Aspies For Freedom

This reminds me of white authors exploiting minority cultures Kipling/Hearn-style by writing stories about minority people in a patronizing manner.

Hi Folks,

I do like this: ""I think it's nice to pick up a magazine that is really entirely devoted to many of the issues that these parents are facing..."

Clearly a magazine devoted to solving the problems we Autistics cause NTs.  I thought I was a little more than an "issue" for God's sake!

I guess being an "issue" is better than a cancer!

To accuse me of making a profit off of autistic children, adults and their families saddens me. Although I understand your plight it is not fair for the members of this message board to judge me unfairly. The honest truth is we don't do this for money. As a matter of fact we've been out for over a year now and have not made a single profit to date. I nor my publisher ever got into this with the intent to rake in large amounts of revenue. I'm not going to comment on your beliefs in the autism world. They are your opinions and I've always remained objective. I hope that you can all see why we're doing this.

Evelyn Ain's comments about making autism understood was meant to be a comparison of the knowledge the general public has about cancer, diabetes and/or AIDS. Those comments weren't meant to offend or hurt anyone.

I've never shied away from controversy. So if any of you have questions feel free to ask. I'll be checking this message board from time to time.

Thank you.

The magazine is not a non-profit organization, only because we can't operate under the restrictions of a non-profit. We are working on other projects other than Spectrum Magazine, in a few months we will be launching a magazine about Alzheimer's Disease. My publisher also has set up a 501c3 called The Ain Foundation, which is a non-profit. Any profit we do make will either be funneled there or used to help with other projects. The Ain Foundation will be used to fund research and also create fun activities such as the Cruise for Autism.

I've spoken to members of your organization before. I understand that you feel that you do not want to recover from autism/aspergers. You want this known and I can understand your point of view being that you feel like there is nothing wrong with having aspergers. Again that is how most of you feel and I'm not going to comment on that because I dont have aspergers. What I do know is that there is an overwhelming population of autistic children and adults who need answers and want some guidance and thats who we are trying to help.

It is common for businesses to take a loss or break even in the first year, but the type of losses we've taken most companies would not have proceeded. Other magazines and publishers would have took the loss and moved on to something else.

Evelyn and I set this up because we both had the same idea. She is a parent of an autistic child and she had a hard time finding what she needed in terms of therapy and education in New York. She wanted to create something that was easy to follow for parents that would help them understand what autism is and that they were not alone. In addition she wants to provide hope that autistic children do go on to have active lives. They shouldn't just be cast off and institutionalized, which unfortunately still happens in some parts of the U.S. and the world. At the same time I was a journalist who became more and more increasingly interested in autism. Originally I wrote specifically the lack of services in New York City. I wrote about children being left alone in classrooms because untrained children were frustrated by them. I wrote about immigrant parents who didn't know how to come forward and fight for their children. The list of topics I wrote about go on and on. It became about advocacy and writing for a newspaper wasn't enough. In 2000 I helped create a non-profit called Advocates for Autism Awareness. Which was a group of Board Certified Behavioral Consultants and attorneys that would help parents get the services they needed for children from School districts that didn't  want to provide any services. This is a service that is provided for free. The organization is still around in the New York City area and still helps people now. When Evelyn and I came together it was something that we knew we had to do.

I am certainly interested in writing about Aspies for Freedom. Maybe if you guys stopped bashing me for a second I can work on making that happen. A little jab back at you guys, but let me wrap up my next deadline and I will talk to AFF about doing something.

Evelyn takes awareness very seriously ... again she meant no harm to anyone. I strongly encourage anyone here to write a letter to the magazine we would publish it just as long as its not vicious in any way.

On the unproven cures. We've been approached by so many doctors or non doctors who say they can prove chelation therapy works. We've also been offered advertisements which we have turned down. I wish you guys would read the magazine before you make assumptions. We are looking into a story about all the bogus treatments. Usually when we get a call from someone talking about chelation therapy we start asking a lot of questions and before you know it we hear a dial tone at the other end. We are very careful with content. Certainly I am well educated about the subject of the magazine, but we have plenty of experts on our advisorty board that we refer to when we have questions.

Amy I hope I've addressed some of your questions. Again I can only hope you have an open mind about our magazine and what we are trying to accomplish. In the end we want to make the world an easier place for members of the autism community to live in through education and advocacy. Sorry if some of my answers were long winded.

to Cris Italia:  

You must understand our frustrations.  While there is a great need for help for family and children with asperger's, many of us adult aspergers face severe difficulties.  It is difficult to get a diagnosis as an adult and we constantly face prejudice especially in obtaining employment.  Perhaps you might also include some articles to show how we are marginalized and that people should stop discriminating against us.  

There is also a great difference between philosphies behind American social systems and other countries such as Canada and Britain.  We might like to say that we hope you are philanthropic in your intentions.  Since you are American we can also assume that you will need to make some money in your endeavor.  

"75-page glossy-cover journal"   We are just wondering how much of your publication is ads from pharmaceutical magazines.  

Perhaps you might invite some of the very talented in this forum to write some articles for your magazine, of course, for which you will pay.

Let me try to address the last few posts. First the Cruise for Autism. Basically this is a chance for parents and their children to go on vacation with people that understand what they are going through. A chance to go on vacation and not have other people give them weird looks and make rude comments. On board along with the usual staff there will be therapists and certified personel to help parents with their children. Everyone deserves a little time away.

We've written about the workplace and how aspies are treated differently once diagnosed. We've also written about those who do work and have been able to perform their job and companies that have embraced them even with the diagnosis. As far as the differences between countries, I agree there is drastic differences. Right now we are looking to expand into other English speaking countries. Currently we distribute in Vancouver and Montreal.

In reference to the question about our ads in the magazine. Right now wer are at 70 percent editorial content and 30 percent ads. We have ZERO ads from pharmaceutical companies, journals or magazines as you stated.

Perhaps I would invite someone to write something, but I have to tell you I'm not very encouraged by the comments on this forum. Those that have commented never gave me, my staff or my publisher the benefit of even reading the magazine before making a judgement. The magazine is a "75 page glossy cover journal" because we simply wanted to make it look good. We wanted a magazine that readers could be proud of and show to others. Secondly we wanted to make sure the NT's took us seriously and that we weren't just some journal started in the basement of a home somewhere. I don't appreciate comments like I am trying to make money off of the autism population and I certainly dont appreciate being accused of doing this for the "BLING BLING." I think thats a little harsh.

Eventually all of our articles will be archived on our website. We are currently constructing it and it should up and working by the end of June. Right now however you can certainly go on our existing page and order a copy of the magazine for yourselves. http://www.spectrumpublications.com

Amy I apologize for my departure from the chatroom earlier. It seems my browser just doesn't support it well enough.

First let me address disease and epidemic. I don't remember the last time I used the word disease when talking about autism. Autism is not something you can catch so if I've used it somewhere I must have been sleeping, because I don't remember saying it. As far as epidemic goes what do you call something when the cases shoot up from 1 in 10,000 to 1 in 166 in less then ten years.

I agree there is more known now as far as diagnosis goes but in the last five years the growth as gone frome under a million cases in the United States to well over two million now. I was very careful at first on whether or not to use the word, but the fact that there is no known cause leads me to believe that this is an epidemic. When you don't know where some thing comes from, but its increasing in enormous proportions ... I'm sorry if this is not what you believe, but the fact is medical professionals and educators are scrambling to make sure they are prepared for this. Unfortunately in some cities like New York, Portland and Chicago its too late. The growth in cases has overwhelmed school districts and the Board of Education.

When we first started the magazine it was intended just for parents. The publisher is a parent and she wanted something for mothers and fathers like herself to read and to understand. As we went national the audience became broader. We now include articles for everyone, including adults with autism, medical professionals, educators, etc...

The autistic community does include parents. Sorry we disagree here. How could you not include them? Are they not the ones who fight for services for their children? Some parents look after their children well into adulthood if they are low functioning. How could you ignore that? I've met some incredible parents along the way, not to include them in the "autistic community" would be wrong. While I know there are plenty of high functioning autistics and aspergers that go on to live active lives why would I ignore the parents who struggle with the issues that come with having an autistic child?

There are struggles. You can not ignore that. And I won't hear you out if you say that all autistic children grow up to be just fine and there is never any problems. Because thats just not true. I will be revisiting the Willowbrook case in the coming months. For those of you that don't remember Willowbrook it was an institution where before autism was better diagnosed, most children and adults with autism were institutionalized. At Willowbrook it was uncovered how these individuals were both brutally beaten and sexually abused.

So there is plenty out there that parents are concerned about. I don't think we can ignore the amount of work parents put into making sure their child can grow up to being as successful as possible. Again I'm sorry I disagree with you here, but its just something I believe in. But then again Uschi we are humans and we don't have to agree on everything. You have your opinions. You can write a letter to the editor anytime.

As for ordering the magazine, I assure you that he site is secure. As I've stated previously we are in the midst of a reconstruction, so maybe that is why you don't see the lock. We should be up and running with a new site by the end of the month. If you want to order immediately you can email us at info@spectrumpublications.com and someone will return your request.

To Brightman,

Again that comment was meant to make the comparison that Autism should be just as well known as cancer, AIDS and diabetes. Meaning we want the general public to understand what autism is. So that they can embrace it and understand. People usually dismiss the unknown, if we all knew more about it, as I said in another post, maybe people wouldn't be given dirty looks or unecessary rude comments.

I don't know about the magazine I you haven't read it but I don't like it because I am a human being and this magazine sounds like I you am not part of the world we live in but I am part of the Autistic World I you can't find the words to explain very good what I you feel I am not Aspie just Autistic I you want you to know I am 20 years old and Autistic and the magazine makes me feel like I you am from another planet. Sorry I haven't explained it well. What if I made a magazine the NT Magazine and included photos of NT's and wrote about it and at the end I you said it was written by an Autistic person? Maybe an Autistic person should write it because it's about Autism not the parents of an Autistic child I you feel only an Autistic person could include the best information in the magazine and talk about maybe they are happy Autistic too I wonder if there are people in the magazine who you talked to who want you to know they are happy Autistic did you include them too? It might be a good idea to include that too  :smile:

Tyler

I call it prejudice.  Everyone in my family for generations is either autistic or has some autistic traits.  It is clearly hereditary.  We are a minority group that has always existed, not victims of an epidemic.  Until recently, many of our children were classed as gifted, and "a bit hyper," with some behavioral problems that were often blamed on poor discipline, etc.  Society has now made the value judgment that we are "disordered."  This reflects a change in social attitudes, an increase of intolerance, not an actual increase of the autistic population.

edit: I recommend the Autism Diva website for an in-depth discussion of the fallacies in the recent "autism epidemic" statistics.

The schools should have developed better approaches to teaching children with neurological differences many years ago.  It is appalling that our children are thrown en masse into segregated special-needs classes and routinely drugged with dangerous behavioral medications as a stopgap measure to "control" our "epidemic" while governments fund genetic studies that are intended to exterminate us entirely.

Many of us are parents, Cris.  Don't patronize us.  I am a parent, Amy is a parent, Uschi has five children.  We know firsthand the difficulties of raising autistic children to be successful in a hostile and prejudiced world. And when you describe our existence as an epidemic and compare us to cancer, you are making it that much more difficult for our children to grow up with pride and self-confidence.  You are contributing to society's unwillingness to accept us as healthy, contributing, worthwhile citizens, and you are making it more likely that our children will face discrimination in the schools, in the workplace, and in every facet of life.

Please think again about what you are doing.

I see you have noticed one of our traits as autistics…we are brutally honest individuals. :grin:   We do not beat around the bush or talk to you with hidden agendas in mind.  What we say is exactly what we mean.  I know this seems very combative (and in your face) to most neurotypical folks, but that’s just the way we are which can be one of our difficulties when working and socializing in public.

I understand because you are not autistic you are having a difficult time seeing why we are bitter.  It’s just that we have been through so much ourselves.  Many parents fail to see that while they are thinking about molding their children into social NT replicas they are telling their children it is unacceptable to be themselves, like they are broken or something.  I cannot even begin to fathom the damage being done to young autistics that have parents that wish them to be “cured” of their autism - like they have a demonic possession or a disease or something  :mad:  

There are ways to allow autistic children to be themselves and still learn the things they’ll need to learn to survive in the world.  We just do not require all of the same things that neurotypical folks require to be happy.  My family and I do not understand the idea of “recovering” from autism because it is so much of who we are.   Without our autistic traits and abilities we would only be a shell of a person.  

You seem to be sincere in your endeavor to make this a magazine with the purpose to help parents.  I would like to read one of your magazines before making any comments towards it.  I hope that in the future, you will think about us, the autistic adults, as possible writers for insights on the autistic community and techniques of parenting.  I am also the mother and grandmother of two autistics – it runs in the family and is considered a trait to be proud of although we have had many struggles, too.

You see, you just can’t change an autistic person into something they are not, it doesn’t work that way.  You will only end up with a child/young person/adult that is depressed.  How could you not be depressed?  If you are pretending to be someone you are not?   I wrote about this on the autistics.org website   http://www.autistics.org/library/letspretend.html

As for the statistics on the “rise” of autism, this is another view perhaps you should read:

http://www.geocities.com/autistry/conspiracy.html

I wish to end by saying welcome and I hope you will continue to talk with us here at AFF and not become discouraged with all of our blunt, to the point questions.  We are literally fighting for our lives and the lives of future autistics (my family included) and this makes us very passionate about who is out there speaking about autism and what is being said.  

(Monastic jumping off her soapbox....at least, for the time being  :lol: )

Another person whose son was originally considered LFA clocking in here. This argument makes me somewhat annoyed, actually, I DO have experience of LFA, I was told my son would probaby never talk and had significant mental handicaps.

The cure-autism crowd would have people believe that 'us lot' have little or no experience of 'real' autism... that's just not true. :evil:

(oh and welcome from me, too! )

Is the ability to "move on" from one's natural identity a success story?  Would you profile someone who claimed to have dealt with and moved on from femaleness, or blackness, or Jewishness?  What needs to be addressed is society's ability, or lack thereof, to deal with its prejudices and move on.

There are also some areas of the world that are in the dark ages when it comes to educating girls.  Does that mean that we have an epidemic of girls?

The use of exaggerated language such as "epidemic" is not helping to achieve the goal of making better educational opportunities available for autistic children.  Instead, it is causing many parents to panic and to make hasty decisions that may endanger their children's health.  Kathleen Seidel recently wrote a thoughtful commentary, The "Autism Epidemic" & Real Epidemics, on why the word "epidemic" should be avoided when discussing autism.

Uschi, the link seems to be working now.  Perhaps the neurodiversity.com site had a momentary hiccup?

Cris, my post about the use and misuse of the word "epidemic" did not contain any personal statements concerning your intentions, your assumptions, or your thought processes.  I would appreciate being shown the same courtesy.

Thanks ASMan for your nice comments, I don't think the people in the curebie forums are too impressed with me, though!   :lol:

Years ago they used to have "operant conditioning" for severely autistic children. Do they still have that now? I didn't think much of it when I read about it and that was when I was about 10-12 years old as it sounded cruel to me. I think it was used to try and make the children speak. Just because a person doesn't speak doesn't mean they can't communicate.

Yes, a lot of us would be happier if we were not pressured into changing or moving on. I have certainly had enough of people telling me to "move on" if I lose something dear to me and take a long time to get over it.

I've had situations where I kept on telling people why I was reacting badly to changes without being consulted and they just wouldn't listen. Then they were surprised that I got so upset and tried to make my feel guilty for acting that way. As if I didn't feel bad enough about it myself.

I'm all for a magazine which contains practical hints for parents of autistic children but without the input of parents who have HFA themselves, it isn't going to give the best perspective on issues such as travelling with an autistic child.