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. 🙂

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… 🙁

 

* 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… 🙂 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.

Let’s welcome Brooke to #Hollyoaks! 👋 #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! 🙂 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.  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: Dealing with Heat in Autism

I haven’t written anything in quite a while, which is partly due to the heat in my country. I live in a country where it – usually – doesn’t get really hot, but since May we have had many sunny, hot days. June was one of the driest months in the last 100 years!

Unfortunately, I am having quite some problems with heat. Heat is just another sensory stimulus my body finds hard to deal with. It is even worse, when it gets more humid, or when the air pressure changes. 🙁

So, rising temperatures tend to get me more into sensory overload, which is not a pleasant state at all. My perception for temperatures has been off for quit a while now. I am still walking in a t-shirt, when others get cold and need sweaters and coats.

I used to be the total opposite. When I was young, I was always cold. I would only feel good in (sub)tropic temperatures. Now I just get annoyed by these high temperatures.

The bad thing is, you can’t do much about feeling or being too hot. Not if you still have to go to work or try to function in a normal way. Staying inside, get a regular shower is about all I can do.

Dealing with heat in autism: The solution

Mission Cap

I did manage to find one item which can help against the heat, if you have to go out and get overloaded by the sun on your head: a cap which you can dip in the water, so it can cool down your head with this water. I have been using this to fight the heat, especially while I was on a boat, and it works pretty well!

I have way less headache. I can stay outside longer. I can dip the hat in water when I feel my head is getting too hot. I am really happy with this cap, even if it messes up my hair! 🙂

 

 

More info on how it works:

Mission also sells towels, but I haven’t tried them yet!

Want to buy one?

Do you have experience with cooling aids, or did you find another great way of dealing with heat in autism? Please let me know in the comments!

Note: I bought the cap myself!

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 inspired Temple Grandin to invent a ‘hug machine’ 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. 🙂

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… 🙂

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…. 😉 😉

Sensory Challenge: 4DX Cinema

Last year our cinema opened a 4DX theatre.

The idea is, all your senses can be entertained/triggered during a 4DX screening of a movie. Not only will you see and hear the movie, but your chair will move, there will be light/wind/smell/water effects to enhance the whole cinema experience.

As you may understand, I was not so thrilled… 🙂

I go to the cinema a lot. I love, love, love, loooooooove movies and loooooooove cinema. I can go as much as I want, since I got a subscription to Pathé (meaning, I can go to all the movies I want, as much as I want for 20 euro a month).

More and more films in Pathe cinema are in 3D. Although 3D can be a cool experience, especially in movies relying heavily on effects and not so much on story, it does feel weird on the eye and the brain to me.

And now we got 4DX. An absolute sensory challenge. For a long time I did not want to go, since I am managing my sensory input all day long…. But my significant other – J – loved it and really wanted to go together. So when I was feeling ok enough, I decided to give it a try.

We went to Rampage: Big meets Bigger. A great – superficial – movie, which is suitable for tons of special effects. 🙂 We got into our huge 4DX seats, which indeed moved throughout the movie continuously. To my surprise, all the effects were pretty cool. Fortunately I could switch off the water effect (no thanks – no unexpected water in my face – please!). The only thing really bothering me, were the flashing lights. They are just awful. Thank god, they weren’t used a lot.

So, I ‘survived’ the movie and had a good time! But after the movie, I did notice my body was rattled, and I got very annoyed about everything in my sight, feeling an urgent need to organize and clean everything up. By now, I know this is just a way to get control in a state of sensory overload, which I had put myself in.

So, it probably was too much for me, but I am happy I tried. I will not be in the 4DX cinema on a weekly basis, but I could go there. Once in a blue moon. 🙂

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. 🙂 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. 🙂 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. 🙂

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 – (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?

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