5 Must-Have Items for People on the Spectrum

As you might have read on this page before, fighting sensory is a daily battle for me. I am guessing for a lot of people on the spectrum. Here I present 5 items that make my life a lot more easier

1. Earmuffs

These earmuffs look horrible, but they are absolutely amazing! It’s great to use them to unwind at home. To stop being annoyed by the sound of the fridge, the dishwasher and all the humming machines in your home. Since they do not filter frequencies of human voice, you are still able to hear someone if they talk to you (although not easy) or watch tv!

2. Cooling Cap

When there’s another hot day, which is causing you to meltdown, this cap can help quite a bit. You can soak the cap in water. After soaking, it will do all the – cooling – work for you!

3. Computer Glasses

These computer glasses, officially meant to filter the blue light when working behind a computer, are a real help to me! They tune down the brightness of the world for me. I wear them a lot.

4. Sleeping Mask

Sleeping properly can be a real hassle nowadays, with all the unnatural light in our world. Most sleeping masks are uncomfortable and put pressure on your eyes. This one doesn’t. I sleep with it every night, and am grateful to have it.

5. Custom Made Ear Plugs

If you need to be out and about, these ‘guys’ are a real solution. They are not cheap, but they are definitely worth their price! A great alternative for earmuffs. ๐Ÿ™‚

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How Can Autism Affect Your Hearing?

Autism can have a profound effect on your ability to hear things. In hindsight, it was one of the first things I noticed, the inability to hear everything properly in crowded areas. I figured I had a hearing problem, but tests showed I could hear perfectly.

This ‘hearing problem’ emerged in my early twenties, but seemed to subside when I got older. It reemerged a couple of years ago. It can be really annoying, since I can not understand everything – simply because there is so much noise I am not able to filter properly. This also makes me speak loudly. Apparently I can be very loud from time to time; I am guessing as a result of not hearing my own voice in the way I should.

I found this video of BBC Sesh – explaining how autism affects your hearing – on the facebook page of Mysig – a Belgian autistic lifestyle blogger (thanks! @Mysig).

So, how can autism affect your hearing? As you can see in this video, there are so many sounds ‘coming in’ at the same time, it is very hard to hear words distinctively if you are also hearing tons of chatter, traffic, hissing coffee machines, lamps and are unable to filter them out. I have to ask regularly what people are saying to me, because of this.

How about you? Is autism affecting your hearing? In what way?

how can autism affect your hearing

Update: I Am Still Alive

So, I haven’t been blogging for a while, due to several reasons. First of all, the heat has been bothering me quite a bit. It worsens my sensory overload and really gets to me, especially when it is humid (which it is a lot in my country).

Secondly, I have been thinking a lot about ‘coming out’ as being on the spectrum, since I am a doctor. There are quite some doctors on the spectrum. But nobody is open about it, which I can understand. I like to be open about it, but I don’t want it to have negative repercussions. One colleague, who is open about her autism, is advising doctors not to be open about it. I guess she experienced first-hand the (negative?) effect of being open about it.

So, what have I been up to?

* Well, I have found one more ‘tool’ to fight the heat, thanks to instagram. After posting a blog about a cap which can cool you down, I was followed by a company selling products that cool you down. I checked them out, and was happy to see they sell a lot of different cooling vests! I bought one, tested it, and will review the vest as soon as I can. ๐Ÿ™‚

Cooling Vest

 

* I contacted a company which sells special toothbrushes which can be used in autism. I would like to test them. Haven’t heard anything from them yet… ๐Ÿ™

 

* I decided to buy a weighted blanket.

I have known of their existence for quite a while. Well, I knew of the handmade blankets you can buy online, to be honest. Since I have experienced the great advantages of deep pressure, I have been very interested in this product. But they are pretty expensive. Through instagram (yes, again :)!) I got to know the products of Somnos (they followed me). I checked out their site and videos, and I must say, their blankets look amazing. Since their product did not magically appear for free to review on my doorstep (bummer!), I decided to buy one. I really hope it will help with my sensory overload! I ordered it when I was heavily overloaded, and dying to find some relief. Amazon says I will receive my blanket tomorrow (and not today, as they promised grrrr). I. Can. Not. Wait.!!!!!

 

* I bought a – pretty – professional Canon camera for my blog. It has a trillion amazing functions, so it will take me forever to use it properly… ๐Ÿ™‚ It also is suited for vlogging, which I am considering to do in the future. Perhaps. Maybe. Not sure yet. Really not sure. Since you are putting your face out there. Mmmmm.

Autistic Talia joins Cast of British Soap Opera ‘Hollyoaks’

Autistic Talia joins Cast of British Soap Opera ‘Hollyoaks’

As you might have noticed, there has been a surge in tv-shows displaying autistic characters (like ‘being atypical’ and ‘the good doctor’). A good development, but I have been missing female characters who are ‘openly autistic’ (instead of hinting towards autism like dr. Bones – being afraid to scare away the audience!?) on television.

So I was pleased to hear Talia Grant will be joining the cast of the British soap opera ‘Hollyoaks’ to play an autistic character. Talia, the daughter of Carrie and David Grant, is diagnosed with Asperger, and comes from a ‘special needs’ family.

Letโ€™s welcome Brooke to #Hollyoaks! ๐Ÿ‘‹ #FirstScene #Welcome #Hiya

Een bericht gedeeld door Hollyoaks (@hollyoaksofficial) op

 

I think this trailer is pretty accurate, regarding the sensory overload one can experience in autism. I really hopes it will give people a realistic idea about being autistic and having all these sensory issues!

How about you? What do you think about displaying an openly autistic – female – character on television?

Officehack: Dealing with E-mail in Autism

Officehack: Dealing with E-mail in Autism

Dealing with e-mail in autism can be quite a challenge. People expect you to check your e-mail on a regular basis, but what if you start dreading your inbox?

This happened to me, unfortunately. An inbox is something you can not control completely. There can be unexpected messages – with an emotional impact – which you’ll have to read at some point. What really bothered me, was not being in complete control. I had to check my mail regularly, but found having to deal with mails I was not expecting, was hard on me, and quite stressful. It took me quite some years, before I found a very simple solution to this problem: creating filters!

After creating filters for my inbox, I stopped fearing my inbox! ๐Ÿ™‚ It is an amazing, simple solution for everyone who doesn’t like to be surprised in any kind of way.

The big difference is, I still get all the mails I used to get, but now, with these filters, I am back in control of when I read my mails. ย By getting this control back, I feel less stressed, and more comfortable checking my mails.

I used this ‘officehack’ for my private G-mail-account, which also receives a portion of my work mails. As far as I know, it is possible to set up filters in any kind of e-mail program. It makes dealing with e-mail in autism much, much, much easier…

I hope this post ‘dealing with e-mail in autism’ was helpful for you. Please let me know in the comments!

Lifehack: Somnos Weighted Blanket

Applying deep pressure to the body can induce a great sense of tranquillity.

Farmers discovered this a long time ago (using squeeze chutes), which inspiredย Temple Grandinย to invent a ‘hug machine’ย for herself, so she could apply deep pressure to her body to calm her down.

Squeeze Chute – used to calm the cattle with deep pressure

Deep pressure is absolutely amazing, and for people with autism, it feels like being hugged for the first time – in a lifetime. The calming effect of a hug, which you can not achieve by hugging, can be achieved by deep pressure. Once you feel this, you finally understand why people like hugs. ๐Ÿ™‚

After Mrs. Grandins invention of the hug machine, several commercial products have come available to apply deep pressure. The most well known are the Squease Vest and weighted blankets.

I have tried the Squease Vest and was amazed by the calming effect it had on me (will blog about this soon). And although I haven’t tried weighted blankets, I am quite curious about them. Especially now since there are these beautiful blankets of Somnos!

Unfortunately weighted blankets are quite expensive. The blankets of Somnos start at 199 dollar and go up to 439 (!) dollar. They do look better, and more sustainable, than the hand-made ones… ๐Ÿ™‚

Would love to hear if anyone of you has experience with a Somnos blanket! Am also willing to try one, if Somnos could spare one for review…. ๐Ÿ˜‰ ๐Ÿ˜‰

Fighting Sensory Overload: the Oxytocin Experiment

The last decade, I have been plagued by sensory overload. Light(s) bothered me, I would not be able to understand people properly in a pub (too many sounds). I could not sit on the average pub chair (not soft enough!), I could not wear every fabric (too scratchy), or would get annoyed by the weight of my shoes or my watch (both, too heavy).

Last year, this only got worse and worse. I was very stressed and the sensory overload just exploded: I could not deal with sounds, human interaction, touch and physical proximity anymore. Everything was too much, and it felt pretty awful. I escaped my home, which is in the capital of our country, since the overload of sensory stimuli was soooo overwhelming. When sounds started to cause pain in my body, I knew I HAD to leave.

Somehow I had figured out my complaints weren’t just being caused by regular stress or a regular burnout (which I thought for a long time), so by then, I had already asked my GP for a referral to a specialized centre for autism diagnosis in women.

For months I stayed in a vacation home, to calm down and get away from all the sensory input. But even here I was being bothered by the few sounds in my surroundings: the airplanes, the cars, the humming of my fridge, the quacking frogs and the endless string of man-made machines humanity uses on a daily basis. I was experiencing the sound of every plane as if I were ON the airport, next to the engine with my ears, and was baffled a human can even experience a sound in this way. All these sounds were pulling me into a cycle of stress –> worsening of sensory overload –> creating more stress –> worsening the sensory overload –> inability to sleep –> worsening of sensory overload and autism symptoms –> stress –> repeat, repeat, repeat.

So, getting more and more desperate, I was looking for an ‘out’ in this cycle of horror. With all my medical knowledge, and my newfound knowledge of autism (I read up obsessively to gather all information to get some control over my ‘new’ situation) I figured oxytocin might have a role in autism.

Oxytocin, also know as the ‘cuddle’ or ‘love’ hormone, is important in the bonding of people. I figured it was also important in calming people down, when they are stressed. Regular people seek comfort and hugs, when they are distressed, and then they calm down. Oxytocin has a big role in this. But autistic people get stressed when they are hugged. The hugs are overwhelming, and not working the way they should…

But I guess we are all in need of the calming effect oxytocin has, which is being released during skin-to-skin contact. After theorizing for quite a while on this, I read about a man who tried oxytocin for his autism, in one of the autism Facebook groups I was in. After reading this, I was sure: I NEED to try oxytocin. Of course, I first read up on research. Oxytocin has been tested in small samples various times, and documented by researchers. Most studies did show improvement in the autistic subjects, and the adverse reactions were very rare. Although there are no data about long term use yet, it seems to be a ‘safer’ medicine to me than antipsychotics, which can be very harmful in the long run.

So, after studying oxytocin, I decided to take a chance, and try it. The first time I tried, I only sprayed one dosage in my nose… and waited. I was quite surprised: a very relaxed feeling came over my body, and I fell in a semi-sleep kind of state. ๐Ÿ™‚ After this first, positive experience, I decided to put myself on a medication regimen of 2 sprays of oxytocin 3 times a day, based on the pharmacological characteristics of oxytocin (short half-life) instead of using one hoge dosage once a day (done in most of the research I have read).

It worked out pretty well: I finally got out of the awful cycle of worsening overload, my meltdowns disappeared, and the volume of the extreme loudness of all the sounds in my environment was slowly going down. ๐Ÿ™‚ Of course, it is not a wonder drug which makes all your problems go away in 1 day, but it did seem to turn around something I wasn’t able to get out of on my own, not even with all the aids I was using.

Women and Autism: Towards a Better Understanding – an Autistic Doctor Speaks Up

Recently I got in touch with Sarai Pahla, a fellow doctor, living in Germany, who spoke at TedX Muenster about her autism diagnosis. I think it is very cool and brave she speaks so openly about it! I would like to share her TedX story with you, so here it is. ๐Ÿ™‚

TedX: Sarai Pahla – Women and Autism – Towards a Better Understanding

So, what do you think of Sarai Pahla’s story?

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 โ€“ (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 Happรฉ (UCL, UK, vroegere president INSAR)

14.35

Ruimte voor gedachtewisseling met sprekers

Moderator: Amรฉlie 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…. ย ๐Ÿ™‚

How about you. Are you coming too?

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. ๐Ÿ™‚

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!

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