Severe Autism

Page 2 of 3 [ 35 posts ] Go to page Previous 1, 2, 3 Next

Joined: 31 Oct 2005
Age: 40
Gender: Female
Posts: 4,833
Location: f'ton,manchester UK

22 Apr 2009, 10:49 am

Hello stephanielynnkeil,

am have seen across this forum,and another [uk based but with some US members,mixed disability] how difficult it is for anyone with disabilities in the US to have the options for living in somewhere that isnt an institution,or get any help at all.
in the UK,they had shut almost all institutions [LD/DD based] down in the name of community inclusion.

It does not sound fair that there is a waiting list for appartments with support.
they should be able to get an appartment anywhere suitable and available-and put the support in like they do here [some use direct payments or agencies to get their staff].

Would recommend moving to england if it was not so far,are offered a lot more services for severe autism/high complex needs,including in living/care.

am also severely autistic,lf,an ex council ld/dd institution resident,been through two very unsuitable residential homes,about to move out as well-into a newly built residential home for sev/autistics owned by a local autism organisation,.
There's quite a few on the severe side,or close enough,on WP,it's probably not helping with the forum being unpredictible lately [very slow,errors etc-will probably come across it if havent done already].

_________________
>severely autistic.
>>the residential autist; http://theresidentialautist.blogspot.co.uk
blogging from the view of an ex institutionalised autism/ID activist now in community care.
>>>help to keep bullying off our community,report it!

riverotter
Veteran
Veteran

Joined: 10 Oct 2007
Age: 56
Gender: Female
Posts: 970
Location: the frosty midwest

23 Apr 2009, 6:24 pm

Hii stephanielynnkiel- I was enjoying your blog and your excellent writing and your piercing insight. I was saddened to see that you took many of your posts down. Of course that is your right to do so. I recommended that my good friend read your blog also as I thought she would benefit from and enjoy it.

A little bit ago I took my whole blog down since I had spent so much time on it and I was sick and tired of people urinating on it with mean-spirited comments, but then it made me sadder to just have it simply gone. Until that point in the spirit of honesty I had been ok'ing every comment. So then I put it all back up and don't accept them all.
I hope you keep writing because it is so very, very amazing and beautiful.
Love,
riverotter

Liresse
Sea Gull

Joined: 14 Oct 2008
Age: 39
Gender: Female
Posts: 246
Location: Auckland, New Zealand

24 Apr 2009, 1:01 am

hi stephanie, welcome to wp

autism spectrum disorder is characterised by being hugely diverse and variable, guess that is why it is called a spectrum.

regarding your art and art supplies, have you ever considered doing digital art? that is currently my medium. there are big startup costs (tablet, computer), but it will cut down on the cost of art supplies... of course, this is not a substitute for a different medium and you probably don't want to change the way you have always painted. just a thought, because i am too poor to buy any sort of professional art supplies but still have the chance to do art stuff.

_________________
- Liresse

KingdomOfRats
Veteran
Veteran

Joined: 31 Oct 2005
Age: 40
Gender: Female
Posts: 4,833
Location: f'ton,manchester UK

24 Apr 2009, 10:30 am

Liresse wrote:

tablets are awesome,saw a pro one being used on a behind the scenes thing on family guy [BBC3] the other day.

if are in the UK,there's a organisation called computers for the disabled which will give a basic computer for free: http://www.cftd.co.uk/cftd.htm or make up a decent one for cheap.
only found out about them a few days ago on another forum.

Callista
Veteran
Veteran

Joined: 3 Feb 2006
Age: 41
Gender: Female
Posts: 10,775
Location: Ohio, USA

24 Apr 2009, 11:48 am

LovingTheAlien wrote:

VMSnith wrote:

ahem.
I think you have a bright future as a working artist.
Dayam.

Yeah, except that you need an awful lot of social skills in the art world

. I was thinking that as an artist you could sit curled up in your own little disturbed world, but alas, this is not the case. You need to promote your artwork (oh horror!) and you need to mingle with the right people (even more horror).
So unless you have an agent - but which struggling artist has? - you are really facing some challenges.

A family member might function as an agent. And there are organizations which promote disabled peoples' art. Have you looked into those? You don't necessarily have to support yourself with your art; few people do; but it's really rather a loss for the world if people don't get to look at your work.

Re. functioning levels--there's no standardized definitions for any of them. Some people say high functioning requires independence, others that it requires communication, others that it requires being able to independently dress and eat, etc. Realistically, the only way to describe your functioning level is to describe how good you are at doing various ADLs, from drinking a glass of water to holding a job, like Stephanie did in her introductory post. If you just say HFA/MFA/LFA, it's too ambiguous and can even end up giving people incorrect information if they don't define it the same way you do.

_________________
Reports from a Resident Alien:
http://chaoticidealism.livejournal.com

Autism Memorial:
http://autism-memorial.livejournal.com

Woodpeace
Velociraptor

Joined: 26 Mar 2008
Gender: Male
Posts: 474
Location: Lancashire, England

12 May 2009, 2:39 pm

Stephanie (who wrote the introductory post) has taken down her blog. She wrote that it was because she was harassed by people from "neurodiversity", who invaded her privacy.

I very much like her blog and miss it a lot. She is a brilliant artist and poet. In being very withdrawn, she is in my opinion more autistic in the traditional meaning of the term than extraverted people on the autism spectrum.

LabPet
Veteran
Veteran

Joined: 4 Jan 2007
Gender: Female
Posts: 4,389
Location: Canada

12 May 2009, 10:24 pm

Hello stephanielynnkeil: I liked your 1st post. I'm Dx'd w/ AS & HFA; a dual diagnosis, and have many commonalities with you. Being Autistic is hard but with advantages too.

Please visit the NV Special Silent Forum in the Haven - the topic is *stickied* You're very gifted!

I understand that you removed your blog/art.......Wrong Planet inhabitants are amenable to you as you are 'our kind.' Those who have posted before me as also similarly effected. Autism is a very heterogeneous group but with parallels. I am partly mute too. In my signature line check out my video clip.

Please come back and visit soon :star:

_________________
The ones who say “You can’t” and “You won’t” are probably the ones scared that you will. - Unknown

autismrocks
Butterfly

Joined: 24 May 2009
Age: 44
Gender: Male
Posts: 12
Location: us

26 May 2009, 9:50 pm

cyberscan wrote:

Welcome to Wrong Planet. I am glad you are here. :-)

Since I am a Kanner's Autie myself, I can definitely understand where you are coming from. There are a few of us on this forum. Age1600, Kassiane, and me are the three that I am aware of. You might also want to look at http://www.theautismperspective.org. Sharisa Kochmeister, an online friend of mine, is a nonverbal Autie who is editor of that magazine.

ia boy with autism,aspergers,pdd nos dxed w/ seizure disorder too i herd it commin with kids with autism to have seizure disorders my DAN doc tode me tat sry speech/spelling is off right now i do go to a to a speshell autism skool to help me and yung adult too i 28 boy

lionesss
Veteran
Veteran

Joined: 21 Aug 2008
Age: 49
Gender: Female
Posts: 1,305
Location: not anywhere near you

27 May 2009, 12:50 pm

Thank you for sharing this, and I am going to read your blog. I am interested in knowing more about you.

LePetitPrince
Veteran
Veteran

Joined: 2 Mar 2006
Gender: Female
Posts: 4,464

27 May 2009, 12:51 pm

I would like to see a video of yourself.

jemir1234
Toucan
Toucan

Joined: 24 May 2008
Age: 33
Gender: Male
Posts: 254

27 May 2009, 2:51 pm

Age1600 wrote:

stephanielynnkeil wrote:

Hello everyone. I am almost 21. I have severe autism with a high IQ so my diagnosis is autism; I go in between LFA and HFA depending on everything around me. People seem to think that HFA/AS are the same but from my experience they are very different disorders. Reading all of the posts here at Wrong Planet affirms my belief because you are all much more high functioning and different than I am (except for a few, and they have severe/classic/Kanner's autism).

I am very aloof, always have been and probably always will be. I am not interested in other people and am actually quite afraid of them because I don't understand them. The fact that a person has autism doesn't make me understand a person any better, either. I've never had any friends and I still don't. I only want ONE friend, but I haven't found that friend yet.

My mind is pretty much completely void of all social thoughts, of all thoughts of other people, and similar types of topics. I am very much curled into myself, much, much more so than I read about people with Asperger's.

I guess you could say I live in my own world. And as a child I completely lived in my own world, until I had a developmental spurt around 18/19.

I have trouble talking. I say that "words get lost somewhere between my brain and my mouth." I think the medical term is aphasia. I am able to talk but am very poor at it; I much prefer to type.

My language is very associative and metaphorical, so much so I am often the only one who can understand it. I make up my own words and languages and use them in my writing and speech.

I am also quite echolalic and much of my writing and speech is what I have taken from others and other sources.

My brain is completely visual/musical. I have many things here that I am unable to express in words: they are visual/musical thoughts and I am too severely autistic to express these thoughts in words but maybe one day I will be able to. So for now, I create works of art and music.

I "stim" severely, self-injure and engage in other stereotypical severe autism behaviors.

I recieve SSI and have been getting it since childhood. I am unable to hold a job and have never had one but I am now attending Voc Rehab so I can (hopefully!) get a job shelving books in a library, something I would love. I spent a long time in hospitals and institutions; got out at 18. I will never be able to live on my own but I hope to get my own supervised apartment one day (the waiting lists are long).

I would like to write more about my autism so that those who are interested will become more aware of it so that others like me can recieve appropriate treatment.

I have some more on my blog; the link is at the bottom of the page for those who are interested. :alien:

wow you sound exactly like me, evertyhign thing u said about how u go from hf to lf in seconds, how u had more severe autism as a child, i was def on the severe end of the spectrum, now more on the mdoerate side, i dont have a high iq tho, but how u said the words from ur brain to ur mouth dont work same thing, exactly same thing, its so similiar its almost creepy lol. I "stim" severely, self-injure and engage in other stereotypical severe autism behaviors. what u said right there exactly the same, doesnt matter where i am ill punch myself in the face or headbang against anything, which isnt good at all... im not into art tho, well as a older teenager i did poetry but love music cant sing or play anything tho, and have no interest in ppl either, but instead obsess constantly over sensory, huge sensory seeker. I also had a huge developmental jump around the ages of 18-19, it was so weird, but still stuck mentally emotionally as a 10-12yr old, and socially its either not there or is as appropriate as a 3-5yr old.

Either way welcome to the site, glad to have ya here hehe.

i dont havce severe autism, but every now and then when I get mad, U hit myself in the face until I get red. My mom gets worried. When I was younger I would use a squeaky voice to talk and my kindergraten teacher hated it and I went to speech class. I did it on purpose though, dont know why, but i did. at least I think I did on purpose, But anyways i just decided to talk normal one day lol. I met a guy once with mild sever autism, if Im saying that correctly, or maybe HFA. he was cool but kids pciked on him and called him gay. :cry:

Abstract_Logic
Veteran
Veteran

Joined: 3 Dec 2008
Gender: Male
Posts: 580
Location: Here

27 May 2009, 4:11 pm

stephanielynnkeil wrote:

I have trouble talking. I say that "words get lost somewhere between my brain and my mouth." I think the medical term is aphasia. I am able to talk but am very poor at it; I much prefer to type.

My language is very associative and metaphorical, so much so I am often the only one who can understand it. I make up my own words and languages and use them in my writing and speech.

I am also quite echolalic and much of my writing and speech is what I have taken from others and other sources.

I recieve SSI and have been getting it since childhood. I am unable to hold a job and have never had one but I am now attending Voc Rehab so I can (hopefully!) get a job shelving books in a library, something I would love. I spent a long time in hospitals and institutions; got out at 18. I will never be able to live on my own but I hope to get my own supervised apartment one day (the waiting lists are long).

I would like to write more about my autism so that those who are interested will become more aware of it so that others like me can recieve appropriate treatment.

I can completely relate with you about the aphasia. It is very difficult for me to speak spontaneously, as I am always 'running on scripts'. I have a difficult time with pronunciation, as well. However, I am otherwise very fluent, and I can comprehend simple conversations with relative ease while it is more difficult to comprehend and follow along with more complex conversations. I also have an exceptionally high IQ as well as an excellent writing ability. Naturally, one would think that if you can write fluently and intelligently then you would certainly be able to speak fluently and intelligently. Apparently, that is not the case, as writing and speaking are produced by two different areas of the brain.

My speaking language also tends to be very associative and metaphorical. People generally are impatient when engaged in a conversation with me, and understandably so, since my words also "get lost somewhere between my brain and my mouth." So, usually it takes a considerable amount of time for me to say what I want to say (and make it mean what I want it to mean), all the while I am embarrassed and feeling ret*d because of it.

I, too, am very echolalic, as well as palilalic. I tend to repeat my own words or phrases when speaking (which I believe is more related to my aphasia). I have learned my speech and writing primarily from reading books. Occasionally I'll receive a (most of the time) complimentary comment about how formal and pedantic my speech/writing is, and the reason is simply because I never learned any other way to describe what I'm thinking.

I am 21 and have been on SSD for almost a year now. I have held a job before, working in a restaurant as a dish washer, which allowed me to work methodically and with very little social interaction. As you can see, I would very much love to have a job shelving books at a library.

I don't have very many friends. I have a group of 3 friends who I only see and talk to very seldom. They seem to be the only ones who will accept my awkwardness and quirkiness. I do have a social network online, and I tend to make good use of instant-messaging services.

I am very intrigued by your post. We seem to have very much in common. I would love to chat with you on AIM or e-mail with you, whichever you prefer. I have a website that you can visit by clicking on the link below.

autismrocks
Butterfly

Joined: 24 May 2009
Age: 44
Gender: Male
Posts: 12
Location: us

27 May 2009, 4:20 pm

autismrocks wrote:

cyberscan wrote:

Welcome to Wrong Planet. I am glad you are here. :-)

i did look @ tat sight it aussie i likey it scribes me alot i resentley turn 29 :cry:

it depresses me anoter yeaur older I NOT WANT TO DIE ! !! !! !! !! ! i sared ! !! !! !! !! !! !! !! !! !!

autismrocks
Butterfly

Joined: 24 May 2009
Age: 44
Gender: Male
Posts: 12
Location: us

28 May 2009, 6:05 pm

LabPet wrote:

^ Do not be afraid, autismrocks. You are amongst your own kind here & level of functioning is of no real consequence. You'll be all right!

kan we talk ?? i wood like to talk to talk my call sign is autismrocks but my nik mame is rabbitt , rabbitt is good rabbtt wize!! !! !

ProfessorX
Veteran
Veteran

Joined: 8 Feb 2007
Age: 51
Gender: Male
Posts: 16,795

28 May 2009, 6:38 pm

stephanielynnkeil, don't feel bad as, initially when I was tested my IQ score put me close to classic autism like yourself yet, in some ways I'm not that close.Anyways, the point is I hope your able to find a great amount of support and resources here at WP which, will help not only guide you in your life but, prove to be very useful otherwise...

ProfessorX

dieseldouner
Emu Egg
Emu Egg

Joined: 26 May 2009
Gender: Male
Posts: 1

28 May 2009, 9:09 pm

autismrocks wrote:

LabPet wrote:

^ Do not be afraid, autismrocks. You are amongst your own kind here & level of functioning is of no real consequence. You'll be all right!

kan we talk ?? i wood like to talk to talk my call sign is autismrocks but my nik mame is rabbitt , rabbitt is good rabbtt wize!! !! !

I thought you were more partial to fish?

Page 2 of 3 [ 35 posts ] Go to page Previous 1, 2, 3 Next

Jump to:

Severe Autism Post Reply New Topic

Severe Autism