very confused about autism?? PLEASE READ PLEASE HELP!!

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hi please only reply to the post if you are going to READ it propley. im just very confused......

right, ive allways been "diffrent" but ive always been around "ignorant" teachers.
when i was in high school a therpist walked in and said straight away "think you have autism"... whats autism? thats what i thought for ages.
so etc etc, many meltdowns at school, i got refferd to a childrens unit by this therpist referd me to a childrens unit over the summer holidays (6 weeks) where children with mental, anxeity, depression problems go to. (i still went there a month or two after i started school)
it was a very nice place, the building was very fancy, very massive windows at the entrance, transport was provided every morning there and back from about 9 am til 4pm taxi's , there were other ones there that i still dont quite understand.
so anways, i asked a staff one day there about my "autism" (i didnt speak, wrote, i never verbaly spoke there) , she said she would look into it for me.
and eventualy on a day where i was due to be at school i think, they took me back there "for a autism test" , before this, i had EXTREMELY limited 2! ONLY 2 ! IQ test sessions, which wasnt realy "IQ" testing, it involved me matching pictures of things like a rubber duck with a rubber duck identical to it on the top page, a ball to a identical ball on the top page..etc..etc... , and maching these blocks with the ones pictured! and they guessed me to be "averege/high" intelegence from that.! although im extremely none verbal! thats where the diagnosis started to go "down hill" as in they were incuding that testing as part of the diagnosis..

i was taken to a room, where i had NO IDEA what i was suppost to do, they were recording me with a proper video camera, and i mean a massive camera on a stand! so i had to literaly sit on my hands because i was scared of what they would think or what they were doing recording me or where would the footage go! they told me it was "all part of it" so basicly for about a hour i sat there motionless, staring at the desk as they tried to get me to do various things, which involved, reading a very basic looking childrens book outloud to them, which i couldnt do, because they were trying to purpusly expose some autism traits on video by having the blinds open glaring the sun at my eys and the table.
and then the woman next to me tried to get me to choose a toy out of this box, and i didnt understand why. i stayed motionless, controlled my stims, and sat and staired at the table for the whole session.
and because of all this is why i got the "HFA ASPERGER" diagnosis AND HERES A FUNNY PART - THEY WERE BASING EVERYTHING OFF THAT 1 HOUR TEST, THEY WERE JUDGING MY ENTIRE AUTISM OFF THAT ONE TEST! WHICH INCLUDED THINGS LIKE "STIMMING BEHAVIOUR" "MELTDOWN BEHAVIOUR" "AUTISTIC TRIATS.....UM RIGHT, HOW WOULD I SHOW ALL OF THOSE IN A SESSION? I SERIOUSLY TRIED TO STAY AWAY FROM THOSE BEHAVIOURS BECUASE I KNEW I WAS BEING FILMED. SO HOW AND I MEAN HOW, ESPECIALY WHEN THESE THINGS ARE ONLY TRIGGERD BY CERTIAN SITUATIONS CAN THEY JUDGE MY ENTIRE DIAGNOSIS OF THAT 1 TEST?? I WAS TOLD TO SIT ON MY HANDS BY MY MUM SO I DIDNT HIT MYSELF AND THATS WHAT I DID.
some weeks later, i got these papers saying about the test, which all seemed to say things like " averege... standard, ( now this is the realy funny bit!! ) CHOSE NOT TO TALK" and mostly seemed like it said i wasnt autistic at all, and then woman who was sitting next to me at test (also the woman who i would interact with alot at the childens unit (i had diagnosis there as well as this section ) ) i asked her to explian it by verbalising "dont understand" . she explianed to me by reading it and saying "hmm... yes ***my name**** you are autistic) they barley got any information from my childhood of my mum, and my mum at the time thought high functining autism ment suverley autistic and that low functining autism ment very mild autistic so she keep telling them when they asked that she agreed "that i was high functining" my mum recently told me that she wasnt explained to about what she was agreeing to being asked about!! !! ! my mum strongly agrees/belives that i am suvere/moderetely autistic.

AND THATS ALL I GOT TOLD!! i didnt get any sort of explianation!! !! !!
went to therpay and i got handed these printed out booklets "living with HFA and asperger syndrome" WHAT??
writing is the only way i can speak! i can barley verbaly speak! .

now about the whole "but you cant be non verbal! you can type! " thing........

i have had years and i mean years! of TYPING EDUCATION SINCE I WAS ABOUT 3 YEARS OLD ! IVE BEEN TYPING FOR 16 YEARS! (im 18)
over the years i have learned alot about " abstract typing concepts" but not spelling my spelling is still very bad and i keep using typing programs to fix my words (altough it dosnt always fix all wrong spellings )

- i have extreme sensory problems.


now reasons why i am NOT - HFA or aspergers.

- im extremely non-verbal
- im very very not intelegent, i struggled EXTREMELY in every subject at school exept art (my talent, see profile/avatar picture.. i drew that.)

- i self harm daily, somtimes without even knowing it!

- i beat my legs sensless with my fists, again somtimes without even knowing it!

- i slap my hands on my head hard. again again, somtimes witout even knowing it!
- (NOW IM NOT saying pepole with HFA or AS dont do this to!! ) - i wonder, and i mean wonder outside. somtimes i dont even realize im doing it, quite often im not wearing shoes ! i will just open the front door and run, my mum has to keep doors locked and hide the keys!

- (again im NOT saying pepole with HFA or AS dont do this to! ) i make NO eye contact. very raley any at all!

- i have VERY strong sensory seeking behaviours.

Hi, Okay, well that hour-long test seems pretty lousy. In fact, it looks like they had their minds made up ahead of time and the test was just going through the motions.

I take it your main goal is to get appropriate services which are actually helpful for you?

I also take it you're living in the UK? since you refer to your mother as mum (here in the States, I refer to my mother as mom)

I think there's a lot more happening in the UK than in the States as far as autism self-advocacy and also as far as awareness and education among average citizens. Obviously, obviously, still a lot of work which needs to be done.

It sometimes helps to have a nonfamily advocate in addition to family members like your mother who is also your advocate. The nonfamily member is less vulnerable to insults and tricks which service providers sometimes run, and not always intentionally, sometimes just because the service providers don't want the extra work or don't want to acknowledge that they have made a mistake.

So, one, I'd really recommend seeing if there's a self-advocacy group in your city or rural area, or in a nearby city.

And then, you might be able to address services in two stages. See what services are available right now given your current diagnosis. Afterall, the services should be provided in a respectful way by asking you what actually helps you. Should be, doesn't mean they will be, but you might get lucky and get a pretty decent direct service provider. This we might call the here-and-now strategy.

If you aren't getting helpful services, then the second step is formally going through the steps of requesting a new diagnosis. This we might call the go-back-to-square-one strategy.

And maybe, maybe, with someone actually trying to be helpful you can do both of them at the same time if needed.

I actually hope for the day where most people on the spectrum are respectfully diagnosed as medium-functioning, and the help and services needed are decided by asking the person and really listening. And this can be by laptop and typing, or by speaking, whichever the person on the spectrum prefers. I am also interested in the idea that people on the spectrum can be offered sign language lessons and see if we like that. And some of us might like this and some of us might not, and that is perfectly fine.

PS Do you prefer a laptop because there's less flickering light, or is a desktop computer also usable and handy as well?

You do seem more toward the autism side of the spectrum, but at least you can talk by typing or writing. That is a big help.

- You need to print out this post you made that lists all the problems you have been having, both with your autism, and with the testing programs, and show it to the service people and psych docs to see if you can get an updated diagnosis, and then more appropriate help.

- You also need to tell them that you "talk" primarily by typing and writing, so they will need to let you do that when you have dealings with them.

- You also need to tell them to explain things to you, when they want you to do stuff like take tests, so you will understand what is going on, and what they want you to do.

- Regarding your old desktop computer--It is possible that there is malware on the comuter. Your brother needs to have it checked for viruses, spyware, and other nasty programs that may be responsible for making the machine act up. Because it is old there may also be problems with some of the parts under the hood. Perhaps the fan is dead or dying, and the PC is overheating. There are other things that can be causing a problem, too. Maybe you could ask a computer savvy college kid to check it out and help with any fixes in return for some home cooked meals.

Hope my suggestions help.

Wait, did you purposely hold back on the stimmimg when you were being tested?

If you can talk and type (the ability to), and you aren't constantly rocking, they'll tend to see you as AS over autism. People with AS can show all of the symptoms you list, and they can be just as bad or worst.

Ugh, how annoying. I'd go nuts too if they did that to me. Not cool for them to touch you like that.

Does your card say "please don't touch me; I'm touch-sensitive"? If not, maybe it should.

if my diagnosis was changed to asperger syndrome I think my mum would do somthing to sort it out. Is your mum going to help sort it out?