New here, looking for some help...

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Hi everyone! My name is Ashley, and I am a sophomore in college. I do not have Asperger's, nor do I know anyone with Aspergers--which is why I'm here. I need your help. I'm writing a paper about the discrimination of people with Asperger's syndrome. I am looking for anyone who would like to share with me a personal account of discrimination (yourself, your child, or even a witness's account). If you are interested in sharing your story with me, please reply here or you can send me a private message. I can assure you that any information you divulge to me will be received in the strictest confidence, and I will not use any information in my paper unless I have permission from you to do so. I will not be using any names in my paper.

Examples of information I'm looking for include: trouble getting accommodations or IEPs in school, trouble with teachers who didn't understand, bullying, trouble obtaining work, etc.

If anyone has a problem with me being here for this purpose, please do not hesitate to let me know. I will leave if I am not wanted. I only wish to learn more about Asperger's syndrome and gather information for my paper. Any information would be helpful!!

Thanks so much for your time! Have a great day!
Ashley

By and large you can expect to not get in trouble for posting your request, but also are not likely to get much response. When someone does research that parents think will have broader impact, sometimes they contribute. But if they don't see a broader goal then why would they? Parents of AS kids are already living a beyond impacted life and given the choice between helping a parent struggling with their child and helping a student write a paper, I'd say it's a pretty easy pick.

Besides, if you invested time in reading the boards you'd find a lot of the information you are seeking. Why should we reinvent the wheel for someone's good grade? Do your homework. Read the boards. If you see compelling story you want to include, contact the poster and ask permission. But don't ask for more info ... if they want to offer that, you should let it be their idea.

Sorry if my tone is a little harsh. We're not against helping students, but priorities are priorities, and I don't think you understand what the lives of our parents look like. It's a bit like going up to a marathon runner before he's finished a race and asking him to talk to you about how it's going.

And, seriously, it's all here. Public forum; feel free to search it. YOU just have to do the work, instead of hoping the stories come to you, and then figure out how the copyright / privacy issues work when you find material you want to use.

I just want to say I appreciate your response, and I understand where you're coming from. I also want to let you know that I am a very conscientious student (my college professors have commented such to me) and am currently carrying a 4.0 cumulative GPA. I was salutatorian of my high school class....So, I'm not looking for someone else to do my work for me.

I do understand that you are all very busy, which is why I left it up to the parents to make their decisions about whether or not they'd respond. If they do, great! If not, that's fine too. I came into this forum with an open mind, knowing that I may or may not get people to tell me their stories, and I had planned to do some reading as well.

I have done quite a bit of research about Asperger's, and am only looking for more information. You see, I'm studying to become a teacher....and I'm considering going into the special education field, and specializing in Asperger's. Maybe become an aide or life coach, something like that. This is why I'm writing this paper, and looking to learn more about it.

I thank you again for your time, and wish you all the best luck with your children!!

Have a great day!

I respect your request Ashley. And if you are thinking of becoming a teacher, then there is certainly much to be gained from sharing our stories. What I can tell you anecdotally is that of the many families I know with an Aspie, about 1 out of 100 have a positive story to share about the education system - regardless of where they live; and based on my experience, most would say that enduring the constant and intense stress of advocating for our kids in the schools, has been worse than any other single aspect of raising a child with AS.

My son endured a life-altering, traumatic event at the hands of his teacher. You can read about it, and many of the other issues we've gone through, by going through the posts at www.welcome-to-normal.com. I would be happy to answer any specific questions you have if you want to PM me.

I suspect you may be looking for the wrong things. If you really want to know the critical problems aspies and auties have, I think you'd be better off looking for stories about trouble, not with explicit discrimination, but with dealing with neurotypical society in general and it's implicit assumptions - assumptions that are false about aspies.

Here's an example, chosen because it's quick to write up rather than because it's a particularly important one. My kids are signed up as volunteer test subjects at a couple of child cognition laboratories. Like many aspies, I find spoken communication very stressful, especially with strangers, so I much prefer written communication. So, I ask them to contact me by email rather than by phone, and to give me reminders the day before an appointment by email rather than by phone. I always respond when emailed by them, even if only to say I can't make it. They say they've noted my preferences in my records.

So do they do that? No, they don't - they still call me by telephone rather than emailing. This despite the fact that it greatly reduces their chances of getting my kids to come in, and they claim to be hurting for subjects. Voice communication is so ingrained into neurotypical society that they default to the telephone, even when they know - or should know - that it doesn't work for me.

Similar things happen in more important areas, like getting employment. Written communications like resumes are more representative of skills and experience than in person interviews, yet the resumes are only used as screening devices, forgotten once a person comes in for an interview. Getting hired in most fields is more about whether they like your face than whether you can do the job.

It's been a long time since I was in school, so I don't have a lot of school stories to tell you. Maybe if you post on some of the other fora, you'll get some. To give you one example, though, I'm sure my wife's aspieness probably had something to do with someone setting her hair on fire in high school, though. "Hey, I'm sitting behind the girl that's 'different' - let's try putting a lighter to her hair and see what happens."

I feel I need to clarify my intentions.

I am not here to offend anyone, nor to take their time away from their children. I don't want to insinuate that I want other people to do my work for me by sharing their stories. I'm currently taking a special education course, and we've learned about Asperger's. I've read other books outside of class, and seen videos and documentaries within and outside of that class. I have done my research on the topic, in general. Currently, I'm working on a research paper regarding the discrimination of people with Asperger's. I was given the go-ahead by my professor to do my research in this manner, by gathering real-life stories from people who have experienced any sort of discrimination, themselves or their children. This research that I am doing here is essential to my paper, since the books do not really discuss any discrimination. I have been scouring the different forums and discussion boards for information, but I do not have the kind of time to read every single post, by every single person, in every single discussion "room." I have a two week time period to gather information for the paper.

I have had some responses from adults who have AS, but were recently diagnosed. I was wanting to get some information about trouble with schools and school cooperation, since I am on the track to becoming a teacher (possibly special education). If no one wants to respond or share their stories, they certainly do not have to. I don't want to make anyone feel uncomfortable or obliged to respond. I wasn't sure, upon joining this website, what kind of and how many responses I'd get, and that's fine. I'm thankful for those I've gotten, but I respect those who choose not to reply as well; I understand that you all have a lot on your plates.

If I have offended anyone, please accept my sincere apology. That was not my intention. I continue to thank anyone who has already offered their help, and anyone who chooses to do so in the future.

Thank you again for your time.

Caitlin: I've sent you a private message.

psychohist: Thank you for your response and your insight! What you've said has been extremely helpful. I've posted on a few other discussion boards, and have gotten some responses from adults with AS who have been very recently diagnosed. No trouble with this, except I was hoping to gather some information about trouble that people with AS encounter at ALL ages, and have yet to receive a story of someone having trouble getting a school to cooperate (which, to avoid offending anyone, is absolutely fine!). I was just hoping to broaden the "horizon," if you will, of ages and stories.

I hope you don't mind, but judging by what you said I've assumed that both you and your wife have Asperger's. Is this a valid assumption? Do you work well together, since you both understand what it's like to have Asperger's? (again, feel free to not answer if you feel uncomfortable with my question!)

I can imagine your frustration with those who do not respect your wishes regarding preferred communication. I can relate to the part about the resumes as well. Personally, though, I feel that is at least partially discrimination!

Regarding your wife and her hair: Oh my goodness, how awful!

Thank you again!

I got your message Ashley. Through my blog and advocacy work, I've had many, many parents share their stories of immense ignorance and discrimination in the school system, and I can share those with you (maintaining anonymity for the families of course).

I am a firm believer that awareness and acceptance happens one person at a time, and then spreads exponentially. You are one person, and I think it is worthwhile for parents (who can) to take the time to share their stories with you.

For me, this is a more worthwhile use of my time than the frequent statistical survey requests we get here, because to me they miss the humanity and the heart of the stories that parents have shared with me. It's those personal stories that, to me, provide a foundation for the most powerful advocacy efforts.

I'm going to respond in thread, but uninterested readers please feel free to skip it, or tell me if you'd prefer I go to PM.

I feel fairly certain that we are both aspies, but this is based on on personal experience and scores on the autism spectrum quotient test, and not on formal diagnoses. That particular test is intended as a screening test but not a diagnostic test, as documented here:

http://autismresearchcentre.com/docs/pa ... tal_AQ.pdf

I am 51 and my wife is 40, so they weren't testing for Asperger's back when we were in school, and from a practical standpoint formal adult diagnoses are probably more of a disadvantage than an advantage in the job market.


Absolutely. Please understand that Asperger's is not really a disability, but merely a difference. Aspies don't think like neurotypicals, so it requires a great deal of effort on our part to couch our communications in terms that will not cause misunderstandings with neurotypicals. Likewise, many threads on this forum will attest to how neurotypical parents must make similar efforts to understand and communicate with their aspie or autie kids. It is absolutely wonderful to be able to communicate with each other as comes naturally to each of us, without all that extra effort.


Absolutely it is. The "burning hair" incident probably was too. However, it's not conscious or purposeful discrimination. Rather, it's neurotypicals making the assumption that everyone else also likes to communicate in neurotypical ways. That assumption is even valid most of the time, which is why it's so pervasive.

Just to reiterate psychohist's key point, Dr. Tony Attwood, who is generally viewed as the world's leading expert on AS, summed it up like this: "You don't suffer from Asperger's, you suffer from other people".

You probably know a lot of people with Asperger's, some of us figure out how to blend in. I think Asperger's is much more common than statistics would suggest, there are a lot of undiagnosed females here which supports the theory that the issues of many girls with Asperger's are dismissed by doctor's while boys are more likely to be diagnosed ... that should count as discrimination ... or maybe they're all women like me who grew up before there was such a diagnoses, I'm not sure.

Personally I've come close to losing jobs simply because I couldn't look every person in the eye and smile at all the right times. I've had complete strangers in the grocery store (many times!) tell me some variation of "Smile, it can't be that bad!" Just because the face I make when I'm trying to decide which loaf of bread I want rubs them the wrong way.

I'm sure you'll likely get more material than you'll know what to do with elsewhere on the board.

I noticed that comment in her post too Washi - it's a common misconception among NTs, that "they don't know anyone with AS". It would be more accurate to say "I don't know anyone who I know has AS".

Thank you Caitlin, psychohist, and Washi for your support!

And yes, Washi and Caitlin, you're both right! I should've worded that differently!!

All of you have provided me with great information that is very useful for my paper!! If I can come up with any other questions, I will definitely post them!!

Thanks again!

I am happy you found parents willing to help out

You know, I waited almost a full day before posting anything ... torn between telling you why you might be ignored, as you had been until then, v. just ignoring the sinking thread myself ... Letting you know that a little reading on the forum would help seemed like a fair thing to provide.

No problem!! I totally understand, and thank you for letting me know!

My son will be graduating next month. It has been a long road for him to earn his bachelor's degree. As his mom I have witnessed his frustrations, melt downs, depressions. School life was tough on him. His scholarship required he had to carry 12 credit hours per semester and to work. Not ideal for a person who gets easily overwhelmed, but he maintained, well really struggled. In his chosen field anything below a B was failing (added pressure).
In my son's case the instructors missed/didn't care how internally, over the top, overwhelming going to school was to him. Yes, he did seek their guidance and help. He did not label his feelings to them. The usual reaction was 'suck it up.'
I don't know if this helps you at all. It has been really hard on him. I'm glad it's over.