Why can't you just fix it?

So I haven't written here in a while. It's been a crazy few months, which I will update about in full later because I have other things I want to talk about right now.

I was browsing one of my forums today when I came across a thread about a college student with asperger's syndrome. A discussion was being had about how the RA could teach him a few basic social rules if he wished to help him be more comfortable living in the dormitories at the college. This led to one man coming in and posting the following...

"This is a genuine question and I hope it isn’t taken otherwise, but can Aspergers be resolved through therapy or some kind of social training? Went to a business dinner last night and had someone seated at my table who clearly had Aspergers, given the things described here. It was the most awkward night and frankly a waste of time for everyone else at the table to have to deal. I don’t understand how a 35+ year old man doesn’t understand that they can’t ask a woman out on a date three times in one evening when she obviously isn’t interested, can’t ask her if she does drugs, can’t ask if she has any interest in starting a business and when she says no, a half hour later ask ‘so you’re still not interested in starting a business’ and never senses anyone else’s discomfort as a signal to stop talking. I realize that people with this syndrome need to be taught how to act, but can’t that be done by parents from birth through age 18? I’m not clear on why this is an issue at college, for RAs etc. I also don’t understand how one can act this way and stay employed, except in certain very academic professions where academic knowledge trumps everything else -- he was in a financial field where the ability to hold a room matters as much as your intelligence. "

I provided for him the following response, which I wished to post as I think it may be helpful for others who struggle to understand as the man above did, and the desire to share this is my reason for updating the blog today...

"I understand why you'd ask that question. I know it's very difficult to understand. I have autism myself, but mine is quite mild and sometimes even I struggle when I am around people with much more severe autism than mine. Some autism symptoms can be helped through therapy, but the therapy required is intense, it is difficult, and it is very difficult to come by. As has been mentioned, asperger's was not a recognized diagnosis until not all that long ago and before then the people who had it were left with no supports. Even now we are well behind the times, my own wasn't diagnosed until I was well into my 20s because none of the doctors I had seen up to that point were educated enough on the subject to see it.

And let's say, for arguments sake, someone IS severe enough to be more easily diagnosed in this day and age... testing costs a fortune. It can be anywhere from 3 to 5 thousand dollars. Insurance usually doesn't cover it. Finding doctors that do the tests, especially on adults, is extremely difficult. Autistic people have a VERY hard time advocating for themselves and navigating this system that is difficult for normal people can be impossible for them, if they did not have the experience of trying to get diagnosed as children so that their parents could advocate for them (which I and your colleague obviously did not have, as autism diagnosis was too new when we were dependent children) it can be impossible to do.

And then let's say you get the diagnosis. Services for adults are almost impossible to find. I have yet to find ANY doctors, ANY services, and ANY help that actually applies to me-- it's all for children. Much of the medical world is under the impression that autistic children never grow up into autistic adults. Check your local library for books about autism-- I bet all but one or two of them will be about children. I've been actively looking for someone to help me learn how to cope with my autism symptoms since I was diagnosed almost two years ago and I have yet to even find a psychologist who feels equipped to administer talk therapy, or even a general practitioner who can manage to treat me when I have a cold without being grossly offensive because she doesn't have a CLUE what asperger's syndrome is and tries to tell me to just get over it. And if you can FIND someone to administer services for autism, it costs a fortune and-- you guessed it!-- often isn't covered by insurance.

And let's say you managed to get diagnosed AND find doctors to care for you (at this point you've probably won the lottery as well, so insurance isn't an issue)... autism is not curable. It often takes a very long time in very intense therapy to even see a marked improvement. It is a very, very difficult struggle.

I'm not saying your colleague isn't obnoxious and that he couldnt do better, but you have to avoid the impulse to liken him to a bratty child. Autism isn't caused by bad parenting and cannot be cured or even drastically improved by good parenting alone. It requires intense medical intervention, preferably from a very young age, and that intervention is EXTREMELY difficult to get. It's rare, it's expensive, there are a lot of quacks out there who still haven't learned about high-functioning autism and yet will try to treat you anyway and set you back further, and by the nature of the disorder it is very difficult for autistics to seek and coordinate care at that level. It's not just like your parents never telling you not to talk with your mouth full, it's like trying to permanently relocate to a foreign country where you don't speak the language and no matter how long you spend there you CAN'T assimilate. It's like trying to learn how to verbally pronounce words in a foreign language when you're deaf and can't hear what anyone is saying to you. Getting better than he is is the struggle of that man's life and is something he is going to grapple with, painfully, for the duration of his life. Try not to judge him more than absolutely necessary. It's not easy to be this way."

http://chaoticidealism.livejournal.com/88097.html#cutid1

Big News!

This past Friday, the University of Michigan Council for Disability Concerns awarded me with their Certificate of Appreciation at the annual Neubacher Ceremony. It was truly a beautiful experience. Not only was it a phenomenal feeling to have my work in disability advocacy recognized, but for once I felt like I was surrounded by "my people." I was in a room full of people who "get it" and who are as passionate about equality for disabled people as I am. People who aren't apathetic. People who know. People who feel the same fire that I do for service. Words can't describe the awe that I felt having been granted the opportunity to be a part of that amazing group of people for a day.

And now back to reality.

The all-female residence hall that I live in here on campus houses a program called the Adelia Cheever program. The Cheever Program holds meetings twice a month, and their focus is on global women's issues and social justice. I approached some people from the organization a couple weeks ago to ask if a presentation about autism might be interesting to the group, given its relevance to our community (as in, the fact that there are autistic girls in the group), and given the unique issues that women on the spectrum face. They thought it was a great idea, so I am getting to work on planning something. So far I am thinking along the lines of a presentation, but I think I am going to open with a true/false poll with some not-well-known autism factoids and some myths to get their brains moving and establish what sort of stuff they already know. I also know I want to include some movie clips, and the administrator of the group suggested going over a list of famous people with autism, so I will do that. And I am also working on developing a simulation which will make neurotypicals *FEEL* what it is like to be an autistic girl in a group social situation. So far I have come up with a way to simulate the lack of proficiency with non-verbal language and the delay that is sometimes caused in conversation due to auditory processing deficiencies + other relevant issues. So I am just working on polishing that idea up and including as much as I can without bogging them down too much for them to get the point. After we do that, I am thinking we'll have sort of an instructional discussion about how, as an NT in that sort of a situation, you can be kind and inclusive to the autistic person without being rude or totally derailing your conversation. It should be good.

I'll post more developments as they occur.

I hope the proposed changes to the diagnostic labels of autism in the DSM V are clarifying. I am getting tired of explaining repeatedly on and on into infinity that high-functioning autism is not low-functioning asperger's or any other such term which implies that HFAs have lower levels of function than aspies. Seriously. It gets pretty annoying to constantly have to convince people that my level of function is not inferior to theirs when I am consistently one of the highest functioning members of any autistic community I join (including those communities dominated by aspies.) Not always the highest, and I certainly have some major issues, but there is really pretty much nothing I can't do! Had I never been diagnosed I would have lived my life as an NT,gone to school, got a career, got married, had kids, yadda yadda yadda, and no one would have been the wiser, it just would have been more difficult. You cannot resolutely write me off as lower-functioning than people with asperger's just because my diagnosis is "autism" instead of "asperger's." That's not what those words mean and I am tired of having to explain it.

I read an article today about a protest in Ohio against Autism Speaks, and I wanted to share it with you. I've copied the text, and the link to the original webpage is below, which has pictures of the protest.

I knew that the neurodiversity movement had opponents, but I never would have imagined that these people would encounter the kinds of things they did. This is an important read.


Protest Against Autism Speaks in Columbus
On Sunday, October 10, ASAN-Central Ohio/Ohio State protested Autism Speaks' Walk Now for Autism on the Ohio State campus, a protest that lasted four hours and attracted media attention from ABC-6, 10TV, and independent journalists. (See the end of this post or click here for video footage of the protest.)

Approximately 15 Autistic individuals and cross-disability allies protested Autism Speaks' lack of family and community support, its high executive pay, its lack of Autistic representation, and its eugenic aims. Protesters heavily emphasized that Autism Speaks only gives 4% of money raised to families and local communities.

During the first half of the protest, protesters faced incoming traffic and held signs with slogans such as Listen to Me, I Have Autism, First Class Autistic, Second-Class Citizen, and Autism Speaks Does Not Speak for Me. Several interested individuals approached the group, some kind and supportive, others not. One such negative encounter involved a walker who claimed that Autism Speaks can't have Autistic leaders or board members because Autistic people are incapable of making important decisions.

During the second half of the event, protesters faced 18,000 walkers, many of whom were far more belligerent than those encountered during last year's protest. One walker screamed, "Are you all stupid?! You're all stupid!" This particular walker lunged toward the protesters and had to be pushed back by a friend and a walk official.

Others screamed, "You're a bunch of idiots!" and "How do you sleep at night?" Additionally, toward the end of the protest, a car full of walkers swerved at ASAN-OSU's faculty advisor as though they were going to hit her, and then drove off laughing. When protesters engaged in a dramatic reading of Jim Sinclair's "Don't Mourn for Us," a group of parents booed and yelled, "Go home! You suck!"

Protesters chanted at several intervals, with slogans such as Nothing about us without us! We don't need a cure! and Autism Speaks needs to listen! At one point, a group of cheerleaders grew quite loud in their chants, and protesters responded with, 2, 4, 6, 8, Autism Speaks discriminates!

Campus police and certain walk officials took great care to protect ASAN's first amendment rights, for which the protesters are incredibly grateful. So too did State Representative Ted Celeste stop by, listen, and share kind words with the protesters. The reporters were also very gracious and willing to listen.

ASAN-Central Ohio/Ohio State thanks those who were involved in the protest, including those who attended and those who assisted in planning. Individuals across the United States called and wrote cross-disability allies and Columbus media affiliates on our behalf, and many more spread the word via Facebook, Twitter, blogs, and other social media. So too did international members of the cross-disability community provide support and encouragement. Thank you. We appreciate all that you do.




http://asancentralohio.blogspot.com/2010/10/protest-against-autism-speaks-in.html

Twisted Sister

To add to my last post...



Proof that not all autistic obsessions are problematic! :P

Bullying

I don't think I need to tell anyone that bullying has been pushed to the forefront of the media lately, and specifically teens who commit suicide as a result of bullying. Given this, I feel compelled to share my own story in the hopes that it will be enlightening to others.

I was bullied relentlessly for almost all of my childhood. And it was never for anything in particular, it was just that I was "weird." I remember wondering what that could even really mean, and wishing they would be more specific so that maybe I could change whatever it was that made me so unlikeable. And when I wasn't being tormented, I was being shunned. Completely. I didn't have a friend in the world to reaffirm that I had value in the world of my peers.

I developed major depression. I don't think I ever seriously considered suicide, but I know I thought about it. Honestly I don't remember much from that time period, I guess I've blocked it out. I wonder if I would be alive today if things had continued on the way they were then. I am not sure that I would be. But in 9th grade, something intervened, and that is what I want to tell you about.

When I was fourteen I discovered Twisted Sister. Yes, the guys with the big hair from the 80's. I listened to their music and it seemed to be all about loving yourself and not caring about what other people think, and how you and what makes you happy are more important than anything anyone else can say to you. Not exactly a novel concept, I am sure I had heard it before, but for whatever reason THAT is what got through to me. THAT is what made the difference. I learned from Twisted Sister to separate how I view myself and my value from how I am treated by others.

This turned out to be a valuable skill. You may have already put the pieces together yourself, but I'll spell it out. I discovered as an adult, just this past February in fact, that the "weird" that got me shunned as a child and teenager was actually autism. It's not something I am going to grow out of, and unfortunately it is not something that adults handle much more gracefully than school children. I will probably always be bullied in some way, for the same things I was bullied for as a child. It may not ever really get better.

But now, it has almost no effect on me. It still hurts and it's still disappointing when people aren't kind to me, but I don't internalize it anymore. I know my value and nothing anyone can do or say can take that away from me. And I got that from Twisted Sister.

I wanted to write this because I see so many people feeling like they are powerless to help their children and their friends to cope with bullying. There is a way to get these kids through alive. It doesn't have to be some grand and complex cure-all that swoops down from the sky to save the day. It doesn't have to be something that we dismiss as unknown or out of reach. Little insignificant things can change a persons life, and you never know where the light at the end of the tunnel for someone is going to show itself. It can be a hug, a kind word, a dinner with family, an off the cuff remark, a coach, a priest, a grandparent, a pet, a sport, or even a musician. It doesn't take the hand of god coming down from the sky to smite bullies to get kids to develop the self-esteem and self-assurance to get them through life. All people, but kids who are dealing with bullying in particular, need to be exposed to as many positive influences as humanly possible. Because you never know when some seemingly insignificant little thing is going to make the difference, and it only takes ONE moment to change a life, and in some cases, to save one.

We can all be a part of the solution to this problem. You may be a parent, a friend, a neighbor, a coach, whatever-- whatever you are, you are something to someone. Use that relationship as an opportunity to be a positive influence. Because you never know if you could be the one that makes the difference. We have all seen enough news stories about children being put into caskets in their prom dresses because they were bullied to death before even graduating high school. We've seen enough. Don't let yourself be made to feel like you are helpless. You are not. It only takes the one positive influence that manages to break through. Just the one. That can be you.






And, on the other hand, it just takes one person, one moment, to shove someone that is teetering over the edge. Maybe one seemingly insignificant little mean thing you did can mean life or death for the person you are bullying. Don't be an idiot. Don't think that because you can make a mean comment about someone and forget about it five minutes later, that means that the person you hurt will ever forget. You never know, you could be the one that pushes a person to the breaking point. Just because you didn't purposefully stand right behind them and shove does not mean that what you did was not significant. Grow up and choose to do right by other people. Just as one person, one positive influence, has the power to save someone's life-- you have the power to push someone to end theirs. This is your chance to evaluate the way you treat people and whether or not you like what you do to the people around you. This is your chance to change. Take it.