Interesting read for NTs trying to understand autism

[cmuir]

Hi

 

Found this on the internet somewhere and it's makes a fascinating read. Actually brought a tear to my eye when thinking about my son and how he must feel sometimes.

 

 

Understanding Autism

Brisbanes Child (November 2005) Notbothm.E

 

Autism was once thought to be incurable, but individuals with autism are now showing us they can overcome,

compensate for, and otherwise manage many of its most challaenging aspects.

Here are 10 things every child with autism wishes you knew:

 

1 I am fi rst and foremost a child. I am not primarily autistic. My autism is only one aspect of my total character.

It does not defi ne me as a person.

 

2 My sensory perceptions are disordered. The ordinary sights, smells, sounds and touches of ordinary life can be

downright painful for me. I may appear withdrawn or belligerent, but I am really just trying to defend myself. Here is

why a simple trip to the supermarket may be hell for me:

 

- My hearing may be hyper-acute. The loudspeaker booms, the music whines from the sound system, babies

wail. My brain can?t fi lter all the input and I?m in overload.

 

- My sense of smell may be highly sensitive. The guy standing next to us hasn?t showered today, the deli is

handing out sausage samples, they?re mopping up spilt bleach in ailse three...I am dangerously nauseated.

 

- I am very visually orientated, and because of this, vision may be my fi rst sense to become over-stimulated.

Fluroescent lights hum and vibrate, the lights appear to pulsate and distorts what I am seeing. The ceiling fans

are on and there are so many people moving around. There are too many items for me to be able to focus on

(I may compensate with ?tunnel vision?) All this affects my vestibular sense, and now I can?t even tell where my

body is in space.

 

3 It isn?t that I don?t listen to instructions, it?s that I can?t understand you. When you call me from across the room, this

is what I hear, ?@*%@ Billy.?... Instead, come over and speak directly to me in plain words: ?please put your book in

your desk Billy, it?s time to go to lunch? This tells me what you want me to do, and what is going to happen next.

 

4 I am a concrete thinker. I interperet language very literally. It?s confusing for me when you say, ?hold your horses?, if

what you really mean is, ?please stop running?.

 

5 Be patient with my limited vocabulary. It?s hard for me to tell you what I need when I don?t know the words to

describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my

ability to express. Be alert for body language, withdrawal, agitation, or other signs something is wrong.

There is a fl ip side to this: I may sound like a little professor or movie star, rattling off words or whole scripts well

beyond my developmental age. These are messages I have memorized from books, television or other people to

compensate for my language defi cits. I may not understand the context or the terminology I?m using.

 

6 Because language is diffi cult for me and I am visually orientated, show me how to do something rather than just

telling me. A visual schedule is extremely helpful as I move through my day. It relieves me of the stress of having to

remember what comes next.

 

7 Focus and build on what I can do, rather than what I can?t do. Like you, I can?t learn if I?m constantly made to feel

not good enough and that I need ?fi xing?. Look for my strengths and you will fi nd them. There is more than one

?right? way to do most things.

 

8 Help me with social interactions. It may look as if I don?t want to play with other kids, but it?s just that I simply don?t

know how to start a conversation or enter into a play situation.

 

9 Try to identify what triggers my meltdowns. Meltdowns and blow-ups are even more horrible for me than they are

for you. They can occur because one or more of my senses have gone into overload. If you can fi gure out why my

meltdowns occur, they can be prevented.

 

10 View my autism as a different ability rather than a disability. Look past what you see as limitations, and see the gifts

autism has given me. I may not be good at eye contact or conversation, but have you noticed that I don?t lie, cheat

at games, or pass judgement on other people? With my attention to detail, and capacity for extraordinary focus,

I might be the next Einstein, Mozart or Van Gogh. They had autism too.

 

Be my advocate, be my friend, and we?ll see just how far I can go.

 

 

 

Caroline.

[Enid]

Made me cry as well, am going to copy it for family members, thanks, just off to have root canal filling at dentist Enid

[lynne]

Cumir,

 

I think the description of ASD had orginally been taken from something I wrote about my son a few years ago (not that I mind)

 

 

Where did you find it?

 

Teachers always find my son difficult to understand. The majority of this is due to my son suffering alot of sensory problems and ASD.

 

 

When my son went into year 4 he asked if I could write a description about him that his teacher could read. This is because he realised his autism is not described in one book but he is described in several books and some things of his autism are not described at all.

 

So we sat down and discussed what autism meant to my son. And of course I knew him and what certain things upset him or what he needed to do to calm down.

 

This description help his teacher to understand him more easily. In the end they had a fantastic year together. Even though she has been worried and anxious about having him in her class.

 

 

Heres my sons version

 

Paul age 7 years

 

I am first and foremost a child. I am not primarily autistic. My autism is only one aspect of my total character. It does not define me as a person.

 

My sensory perceptions are disordered. The ordinary sights, smells, sounds and touches of ordinary life can be downright painful for me. I may appear withdrawn or belligerent, but I am really just trying to defend myself. My socks are uncomfortable the seams are pressing into my skin causing me pain. My trousers are itching, all I want to do is take off my uncomfortable clothes but I can?t, I need to conform to the school rules. Here is why a simple day at school may be hell for me:

 

My hearing is hyper-acute. The computer booms out noise, which is annoying in my ears. I hear the ovens in the kitchen being opened and doors being slammed shut, this causes me more pain even though they are far away and you can?t hear them. I may miss the ending of words due to the way my brain filters all the input and I easily get overloaded trying to listen to my teacher.

 

My sense of smell can be hypersensitive. The child standing next to me hasn't showered today. Some perfumes can be overpowering to me and make my eyes sting.

 

I am very visually orientated, and because of this, vision may be my first sense to become over-stimulated. Fluorescent lights hum and vibrate; the lights appear to pulsate and distort what I am seeing. The sun and wind hurts my eyes. I find it difficult to find a person in a crowd. There are too many things for me to focus on so I may compensate with tunnel vision.

 

All this affects my vestibular sense and now I can't even tell where my body is. I can?t feel where I am sitting or where my legs are, so I fidget as a reminder to my brain of where my body is.

 

 

 

I need to get myself prepared for when you touch me. My whole body tingles just like pins and needles. If I do not know when you are going to touch me than this causes me pain and feels like knives stabbing in me. So please make sure I know if you want to touch me.

 

It isn't that I don't listen to instructions, it's that I can't understand you. When you call me from across the room, this is what I hear, "ebrebr Paul."... Instead, come over and speak directly to me in plain words: "Paul please put your book in your desk, it's time to go to lunch" This tells me what you want me to do, and what is going to happen next.

 

I am a concrete thinker. I interpret language very literally. It's confusing for me when you say, "hold your horses", if what you really mean is, "please stop running". In an exam you tell me 2 marks means write two sentences, so I have to check all the marks for each question and than I find a question with 3 marks, my world becomes confused and I cannot concentrate.

 

Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be angry, frustrated, stressed, frightened or confused, but right now those words are beyond my ability to express. Be alert for my body language, I may slump, become agitated or start to fidget more. These are some of the warning signs that something is wrong and I need help.

 

When my mind and body are overloaded I need to be given time and space to reduce the sensory input. These are some of the things that may help me; bouncing a ball, using cool spray, smelling lavender, running water onto my wrists, carrying heavy books, sharpening pencils. Painting and colouring help me to relax. Sitting in a quiet and plain room gives my senses time to recover. When I am sensory overloaded it feels like ten thousands bees are stinging me. So I bang and bang my head to get rid of the sensation.

 

 

 

 

 

There is a flip side to this: I may sound like a little professor, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorised from books, television or other people to compensate for my language deficits. I may not understand the context or the terminology.

 

Because language is difficult for me and I am visually orientated, show me how to do something rather than just telling me. A visual timetable is extremely helpful as I move through my day. Knowing what time a lesson starts and finishes helps to relieve me of the stress of having to remember what comes next. Knowing what time the lesson finishes helps to prevent me becoming overloaded, as I know there is an end. Structure is essential for me to get through the school day.

 

Focus and build on what I can do, rather than what I can't do. Like you, I can't learn if I'm constantly made to feel not good enough and that I need "fixing". Look for my strengths and you will find them. There is more than one "right" way to do most things.

 

Help me with social interactions. It may look as if I don't want to play with other kids, but it's just that I simply don't know how to start a conversation or enter into a play situation.

 

Try to identify what triggers my meltdowns. Meltdowns and blow-ups are even more horrible for me than they are for you. They can occur because one or more of my senses have gone into overload. If you can figure out why my meltdowns occur, they can be prevented.

 

My autism is with me every day of the year. You are luck you can have a break.

 

Please view my autism as a different ability rather than a disability. Look past what you see as limitations, and see the gifts autism has given me. I may not be good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, or pass judgement on other people? I say what I think and at times this will make you smile.

Be my advocate, be my friend, and we'll see just how far I can go.

 

 

 

 

lyn

Edited June 26, 2008 by lynne

[CEJesson]

Very informative. A good idea as part of a flyer don't you think?

[Lucas]

This has been in circulation for years and was written by a Neurotypical. I've always disagreed with a lot of it as have others. A spoof version has also been written where every Autistic child wishes you knew they really want to watch Smokey and The Bandit 3 right now.

[cmuir]

This has been in circulation for years and was written by a Neurotypical. I've always disagreed with a lot of it as have others. A spoof version has also been written where every Autistic child wishes you knew they really want to watch Smokey and The Bandit 3 right now.

 

 

Hi Lucas

 

I can't recall where I found this, but at the moment I'm having a battle with my son's HT about her insistence that my son attends 40-minute assemblies every Friday. When I read this, from an NT point of view, it seemed logical to assume that this could be how my son sees things/feels, etc. It would be helpful to gain an insight into how someone with an ASD may think/feel/view things. What don't you agree with? Because I'm NT and my son is AS, I'm desperate to understand how he may feel in certains situations, for example. I'd value your point of view on this.

 

Caroline.

[lynne]

The description I done for my son Paul describes his perception of how autism affects him. But he also suffers from sensory integration dysfunction with sensory modulation difficulties. Hence, this is why there is such alot of sensory things in his description.

 

This description would not cover all autistic child.

 

When I first wrote this description of my child, I emailed it to his sensory OT. She was very happy with the description of his sensory symptoms and asked permission to send it on for publishing. It was published in SI Focus. Its a magazine that discusses all sensory problems, treatments etc.

 

These types of descriptions help explain our children to teachers, carers etc. So anything that helps our children being understood are worth it.

Edited June 27, 2008 by lynne

[Zosmum]

Hi

Found this really informative.

I may try to do a similar thing with Z as she says when the teacher at school is talking it feels like her head is full of cotton wool. All stuffy and full

[ScienceGeek]

Hey Lynne,

 

What was written about Paul really made sense to me. Sounds very much like I was when I was younger, I still have issues with a lot of it.

 

SG

[lynne]

Hey Lynne,

 

What was written about Paul really made sense to me. Sounds very much like I was when I was younger, I still have issues with a lot of it.

 

SG

 

 

You and Paul have very similar diagnosis. He is ASD Dyslexia and SID with modulation difficulties.

 

You express your self really well over the forum.

 

From your experience is there anything else I can do as a parent to support my son?

 

take care

lynne

[Lucas]

As a child even after learning about Autism, I didn't have an opinion on 'Autistic person' VS 'person with Autism'. They would have appeared to be superficial and semantic. I think most children would see it that way. This only changed when I learned that there are people that believe every internal aspect that makes me who I am is in fact a prison restraining an alternative-reality version of me that is not Autistic. They claim this distinction by making sure 'person' and 'Autism' are two entirely seperate things. You can not be successful and Autistic, unless you are successful in spite of Autism rather than because of it or because it isn't the wheel on which success and failure is determined in a lot of Autistics. For the great majority, the described 'level of functioning' has never been an accurate predictor of success, but how we are recieved by others is.

 

Autism doesn't define everything that I am. I'm of Celtic-descent, British, libertarian, agnostic, working-class, heterosexual, don't like sports, do like dancing, favourite colour orange. But most of these things are not inheirent aspects of me; they are mostly ideas and social constructs. Some of them are even heavily influenced by Autism. I'm Autistic before I am most of them. I can change many of them by choice, but Autism is one of the very few that if it could be changed would challenge the very idea of what identity is. People sun-bath to darken their skin and in some Asian countries skin-creams that brighten the skin are quite popular. But the idea seems to horrify us in Britain; last year such a cream was released and an advert was run for it which attracted a lot of complaints for it's 'racism', despite many British people regularly using skin products to darken their skin. This is what happens when foundations of identity are laid so thickly on something as superficial as skin colour. Parents influence the descent of their children when they choose each other as partners, and that too hasn't been without controversy. Since then, ideas about identity have focused a lot less on descent. For me, Autism is the one immovable object.

 

Most of the other problems I have with the article tend to be that it isn't specific enough. But that's a problem to be found in just about every informational leaflet about Autism.