You probably were wondering what this post would be about since I combined a positive feeling as amazement with a negative feeling, fear.
I chose the combination of these two words because they perfectly describe not only my feelings towards the upcoming topic, but also the feelings of the main character(s) of this story.
I'm feeling the suspense rising here, so I will not longer keep you in the dark with this vague description.
Today, I would like to talk about ASD, or better known as Autism Spectrum Disorder. BAM, there it is!
For me personally, this is a huge step to take, to open my voice publicly and share my view on autism.
Why? Because autism is a part of myself, an issue I already deal with for more than 20 years.
Before you think what I presume you are thinking: no, I don't have autism. But someone really special to me, has.
Autism for me is not a big unknown monster or a DISability since I am used to it and since I am confronted with it daily.
For me, it's normal. I have never known the opposite.
The person I would like to talk about, knows I will write this post and that I will share it with the world. For his privacy and as respect towards him, I will not reveal his name or his relationship with me. This is more a detail than a necessity to know.
So, I especially wanted to write this post for a long time now to remove the wrong prejudices and information that is shared through media about autism.
I am not claiming that the media only share wrong things, they certainly also share relevant and right information. But somehow, I always get attracted to those who do not tell the truth or reality about ASD.
Before I go further, it is necessary to explain some main facts about autism.
First of all, autism is not just autism. There is a reason for it being called Autism SPECTRUM Disorder. Autism appears in so many forms, ways and levels that you not always can be sure if someone is autistic or not. An autistic person can be very sociable, talkative and can be functioning perfectly in society. So, first prejudice that is out there: not all autistic people are nerds, extremely smart, shy and without social skills. This is an utter lie.
Secondly, autistic people are very talented and possess skills people without autism sometimes are not able to have. (Note: I refuse to say 'normal people' instead of people without autism because autistic people are not abnormal, in no way possible)
People with ASD can sometimes be real artists because they have the ability to see great details (sometimes even that small it seems impossible) and hear so much better. I know people who can draw insane sketches of people or buildings or can learn to sing easily because they hear the tone of music more purely than we do.
Autistic people are continuously stimulated by stimuli in their environment. My friend (the person I will not mention) can lose control over a situation easily when he is surrounded by many people and lots of noise. A party is already a good example of a place where the stimuli are very high since he hears all those noises so much higher and louder than we do without the ability to focus on only one sound. That way he often can look absent or not interested but this is just because he isn't able to focus in an environment filled with stimuli. Such environments are very hard for people with ASD since it requires so much energy from them to focus on one thing and they easily lose control over a situation.
Another thing is structure. There are very structured (sometimes in such a crazy way) autistic people but there are also very chaotic, messy autists. It is not because someone is autistic that this person will be the perfect planner and structurist there is. Again a lie and a cliché. My friend for example is the most chaotic and messy person I know it sometimes irritates me since I am very well structured and planned, haha (the perfectionist in me has spoken).
Next to that, structure is also something very very important for autistic people because for them, the world is one chaotic mess in which they cannot see a structure. Everything changes so fast and we need to take so many steps, it's sometimes even hard for us to remember how to structure our lives.
To help my friend in daily life, we need to repeat his tasks sometimes 4-5 times. This seems a lot, I know, but it's needed. Since his head is continuously stimulated by so many things (thoughts, stimuli entering his head, tasks he needs to do), the loud chaos in his brain overwhelms him and focusing on what matters is very hard. The consequence of this all is that he forgets things easily, so we need to repeat everything.
But of course, I only am giving one example. Like I already have mentioned before, there are thousands of examples and differences between people with ASD. No one is the same, not even people with autism.
And the sad thing of this all is that the media, especially fiction and film, often only show the clichés (think of Sheldon or the brilliant series 'Atypical'). Most of the times an autistic person shown in a movie or series: 90% chance it is someone with the Asperger Syndrome or also called the 'core autistic'. The typical 'nerd', highly intelligent, zero social skills and living in his head. That is a pity I think, since I know of so many other interesting examples, like my friend.
I am not claiming those characters are not examples of autism, there surely are, but often the characteristics are enlarged. My friend is also intelligent, but not a nerd and he has social skills.
As you can see, I can nearly write a book about this topic since it is so personal for me. I can also easily get annoyed when I hear or see wrong information about ASD or when these people get offended. I know it is not always clear to see if someone has ASD and often they will not share this with you because of shame, but please, they earn even more respect than we do.
To end this post, I would like to refer again to the title of this post: the combination of amazement and fear. I chose amazement because after all those years I can be utterly amazed by the behavior of my friend. He does not behave like we do, by which I mean: we all behave in a certain pattern because most of the times we can relate to other's behavior or already foresee what someone will do or why they acted like they did. My friend's behavior is nowhere near like that. So many times he acts so unlogically for us which we often do not understand, but when you hear his thought process, you get to understand his logic and how his head functions and that's really fascinating.
Fear I chose because people with a disorder mostly live in fear, especially when they know they will not be able to function independently in society. They will always need support and this is the case in my experience. The support out there is extremely hard to find and it's a fight against the government to find the support needed, to give people with autism the care they need. And that's such a great shame because not only I live in fear, not knowing what the future will bring for my friend, he also lives in fear: fear for his future, fear for other people and opinions, fear for all the dissapointments he already has faced and fear for being alone.
But next to all these negative feelings around disorders: people with autism and all other people with a disability are amazing in their own unique way.
Okay, I hope this post was an eye-opener and gave you some more information about this personal part of myself.
It was difficult to write, since I really am opening my soul and the soul of someone else here.
I hope I can open a more peaceful and anti-prejudicial atmosphere towards ASD and disabilities by writing this post.
If you have any further questions about this, don't hesitate to contact me.
(more information and projects around ASD: https://autimismus.be/autionl/ - https://www.autismspeaks.org/ - http://www.autism-society.org/ - http://www.autismecentraal.com/public/standaard-b.asp?lang=NL&pid=102)
Thank you for reading.
Lots of love,
MJ