Once upon a time I just had a dream

Monday, Oct 27, 2014
Posted by maedel in Projekte/Veranstaltungen

Since yesterday I do not comprehend the world anymore. Not that I understood it in peculiar, but there was that dream.
I clarify: I represent myself as an autistic lady, and I am therefore on the side of the autistic people. The dream was to do that together with you. With the professionals, the parents; and whoever knows me is aware of that. One need only read my blog to see how long I’ve cherished this dream.
However, the dream is being shaken thoroughly at the moment, and I can not understand why some react in a certain way to my latest article.
I have never attacked parents, at least not those who are advocates for autistics and seek to have an exchange with us. Those who do everything for their offspring. Who certaninly do not understand at once but try and see clearer through us.
You are the immediate advocates for your children, in some cases their mouthpiece, and therefore are also affected to the same extent as I am.
I do not mean to the same extent as autistics, that you cannot at all.
But just likewise affected by exclusion, pitying looks, incomprehension and sometimes helpless rage.
I myself am a female autistic, but also a mother; and I was always nearer to you as you might think. Even if I don‘t write much about my children.
I can also understand mothers with Kanner autistics, I myself have 2 children who are early childhood autistics. I know your concerns, share them sometimes and I understand.
Even if I do not inform about all the worries, they are still there.
I’m not just autistic, I am also a mother!
That was never different and it will not be different.
It’s about thosee parents who can not accept autistics as what they are, how they are and who they will be.
It’s about those parents who want to have autism “treated away”, etched away, or want to get rid of it otherwise. Who are dyed-in-the-wool and think they know everthing better. They stand up and say that ABA is good for their child and that it is exactly what “autistics” need. They think they know because they are parents.
These parents have never listened to us or are not interested in the way of understanding. They want to eradicate, banish the bad and have a child who is utterly “normal”.
And even with these parents I differentiate. There are still those in despair who also may be new and then immediately fall to wrong ones, e.g. an autism center that practises ABA.
Parents who do not know what to do, who want to see faster results, because THEY suffer. Mind you, they, and often not their children.
I can understand them.
I, too, have great concerns about my son, and I, too, send him to therapy. But not to change him. He is to learn to accept himself.
Somehow I can understand the desperation. As I said, I also differentiate.
Yes, as an autistic I can speak for myself, but I also speak on behalf of my children because they still cannot do that for themselves.
And you can do that, too!

It reads there, We are autism, and not, We are autistic.
Who has, then, asserted that you are not allowed to join, not shall have your say? You belong likewise.
Especially those parents that I really see as a mouthpiece, that really stand up for their autistic children; and I know that there are some out there … even some who write blogs.
Fight for yourselves, take a stand! For your autistics.
The same is true for therapists, professionals, regional associations etc., that do not share the opinion of Autimus Deutschland and what they show to the outside.
What prevents you from speaking up? All those who are also a member there or maybe functionaries. That you are members?
A Board of Directors consists of elected members and basically is a representation for certain interests. In the case of Autismus Deutschland it is an advocacy for autistics. Besides, an association always should act in the best interest of its members and respresent them to the outside. That direction is determined by its members.
Aren‘t you the base? The mouthpiece?

I know that there are some among you who definitely don‘t share the opinion of Autismus Deutschland, and who have not been happy with the selection of topics in the past.
Some regional associations make an enormously good job, and my reproach was not directed to those.
I also know that there are some among you who have always been trying to change something with the Board’s policy for Autismus Deutschland.
But the times of saying Please, please, have gone, haven‘t they?
I apply to all of you to do something against that!
Take part in the action Wir sind Autismus, or look for other ways.
Perhaps we will manage together to change something.

PS: I guess I’ve brought me completely into trouble with this article, or I have achieved what I wanted to achieve:


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