Helen ([info]llamaseatwork) wrote,
@ 2005-05-25 01:53:00
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Current mood: thoughtful
Current music:none

Negative Press
After the joys of the this and Daniel TAmmet giving some possitive press towards Autism, Autistic Spectrum Disorders, and getting rid of the Rainman picture we are again in the world of negative press regarding ASD.

However Next Thursday a programme will be shown on Channel 4 called "Make me Normal" saying that people with High Functioning Autism and Aspergers Syndrome are problem children.

Half the problems occur by being misunderstood, getting fustrated. How can we help it if we don't understand. My SAL development may have always been ahead of my age and I may be clever. I may have an amazing memory, but I still get fustrated and stressed. I can't express my feelings. Even for myself to experience "Happy" or "Sad" it has to be extreme. I only smile when I giggle. But that is me. That is what being autistic does to me.

I pay for everything, like my memory, by being autistic. And you know what. I sometimes wish that I could deal with Loud music and being able to not panic when anyone gets on the seat next to me on a train or bus. But I can't.

Sometimes I am glad that the progress I have made in term 1 and the beginning of term 2 is still here. I am learning socialisation skills. I want to be able to but this is skills at age 20 I STILL need to learn.

But there is one thing. I never wish to be NT (NueroTypical). I have my gifts and if the flip side of that is ASD. Give me the ASD anyday. Sometimes I do get selfish and wish to be more Autistic, but that is only then I could be able to get help with things, like cleaning, tidying and organising that I do need, I do have problems with. And also so then I would have never had the "problem child", "naughty" or "disruptive" label I had in Primary School. (By being more autistic I mean having the Speech Delay that would have classed me as having HFA and not AS)

I had to learn to adapt on my own, to a world that doesn't understand. A more understanding world would have meant I could be me, not pretend to be someone who I am not. I had to learn things that other children had learnt. It meant that by the age of 20, I was still not completely ready to move out.

I am still learning things. I still need someone at the end of a phone for me 24 hours a day. I need people there for me alot. But for one I would never, not now, be anything other than myself.

And if you think Autism is completely negative. Without it there would have been no Einstein, No films like Jurassic Park and Shindlers List, no Newtons laws.

No two autistics are ever the same, no two people otherwise are the same.




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[info]davidjoates
2005-05-25 01:39 am UTC (link)
We love you Helen, and always will.

I'm still in the process of figuring out ASD, and how it affects you, but I'm trying, and learning a bit more all the time. I know I don't always hit the mark in understanding, but I'll always try.

Yes, it can be frustrating, on both sides, as well as stressful, but we both know it's also been rewarding.

And yes, media organisations need to be kicked into the middle of next week for some of their portrayals, and the people behind these programs aren't motivated at all by any ideas of responsible journalism, but a need for sensationalism.

Hang on in there, and don't be afraid to lean on us - you have a lot of people supporting you, who would drop everything to be with you at the slightest prompt.

David.

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[info]lezli
2005-05-25 10:28 am UTC (link)
You have very much hit the nail on the head.

Before we lived in a world of shutting people away and pretending these disorders didn't exist. Now we live in a world of try to cure autism, gluten free diets and doing everything to make you "Normal", whatever that is.

I think it gets to the stage where you realise that there are parts of your personality you want to keep, that came with the supposed disorder. And if they "cured you" or made you "normal", who would you be? You wouldn't be yourself, and that is what people fail to realise. My dad really pissed me off the other night with a comment along to lines of "You have come a long way, but there's still quite a way to go."

There are all sorts of things they do not understand at all. Like they don't seem to realise that a lot of the problems they put down to Aspergers were caused by people bullying you, taking the piss, messing with your head through sarcasm etc and generally not being very understanding. Really serious verbal bullying in early high school (e.g. people constantly telling me they hated me etc) has left a lasting impression on me for definite. Yet the general answer certain people have is "Get over it" or "Get it out of your nature." Something that really does help is when people take time to ask you questions, to listen to what you have to say and try to be understanding. I do have 2 or 3 really good friends now who do that. 1 of them has dyspraxia and had major problems in school, walked out at 15, while another is simply a very tuned-in type of individual (is into spiritual stuff and all that). I value all my friends, but there is nothing like people who listen to these things and understand them.

I think we should find a few Aspies who can e-mail Channel 4 and complain about this broadcast. It is ridiculous!

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limitations
[info]danfrog
2005-05-25 05:25 pm UTC (link)
Look... It's never too late to learn new skills. i learnt the majority of my social skills in the past 18 months. Wereas before i could live quite happily without folk around me... these days my safty is with my housemates. without them i am nothing. they make me whole.

so u feel misunderstood... so does everyone in some form! (whether they conciously realise it of not!)

I don't pretend to understand you. the fact is... i don't want to understand you. and i don't mean that in a nasty way. sometimes it's best for the deeper sides of folk to remain hidden. (keeps thing simpler that way.)

on MSN you could be mistaken for 'normal' (whatever that is).

Keep ur chin up.

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Re: Negative Press
(Anonymous)
2005-05-28 09:08 am UTC (link)
I'm the mum of a non verbal autistic 5 yr old boy. Helen is a much valued member of an ASD forum I use which is mostly frequented by parents. It is so good for us as parents to have Helen on the site. I for one value hearing things from her perspective it helps to remind me that my son's diagnosis isn't all about my own feelings. I am not looking forward to this programme either I am worried that it will misinform.
2late4goodbyes your opening paragraph struck me too. You are so right.
My husband and I decided when our son was diagnosed at age 2 that we weren't going to do any therapies/diets on him. We just wanted to love him for who he is. His school frequently comment on how happy and gentle he is and I am convinced that this is because we have never tried to force him to be something he isn't. We just adore him as he is.
Jasmine

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[info]jimn2k
2005-10-12 06:42 pm UTC (link)
I am also a HFA individual. Sometime in my earlier years, I felt like dragging myself through the mud would somehow help, like there was someway to be included.
It wasn't until my senior year in high school (not too long ago, actually) that I learned what it truly meant to be autistic. Unfortunately, it was whilst staring at an entry in the DSM-IV. Being raised in an environment where people tell you it either gets better or worse, show you the horror stories and convince you that this makes you a lesser person, I had felt hopeless. My lacklustre academic record exacerbated these feelings.

In acknowledging my autism, I sometimes feel like it is suppressed and in suppressing part of me, I feel (quite frankly) fake. My neurodiversity feels like the greyest grey, like I have no business saying I am autistic. But I am, and I don't know how to accept that.

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