Mom wants more info on Transition to Adulthood

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Yeah, question #1 isnt working. It wont allow you to select the same number for multiple questions.

The quiz won't work because the quiz is set up for a different type of test. You can only pick one bubble from each COLUMN not ROW.

I hope someone fixes this.

Okay, I'll agree. It is difficult for those with any form of autism to lead independent lives. Those with HFA or AS have a greater chance of success. With that premise (and with Tracker's input that "those studies are 20 years old", what is it that makes one person independent over some other person who can't seem to make it? How can I increase my son's chances of being those that can? It is his goal to live independently and be self-supporting. While it is also my goal, most importantly - for him - it is his goal. I don't want him to reach for a goal that he cannot attain, and yet without reaching - we never get anywhere.

Joshua 16 is incredibly bright and still very young, esp. by Aspie standards (maturity-wise). There still is so much time. Surely I can help him.

Then there is the whole discussion about whether to accept Asperger's as it is, or whether to medicate thus change, the Asperger's into a more 'productive' and 'independent'; dare I say 'acceptable' form.

Or the discussion about how a person does not "have Autism's" they are "Autistic". Accept it.

And, if you could take away the autism, would you be killing the person....

and other existential, philosophical questions.

FYI, for all those who care: I have a website for documents since you can't post documents to this site. The article I mentioned before is at: http://www.alt-eng.com/aspergers/links.php

This web site is just up today 6/20/09 so everything else is bogus.

--Ellen

Sunshower:

Those are the sweetest words I have ever heard. I am so incredibly touched. I too hope that he grows up - matures. And I hope he grows up and can reach his goal. And in my very best dreams, my two sons come back and tell me thank you. I have worked very hard, and I care very much, and I have had such a hard life, and I never wanted my kids to have the pain that many of you on this site have had.

Thank you - Thank you so much.

--Ellen

Re Survey:

There are two different kinds of answers you can give. The circles are for single answers. The squares are for multiple answers to one question.

If you are still having problems, then change your browser. I use a Mac, and love it, and found that for many things I need to use Firefox.

Please let me know if you still have problems. Remember if you attempted to use the survey, you cannot go back to it on the same computer. You will need to use a different computer.

I will post the results on my newly setup, yet very incomplete website - when people stop answering questions.

Thanks for your patience and responses.

--Ellen

Ellen, have you tried to fill out the questionnaire yourself? If so, which browser did you use? I've tried Opera, Firefox and Explorer and none of them work

What happens is you can't choose the same number for different questions. So if you select 8 for the first question, you can't choose 8 for the second question. It would only work if you tick a different number for each question.

For those of us having problems, would you like us to post our answers to the survey in this thread, and then you could enter them into the questionnaire yourself?

The reason people with AS are not employed is not because we can't, but because they won't let us. The vast majority of us are capable of working, or capable of working if given training and/or support.

You're not seeing the effects of Asperger's; you're seeing the effects of prejudice.

My transition?
I moved away from an an abusive home when I was 17 and went to an unaccredited college that functioned a lot more like a cult; they told you exactly what to do and when. They literally checked your beds to see if you were asleep at night--among other things. You had to ask permission to get married.

I got out of that after one and a half years because I have a huge sense of justice, and they were mistreating people. I transferred to another college. The first year in the dorms went OK, though I had no friends; after that I started being unable to organize myself, and started failing. That year I had my first friends. I spent a couple of hours a week with them. I eventually developed depression and was expelled after I was hospitalized for self-injury. I got back into the college after getting a psychiatrist's statement that I was sane, but they kicked me out again for failing grades.

After that I managed to rent a room. I ended up hospitalized again, though, and the landlady kicked me out of the room. I spent a summer sleeping on someone's couch; then one of the friends I had at the last college needed somebody else to help pay rent. Somewhere around this time I finally was diagnosed autistic. It helped me figure a lot of things out, but I was very annoyed because my mother had known since I was a kid and wouldn't get me diagnosed.

I had a lot of jobs during that time, but I would always get totally exhausted. I had no free time because I spent all my time recovering from my shift at work. I ended up quitting or being fired within three months, totally burned out.

I got my own apartment for the first time about two and a half years ago, at the age of 24. The apartment had fleas in it and the upstairs neighbors were noisy but it was my own and it was the best living situation I had ever had. I had gotten fired from yet another job and was worried that I would be homeless when I finally got SSI payments. They're just enough to pay for my apartment.

Eventually I managed to convince the bureau of vocational rehabilitation in my state that I'm intelligent enough to go to college, and the jobs I had were all expecting me to be good at what I am weakest at. I am good at learning; it was just that when I went to college before, I wasn't even ready to be on my own, and the stress overwhelmed me until I started failing, which triggered depression and a downward spiral. So they did a lot of neuropsychological testing and said I could go to college.

I have taken advantage of Asperger's people being stereotyped as intelligent to get into college--most of it is government grants; the BVR pays for textbooks and a few hundred dollars a quarter worth of tuition. I have to try to find my own scholarships and this means I have to keep my grades very high. The BVR won't let me fail a class at all because if I fail, they won't pay for me to re-take it, I can't pay for it myself, and that means no degree.

I get a lot of help from the disability services office at my college. They are very good at helping disabled students get through college; they have got quite a few students who are quadriplegics, or blind, or have got mental illnesses. There are about twenty-five people with autism, too, and I have met a half-dozen of them in a support group. Everything is wheelchair accessible; you can go anywhere on the whole campus without ever having to worry about stairs; and there are computers with adaptive software all over the place. I have a counselor who is teaching me to organize myself and study properly, and I am allowed to use the testing rooms to duck into if I am going to have a meltdown.

I learned to drive in January of this year. I learned pretty quickly, though people used to think I couldn't learn because I failed driver's education twice when I was sixteen. (Well, I got an "A" in the classroom, but I couldn't control the car on the road.) My own car helps me to avoid the stress of the assisted transport system, which is difficult to use because it is noisy and overwhelming and you have to call two weeks in advance and even then won't know if you have a ride until the night before; and because they can take two hours to take you on a forty-minute trip. I used to end up crying and bouncing my head off the side of the bus because it was so overwhelming. (Not hard.)

They have a sort of career office at the college, where you can go to try to find internships or employment after you graduate; and they have helped me find an internship this summer. Next year I am finally going to be a junior; so I am working with a professor who is studying mice to see what kind of interactions there are between diabetes, hypertension, diet, and circadian rhythm; and also studying what kind of long-term effects low lvel exposure to sarin might have, because people think that might cause Gulf War syndrome. They say I am going to help with analyzing the data and using immunohistochemistry to stain the tissue samples so they can see what's going on inside the tissues of the mice. I've only been there for three days now, but it is interesting and I've gotten to read some journal articles about the problem. I don't understand it all yet, but I think I know how the immunohistochemistry works.

One day I want to become a rehabilitation engineer. I'm fascinated with alternative and augmentative communication. Until now, communication devices have been pretty much designed for people with disabilities that are mostly or entirely physical. Autism is different, with lots of cognitive factors in play too, and that makes it fascinating; also there are people with mental retardation who have problems with speaking but maybe wouldn't have so many problems with some other way of communication. I think it's very important, because communication is the one thing that nobody else can do for you. Electronic communication devices are really expensive--I think five thousand or more in a lot of cases--and that's a big problem because that means that people who need them don't always get them; and low-tech methods are often either very slow or can only be used to communicate with somebody who has been trained to do it, not with just anybody. If you have a voice-output device, then anybody can understand you. If you could make them inexpensive enough so that people's insurance companies would stop trying to keep people from getting them, and make it less of a financial risk to let somebody try who they aren't sure can use one, then a lot more people will be able to communicate their own ideas and make their own decisions. I want to figure out how to make them cheaper, and make them easier to use for autistic people. It would be a very interesting problem.

I'm having the same exact problem, tried firefox and safari.

Seashell:

Ooooh. Now I understand. I am sorry. You are right. I chose the wrong option when setting up the question. I should have set up the question like the one about housing. Darn.

If I change it now, the survey will end, and a new one will have to begin.

Ack! So be it!

The new survey's url is: http://www.surveymonkey.com/s.aspx?sm=u ... ecMA_3d_3d

I fixed it. You will now be able to answer Question 1 as you want to. For those who have tried but could not answer the way you wanted to, please use the new link above to access the questionnaire.

If you click on the old survey, you will be redirected.


THANK YOU FOR POINTING THIS OUT IN A WAY THAT I COULD UNDERSTAND AND FIX

--Ellen

The study I linked was done in 2003, just FYI and all. That's not 20 years ago.

Yes, but the subjects were born 20 years ago. That makes a big difference. Even today, kids with Asperger's have to deal with a lot of prejudice. I don't think we'll see any sort of equality for another fifty years, to be honest--we might see our grandchildren get a fair deal.

Well no thats not what I meant. The study was done recently, but the people they looked at were diagnosed 2 decades ago. And the amount of difficulties required to get a diagnosis were much higher back then compared to today. So people who are diagnosed today are on average less detrimentally affected by their autism. As such the percentages gathered in the survey is not a good correlation to the percentages of people diagnosed today.

It is like looking at 20 year old ford cars and seeing that the majority of them have poor safety features such as no anti lock brakes or side airbags, resulting in a higher injury rate. And then concluding that all ford cars must have poor safety features. The fact is that ford cars from 20 years ago cannot be compared to ford cars today in terms of safety features. And the injury rate of 20 year old vehicles is not a good way to guess the injury rate of ford cars rolling off the assembly line today.

Like I said, it is comparing apples to oranges. Also the study gathered it's subjects from psych referrals which requires that the people studied have enough problems that they need to see a psych. It automatically excludes those who are doing fine and don't need to go see a psychologist.

Is that why people who are as intelligent and high functioning as Joshua were not diagnosed? They had no idea what, if anything was wrong/different with him. Even when he was seven, in 2000 they had no idea. Even when he was 10, in 2003 they had no idea. It wasn't until he was 12 that anyone even thought of telling me that there might be as dx for him. Four years before 1993 they would have had even less of an idea. The dx for Asperger's wasn't even around until 1994.

You speak the truth. I've tried to get a job many times but my monotone voice, lack of friendly banter and stimming behaviors had made the employers prejudice towards me.
I do pretty well in cover letters, so I get the opportunity for job interviews but after I just know that I wouldn't get the job.

Ellen, here's my story. I haven't had a smooth transition from adolescence to adulthood. I think I am still emotionally a teenager or much younger.
I am the quietest of all four children. My name actually means peace, because as a baby I was silent until I started to cry.
In school I had the lowest grades. I was too shy and embarrassed to ask for help from my teachers. Still, I managed to pass into the next year (grade).
My mum home schooled me for a bit but that failed. She finally saw how unteachable I was.
Between the ages of 12-14 I pretty much just did as I wanted. I did enough school work to keep the education board off my back so I didn't have to go back to school.
I did do almost a year at a christian school when I was 13, but I still did horribly. I did have a few friends though.
When I was 14 I felt bad about not going to school and my mum being worried about me so one day I decided to do pages and pages of long division, which was strange because maths is my worst subject. I don't remember how to do it anymore. I could never manage to keep math in my head for very long.
I also started to become more involved in church and make more friends, even though they would make fun of me for not talking much.
At 15 I started to go to TAFE (college) to complete year 10, 11 and 12. I was now talking more, making more friends and not doing that bad at my studies. Eventually the workload became too much and I needed my teacher to write a note for me so I'd still get my government benefit money. I dropped out of a few courses too.
I eventually got my high school certificate and my half-brother said I should take some IT courses then he could help me get a job at IBM. It was a good plan but it fell apart. I was traveling to the city, so waking up early and given a lot of homework that I couldn't understand, and still too shy to ask for help. Friendship was more important back in those days and I was bored with IT because I wanted to be a band photographer.
From ages 18-22 I built of portfolio of over 200 bands. I got media passes and worked for the top music website - it was only volunteer though. I also volunteered at a venue and became their house photographer. I didn't care if I wasn't making money - for the first time in my life I was good (if not better than most) at something. And I was famous in my town around my age group. I also made friends with people in bands because I didn't have many of my own. Not a single person in my town was my friend, but a famous band from South Australia and Wales were.
Then I fell in love. I didn't care as much about the bands. The boy didn't like this shy girl that was developing social anxiety. We broke up and I was diagnosed with severe depression, then re-diagnosed with social anxiety. I was afraid to go back to the city my ex-love was living in, but those bands I photographed were there.
All that time I was looking for work, but not getting anything. I didn't care then because I wanted to be a band photographer and hang out and do things young people my age did. But these days I try really hard to get a job. I have good resume, a stunning photography CV and I know how to dress the part for an interview - I fail at trying to sell myself. Far too honest and they always tell me I'm nervous. But that's how I always am; making repetitive body movements and either forgetting what I was saying or mixing my words up.
I was diagnosed with Asperger's Syndrome last year and it's helped me a lot. I know why I appear to be different, obsessed about things and alone most of the time. I also know that I'm intelligent despite being the worst student in any school I've been to and told I was slow by teachers.
I'm working with a disability employment network to help me get a job. They are trying to get me work with photography companies. I hope it works out. Maybe I should say I'm hopeful that it works out, because they are encouraging me to find work in what I love.
I also have another plan - to become the next J.K Rowling. - from rags to riches type thing. My mum is even encouraging by saying 'well if they don't give you a job you'll have to make money in other ways.'

Well, it includes people with Asperger's, which means they must meet the criteria of such now (which was included in '93). You'll find that most people who meet the criteria for AS will be of a similar severity (as per Attwood), it's just that support differs between those with the diagnosis based on too many factors to list. The adults in this study won't be any different than run-of-the-mill people with AS, and that's the point of these studies, to get a picture on outcome for the normal diagnosed population to aid carers and find areas that can be helped.

Autistic Disorder hasn't changed much since its inception in criteria; if you're diagnosed with LFA or HFA now, you would have been diagnosed with the same 40 years ago.

Calista:

So, if my survey only looks at the effects of Asperger's on employment and not what people with Asperger's are really capable of doing, how would I address that differently than I already am? I left large amounts of space so that people could tell me what they thought. Yes/No answers, rating scales and multiple choice answers are too simplistic to take in the totality of an individual esp. in 10 questions! That is why I tried to give people enough room to answer as much as they wanted to use.

With regard to your story of transition, I must say that I admire your fortitude and tenacity. It is really hard to negotiate the "system" without help. I am really amazed that you were able to get SSI and VocRehab to help you out. I have had trouble getting any help for my son, and I don't have communication problems to overcome to prove to someone that I have enough problems that they should help me.

I think your interest in your biochemistry job is fantastic. It's something that might be interesting to me, but ultimately I would be bored to tears with. It just doesn't move fast enough for me - I needs lots of stuff going on at once. Like I like to talk on the phone, make dinner and clean the house at once, or watch TV, play computer games and talk to my husband/son. It drives them nuts. So I make adjustments. But my point is that I would never be happy at such a job - and it really sounds like you are.

The other thing I wanted to comment on is your innovation and creativity in thinking about communication so much... so much that you are thinking of a device to help the non-physically impaired communicate. I think that such a device would be wonderful. My son Joshua has a very difficult time communicating feelings and introspective thoughts. He is fantastic (I am told) at communicating academic thoughts, but the inner workings of his mind are things he just doesn't have access to. It makes me sad because I would love to know more about him, but instead I am here learning about my son from all of you on wrongplanet, because I can't learn from him. I am glad that you are thinking of making something more inexpensive and able-bodied friendly. The world needs more people who are thinking about making the world a better place for ALL!

Thank you for letting me know your history. The survey is fixed if you want to take another stab at it.

--Ellen