Action For Autism

Autism? Oh… I know everything about it!

2010-08-02T00:55:43Z

How many times have you dealt with people who said: “Autism? Oh… I know everything about it!”

I can’t count them on two hands, not even on all the hands of my family members.

And even worse: I can’t count the mistakes people have made towards my autistic family members.

People assume… and when they’ve had a course with the minimal amount of information they think they’re better than the parents in understanding autism.

People are not even aware of the very basics of autism knowledge and that worries me to bits.

Right now I’m dealing with people who are not even aware that autism often stands for autism spectrum disorder.
They’re not aware of the range/spectrum of levels in seriousness autism spectrum disorder stands for.

Oh yes, some autists are classical autists and they are dealing with the most severe problems. But even within that diagnosis there are different levels.
All these levels range from minor problems to almost an impossibility to function.

Some autists do very well in individual contacts, but can’t deal with a group, because they see and hear every detail of the behaviour of others.
Others can deal with communication and social contacts rather well, but they lack a diversity of interests, so they don’t have a lot to talk about.
Some autists have a high intelligence, but need assistance to deal with planning and time perception.

So one can say that without knowing the individual who deals with an autism spectrum disorder one doesn’t know anything.

Which must be hard to read for those who know “everything about autism”.

Sensitivity, body awareness and clothes

2010-04-27T08:18:10Z

Because many autistic children are highly sensitive parents from autistic children face extra challenges.
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Highly sensitive means that autistic children are more aware of the incoming impulses of their senses.
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Touch is one of them.
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Most people know that a large group of autistic children don’t like to be touched by others.
Touch can be interpreted as pain, and the reaction such a child gives mimics a reaction to extreme pain.
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A lowered awareness or better said a changed awareness is found too. Those children don’t experience the boundary between body/itself and the outer world, and being touched by a hand means that a hand invades their body. In this case too the reaction is very appropriate to the perception.
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When you’re aware as a parent of this changed perception you can teach your very young child to label contact in an appropriate way, to perceive the intention of contact in a different way, and mold the reaction to a well labelled perception into an appropriate way: “Please don’t touch me”, ignoring, etc etc.
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When you’re aware of this you’re able to understand why most autistic children have preferences for special clothing.
Some only want soft, flowing fabrics, others tolerate only wide clothing, without belts and layers.
And some only tolerate underwear on a daily basis.
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My boys show these different grades of awareness too.
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One is not really aware of the touch of clothes and I had to be aware that pants and such shouldn’t be too tight. He could develop wounds without being aware.
He once went to school on shoes of his younger brother. He was at the gardengate when I discovered it. His feet were all red, with a huge impression at certain places, which would have become blisters or worse if I hadn’t found out in time.
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My second son used to wear baggy clothes long before it was fashion. He wanted to feel warm, he said.
We found out that without clothes he called himself cold, whether he was cold or not. And we had to make him aware of that and teach him what to wear during summer. baggy it was, but certainly not the thick wintercoat he used to prefer.
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My third son is ware of changes in his clothes and that irritates him and draws all his attention.
So he often wears the same, like he wears a uniform. People are not aware that his wardrobe consists of 7 of the same trousers, for instance.
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My fourth son hates clothes. He only wears them when he has no other choice.
So at home he mainly walks around in his underwear completed by a t-shirt or poloshirt.
Not the ones I like, but a few he got from his oldest brother. I don’t like to see him walking around in those shirts. A bit more fashionable would be a pleasure for the eye, but he likes the feel of them and he doesn’t want to let go.
I have learned to accept that.
So in the house he wears his “house uniform” and outside the house quite normal, somewhat baggy, clothes.
Which is a tremendous improvement on only underwear at home and a row and meltdown before leaving the house.
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When you’ve blogged about this subject too,
please leave a note in the comments,
and I’ll add a link here.
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Signs and signals in our son

2010-04-27T08:19:16Z

First part of the story ::here::.
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Autism isn’t acquired, it’s inborn.
And long before scientists realised that autism can be diagnosed at an early age, we saw the signs like pieces of a puzzle clear before our eyes.
We enjoyed some parts, disliked others, but didn’t see the whole picture.
Not then.
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But with the knowledge of now, we would have seen.
We sure would have seen.
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Many people with autism have a focus on a small number of subjects/objects. Their interests are limited.
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My son used to play with his ball a lot. He didn’t lose attention.
In fact he got upset when the ball was removed.
Normal children can divert their attention without problems, but the ball was so stuck into my sons mind, that he kept crying and looking for it for such a long time, that we finally gave it to him and created instant silence and a content face.
It was like the ball was part of him. Like there was no boundary.
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He didn’t react to everything that way.
A few days after he was born he got a cute mouse. Small enough to pose no danger in his sleep, large enough not to eat it.
He liked that mouse.
It was such a lovely sight to see him sleep with the mouse in his hand.
But when it moved out of his sight, he didn’t cry, and when he got it back he recognised it, but never showed the intense content he showed after getting his ball again.
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Many children with autism don’t respond to their name
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My son heard everything, and when the bell in his ball sounded he always smiled.
But he didn’t respond to his name.
It was so strange, it went so against all expectations, that we lost our normal brainfunctions and took him for a hearingtest!
Ofcourse he could hear, we knew that.
But not responding to his name, ever, was so strange that even our doctor agreed he needed a hearingtest.
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The outcome was that he was able to hear everything.
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None was alarmed then.
Now we know that it’s one of the early symptoms of autism spectrum disorder.
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No interest in other human beings
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Autistic babies are interested in the world.
Only the very, very severe forms of autism can be seen at such an early age. These are the children that can hardly be distinghished without advanced technical diagnostic procedures from children with severe braindamage.
But other babies are interested in their toys, colours, light playing in the room.
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My son was used to our faces, and he looked at them, even responded to smiles.
But when someone else bowed over his beautiful cot he started to cry.
When he was over about 3 months of age he just looked right through them.
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I was in the final stages of my studies and took him with me to my professor, because he would cry with every babysitter.
When he was with me he was nice, calm, and even babbled his own babylanguage like he was making a radioprogram for babies.
My professor got very stressed by his gaze.
I guess my son was the first one who didn’t fall for his pretty looks.
Upon his request I would sit my son with his face away, so he couldn’t gaze at the professor.
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None was alarmed then.
Now we know.
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Avoiding eye contact
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Some children with autism spectrum disorder avoid eye contact already at an early age. Some have short looks from the corner of an eye.
When the child isn’t going through a stage of shyness, it might be an indication to seek a more expert opinion.
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I was so used to asking for conscious attention and eyecontact, that sometimes I still display the same automatic behaviour: “Hej, look at me please.”
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During the first year of our son’s life we saw more signs and signals of autism, but knowledge about autism was very limited then.
Friends remember I worried about autism, starting a few month after he was born.
But some signs were so funny that we had a good laugh and only later realised what we’d seen.
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Autistic children take language literally.
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One of the main features of autism is that people with autism have problems with imagery. They take language literally.
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I was feeding my boy while he had a small duck in his hand.
We call it “eentje”.
Like so often the duck fell on the ground and as he never got upset about that, I left it there.
I wanted to give him another spoonful saying “nog eentje?”, meaning: “take another”.
He responded to “eentje” and bended over his chair to see the duck.
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This might have been a coincidence, but after realising what happened, I saw that it happened far more often that he took language literally. Already at that age!
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Children with autism show developmental problems in three areas:

· Social relationships and interactions
· Language and communication.
· Activities and interests.

When you need a diagnosis turn to a certified childpsychiatrist who works wiith a team of certified psychologists and others.
A good diagnosis involves multiple ways of approaching the signs and symptoms, ànd a good advice for treatment.

Dutch Autism Awareness week

2010-04-09T11:52:55Z

It took a great deal of lobbying to make the Dutch organisations accept autism awareness (month) as a goal.
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With great hesitance last year they started with a day.
This year they dedicated a week and a website to autism.
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This week ends tomorrow.
It was organised by the two main autism organisations and hardly made it into the media.
Yet, there were many initiatives by autism organisations and individuals to have open days, meetings and other events at lots of places throughout the country.
The organisers of the week even asked people to bring others to their attention to win an autism friendliness prize.
Which went to someone of a commercial organisation.
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We here at Action for Autism expected the prize to go to a volunteer.
To stress the importance of people near a family of autism.
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Because in daily life an approach which can be used in dialy life makes a difference, but the smile of someone who understands when times are tough means a lot more.
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To us, autism awareness month doesn’t fit in a week, but needs a whole month, and day to day attention all year.
Together with other autism groups all over the world we strive for better understanding of people and families with autism, better help, and far more care.
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Meldactie AWBZ

2010-04-02T15:10:03Z

Eind 2009 hield de mantelzorgorganisatie Mezzo een meldactie waaruit bleek dat veranderingen in de AWBZ mantelzorgers persoonlijk raken.

Deze maand houdt Mezzo, samen met zeven landelijke cliëntorganisaties, opnieuw een landelijke meldactie.
De ervaringen die worden gemeld worden vervat in een rapport voor de minister en de Tweede Kamer.
Doel is inzicht te bieden in de wijze en de omvang van veranderingen in de AWBZ op het leven van mantelzorgers.

Ook diegenen die de enquete hebben ingevuld in 2009 worden gevraagd weer deel te nemen. Want het is de moeite waard te kijken naar bv. wat er inmiddels al veranderd is.

U kunt de vragenlijst hier openen: Vragenlijst2010 .

Invullen duurt ongeveer 15 minuten.

Wilt u liever iemand spreken?

Bel dan naar De Mantelzorglijn: 0900-20 20 496 (€ 0,10 p/m) op werkdagen van 9 tot 13 uur.

Autism Awareness Month

2010-04-02T15:12:48Z

It’s autism awareness month.
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All over the world autism advocates, organisations and others work to educate the public about autism.
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Autism is the name for either classic autism, or autism spectrum disorder.
Spectrum disorder means that autism shows in many ways and at many levels of seriousness.
The most serious is classic autism.
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Autism is a neurological problem. The result is a disorder in processing information in the brain.
The main features are problems in communication, social interaction and phantasy. But all developmental areas of the person are involved.
Autism has no other outer physical characteristics. It can’t be seen when you see a person.
But you will experience it when dealing with an autistic person.
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To get a good diagnosis a child needs to be examined by different professionals, by different means, and the parents and if possible a teacher or other categiver need to be interviewed too. (see here).
The result of the examination will be a diagnosis following the Diagnostic and Statistical Manual of Mental Disorders. In short: DSM IV.
In this manual the precise descriptions are given for each autistic disorder.
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Some countries use additional systems, which often are linked to insurance categories.
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Someone with autism can be recognised by three main criteria:

- qualitative impairment in social interaction
- qualitative impairments in communication
- restricted repetitive and stereotyped patterns of behavior, interests and activities
- Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

and: The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder
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So a diagnosis by a social worker, a teacher, a family physician or a parent is not valid.
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The number of people with a diagnosis of autism is increasing.
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And we have to conclude that the absolute number of people with autism is increasing to.
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Even though we’re more aware of autism and it’s main characteristics, many autistic children are not recognised, which means that they won’t get the support they need.
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On the other hand, there are also many misconceptions clouding our observations in every day life.
For instance that all autists are savants, people with an outstanding talent for something special.
In fact, only about 10% of those who are seriously affected by autism display an increased focus on a certain subject in sich a way that they know more about it than others.
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Autism Awareness Months is of utmost importance.
It’s a special time to educate people about what autism is and how to deal with individual autistic people.
It’s also a time to inform autistic people about what they need to know to have a better life,
and a time to give special attention to families.
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So support this month with all you can.
And if possible, support autism organisations, families and individuals.
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I’ll be writing more about this during this month (and the rest of the year.)
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When you want to use the graphics of autism awareness month on your site, please do so.
Download them to your own computer, so this site doesn’t exceed bandwith, and upload them to your own site.
Link to this site, so others can find the graphics too.
Let me know you’re displaying our graphic, so we know our efforts are valued. Thank you!

A family with autism

2010-04-09T12:06:54Z

Some people think that being a mom of 6 is quite a job, but when they hear 4 of them are dealing with an autism spectrum disorder, I see something in their eyes I have no description for.
It’s like they think that one day I was drinking a quiet cup of tea, tasting a chocolate cupcake while listening to the birds and suddenly the whole family was planted on my table, autism included.
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Families grow.
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And it started with my first child.
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He was born on a sunny day, with my favorite midwife present.
The sun was shining in my bedroom, and winter had nearly come to an end.
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The delivery was as long as could be expected for a firstborn, even though the final stage lasted for over an hour and the contractions had disappeared.
I was young, did the work myself, and delivered a healthy baby boy.
All was well. I was happy I never indulged in unhealthy activities, like smoking, drinking alcohol, or eating anything risky.
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I’ve often been asked if anything made me think about autism that time.
No. I was a happy mother sitting on a pink cloud, Drifting in blessed naivity. Expecting my life to be happy ever after.
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At 5 months we could have seen the first signs as clear as could be, if we had known.
Oh, we realised he got upset when his favorite toys were not at the place where he expected them to be.
After a while I even put them there before taking him out of his bed.
We laughed, because our baby was as clever that he could remember things so well. He could barely crawl, but his memory was perfect.
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That he didn’t react when we called his name was a bit worrying though.
We knew he could hear us, as he returned noises when we talked to him, and he liked the high toned funny sounds best.
The doctor checked his ears and told us he was OK, that he concentrated well for his age.
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We know better now.
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To be continued

2010-03-31T10:42:54Z

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Welcome at our new site!

2010-03-30T14:48:13Z

Welcome!!!

With great pleasure I’m able to announce that our new site is open.

We’re happy that we’ve been able to reach the launchdate in time for Autism Awareness Month.

The design for the site was chosen with a few requirements in mind:

- quick overview
- easy navigation
- no clutter
- room for everything

Ofcourse we need to run the site to discover any flaws.

That’s why we’ve launched a few days before april, so the users can give their feedback and we can change what needs to be adjusted.

And we can find out if the peculiarities of the site are a real problem or just some minor issues that add to the identity of the site.
(I still haven’t found out how to make a proper list inside posts, or how to make paragraphs. One way or another the css of it doesn’t like me.)

The site is still basic, because we haven’t moved everything here yet.
So come back regularly. You’ll see the changes.

For those here for a quick visit, to drop EC, for example: look at the sidebar. It’s all there.

Enjoy!!

test: Almost ready for launch

2010-03-30T11:55:11Z

The site is almost ready for launch, but there are a few issues that need to be solved.

One of them involves CSS.

Maybe I’m overlooking an easy solution to get spaces between paragraphs and to get lists listed.

I won’t postpone the launch though.