koninklijk Instituut voor de Tropen

Algemeen programma:

TIJD

PROGRAMMA ONDERDEEL

VERZORGD DOOR

10.00

Welkom, inloop

10.30

Introductie

Dr Hilde Geurts (vice president INSAR)

10.40

Highlights of autism in early and middle adulthood research

Dr Simon Baron-Cohen (Cambridge University, UK, president INSAR)

11.05

Conceptualising autism and the role of camouflaging

Dr Will Mandy – (UCL, UK)

11.30

Measuring quality of life in an autism friendly way

David Mason, MSc (New Castle Group, UK)

12.00

Ruimte voor gedachtewisseling met sprekers

Moderator: Martijn Dekker (ervaringsdeskundige en actief voor de autismegemeenschap)

12.30

Lunch

13.15

Medical problems in autistic adults and service use

Dr Lisa Croen (Kaiser Permanente, USA)

13.40

Increasing general practitioner (NL: huisarts) accessibility for autistic adults

Dr Christina Nicolaidis (Portland University, USA)

14.05

Highlights of autism and aging research

Dr Francesca Happé (UCL, UK, vroegere president INSAR)

14.35

Ruimte voor gedachtewisseling met sprekers

Moderator: Amélie Picard(ervaringsdeskundige en actief voor de autismegemeenschap

15.05

Afsluiting

Dr Hilde Geurts (vice president INSAR)

15.15

Einde algemeen programma

I think it is really cool the INSAR has made a special conference which can be attended by autistic people. I am interested to go, although I have fear getting ‘bombed’ with soooooo much information. But I could withdraw, if I like….  🙂

How about you. Are you coming too?

Lifehack: Moving to a Low Sensory Input Place

Making changes in my new home. With ear protection to prevent sensory overload 🙂

As you may have noticed, I haven’t been online much lately. I have been very busy preparing to move. I have bought my first house (jay!), in the area I come from originally. Quit a big decision, since I have been living in the capital of our country (Amsterdam) for half my life now. But now, knowing what helps and what bothers me, I’ve come to realize I need to be in a place which doesn’t get on my nerves as much, as a the big city I am living in.

A big city is always ‘giving’ sensory input. Here, in Amsterdam there is a never a moment of peace. There are cars, people, lights and noises everywhere, all the time, which can be appealing, if you are able to filter out most of this input. But I can’t. So I never feel as happy and comfortable as I can be.

I have felt this (uncomfortable) for many many years, but never knew why. I just guessed I didn’t really belong in a big city, for unknown reasons.

It feels good to get more control over how I feel, by managing my sensory input. I have spent quit some time in my home area, and my sensory overload, and autism symptoms are getting less and less, which is great. Also is it really nice to spend more time with my family 🙂

The move is quit stressful though, since I don’t like change much. But I am doing it at the lowest pace possible, to keep my stress levels as low as possible.

At the end of this month, I will be officially moved out. Looking forward to that moment, hopefully accompanied with a lot of piece (of mind).

Lifehack: Relaxing with Binaural Beats

Lifehack: Relaxing with Binaural Beats

Although sensory input can the biggest enemy of everyone with autism, I’ve found out it can also be a big ‘friend’ and help as well. 🙂

During my studies, I found out I can fall asleep very easily while listening to certain tv shows, like Friends and Planet Earth. The rhythm of the spoken language seems to have a soothing effect on me, calms me down, and makes me sleepy. My own language (Dutch) doesn’t have this effect to me, which doesn’t surprise me: our rhythm is different, less ‘relaxed’ and way less soothing to listen to.

PLANET EARTH

Great visuals, with the voice of David Attenborough. So soothingzzzzzzzzz. <3

NATURES SOUNDS

Sounds of nature can be soothing and calming as well, but I guess, this is something all human beings have in common. There are tons of soothing nature sound videos on Youtube, which can really help you unwind and relax.

BINAURAL BEATS

The most interesting Youtube movies I have found, which seem to be able to relax and influence the brain, are binaural beats videos.

Binaural beat videos send sounds with two different frequencies to your headset. As a result your brain will experience a sound with a frequency, which is the difference between the 2 frequencies. Then, your brain will follow the frequency and produce brain waves of the same frequency. By doing this, in the right set of frequencies, you can get your brain to get into a relaxing frequency (theta and delta waves), which normally sets in when you fall asleep.

Although I was sceptical about the binaural beats (are they really going to influence the frequency of my brain?), I must say, they seem to work.

I really get in a relaxed state after listening to them for a while. Some of the binaural videos have annoying sounds, but if you skip those, it can really work out well for you.

I have looked for medical research on binaural beats. Unfortunately there isn’t much research on the subject, but I did manage to find one study, in which the effect of listening to binaural beats was measured. The researchers concluded that binaural beats are able to induce a meditative state of the brain rather quickly (e.g. after 10 minutes).

Pretty cool, ey!

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:


The Sensory Deprivation Helmet

The Sensory Deprivation Helmet

Recently I saw something on TV, which immediately drew my attention: a sensory deprivation helmet.

Although it looked pretty weird, it made ‘sense to me’. It is pretty hard to block out al the noise surrounding you, especially if you are in busy environment, with a lot of people, like offices.

So I started googling to see if this helmet actually existed, and found two helmets: the Helmfon and a ‘helmet project’ of artist Jordan K. Reynolds. Both seem to be prototypes, as far as I can tell.

Helmfon

Sensory Deprivation Helmet

Source: site Jordan K. Reynolds
Source: site Jordan K. Reynolds

 I am really curious about the Helmfon and would love to try it someday, to see if it helps and actually works.

It could be a great asset for everyone who needs to get some work done in busy environments, without getting bothered by sensory overload!

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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